Living Through Loss: Interventions Across the Life Span 9780231550215

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living through loss

living through loss Interventions Across the Life Span

 2nd Edition Nancy R. Hooyman, Betty J. Kramer, and Sara Sanders

Columbia University Press New York

Columbia University Press Publishers Since 1893 New York Chichester, West Sussex cup.columbia.edu Copyright © 2021 Columbia University Press First edition published 2006 All rights reserved Library of Congress Cataloging-in-Publication Data Names: Hooyman, Nancy R., author. | Kramer, Betty J., author. | Sanders, Sara, author. Title: Living through loss : interventions across the life span / Nancy R. Hooyman, Betty J. Kramer, and Sara Sanders. Description: 2nd edition. | New York : Columbia University Press, [2021] | Includes bibliographical references and index. Identifiers: LCCN 2020057743 (print) | LCCN 2020057744 (ebook) | ISBN 9780231193245 (hardback) | ISBN 9780231193252 (trade paperback) | ISBN 9780231550215 (ebook) Subjects: LCSH: Grief. | Bereavement. | Loss (Psychology) | Counseling. | Social service. Classification: LCC BF575.G7 H66 2021 (print) | LCC BF575.G7 (ebook) | DDC 155.9/37—dc23 LC record available at https://lccn.loc.gov/2020057743 LC ebook record available at https://lccn.loc.gov/2020057744

Columbia University Press books are printed on permanent and durable acid-free paper. Printed in the United States of America Cover design by Elliott S. Cairns

In memory of my son Chris, my husband Gene, my parents, my brother Tom, and my friend and mentor Naomi Gottlieb; and in celebration of my family: Mani, Kevin and his partner Jenny, and my grandchildren, Gus and Leda. And in honor of the millions of families, friends, and colleagues worldwide who are grieving the deaths of individuals from COVID-19. (Nancy) In memory of my sister Barbara, my brother Jimmy, my father, my grandparents, and the deceased elders and their family members who have shared their journey with me. I also dedicate this book to all living beings who are suffering and to all those who seek to alleviate that suffering; and in celebration of my family: Jim, Jenner, and Clariel. (Betty) In memory of my grandparents and in appreciation of my mentors who have guided me throughout my career in end-of life-care, Dr. Patti Anawalt and Angela Dohrman who shaped me early in my career and continue to be my professional inspiration. In this book, I celebrate my children Adeline, Kjirstin, Josephine, and Soren. May they have compassion throughout their lives to the losses of others. (Sara)

CONTENTS preface acknowledgments Introduction

ix xxi 1

1

Theoretical Perspectives on Grief

17

2

The Grief Process and Types of Grief

38

3

Resilience and Meaning-Making

65

4

Loss and Grief in Childhood

86

5

Interventions for Grieving Children

112

6

Loss and Grief in Adolescence

141

7

Interventions for Grieving Adolescents

165

8

Loss and Grief in Young Adulthood

189

9

Interventions for Grieving Young Adults

215

10

Loss and Grief in Middle Adulthood

243

11

Interventions for Grieving Midlife Adults

272

12

Loss and Grief in Old Age

298

13

Interventions for Grieving Older Adults

320

14

Professional Self-Awareness and Self-Care

344

notes

355

references

477

index

559

PREFACE

We wrote this book because in our teaching, practice, and scholarship we recognized the centrality of loss in individual’s and family’s lives. Although health and human service professionals work daily with people who are grieving, they often are inadequately prepared to address loss and grief in their own lives and in the lives of those with whom they work. Many professionals bring into practice a history of loss and trauma, which can adversely affect clinical relationships and outcomes if left unattended. A theme throughout this book is that loss is universal and pervasive, a daily occurrence in the lives of individuals, families, and communities. Yet we live in a society that denies or pushes death away, acknowledging the greatest loss only briefly, with a short bereavement leave, and then expecting the bereaved to move on quickly. Relatively little societal recognition or rituals exist for other types of loss, such as adoption, divorce, sexual assault, chronic illness, immigration, relocation, or retirement. We also were motivated by our own personal experiences of loss, which have profoundly shaped our views of the world, relationships, and ourselves. We are no different from anyone else who has confronted the losses of separation, divorce, unemployment, adoption, abandonment, illness, and death. We step outside our scientific and scholarly roles to share our losses with you, not because they are out of the ordinary or deserving of sympathy but because we want to enrich your learning by interweaving the personal and professional in this book. As we discuss various aspects of loss and grief, we frequently illustrate theoretical points and research evidence with our particular configuration of losses and how we have integrated them into our lives. We believe that we learn mutually from each other rather than from a hierarchy of student/teacher, author/reader, or therapist/client. We will be more effective professionals helping others deal with loss if we are able to personalize loss. As you discuss this topic with friends, students, and colleagues, you too can bring a depth and richness to the dialogue by sharing your losses and how you have chosen to address them. Our personal and professional lives are

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inextricably intertwined when dealing with loss and grief, the most common and yet the most mysterious of life’s lessons. The first edition of this book was written in the wake of the September 11 attacks, which influenced societal views and responses to traumatic death and collective loss. It opened doors to greater discussions of trauma, devastating loss, and our own mortality. This second edition is written at a time of significant societal transformation as we face increased numbers of deaths and other losses from the coronavirus pandemic, global warming, police brutality and hate crimes, gun-related homicides and suicides, and refugees fleeing unsafe communities. Today’s world has become more dangerous, less certain, and more unjust in the eyes of many people. Not a day goes by without our hearing about some form of community loss. Whether the loss is from a mass shooting in Las Vegas or in Parkland, the death of African Americans by police officers, natural disasters such as forest fires, floods, or severe winter storms, or unemployment for millions of American workers due to the coronavirus pandemic, we are becoming accustomed to daily exposure to the horrors of our world. The magnitude of the number of people who have died from COVID, which is disproportionately higher in the United States, makes the world feel dangerous. Because of the timing of the writing of this book, we are unable to discuss in depth the ripple effects of loss created by the coronavirus pandemic, since research on COVIDrelated losses and effective interventions is just emerging. Where early research is available, we have woven it into the discussion of different life stages. We encourage you to be attuned to addressing the multitude of pandemic-related losses in your future research, teaching, and practice, and to honor the “empty chairs at the table” that students, clients and colleagues may face. As social workers, we need to consider how the larger societal context shapes our work with grieving individuals, families, and communities. Many individuals may become so inured to the suffering of such losses that they see them as normative rather than significant life events that leave us forever changed and may require professional intervention. Rather than denying the pervasiveness of loss, we must honor the depth of feelings that arise in all of us in response to the loss of something or someone who is loved. This is our shared humanity. By living through loss, we may find a deeper love, understanding and meaning for our lives and how we choose to live.

Our Personal Reflections Before I went to graduate school, I had been reasonably protected from major loss, even though an unspoken loss hung heavily around my family.

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My father’s first wife died in childbirth, and he grieved deeply for four years before remarrying. Vague references were made to her death and that of the unborn child, and we would periodically visit her grave but would never talk openly about her. I knew there was a locked trunk in the attic where my father kept some of her cherished possessions, and my mother would periodically cry about its presence, wishing that he “would just get rid of those things.” His legacy of loss and accompanying sadness were ever present but never openly discussed. Three of my grandparents died before I was born, and my memory of my paternal grandmother’s death when I was six focuses largely on my new shoes and the abundance of desserts. Like many young adults in graduate school, I dealt with the loss of first loves and a broken engagement. But none of these losses prepared me for the first tragic death in my life: a drunk driver’s hit-and-run death of my brother. He died as I was completing my doctoral comprehensive exams, but there was little support or understanding for my grief by either the faculty or my peers. I was expected to “keep going.” I watched helplessly as my parents struggled at a time when health care providers, ministers, and other helping professionals had little knowledge of how to support bereaved parents. In fact, the main advice my parents received was to get over it as quickly as possible. Although my mother and father lived nine and eighteen years, respectively, after my brother’s death, they never reached what some theorists have called adaptation, or what we define in chapter 2 as the integration of death. Their grief was always present, looming large, and sadness surrounded them. They tried to escape the pain by leaving the church that failed them when they most needed healing care, moving from the family home, and distracting themselves with activities and travel. Just as silence surrounded the death of my father’s first wife, an even greater silence shrouded my brother’s death despite my attempts as a social work student to reminisce, talk about feelings, or find meaning. If Mothers Against Drunk Drivers (MADD) had existed then, my mother would have had an outlet for her anger and distress. Instead, no one mentioned Tom’s name. I tried to be the strong one, offering them support, but I received little support as a sibling. Years later, my sadness over my brother’s death emerged when I was in counseling and became aware of how my unresolved grief affected my relationships. Memories of my parents’ pain and sadness fifty years ago are still with me. Next came my parents’ deaths, both from pancreatic cancer. Because they died when I was a young adult, their deaths were “off-time.” I was just beginning my academic career and busy with two small boys. As a gerontologist, I was intellectually prepared for my parents’ deaths, but nothing prepared

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me for the loneliness of being an orphan without siblings, especially on holidays when having no family of origin to celebrate with intensified my awareness of loss. Nothing in my life prepared me for the death of my closest friend, Naomi Gottlieb, killed by a tram while vacationing in Prague. In our society, a friend’s death is often disenfranchised, evoking little expression of sympathy, even though our relationship was probably closer than that of many relatives. In addition, as dean, I was expected to be strong, “handle” arrangements, and honor her publicly at our school’s memorial service. There was neither time nor support for me to grieve. Because of my brother’s death, I had always feared something happening to our children. Seeing how my brother’s death had shattered my parents’ lives, the thought of losing a child was unbearable to me. But it was always present because our younger son, Chris, thrived on high-risk adventures: white-water kayaking, bicycle racing, and mountain and rock climbing. We talked about my fear and assured each other of our love many times. I had imagined his death numerous times, especially when he was late phoning after coming off a mountain glacier or a raging river. So when a guide from Rainier Mountaineering arrived at our door late at night, I immediately knew that the worst thing that could happen had happened: Chris, who had everything going for him—a loving girlfriend, success as a Stanford undergraduate, a new summer job in outdoor education with youth—and who had celebrated his twentyfirst birthday at base camp, fell to his death while guiding on Denali. Winds of more than eighty miles per hour had blown him off a ridge while he was trying to help a client who had slipped as they descended. For one indescribable week, we waited until he was found, two thousand feet below, on the edge of a crevasse. I wondered whether I could go on and then realized that I must do so for the sake of my son Kevin, daughter Mani, and husband Gene. But for many days, simply getting out of bed was an act of courage. I was so deep in my grief that I was ineffective at supporting my family. We all coexisted in a blur of constant loving, well-intentioned visitors, an abundance of food for which we lacked appetite, the media wanting our stories, and planning for a memorial service while still holding on to the thread of a hope that Chris miraculously might have survived the high winds, snow, and ice. Since the day the Alaska ranger called to tell me “we’ve found Chris,” I have read hundreds of grief books, written journals, spent hours with a grief counselor, talked and walked with friends, raged at the gods for letting this happen, gone numbly through holidays, attended a mothers’ support group, and gradually, slowly,

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almost imperceptibly discovered meaning, purpose, joy, and laughter in my reconfigured life. Writing this book was part of my ongoing meaning-making of this most painful of losses. Eight months after my son’s death, my husband was diagnosed with stage 4 colon cancer and given three months to live. I raged at the unfairness of it all, wondering how much more we were expected to endure. Like many parents, my husband and I grieved our son differently, unable to bear the pain in each other’s face. We turned more to friends for support than to each other, escaping each other’s pain through our work and our two children. We would alternate between holding each other and screaming at the unfairness of it. Faced with my husband’s death, we experienced moments of intense sadness, intimacy, and connection before his surgery. And then my husband of twenty-nine years, the man whom I loved deeply, left the hospital and never returned home. For this abandonment and loss, I have only questions. I have no answers, only hunches that I have been able to glean from talking to friends, reading his journal after he died, and rearranging the pieces of our marriage. Perhaps it was a way of escaping the pain of grief on my face, mirroring his and too much to bear. Perhaps it was a way to run away from our home filled with years of memories. My older son once said, “Dad died for all of us the day Chris died.” Perhaps it was hope, nurtured by naturopaths, to try to start a new life and relationships as a way to defy the odds and miraculously get well. Perhaps it was his anger—at God, at me, at mountain climbers, at doctors who misdiagnosed his cancer and then later told him that nothing could be done to extend his life. Even before he died, I was rapidly thrust into another unanticipated loss through separation—single parenting and needing to manage as if I were already a widow. As I reflect on that painful time period, I can only conclude that we all were “acting crazy” in our grief. Such losses are not unique to me. In fact, when I read or hear of other tragic events, I often think I have not had to endure as much as others. I have walked, talked, written, cried, and laughed with other parents whose child died. Loving friends who are a blessing in our lives surrounded my daughter, my son, and me. I have learned from others whose partners changed dramatically with a diagnosis of terminal illness, leaving them in search of a magical cure. I managed on a daily basis. I was an effective dean and later thrived in my teaching and scholarship, have many friends, and a loving son and daughter. Moments of grief, despair, and sadness came less often, were less intense and of shorter duration. And now as I write the second edition of this book, I realize how far I have come in my grief journey, that I no longer dwell on the unanswered questions and the pain.

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A small reminder can still trigger tears, but the tears do not last as long. Holidays, vacations, and birthdays remain challenges to try to create new memories for our small family: my daughter in Seattle and my son in New York City. I constantly fear something happening to my son, daughter, and now daughter-in-law and grandchildren, and I wonder how I then could survive. But life goes on, challenging us, urging us forward, patiently waiting for us when we are stuck, affirming past loves, and providing new opportunities to grow. My son, my daughter, and I each are different people than we were before Chris and Gene’s deaths. I would much prefer to have them both alive and physically present, but that is not what life has given me. And so I value the new person I became—one who is stronger and more empathic, open, tolerant, passionate, and loving and better able to take risks, even though I would give anything not to have had to go through the process that shaped the new me. Nothing is as horrifying to me as losing a child, so I am also less afraid and calmer. Knowing what is most important in life, I try never to end a conversation without expressing appreciation or love for the other person. My hope is that what I have learned through both my research and my personal losses is captured here in ways that will be helpful to each of you, the readers, who are embarking on this journey with us of “living through loss” across the life span. Nancy R. Hooyman

When I first joined the faculty at the School of Social Work at the University of Wisconsin at Madison, I was asked: “What would you like to teach?” Without hesitation, I chose courses on grief and social work practice with older adults. As a gerontological social worker, I had years of experience in various practice settings that informed the development of these courses. A course on grief that I had taken in the 1970s focused primarily on grief associated with death. In contrast, I wanted my course to address the varied forms of loss and grief that social workers confront in their practice. I also wanted the course to be relevant to students committed to working with diverse populations and in varied practice contexts such as aging, health, disabilities, children, youth, families, and mental health. I adopted a life-span perspective to examine losses common at different life stages, the developmental issues and needs that affect grief, and developmentally appropriate interventions. Without a text that synthesized relevant research, theory, and practice, the class readings were unsatisfactory. This book is designed to close that gap and serve as

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a resource for students, faculty, and practitioners confronting losses for which they may be inadequately prepared. Inadequate preparation of social workers and other professionals is evidenced in experiences of friends and colleagues confronted by insensitive and even harmful responses from coworkers. For example, a social worker’s baby died soon after birth. Upon returning to work, unknowing coworkers assumed she had been on maternity leave and inquired about the baby. When hearing of the baby’s death, her coworkers often became uncomfortable and walked away without expressing any sympathy. Similarly, the baby of an emergency room social worker died just hours after birth. This father shared his dismay at his coworkers’ lack of support and the discomfort he felt carrying the burden of putting them at ease. These examples reflect the consequences of living in a death-denying society and the inadequate preparation of providers to address the needs of the bereaved. In my professional life, I have been deeply moved by the resilience of older clients, many of whom were dying. One African American woman had endured many profound losses, including the death of her son, her husband, and all of her siblings. Yet she was fully engaged in her church activities and embraced the troubled youth in her community by caring for them as if they were her own. She reflects some of the attributes of resilience described in chapter 3. Going to work in a nursing home, I found one of my “favorite” residents, Mrs. S., lying in bed, moaning, and crying out in pain. The nurses were not answering her call, and I discovered that she had had a stroke and fallen and broken her hip. After insisting that the nurses treat her pain, I felt helpless to comfort her. Suddenly a feeling of deep peace came over me as I realized that all I needed to do was “be present.” I sensed that she did not want to be alone, so I stood silently beside her bed. I recalled that Mrs. S. was deeply religious and loved music. As I sang an old spiritual familiar to her, she smiled at me, continued to cry softly, and then began singing along. Mrs. S. died that night, and I felt privileged that she had allowed me to be with her during her last day. Experiences like these have convinced me of the need to fill the spiritual, emotional, physical, and psychological needs of the dying and their families. Like many of you, I have experienced many losses throughout my life. My earliest memory (at age two) is the death of my baby sister, Barbara, from sudden unexpected infant death. Overcome by their grief and wanting to “protect” their surviving children, our parents did not know how to include us in our sister’s death. As a result, my sister and I were confused and fearful about what had happened to Barbara and continued to search for her for months.

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When I was thirteen, my mother underwent a life-threatening surgery to repair a brain aneurysm. My parents told us that the outcome was quite uncertain. Grateful to my parents for their honesty, I felt respected for being informed about the realities of her condition. I remember standing by her bedside, watching helplessly as my normally stoic father wept as we said good-bye to her. Although my mother died during surgery, she came back to life after undergoing a life-changing near-death experience. Given the different developmental stages of the siblings of this large family, each one grieved the losses entailed in this experience quite differently. A challenge facing our family the following year was the leukemia diagnosis of my fourteen-year-old brother, Jimmy. Each of us experienced a roller coaster of emotions as we watched him suffer from aggressive medical treatments. His resilience and growth touched me deeply. Before his death two years later, he asked to speak privately with each of his five siblings to put them at ease about his death and share his hopes for their future. After his death, he visited one of my sisters in a dream. Her complicated grief symptoms evaporated after this dream in which he assured her that he was happy and at peace. On September 18, 1997, my older sister called early in the morning to tell me that our father, a long-distance truck driver, had been found dead by a state trooper. My father’s semi had traveled off the highway before crashing into an embankment, probably because he had fallen asleep with the cruise control set at seventy miles per hour. The suddenness of his death intensified our grief, with each family member grieving his death differently. My father’s death also heightened my empathy for bereaved middle-aged adults’ juggling multiple responsibilities. As a mother with two young children and a demanding academic position, I had little time to dwell on this significant loss. The effects of this became apparent during my grief class, when I broke into tears upon hearing the song “No Time to Cry,” by Iris DeMent. This song is about a woman in midlife who is too busy working and caring for her children to grieve her father. I realized that I had been carrying intense grief just below the surface. I used this experience to illustrate to my students how grief that is not addressed may emerge at inopportune times (e.g., when teaching a class). This happened to be a teachable moment, but if I had been with a client, my grief would have prevented me from attending to their needs. I hope our discussion of self-awareness and self-care in chapter 14 encourages you to reflect on your own grief that may lie below the surface. My experiences with loss have taught me many lessons. I have learned to be open and honest with children about death and to include them as much

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as possible. I have learned not to take anything for granted. My children learned that they should never leave the house or go to bed angry and that we treat each parting with respect because we do not know when death might dramatically change our lives. Compelled to confront my own mortality through these many experiences, I have embraced death as an inevitable transition and lost all fear of it. As a result, my priorities have shifted, and I am more interested in my spiritual development and being a compassionate, kind, and loving presence for others than in impressing them with material or intellectual accomplishments. I am also more aware of and committed to improving end-of-life care for the dying and their families. I hope this book will help you, the reader, be less afraid of death and other losses and that the interventions we describe will help you alleviate your clients’ grief. May you cultivate the ability to have an open heart in the midst of the suffering in your personal and professional lives and compassionately tend to your own grief. Betty J. Kramer

My experience with loss and grief has been more professional than personal. I was immune to death for the majority of my childhood, only hearing about it within the walls of our Lutheran church. Despite this, I had deepseated death anxiety that sent me into panic attacks as I contemplated the notion of “not being alive” any longer. My first major experience with death occurred in my sophomore year of college. During my first semester finals week, my mother phoned early one morning asking if I had a busy day. When I explained that I had a final, she asked me to call after that. I knew immediately that my father’s father, who had been battling lung cancer, had died. The next morning, I flew to Alabama for my first visitation and funeral. With the memories of the walls of flowers in the funeral home never leaving my mind, I returned to finish finals week, not fully recognizing my grief. Shortly after beginning my second semester, my mother’s father was also diagnosed with cancer. I left college at the end of my sophomore year to head to the Mayo Clinic to be with him as he was dying. His death was different for me because he was my closest grandparent and the reality of his not being present in my life hit very close to home. The strongest memory I have of his funeral was seeing a close friend of his touch his cold still body in the casket as he said good-bye. I had never considered that someone would want to touch the dead or the importance of this for the grieving process.

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I did not deeply consider death again until it was recommended that I complete an MSW field placement in hospice because I was interested in geriatric care. I was terrified at the prospect of this placement. I was uncomfortable with death and questioned whether I could be effective interfacing with dying individuals and their families. However, I was less than truthful during my field interview, assuring the supervisor that I had no death anxiety, viewed death as a normal natural process, and was certain I could partner effectively with patients and families on this journey. Much to my chagrin, I was immediately offered the placement. Fortunately, I worked with a compassionate nurse who helped me overcome my own death anxiety and become passionate about end-of-life care. She valued and respected the skills that a social worker can bring to helping prepare a patient and family for death. I was subsequently hired as this hospice’s social worker and started my social work practice career in end-of-life care. When I entered a doctoral program, I developed a strong interest in issues associated with caregiver grief being more salient than caregiver stress. After completing my dissertation on this topic, I joined the University of Iowa School of Social Work determined to keep one foot in the hospice world and the other in academia. During my first semester, I affiliated as a volunteer with our local hospice chapter and developed two new courses, one on grief and the other on death and dying. I started to consider that much of our knowledge about death ignores the experience of individuals and families who face sudden traumatic deaths. Because of this, I invited the local medical examiner to present to my class on death and dying. The students were fascinated, and he was intrigued with how a social worker could contribute to the death investigation process. I volunteered my services, and within a few months I attended a national training on how to do death investigations and was responding to suicides, homicides, accidents, and other deaths that fall within the medical examiner’s jurisdiction. My work led me to one significant conclusion: we are not adequately training professionals to respond to survivors’ trauma and grief. I became determined to demonstrate how a social worker could contribute to families, the medical examiner’s staff, and the larger community experiencing grief and trauma. After I established the need for social work, the county medical examiner’s office approved hiring a full-time licensed social worker. I continue to advocate for the importance of social workers being in host settings at the medical examiner’s office to address grief reactions. My personal life experience with death is still relatively limited. I am blessed that both of my parents are still living, and I have four amazing children. But I

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am not immune to loss; I have experienced miscarriages, divorce, and deaths of friends and pets that have forever changed me. I continue to teach death and dying with a core value of preparing students not only for their own death but also for the deaths of those around them. Learning “how to say good-bye” is a life lesson everyone needs to learn. My students continue to teach me about the resiliency of the human spirit. Many of them have experienced significant loss and trauma but still move forward with their personal goals and dreams. I feel so blessed that I was given the skills and knowledge that enable me to be present in the face of death and help others navigate this journey through pain, fear, and the unknown. Sara Sanders

ACKNOWLEDGMENTS

This book grew out of our personal experiences with loss; the deaths of friends, colleagues, and family members; and our professional commitment to prepare social workers and other professionals to work effectively with individuals, families, and communities grieving loss across the life span. The questions and concerns of the bereaved have made the need for this book clear to us and sustained us when other work and family demands interfered with writing. We are grateful for what we have learned from the bereaved, the students in our classes, and colleagues. We greatly appreciate the support of numerous colleagues and friends who encouraged us to write the second edition of this book. Their external validation assured us that this book would indeed contribute to the profession and that an updated version was needed and timely. We specifically want to acknowledge Keith Anderson, series editor for the Columbia University Press End-of-Life Care Series and associate professor at the University of Montana School of Social Work, and Stephen Wesley, editor of Columbia University’s Social Work Series, for their encouragement to publish a second edition and their support throughout the long writing process. We are grateful for the attention to details, particularly the references and citations as we shifted from APA to Chicago style, provided by Christian Winting, an editor at Columbia University Press; Sarah Corcoran and Alexis Alexander, MSW students at the University of Iowa School of Social Work; Alisa Strayer, MSW, manager of the HealthyGen Center at the University of Washington School of Social Work; and Ben Kolstad, editorial services manager at Knowledge Works Global Ltd. We also express our thanks to Ian Johnson and Erin Harrop, doctoral students at the University of Washington who assisted with literature reviews.

My (NH) special appreciation goes to my son, Kevin, who shows increasing wisdom and empathy for others who experience major losses, and to my daughter, Mani, who taught me about what is important to children who xxi

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grieve. I will always cherish my friends and colleagues at the University of Washington and across the country who listened with compassion, sensitivity, and openness during my intense periods of grief and supported my personal and professional growth through the process of living through loss.

I (BK) wish to acknowledge my students who have convinced me of the need for this text through their enthusiastic desire to gain the knowledge and skills necessary to respond to their own and their clients’ pain resulting from traumatic events, difficult life experiences, and a variety of social problems. I am encouraged by witnessing the compassion, caring, and commitment of these students. Many of them have chosen their work in order to teach other professionals culturally relevant and developmentally appropriate strategies for addressing grief. I express my deepest gratitude and affection to my mother, Marge Collins; my sisters, Margie, Barbara, Janet, and Mary; and my brothers, Buddy and Jimmy, for their great influence on my understanding of grief, loss, resilience, growth, caring, and love. My most valued and important source of support is my partner, Jim. Without his tireless encouragement and willingness to be fully engaged in virtually all the responsibilities associated with raising a family and running a household, I would not have been able to carry out my academic activities. My children, Jenner and Clariel, were incredibly patient with my demanding work schedule and allow me to cherish the very rich quality time we spend together. Finally, I wish to express my deepest appreciation to Domo Geshe Rinpoche, my spiritual teacher.

I (SS) first want to thank Nancy Hooyman; she has been a mentor to me, and I have admired her throughout my career. I also wish to acknowledge the hospice nurses, social workers, and other staff I met early in my social work career who taught me how to help individuals transitioning throughout the dying process and made me the social worker I am today. I also thank the patients and families I have worked with as a hospice social worker and in the medical examiner’s department. The opportunity to partner with them during times of horrific pain has shaped me in countless ways, which I continue to reflect upon during my academic career and bring into the classroom. And

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thank you to my students who have been willing to open themselves up and explore their emotions associated with death and grief. I would be remiss if I did not thank my parents who taught me “we start dying the day we are born” and allowed me to struggle with my own fear of death. Finally, I would like to thank my four children, Adeline, Kjirstin, Josephine, and Soren. They never asked to have a mom who has the demands of being an academic and an administrator and who is passionate about social change and justice. I appreciate their patience with me as I have worked long hours and taken on the issues of the world to make a better future for them. These four young individuals make me want to do and be better every day.

living through loss

Introduction

 This is a book about the inexplicable, the mysterious, and the universal nature of mortality and other loss experiences. Death, loss, grief, and pain are pervasive and inevitable aspects of the human experience. They touch us in different ways and at different times in our families, communities and cultures. As we confront the mystery of loss, we face questions about who we are and why we are here. Whether professional practitioners, educators or clients, each of us must deal with issues of meaning and purpose in our life in our own way and in our own time. This book is written for social workers and other human service and health care professionals who assist people experiencing profound losses. It is for anyone who has loved and experienced loss and for those committed to living life fully no matter what challenges life offers them. This is a book for the searchers, the seekers, and the doubters, for those willing to ask the difficult questions and who struggle with the ambiguity of the answers when trying to understand the pain of loss and the meaning of life. It is for those committed to the journey and the adventure of life, even in its darkest moments. Although we immerse ourselves in the literature, draw on our and others’ life experiences, and suggest interventions that may be helpful to those grieving, we do not consider ourselves “experts.” Indeed, individuals, families, and communities that we work with are often the experts who teach us the most about life and death, love and loss. Instead, we join you, the reader, on this journey. It has been more than fifteen years since the first edition of Living Through Loss. This second edition benefits from the insights and perspectives we have gained from the feedback provided by our readers, reviewers, and a new author, Sara Sanders. We have grown in our understanding related to losses in our own lives, and the literature has markedly changed since the first edition as well. We hope you and your colleagues will be inspired to reflect 1

2

Introduction

on and discuss the many meanings of loss presented here and that your family and friends, and the individuals, families, and communities you serve will benefit from your deeper understanding of loss and grief.

The Pervasiveness of Loss Although we typically refer to grief and loss, the more appropriate sequence is loss and grief because loss precedes grief. The pain of loss and the resultant grief are universal human experiences, and we absorb continuous change and loss daily. As Pagels wrote after the deaths of her young son and her husband, no one escapes terrible loss as a life-changing event that forever alters their outlook and the shape of their lives.1 Most of us think of death as the greatest loss, but its magnitude depends on our relationship with the person who has died. For example, a divorce after thirty years of marriage may be more devastating than the death of a distant relative or even of a partner if death brings a sense of relief from a conflictual marriage.2 Some people think that they have never grieved if they have not experienced a relative’s or friend’s death, but we are grievers a thousand times over in our lives.3 We are subject to many “little deaths” through losses and the subsequent lessons they teach us, including giving up our impossible expectations of others and ourselves.4 When we lose someone we love through death, divorce, or separation; when we lose our health and mobility; when our birth or foster parents die; or when we lose our job or home, we lose a part of ourselves—the self before the loss. Loss follows any event perceived to be negative by the individuals involved that results in long-term changes to their relationships, patterns of thought and emotion, and ways they view the world. The global coronavirus pandemic in 2020, never imagined when we began the second edition, has resulted in the loss of a way of life once considered “normal.” Countless profound losses, both individual and collective, range from loved one’s deaths, to one’s health, to unemployment and declining income, especially for women, to disruptions in students’ learning, to upended routines and plans, to insecurity and uncertainty about the future and to mental illness and suicide. These events have disproportionately negatively affected Black and Brown populations and low-income communities. The imperative of social distancing has meant that grieving individuals have been unable to engage in public rituals of mourning that typically provide social support to survivors. The lack of social interaction during all life stages and the loss of the world we once knew will reverberate for years after the rate of infection is slowed by vaccines. Yet many people may not know how to voice or name their grief.

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3

February 22, 2021 was a dark day for the United States, with over 500,000 Americans dead from COVID-19. The sheer numbers make it hard for people to comprehend, to make a personal connection and to put faces and stories to them, in part because many of these deaths occurred in isolation and away from loved ones. Each death has left an unknown number of people grieving—partners, parents, children, neighbors, and friends; a ripple effect that swept across our country and the world. It is understandable that many of us have become numb to the numbers repeated daily on the news. But as President Biden emphasized on that dark day, we need to take the time to remember and reflect so that we can heal and find purpose as one nation.5 The loss and grief from the coronavirus pandemic are interconnected with the pandemic of racism in our society because of the health and mortality inequities faced by Black and Brown people. The pandemic of racism, embedded in our society for over 400 years, was brought to the forefront through highly visible instances of police brutality and other types of racial injustice in 2020; these heightened our awareness of the pervasiveness of the collective loss and grief of communities of color. Just as we must remember those who died from COVID-19, we must never forget the lives lost because of systemic racism. Even changes with perceived positive outcomes, such as a career move, relocation, retirement, or more family time during coronavirus lockdowns, may evoke loss and grief.6 Although change in itself—whether positive or negative—always contains loss and learning to let go, not all losses precipitate a grief response. Such a response depends on a wide range of personal, family, cultural, and community capabilities as well as the degree of attachment we have to the lost object or person. Losses can be physical or symbolic, but they always result in some kind of deprivation—we no longer have someone or something we once had. With physical loss, something tangible becomes unavailable, and the clearest example is death: the permanent and total absence of someone we love. Symbolic loss refers to a change in one’s psychological experience of social interactions, such as the loss of sense of identity because of a job demotion or retirement, a diminished sense of safety and predictability because of the twin pandemics of coronavirus and racism, or feeling isolated from other couples after a partner’s death or divorce. Loss always contains some ambiguity, even when anticipated. Part of this ambiguity is being able to hold opposing ideas of absence and presence simultaneously in our minds, to live concurrently with joy and sorrow. For example, parents of children with complex health conditions or disabilities

4

Introduction

often experience intense grief when their child’s health crises, in effect, create wounds in them. They are losing a piece of themselves as well as their dreams of what their life would be like as parents, but they also love and experience joy with their child.7 As we grapple with our losses, we not only must acknowledge grief as a constant companion, regardless of the amount of time that has passed, but also must learn to open ourselves to joy and engagement in life again even though sadness is part of our new reality.8 Each time we experience loss of any kind, we have to work to find a “new normal” for life without the person or object that we desire. Like a snow globe, the snowflakes of our life will land in new places, forever altering us and how we live. When we experience profound loss, we can no longer maintain the illusion of being inviolable or believe in an omnipotent rescuer. By asking “why me,” we begin to face our own mortality.

The Pervasiveness and Nature of Grief Grief is the normal psychological, social, and physical reaction to loss. It is experienced through our feelings, thoughts, and attitudes; our behavior; and our health and bodily symptoms.9 As Corr et al. noted, to think of grief only as feelings risks misunderstanding and missing the full range of reactions to loss.10 Intensely personal and individualized, grief is based on our own perception of the loss. Moreover, our loss need not be recognized or validated by others for us to feel grief, although the lack of social validation may intensify our loneliness. Given the universality and inevitability of loss, grief is “like a neighbor, who always lives next door, no matter where or how we live, no matter how we try to move away.”11 The grief that follows most losses cannot be “cured” but is a necessary and inevitable part of existence.12 Pagels notes that pain and death are as natural as birth, woven inseparably into our human nature.13 The type of attachment and affinity to someone or something influences how individuals respond to loss and to opportunities for future growth.14 Grief is the price people pay for love and commitment to one another, and grief requires us to accept giving up what we so want. Although joy, light, and love typically precede pain, sadness, and darkness in our lives, this pattern of “good” followed by “bad” is not universal. For example, an adult child may grieve the death of a parent who was abusive, neglectful, or absent; a wife may mourn her divorce from an emotionally distant husband; or a widower may grieve his wife’s death after years of exhausting caregiving. Despite the limitations of some relationships,

Introduction

5

many adults still feel an attachment and experience grief even though the relationship was negative or when the loss is combined with some elements of relief. Each of us struggles to come to terms with loss in a way that works for us. No two people grieve in the same way; therefore, one’s person’s grief should not be considered as a standard by which others evaluate themselves. Wellmeaning friends and professionals may try to reassure us by telling us our grief will end in a certain amount of time, but grief does not follow a particular timetable or a sequence of stages. Indeed, some losses are so profound and life-changing that grief never completely ends; rather, its intensity, acuteness, and form ebb and flow over time. A major loss may never leave us, but it will take on different shapes and shades throughout our life. For these losses, “getting over it” may not be possible or desirable. Once we have lost someone or something we love, we live to varying degrees in grief’s presence.15 The journey of grieving is a path toward learning to live with and accept loss, not closure. As we live with our grief, most people are able to move forward in the face of their pain.16 As Pagels articulates, the mornings gradually become less gray, the evenings less dark. Nor can the healing process be hurried or magically compressed, although we may implore others to “do something, anything,” to remove the hurt. To grieve requires considerable time, energy, and attention. There is no simple formula or escape through work, drugs, alcohol, isolation, or anger. Grief lasts as long as it lasts. Paradoxically, the process of living and grieving makes the strongest demand on us when we feel most exhausted and overwhelmed, creating ineffective as well as adaptive responses, which are highly personalized.17 The internal process of grieving is the hidden side of loss, and people typically do not realize it is occurring unless they choose to acknowledge their deepest feelings of pain. Everyone grieves following a loss, but not everyone will mourn. We live in a society in which people may not feel safe and supported enough to express their internal pain outward through crying, rage, or other intense emotions.18 Instead, we often receive messages to “be strong” and “get over it.” There is considerable heterogeneity in our responses to loss. The degree and intensity of grief are not hierarchical. The magnitude of our response varies with the way in which a loss occurred; a person’s life experiences and individual capacities; the nature and meaning of the relationship; cultural, religious, or spiritual beliefs; and others’ responses and social supports. It also differs with developmental stages of life, other losses experienced, feelings

6

Introduction

of discrimination and injustice, and past strategies used by the bereaved to deal with loss.19 A presumed hierarchy of loss also overlooks that despite feelings of powerlessness, we can choose how to react to our losses, give them meaning, and incorporate them into the core of who we are and who we will become. Although life’s greatest and most grievous losses disconnect us from ourselves, they also provide opportunities to create new connections with others, live more deeply, and discover greater meaning in our life. The bereaved achieve such meaning when they are able to consolidate their positive memories, engage in cognitive restructuring of fatalistic thoughts, and integrate the loss into their lives. As reflected in this book’s title, Living Through Loss, the process of creating meaning, perhaps through writing self-narratives or finding unsought benefits such as personal growth or redefined priorities, can be life-changing in positive ways. Such awareness encourages us to live in a more vital and honest manner, changing how we relate to others and how we perceive ourselves. This process prepares us for handling future losses and their resulting pain. By searching for meaning, we learn how to live in an altered world. However, meaning-making is about more than benefit-finding.20 As Pagels realized when left to raise two toddlers on her own, when life turns out different from what we expect, we have to do what life expects of us.21 Paradoxically, the only permanent feature of life is its impermanence. Even as we engage in meaning-making in the midst of the intense pain of loss, acknowledging and living in the awareness of our own mortality can enrich our lives. Grief affects not only individuals but also family systems, neighborhoods, workplaces, communities (e.g., violence or devastating wildfires), and, in some cases, the nation or world, as occurred on 9/11, in hurricanes Maria and Harvey, during the coronavirus pandemic, in the 2019 Malaysian airline crashes, after school shootings such as those at Sandy Hook and Parkland, and after recent acts of police brutality that enlarged the Black Lives Matter movement. These events created a ripple of complex losses: the immediate loss of death, as well as the longer-term loss of a sense of safety and control and changes in our belief systems and behaviors in our communities or schools. These events changed our worldview forever, creating cumulative and secondary consequences that continue to reverberate across social systems and generations. The meaning of loss for an individual cannot be separated from the family, community, and cultural meanings ascribed to it as well as the societal response to the bereaved. In other words, grieving has clear intrapsychic components, but it typically involves interactions with others who support or withdraw from the bereaved.22

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7

The multigenerational legacies of loss in our own families, social environments, and cultures are powerful. For example, most adults who were alive when President John F. Kennedy was assassinated in 1963 can vividly remember how they heard about his death, where they were, and how they felt. Moreover, his death still affects our country. Similarly, future generations will experience and reexperience the traumatic deaths resulting from the coronavirus pandemic, ongoing racial injustice, and the insurrection at the U.S. Capitol on January 6, 2021. Both family systems and communities feel losses across generations, such as the historical collective losses of indigenous populations and the intergenerational violence of slavery or the legacy of countless school shootings and police brutality against Black and Brown people. In the same way, the traumatic deaths and other losses due to the December 2004 tsunami will reverberate across Southeast Asian cultures, families, and communities for decades. As we grieve new losses throughout life, it is common to revisit earlier losses. Even when we think we have integrated early losses into our lives, grief can catch us unaware and unprepared for the intensity of our feelings. For instance, parents of a child that died years earlier may feel raw grief at graduations or weddings of their child’s peers because their child is not there to participate. Similarly, a wife may again experience the pain of divorce when her first new relationship ends. Through the process of “regrieving,” it is not unusual to grieve new dimensions of a loss as we mature and view that loss through a different lens stage of life or the changing societal, historical, and cultural context. In addition, some individuals may realize that they never fully grieved an earlier loss, which may once again feel new and raw despite the passage of time.23

Loss Through Death Life and death are two parts of the same story, each requires the other. Death differs from other losses because the deceased is gone forever. Even for those who believe that life continues in some form beyond death, there still is the absence of a physical presence. We miss the touch, smell, smile, hug, tone of voice, and laugh of the individual even as we hold these senses in our memory. Our grief tends to focus on those left behind rather than on the person who has died.24 Perhaps we must speak of death to understand fully what it means to be in the presence of grief.25 To speak of death is to enter the realm of the supreme mystery, that of the unanswerable questions. Many of us are uncomfortable

8

Introduction

with the feelings of powerlessness and uncertainty initially inherent in loss through death, and our society tends to deny and fear death. We often feel discomfort when expressing our grief and want to avoid the pain and darkness. As Becvar wrote, death is “the horse on the dining room table,” the “elephant in the living room;” it is the one life transition that everyone experiences but few want to discuss.26 Confronting death challenges us to create meaning where none seems to exist, weaving an entirely new picture and story about ourselves, our world, and what it means to live. Loss through death marks the end of one chapter and the beginning of a new one. It can open doors to greater awareness, sensitivity, compassion, and even wisdom, or it can plunge us into longterm darkness. As Roethke implied in his poem “Dark Time,” it is only in the darkness that the eye sees clearly.27 Despite feelings of powerlessness and despair, we have choices to make regarding how we will live in a now dramatically altered context. With death, there is a struggle between “not forgetting” and “moving on.” Bereaved parents, in particular, never want to forget their child and the unique relationship they had, but they realize they need to move forward and continue living without that child, which may create emotional conflict. To be able to move on, people have to be able to draw upon their available supports during the darker, more difficult periods.28 Although this book deals with the loss and grief entailed by death, it is highly relevant for people who are grieving non-death-related losses: children separated from their birth parents through adoption or foster care or unable to play with friends during the coronavirus pandemic; young adults who lost their jobs, income, homes, and future dreams due to the pandemic, middle age adults who lost their daily routine during the pandemic, older adults who must leave their longtime home or are unable to see grandchildren because of coronavirus; immigrants who have lost their country; family systems profoundly changed by relatives’ substance use or severe mental health illness or a history of sexual or interpersonal violence; and communities devastated by gun violence and police brutality. Most non-death-losses entail a loss of dreams. When a dream dies, a sense of potential dies too, and individuals must search within themselves for the seeds of another dream.29 Chronic physical and mental illness and disability create numerous losses for both people surviving with disabilities and their caregivers. The parents of a child with a disability may immediately face the loss of their dreams for their child’s life. They have to live with something unexpected and that they perceive to be unfair and accept what previously might have

Introduction

9

seemed unacceptable. However, as time goes on, they often begin to recognize numerous rewards from raising a child with disabilities. Their grief is long term, or what is termed chronic sorrow, because they may face secondary losses throughout the child’s life and may grieve at milestones (e.g., birthdays, school graduations) missed when they reflect on what might have been.30 Because their grief is associated with the living, it can be unending. They may feel disillusionment, aloneness, and vulnerability when others do not recognize their sorrow nor express support. Adults with a chronic illness or disability (e.g., spinal/brain injury, or dementia) may not only lose control over their physical body and autonomy but also grieve the loss of intimate and sexual relationships. Everyday relationships are central to understanding the meaning of loss for those who must depend on others. As Benwell demonstrates in The Last Leaves Falling, for those living with ALS, changes in physical ability bring anger, rage, fear, and grief as they watch their health decline.31 When illness or injury occurs at any time during life, a person’s self-image of competence is replaced by a new self-image as a patient whom others treat objectively. Life-threatening accidents, such as spinal cord injuries, can profoundly change a person’s sense of self. However, the losses that individuals face during functional decline may be minimized through supporting others dealing with illness, and they may lead to gains in personal growth and self-acceptance.32 Dreams are lost in unemployment, separation or divorce, and involuntary relocation. Unemployment or retirement losses may be multiple: the lack of income, a sense of security, status, and self-identity, and perhaps of one’s home. At the same time, individuals may engage in meaning-making as they reflect on their current situation and their future.33 Trying to see the unexpected gains from such losses, similar to developing new dreams, helps individuals explore new sources of meaning Divorce or separation requires letting go of dreams along with all that was invested in the relationship, and other social networks, family structures, and previous roles may also be lost. Dreams may be abandoned as a result of a loss of place through immigration, moving (e.g., trading a longtime family home for a small assisted-living facility), or being unable to afford a home (e.g., eviction, homelessness). These losses can be profound because place defines our sense of space and the predictability of life. Consider the emotional comfort of being able to “go home,” no matter our stage of life. Losing the space that is “home” throws us off base psychologically, making it more difficult to deal with secondary losses associated with the loss of physical space.

10

Introduction

Professionals’ Understanding of Loss and Grief Ideally, all human beings should understand the processes of loss and grief. Unfortunately, many of us will not have the time, space, freedom, or support to do so because our lives are dominated by other demands that keep us from attending to our grief. Social workers and other health care and human service professionals, regardless of their practice setting or clients’ stage of life, must acquire such understanding because loss is at the heart of many issues faced by those with whom we work. Some grief researchers and practitioners contend that a new profession of grief counselors is not needed. They maintain that those in positions to extend care to the bereaved may already possess the knowledge and skills to effectively intervene or need only gain an enhanced understanding and sensitivity about issues of loss and grief.34 This book is relevant for a wide range of health and human service professionals who are often part of interdisciplinary teams working with the bereaved, such as nurses, psychologists, family therapists, physicians, occupational therapists, teachers, chaplains, and home health workers. Professions from multiple helping disciplines are in pivotal roles and understand that grief is an inevitable, ever-present part of their practice. Individuals’ earlier losses and areas of trauma, and whether and how they were resolved, may complicate current life events. For instance, early life trauma and numerous losses faced by older individuals—loss of loved ones, autonomy, friendships, health, and home—can profoundly affect elders’ well-being.35 Understanding how early and current losses combine and the multigenerational implications of loss is needed to provide effective interventions. Yet we also must recognize that facing and overcoming the fear of loss and dealing with tragedy are not things we can do for our clients. Grief is hard, painful work that no one can do for anyone else. Instead, as Worden notes, by feeling the pain of their loss, we assist them through their own journey of grief.36 Social workers and other professionals must acknowledge the nature and centrality of loss and subsequent grief in their own lives. When we accept grief as a given in our life, we can construct a belief system that provides meaning and a safe context in which to facilitate others’ journeys of grief and healing. Because death and loss are so often feared or denied in American society, professionals must cognitively and affectively confront and accept the inevitability of their own death to work effectively with those grieving.37 Our comfort with our mortality varies with what we bring from our family of origin, family history, culture’s norms, and religious or spiritual beliefs. We all receive a variety of messages in our families, both implicit and explicit,

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11

about whether death is an uninvited stranger or a welcome guest.38 Becoming conscious of those messages is the first step toward working effectively with the bereaved. Topics central to preparing social workers and other professionals for navigating through loss and grief with individuals at different life stages include the bereaved’s psychosocial needs; the efficacy of interventions; variations by culture, race, ethnicity, gender, disability, sexual orientation, socioeconomic status, and religion/spirituality; as well as the impact of loss, particularly trauma, on family systems, generations, and communities across the life course.39 All social workers, not only those in end-of-life care, can benefit from such education because loss and grief transcend working with the dying. Our hope for you, our readers, is that this book will deepen your self-awareness and knowledge, increase your ability to assist yourself and others grieving losses, and point to resources to assist you in your work. The bereaved person must engage in the hard and painful process of grief, but professionals with culturally appropriate skills and evidence-informed resources can provide accurate information, put forth realistic and appropriate expectations, and use effective interventions that help reduce feelings of pain, confusion, and anger. Death is as natural as birth, and our clients are our true teachers in understanding the meaning of loss as they show us the many facets of grief.

Underlying Themes of This Book The themes that underlie our approach to loss and grief differentiate this book from others, particularly those focused on dying and end-of-life care. • Grieving is an extremely complex, ambiguous, and individualized experience with physical, emotional, cognitive, cultural, and spiritual dimensions. People grieve very differently, so there is no cookbook or linear approach for professionals to use. Instead, this book often raises questions rather than providing easy answers. • What is considered healthy grieving varies widely. For example, what was once considered “pathological,” such as continuing bonds to the deceased, is now viewed as normal and desirable. Indeed, what is considered “normal” or “complicated” changes over time and within different sociocultural and historical contexts. There is no right or wrong way to grieve, and some bereaved individuals may experience complicated grief and prolonged grief disorder. Uncomplicated grief is the most frequent appropriate response to loss, whereas major depression is a mental disorder

12

•

•

•

•

Introduction

that can complicate the grieving process. We avoid using words such as pathological, resolved, or normal grief, but those concepts, deeply rooted in early grief work theories , sometimes appear in our discussion of theoretical perspectives and complicated grief processes. Within the overarching concept of grief are different types of grief that have clinical significance, such as anticipatory grief, disenfranchised grief, ambiguous loss, chronic sorrow, and complicated grief (see chapter 2). It is essential for professionals to recognize cultural and religious/spiritual norms regarding loss, rituals, and constructions of grieving and meaningmaking to understand the significance of loss for members of different groups across the life course. When possible, we include examples of such variations. Congruent with our discussion of variations in how we grieve, particularly gender-based differences, we have used inclusive definitions of families. Throughout, the word partner refers to a spouse in a heterosexual marriage or a life partner in either a LGBTQ relationship or a heterosexual, nonmarried relationship. This definition recognizes and honors the range of intimate committed relationships. Widow and widower represent all types of partner relationships, not just legally married couples. The words wife and husband, however, are used when research findings are explicitly based on married couples, whether heterosexual or gay. We no longer use the definition of cultural competency from the first edition because it is too narrowly focused on individual attitudes and behaviors such as an appreciation of diversity. Cultural competency paved the way for increased awareness and knowledge of cultural differences, but it ignores the fact that race is not synonymous with culture. There is no one Black, Asian American, or Latinx culture. Moreover, understanding a particular culture such as Hmong or Somali does not mean that we are less biased against Hmong or Somali people; knowing about someone’s culture does not stop stereotyping based on racialization.40 Cultural competency is no longer salient in light of the unjust deaths of Black and Brown people that result from systemic racism, which has been highlighted by their higher death rates during the coronavirus pandemic, shocking police brutality on the streets of our cities, and the calls to action of the Black Lives Matter movement. Cultural competency fails to address white privilege and the lifelong cumulative toll of systemic and institutional oppression based on a foundation of racism that requires structural change.41 Racial and economic inequality rooted in slavery has been challenged by the civil rights movement, and the resulting inequities have been highly

Introduction

13

visible during the coronavirus pandemic in terms of access to health care and the vaccines. It is imperative for practitioners to address how racism, white privilege, power inequities, and oppression are built into every institution in American society and affect interactions with people of color.42 Institutional racism, codified in systems and formal and informal rules and policies, exacerbates inequality in outcomes such as physical and mental well-being and mortality.43 Moreover, Black and Brown people are exposed to more deaths across the life span, and health risks posed by grief and bereavement add to the disadvantages that they face historically and intergenerationally.44 These structural factors undoubtedly affect how people of color grieve—both individually and collectively—the losses of loved ones as well as of their health, employment, community, and safety. • Professionals must draw upon critical race theory, engage in critical reflexivity of their own implicit biases and their responsibility for privilege, and engage in the hard work of anti-racism. They also need to take account of how injustices faced by other marginalized populations, such as LGBTQ individuals, affect their experiences of loss and grief without eclipsing the pervasiveness of institutionalized racism. Throughout we articulate the need for practitioners and researchers to take account of injustices that affect loss and grief experiences of marginalized populations who disproportionately experience deaths, poor health, and other losses, and their resultant deep pain, anguish, and trauma. • It is essential to recognize how the developmental stage of life interacts with and is made more challenging by loss and grief. For example, the loss of one’s job through retirement at age seventy has a very different meaning than that of a single mom of young children who lost her job and only source of income during the coronavirus pandemic. Whether losses are developmentally on time (e.g., death of a partner in her eighties) or off time (e.g., death of a partner in his twenties) also affects the grieving process. The accumulation of loss during a lifetime magnifies the grief with each loss, especially in old age. Each chapter that discusses loss at a different stage of life—childhood, adolescence, young adulthood, middle adulthood, and old age—is organized according to customary developmental processes and tasks and developmentally congruent interventions for that life stage, although much of what we know about developmental stages is unfortunately based largely on white populations. • Grief across the life course is a more appropriate term than “life span” because of increasing recognition of the larger social, political, economic, and physical environment and cultural and historical context in which we live.

14

Introduction

What is considered a loss may vary markedly for an adolescent in a lowincome community with high rates of violence, a single mother struggling to maintain her family as she flees an abusive situation, an immigrant father separated from his children at the border, or an upper-middle-class parent of a child with disabilities but who has extensive resources. This larger environment and the resultant racial, ethnic, gender, sexual identity, and class inequities affect individual and social capabilities brought to the grief process, and they are given greater recognition in this second edition. The pervasiveness of racial injustice is also discussed at different life stages, particularly adolescence and young adulthood; however, evidenceinformed individual and community-level interventions specific to losses faced by populations of color are critically needed. • Our focus is on grief counseling rather than grief therapy because the vast majority of our readers are more likely to offer counseling than therapy. Grief counseling refers to the facilitation of the process or tasks of uncomplicated grieving to relieve suffering and help the bereaved to adapt.45 It generally involves one-to-one, family, or group interventions designed to encourage the expression of feelings and to support those seeking help for their bereavement-related distress. Grief therapy refers to processes used by highly trained professionals involving specialized intervention techniques to address more traumatic, complicated, or chronic grief.46 • Efficacious evidence-informed interventions are presented in chapters 5, 7, 9, 11, and 13, following our discussion of losses characteristic of different life stages. Evidence-informed interventions are limited for young adulthood and middle age. We highlight the need for more empirical evaluations of interventions with bereaved individuals at all life stages and particularly for those from different cultures and populations who daily confront racism, homophobia, sexism, or classism. We also recognize the conceptual and methodological limitations of bereavement outcome research that constrain our understanding of the effectiveness of grief counseling and therapy and, in fact, often do not distinguish between the two. Unfortunately, most evaluative studies use generic measures of health, depression, and anxiety rather than measuring grief, and effects by type of intervention are not always distinguished. An additional limitation is that interventions may work better for adults who seek help on their own compared to those recruited into intervention studies, and interventions may be more effective for people who are younger who have more complicated or traumatic grief reactions.47 Despite these limitations in the literature, we suggest interventions for most types of loss over the life course.

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15

• Most people are resilient and may experience psychological growth, development, and well-being through loss over time.48 Such abilities emerge in individuals, families, cultures, and communities and interact with and modify the relationship between adversity (e.g., loss) and physical and mental well-being. In contrast to intrapersonal models of grief, we emphasize social, family, community, and cultural capabilities as moderating variables. The concept of resilience resonates with social work’s strengths perspective and the ecological model of person and environment. • We interweave our personal and professional experiences with the evidence-based literature throughout rather than drawing unrealistic boundaries between the personal, the clinical, and the scholarly.

Summary In our review of the literature and recognition of the many types and meanings of loss, we discuss how developmental tasks interact with some of the most common losses throughout life. We acknowledge that there are losses and interventions that we have not fully addressed, such as those associated with changes in gender identity or becoming homeless. We also recognize that other losses for individuals may emerge as they gain deeper understanding of loss in their lives. We hope that organizing the chapters according to developmental considerations, individual, family, community, cultural capabilities, and resilient outcomes, along with interventions, is useful to your practice and research. At the same time, gaps in research—especially the lack of evidence-informed interventions related to grief and loss for culturally, racially, and socioeconomically diverse populations—prevent us from exploring them fully in each developmental stage. Chapter 1 more fully defines grief, loss, mourning, and bereavement; reviews major theoretical perspectives; and describes some cultural variations in the experience of loss and grief. Chapter 2 analyzes the dynamics, phases, and challenges of the grief process; discusses the distinctions between healthy grieving and complicated mourning; further explores disenfranchised grief, ambiguous loss, anticipatory grief, chronic sorrow, complicated grief, persistent complex bereavement disorder, and trauma; and examines the various manifestations of grief. In chapter 3, we examine factors that influence how people grieve, including the type of loss; personal capabilities such as spirituality and creating meaning; gender, race, and age; and family, community, and cultural strengths. A resilience model conceptualizes the strengths or

16

Introduction

capacities of bereaved individuals, families, and communities, and we explain how resilience affects mental and physical well-being. It takes account of familial, social, and cultural contextual factors, not just individual ones, that affect the integration of loss into one’s life. The losses often experienced at different life stages are examined in the chapters on childhood (chapter 4), adolescence (chapter 6), young adulthood (chapter 8), middle age (chapter 10), and old age (chapter 12). A chapter on appropriate interventions immediately follows each chapter on specific developmental periods (chapters 5, 7, 9, and 13). The intervention chapters analyze the existing evidence about methods effective for different populations and suggest future directions in both practice and research. Working with the bereaved inevitably raises issues about our own mortality as well as our past losses and grief, and chapter 14 addresses professional self-awareness and self-care, including the need to address our implicit biases, racism, sexism, and homophobia.

1 Theoretical Perspectives on Grief

 Works of literature from ancient times to the present as well as contemporary scientific and nonscientific works describe grieving in response to loss as being universal. According to Parkes, “there is something that all who suffer a major loss have in common and the word ‘grief’ does have a universal meaning that transcends culture.”1 An early anthropological study of seventy-eight cultures found grief to be a universal human experience, which was expressed through tears, anger, personal disorganization, lamentation, depressed affect, and difficulty engaging in normal activities.2 This apparent universality was captured by Shukria Alilmi Raad, an Afghan Muslim, at her husband’s death: “No matter how different we look, what kind of religion we practice, or which direction our faith takes us, we all have two things in common in this world: life and death. We have no control over death.”3 Although grief in response to loss is universal, cultures vary widely in how grief is experienced.4 Grief is a complex, highly individualized cultural phenomenon; no universal theory of grief is applicable to all people. Early theories and research on loss and grief tended to take an ethnocentric perspective, failing to consider how culture, race, ethnicity, gender, and religious or spiritual factors influence both grief experiences and professional assessments and interventions. Cultural norms and racial and gender variations often determine how we grieve, and the relationship with the deceased and notions of complicated, “pathological” or exaggerated grief also are socially and culturally constructed.5 Although early theoretical perspectives are limited by their failure to take account of social and cultural constructions of grief, we briefly review them because of their influence on research and practice, including many of the evidence-informed practice interventions discussed in this book.6 Theory is salient to identifying treatment components and delivery methods, informing the selection of outcomes, and influencing the targeting of 17

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Theoretical Perspectives on Grief

interventions.7 The strategic use of theory in intervention development and evaluation often generates evidence for effective clinical practices and therapeutic procedures.8 In this chapter, we begin by defining the key concepts of grief, bereavement, and mourning. We review the primary theoretical perspectives on grief that influence professional interventions, comparing the classic psychodynamic model of grief work with a postmodern, social constructionist perspective focused on meaning-making and continuing bonds with the deceased or absent person. We close by reviewing examples of how culture affects the grief process and rituals.

Definition of Terms Grief As briefly described in the introduction, grief is a normal, holistic reaction to the significant loss of someone or something important to us. Because of the pervasive quality of grief, it affects us emotionally, psychologically, physically, spiritually, cognitively, behaviorally, and socially.9 Grief may be manifested in physiological changes (alterations in immune systems and overall health status), physical sensations (tightness in the chest, lack of energy), and behaviors (e.g., loss of appetite or insomnia); in a constellation of feelings (shock, numbness, anger, rage, anxiety, guilt, and intense sadness); and socially through family, community, and culture.10 Although grief is not an illness or pathology, people occasionally die of a “broken heart” due to physiological changes associated with grief, such as a flood of stress hormones that can cause life-threatening changes.11 The word grief comes from the Latin word gravis (heavy). Indeed, we often refer to a person as carrying a heavy burden of grief. Grieving implies movement from negative emotions of being burdened, acted upon, and passive to positive emotions by taking action, making choices, and, ultimately, healing. A simple biological or developmental process does not control how we grieve, how long we do so, or the meanings we ascribe to loss.12 When we grieve, every aspect of our life is thrown out of balance. Our grief is based on our own unique perspective on loss, as well as on our individual capacities such as personality, the nature of relationships with the lost object or person, and our historical, social, and cultural context. As a result, each person’s grief process differs in intensity, duration, and time to resolution. In grief, people lose an essential part of the inner experience of themselves and their assumptive world. They must change their self-identity to match the new

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reality emerging from the pain of loss and incorporate this into a new assumptive worldview. Grieving pertains not only to how we survive a loss but also to whether we choose to learn to live more fully or creatively, redefning the deepest part of ourselves. It takes courage to feel the pain and face the unfamiliar.13 Not every loss gives rise to grief, however. In fact, Doka cautions that grief may become trivialized if we assume that every loss results in grief, leaving the word signifying little.14 A loss need not be recognized or validated by others for us to experience grief. For example, some people who have lost a loved one through divorce may try to appear “strong” and not grieve openly. But the lack of visible grief does not mean that their grief is denied or abnormal. Instead, their emotional constellation permits attachment without giving rise to emotional expressions of grief. Others incorporate their loss into an existing worldview (e.g., God’s will or a sign of God’s omnipotence; nothing can be done about “bad things that happen, even to good people”). A bond of attachment to the lost person may be absent, for example, in situations of divorce or widowhood after a difficult marriage or a lengthy period of caregiving for a partner/spouse. In such instances, relief may be the primary emotional response, at least initially. Early research on grief labeled responses of suppressing, compartmentalizing, or refusing to acknowledge grief as pathological. More recent social constructionist perspectives recognize that responses to loss vary widely and that “pathology” is culturally constructed.15 Another pattern is that secondary feelings of guilt, blame, and self-doubt may impede expressing primary grief feelings, such as anger and sadness. Feeling guilty and assigning fault may be realistic (e.g., a parent who failed to put a seatbelt on their child) or unrealistic and temporary (e.g., a mother who believes she could have prevented her teenager’s death by not allowing him to socialize).16 When grieving her young son, Pagels acknowledged that choosing to feel guilt, however painful, somehow seemed to offer reassurance that such events did not happen at random. If guilt is the price we pay for the illusion that we have some control over nature, many of us are willing to pay it. To begin to release the weight of the guilt, I had to let go of whatever illusion of control it pretended to offer, and acknowledge that pain and death are as natural as birth, woven inseparably into our human nature.17

People who feel little or no guilt associated with a death typically have communicated effectively, left little unsaid with their loved one, and resolved conflicts. Guilt is also minimized when the bereaved readily accept that there was nothing they could have done differently.

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Bereavement and Mourning Bereavement is the state of individuals who have lost a person or thing they valued (e.g., being deprived) and their overall adaptation to this loss.18 This contrasts with grief, which is our internal experience of loss. However, these terms are often used interchangeably in literature and in clinical practice. Mourning, which is also often used interchangeably with grief, is both the process of adapting to grief and the public and interpersonal response to loss (e.g., funeral rituals and practices, such as black clothing or armbands worn in some cultures to signify mourning).19 Mourning can also be described as bringing internal feelings outward. Everyone grieves, but not everyone mourns. Mourning only occurs if a person feels safe in expressing grief publicly. According to Worden, mourning is an active process involving tasks that include accepting the reality of loss, facing the pain, adjusting to a new environment, emotionally relocating what was lost, and finding an enduring connection with the deceased in the midst of moving forward with life.20 There is disagreement on when mourning ends, with some placing a time limit on it and others questioning whether mourning is ever fully complete.21 A theme throughout this book, consistent with social constructionist perspectives discussed later in this chapter, is that there is no right or wrong, no good or bad, way to grieve or mourn. To imply otherwise is to do a disservice to the intensely personal journey of grief. Given this variation in how we grieve, we urge caution when using the term pathological and prefer the terms complicated grief and prolonged bereavement grief disorder, which are discussed in chapter 2. As noted in the introduction, what was once considered pathological, such as maintaining a bond with the deceased, is now generally considered healthy.22 This illustrates the inherent limitations of many definitions, which are culturally bound, subjective, and susceptible to changing over time. After reviewing major theoretical perspectives on grief, we present examples of how different cultures define grief.

Classical Psychoanalytical Perspectives on Grief Freud Sigmund Freud’s psychoanalytic theory was the first major theoretical perspective on grief, and it profoundly shaped professional interventions.23 His concept of grief work assumed that the primary grief task of the bereaved is separating, or detaching, from the deceased, and this is necessary to complete

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the grieving process. Although it is normal for the bereaved to have an affective fixation to the deceased for a period of time,24 if it lasts too long, it can lead to the bereaved abandoning interest in the present and the future. Because the bereaved has limited time and energy to devote to grief work, the connection with the deceased must end before new relationships can be formed. A grieving individual must sort through internal representations of the lost person, and then the ego must “decathect” (break the bonds between survivors and deceased) to form new mental activities and relationships. The bereaved also must explore early connections of infancy and childhood (the past) before successfully resolving the loss in the present. Breaking such attachments reorganizes the psychic structure, enabling the bereaved to recover from a loss within a year or two and return to earlier levels of daily functioning.25 To achieve this separation demands the mourner’s intense psychological input; hence the concept of grief work is central to Freud’s approach. Grief work refers to the hard active effort of expressing painful emotions such as guilt and self-accusation. Similar to treating a physical wound, it requires energy and courage in a process of slowly healing the wound in the soul and reorganizing the psychic structure. If a person does not engage in the intense effort of grief work, the wound will fester, and the grief process will become complicated and increase the risk of mental and physical illness and even mortality.26 Freud’s model presupposes that a limited amount of time and energy is available to invest in such hard work and stresses the importance of “moving on” as quickly as possible to “normal.” Freud’s perspective is criticized for implying that completed grief work represents a cure and for pathologizing longer-term grief reactions. Today few practitioners believe that the mental energy invested in representations of one person is necessarily lost to other mental activities, even though elements of the psychoanalytical approach may still influence practice. In contrast, the social functional and postmodern perspectives emphasize that the goal of grieving is not to disengage completely from memories of lost relationships and bonds with the deceased.

Lindemann and Parke Similar to Freud, Lindemann maintained that the duration of grief reactions depends on how well a bereaved person performed grief work. He viewed acute grief as a psychiatric syndrome characterized by somatic distress, preoccupation with thoughts and images of the deceased, despair, guilt, hostility, inability to function, and development of traits of the deceased in one’s own behavior.27 Grief was regarded as a disabling condition, particularly when

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prolonged or delayed and when psychological suffering manifested in physical problems, morbidity, and mortality. Resolution occurred by detaching from connections to the deceased, readjusting to the environment without the deceased, and forming new relationships. The personality of the bereaved and the community’s response also influenced the severity of the grief reaction. With treatment, severe psychosomatic and medical problems stemming from a lengthy separation process could be avoided or minimized. Lindemann maintained that grief reactions could be managed in eight to ten interviews over four to six weeks. Grief that lasted longer than this was considered to be distorted or pathological. In addition, individuals whose support systems were characterized by conflict and guilt were more likely to show pathological grief, a pattern found in more recent research as well.28 As noted by Klass, Lindemann’s focus on grief pathology meant that some people’s grief process was defined as better than others.29 In marked contrast to Lindemann’s30 view that grief can be resolved within six weeks, most clinicians now recognize that grief will always be present, that “you don’t get over it,” and that “time does not heal.” Instead, we will always be sad when we think of the deceased or absent person, but the pain eventually loses its once wrenching quality and waves of grief come less often. Parkes was another pioneer grief researcher influenced by Freud’s concept of grief work. If bereaved people had the courage and energy to “work through” and express their feelings, Parkes believed they could achieve resolution within a relatively short time. He identified two elements that influence grieving: 1. Stigma of the person “tainted by death,” with others often avoiding the bereaved or feeling uncomfortable in the person’s presence. 2. Deprivation owing to the absence of love and security that was provided by the deceased.31 Because such views of grief were based on clinical observations and psychotherapy, they often overlooked social, cultural, and structural factors or interpersonal interactions in the grief process, such as the later conceptualization of grief as a stressful life event requiring individual coping skills (see chapter 3). Nevertheless, the grief work approach still affects how grief is viewed. For instance, well-meaning friends and professionals may suggest that grief is taking too long or that the bereaved should keep busy, go out, meet new people, have another child, join a singles’ group. In addition, we often put on an exterior appearance of being fine to keep others at an emotional distance and avoid causing them discomfort by talking about our grief. Grief is not an

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event that we must get over as quickly as possible but is an exhausting process that takes time and patience and consumes extensive emotional and physical energy. In that sense, all grieving is hard work, even if it does not fit into the grief work model proposed by early grief theorists. Despite numerous critiques, the psychodynamic approach to grief work has significantly influenced theory and practice interventions.32 Because of its dominance, it is important to understand it and draw upon parts that seem helpful, along with later perspectives, such as the postmodern view of the importance of ongoing bonds with the deceased.

Bowlby Another limitation of grief work is its failure to fully recognize the extent of attachment to the prior relationship, Bowlby’s attachment theory is a useful way to think about what is broken or lost when a family member or friend dies or disappears and to identify individual differences in intense emotional reactions to loss. The role of attachment, or security, emerged in Bowlby’s research on the effects of a mother’s death or disappearance on children’s later delinquency.33 Adult attachment bonds are derived from the same emotional system underlying child attachment and come from the need for safety and security. The death of a loved one elicits an adult version of the infant’s response to attachment loss; clinging, crying, and anger represent an effort to restore the attachment bond.34 Both children and adults experience an initial numbing focus of attention on the lost figure through vigilance, yearning, or pining (e.g., wishing, longing, desiring) to recover that figure.35 This phase of deep sorrow is described as hollow and confused without the deceased.36The Chinese use the phrase sei bu de (not wanting to abandon or let go) to refer to missing the deceased.37 When attachment bonds are broken, restlessness, intense distress, despair and disorganization, loss of security and the resultant separation anxiety and anger, and eventually acquisition of new roles and social relationships occur.38 Parents’ grief over a child’s death, in particular, is conceptualized as a disruption of attachments, which creates a similarity between grief in adults as protectors of their families and separation distress in children who are protected figures.39 Attachment in parental grief may emerge as intense wishes to protect and soothe the dead child, often accompanied by guilt for not having protected the child from death. Attachment theory cannot fully account for their anger, resentment, shame, or self-doubt, however.40 Attachment bonds encompass both positive and negative feelings (e.g., a child who is neglected

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or abused may still feel emotionally connected to the abuser). In contrast to Western views, some philosophical and religious belief systems, such as Buddhism, regard attachment as a primary cause of suffering.41 An attachment bond can persist even when interrupted by death. For example, entering a new emotionally satisfying marriage does not end grieving for a partner who died, nor does having another child resolve the grief for a child who died at birth. It is not the loss of the role occupant that gives rise to grief but the loss of a particular person. Thus a grieving person’s despair may continue even when there are positive substitute relationships. Because of the role of attachment security for adults, emotional loneliness unique to a primary attachment such as marriage cannot be assuaged by social support in ways that social loneliness might be addressed. Multiple attachment bonds to children, other relatives, and friends are likely to be embedded in these primary relationships; a widow or divorcée loses not only her partner but also past relationships with others.42 In contrast, friendships and relationships with colleagues can be important but do not encompass a bond of attachment. When these types of relationships end, distress, but not grief, typically results.43 Bowlby’s work reflected the classic model of resolving grief; he saw talking about the deceased as a way to eventually let go, with the process of grieving leading either to the ability to form other relationships or an inability to do so.44 Others also have explored how attachment styles influence the grief process.45 For example, Parkes identified adults with secure attachments to their parents during childhood as showing less grief and distress over losses than those who demonstrated separation distress with parental figures.46 Others found that people with a secure attachment style generally follow an adaptive course of grieving, reacting emotionally to loss of a significant person but not being overwhelmed by grief.47 In contrast, those who learned to avoid attachments experience more difficulty expressing their feelings of grief. Further research to understand how attachment styles affect bereavement outcomes is made difficult by the ambiguous validity of measures such as degree of attachment.48 In both Lindemann’s and Bowlby’s models, if the bereaved are able to express their feelings of yearning and searching, they can move past disorganization and achieve reorganization. Loss is viewed as a transient state that is resolved by developing a coherent narrative about it.49 Secure individuals are able to express emotions to a moderate degree, provide a coherent account of their loss-related experiences, and update their “internal working models” of the dead person. Unresolved grief is described as an inability to think and talk coherently about loss. According to both Lindemann and Bowlby,

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prolonged grieving involves self-blame and lowers self-esteem, is pathological, and stems from flaws in a person’s emotional development during childhood. Grief work is necessary to resolve negative emotions, especially anger and hostility toward what or who was lost, and to recover. Such “working through” is a cognitive process of confronting loss, going over the events before and at the time of a loss, focusing on memories, and working toward detachment.50 Grief work theorists generally view the expression of positive emotions as a form of denial that may result in a “delayed grief reaction.”51 However, delayed grief reactions are rare.52 In contrast, detachment from grief may lead to a more positive recovery than does a primary focus on feelings of loss. Moreover, in some studies, positive emotions such as smiling are associated with reduced grief at fourteen and twenty-five months.53 In fact, humor, especially laughing with other people, can be therapeutic in the grief process.54 To summarize, grief work was regarded as a period of intense distress and inevitable pain that must be confronted, fully experienced, and worked through—from avoidance to confrontation to accommodation.55 If this does not occur, avoiding or minimizing the expression of negative grief-related emotions results in a more intense, protracted bereavement. Professional help can facilitate the work of focusing on feelings of loss and venting negative emotions before a person begins to heal. Deviation from the grief work process of moving forward was viewed as pathological.56

Postmodern Critiques of Grief Work Although Freud’s grief work perspective was widely adopted for more than fifty years, empirical evidence of its benefits is weak.57 Critics maintain that confronting negative emotions through grief work in a therapeutic setting, often accompanied by intense sadness, can lead to negative thoughts, depression, and malfunctioning, such as difficulty thinking or completing tasks. Little empirical evidence exists that confrontational strategies are associated with better outcomes for grief work. Moreover, obsessively discussing how the loss occurred may create future preoccupation or excessive rumination.58 Critics of grief work contend that distress and depression are not necessary and that failure to experience them does not indicate pathology. “Instead, a lack of distress may be attributed to cultural norms governing expression of emotions or too little or insecure attachment to the deceased.”59 Depression and distress are not inevitable and universal responses to grief, and Camille

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Wortman and Silver observed the majority of studies show that “low distress,” not “no distress,” tends to be associated with good adjustment. They also concluded that distress is common and that depression is found more often in bereaved than in nonbereaved individuals. In their view, these findings do not contradict studies concluding that distress and depression are not universal or inevitable. Such apparent discrepancies are explained by factors that may lead to the expression of more negative feelings, such as the extent of attachment to the deceased, an ambivalent relationship with the deceased, the manner of death (e.g., a child’s death by a drunk driver), and the extent to which death shatters previously held beliefs about the bereaved or their world.60 Whether grief is always accompanied by depression is also unclear. In reviews of the literature prior to 2000, 30 to 40 percent of bereaved people showed symptoms of clinical depression, whereas more than 50 percent had only moderate symptoms.61 For individuals with a history of depression, anxiety, and PTSD, rates of complicated grief and distress reactions were higher.62 More recent research found that only 5 to 10 percent of the population has disturbed grief following a natural loss, with it being slightly higher for those grieving nonnatural losses such as accidents, suicides, or homicides.63 Overall, most people are distressed immediately following a loss, with symptoms ranging from mild upset to severe anguish, but only a minority of the bereaved suffer from clinical levels of depression.64 Corr and Corr succinctly state that sadness and other common symptoms of grief may resemble clinical depression but that grief is a healthy response to loss, whereas depression is a mental disorder or disease.65 Worden offers a useful differentiation between grief and depression. However, both may be characterized by sleep and appetite disturbances and intense sadness, and in a grief reaction, loss of self-esteem and holding oneself responsible for the loss also occur.66 Klass posits that grief’s ongoing sorrow characterized by regret is a potentially nondebilitating depression compared to psychiatric depression filled with self-accusations.67 Accordingly, solace or consoling those who are grieving can help alleviate but not remove their sorrow or distress. After an extensive review of the literature and of clinical opinions, the Scientific Advisory Committee of the Association for Death Education and Counseling concluded that the theoretical question of whether grief and depression are the same or different could not be fully answered on the basis of available evidence.68 In summary, Wortman and Silver suggest that working through grief can have negative consequences, but others contend there is no evidence that those

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who work through a loss are less successful in resolving their grief than those who do not.69 In other words, some bereaved individuals engage in grief work, but others “keep busy” without necessarily delaying their grief responses.70 In addition, those who grieve longer than what is considered normative are not necessarily suffering from chronic or pathological grief.71 Others have suggested that it is not the length of time but the quality and quantity of reactions over time that distinguishes “normal” from “abnormal” grieving.72 Social constructionists contend that normal and abnormal grief are social and cultural constructs and that professionals’ use of them can harm bereaved individuals. The particular grief experience as a reconstruction of meaning in the face of challenges to life constructs is unique to the individual.73 Grief is not a single event that we must “get over” as quickly as possible.74

Social Functional Approach The social functional approach maintains that recovery is most likely when emotions focused on the pain and negative nature of loss are minimized or regulated and positive emotions that encompass potential gains are sought or enhanced. Emotion and grief occur at different times. Whereas emotions are ephemeral, lasting a few seconds to several hours and are related to simple and proximal appraisals of danger or benefit, grief is an enduring state that may last seven to eight years following a major loss. Grief involves a profound evaluation of encompassing an irrevocable loss, a sense that a “piece of me is missing” that envelops the bereaved’s identity and cognitive understanding of the world and the future. Moreover, different emotions occur during a single period of grief, including positive emotions related to humor, happiness, and pride.75 Focusing on negative emotions alone impedes functioning and leads to more severe grief. Prolonged negative emotions (e.g., anger, hostility, guilt, rage) can lead to greater mental and physical health problems, pessimism and hopelessness, and disrupted social and personal relationships. Positive emotions, especially laughter and reaching out to others, evoke positive responses from others and can improve social relationships and long-term functioning. Distraction is useful when it minimizes the amount of information about the distressing loss. This evidence underlies the social functional approach on minimizing the expression of negative emotions through distraction in the early months of bereavement. Social functionalists contend that limited negative disclosures and the continuation of a relationship to the deceased are healthier and lead to a faster recovery than does the expression of primarily negative emotions. In addition, grief is better resolved when bereaved people

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try to make sense of their experiences by finding meaning in the changed roles and boundaries of the family system and the social environment.76 More recent empirical evidence suggests that sharing an emotion and confronting and processing a loss does not necessarily bring emotional relief or recovery.77 Accordingly, expression of primarily negative emotions can reduce a person’s interaction with some support networks. Too much “talking about” may cause listeners to withdraw, resulting in less support.78 Conversely, social sharing, particularly with those who have experienced similar losses, serves functions other than relief by enhancing interpersonal relationships, social integration, and a sense of community. For example, participation in support groups, such as Compassionate Friends for bereaved parents or Widowto-Widow, may lead to new relationships or to maintaining close, satisfying ones. In contrast to talking about grief, writing about painful experiences, especially for those who may not readily disclose their feelings to others, is associated with indicators of well-being, including fewer visits to physicians and improvements in mood. Social functionalists acknowledge, however, that the emotional avoidance of loss through substance abuse is an exception to functional patterns of distraction and denial.79 In summary, rather than assumptions about how people should grieve, later models are more aware of individual, contextual, and cultural influences on the expression of grief. For example, idiographic theoretical approaches emphasize individual differences and the unique experience of grief. Although the bereaved still need to accomplish tasks, they do so in varied ways and require different types of support. Similarly, professionals’ grief-related beliefs may influence how they understand and support an individual’s grief process.80 The idiographic model also makes explicit how gender influences how we grieve. It posits a continuum of styles, with intuitive on one end (e.g., emotion-focused), instrumental on the other (e.g., cognitive and behaviorally focused), and a blended style in between (e.g., shifting from one to the other as situations require). Within this theoretical framework, adaptive grieving styles and resilience-based models recognize positive coping and outcomes.81

A Postmodern Social Constructionist View of Grief Earlier models conceptualized grieving as severing bonds with the deceased, whereas the postmodern social constructionist approaches view such bonds as resources for enriched functioning. Postmodernism acknowledges the multiplicity of perspectives on grief because each bereaved individual’s struggle is unique. This recognition of the heterogeneity of grief responses contrasts

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with earlier modernist or positivist models of grief as a process of detachment characterized by universal symptoms and stages of adaptation. From the postmodern perspective, vacillating between avoiding and engaging in grief work is fundamental to grieving. For many individuals and families, this means finding and experiencing joy as they work through their sorrow and pain.82

Reconstruction of Meaning These later models point to reconstruction of meaning as central to the potential for positive transformation or posttraumatic growth through the grieving process.83 Grief, particularly in response to a loss that goes against a normative course of events (e.g. a child’s death), often entails a crisis of meaning. Engaged in a transformative struggle between positive and negative outcomes, the bereaved copes with thoughts of what might have been and tries to preserve meaning in the face of the disruption caused by loss.84 Experiencing death or other major losses can validate or invalidate our beliefs and assumptions about life. A sudden, unanticipated major loss can interfere with the bereaved’s ability to rebuild his or her assumptive world. Bereaved individuals may have no mental constructions to help them with the meaningmaking process and incorporate loss into a new worldview. Meaning may be something we create rather than find.85 Similarly, Neimeyer contends that meaning-making is a process, not an outcome.86 Tedeschi and Calhoun caution that the assumption that trauma often results in disorder should not be replaced with contrasting expectations that growth is inevitable.87 Positive transformation, such as an increased appreciation for life, modified priorities, and more meaningful social relationships, can emerge from grief, but not everyone experiences such growth. Continuing distress and growth can coexist; they are not dichotomous.88 Moreover, some deaths, such as that of a distant relative or neighbor, do not fundamentally challenge personal meaning. Social constructionists believe that the reconstruction of meaning is the central process of grief because it is the act of affirming or reconstructing a personal world of meaning that has been altered by loss. Most definitions of meaning contain two concepts: making sense of loss (e.g., death was predictable and fits the bereaved’s perspective on life and religious or spiritual beliefs) and finding benefits from loss, such as growth in character and a strengthening of relationships.89 These two distinct processes are interrelated because one way to make sense of a loss is to become less focused on what is lost and find benefits from the experience and thus perceive the world and oneself in positive terms over time.90 Neimeyer identifies three principles as central to

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meaning reconstruction: (1) reaffirming or reconstructing a world disrupted by loss; (2) redefining, not relinquishing, a continued bond with the deceased; and (3) narratives or telling stories to restore a sense of autobiographical coherence disrupted by loss.91 Grief, as a highly personal process, can be understood only within an ongoing process of “constructing and maintaining our most basic sense of self.”92 The death of those we love can greatly alter our sense of who we are because we create our identities largely through others’ reflections. As a result, the grieving process requires not only relearning a world disrupted by loss but also constructing a new sense of self. Narratives can be a way for the bereaved to make order amid disorder, find meaning in the meaningless, and integrate loss and grief into his or her life.93 Meaning occurs when individuals share their stories as a way of socially validating their life in new and existing relationships and social, community, and cultural groups. Bereaved individuals take part in a self-narrative to transform their identity by redefining their connection to the deceased while also maintaining and negotiating relationships with family, friends, and new networks, such as support groups for the bereaved.94 As people age and mature, they may have to reexamine their grief over earlier losses because the meaning of early losses may shift over time.95 More research is needed on the quality of meaning-making efforts to keep pace with theoretical developments on meaning.96 By focusing on ways that the bereaved make sense of loss, an important aspect of meaning—life significance—may be overlooked. Identified more recently than meaning-making, life significance is the felt perception that some aspects of one’s experience “matters.” The bereaved may lose life significance along with their lost loved one, or they may develop new avenues to life significance as they confront their mortality and rebuild their shattered worldview.97 Those who engage in a rebuilding process, discovering what matters and nourishes their life, are less likely to experience prolonged grief than those who continue to feel adrift and shattered.98

Continuing Bonds with the Deceased As noted in the critique of grief work, rather than a “period of letting go,” the relationship with the bereaved is transformed and continued for an indefinite time. In addition, grief is not defined as pathological because each person’s response must be considered in the context of the bereaved’s personality, relationship to the deceased, and family, cultural, and religious background.99 In contrast to the classic view that severing bonds with the deceased is central to “recovery,” these continuing connections become inner representations

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of the deceased and change both cognitively and emotionally over time.100 Not all bereaved people find comfort in continuing bonds; some may find them unnecessary or interfering with adaptation.101 The underlying dynamics of continuing versus relinquishing bonds and how these bonds are related to adaptation need to be examined.102 Although internalized bonds with the deceased are comforting, externalizing continuing bonds—hallucinations and hearing voices of the deceased after traumatic loss—is associated with poor adjustment over time.103 The increased clinical and theoretical recognition of the value of continuing bonds is discussed more fully in chapter 2. Beyond acknowledging that these different views of grief work conflict, too little is known to claim that we have discovered the best way for people to grieve. In contrast to early theories, a “new wave of grief theory” makes no assumptions about the universality of a predictable “emotional trajectory” and recognizes that adaptation is more complex than a movement from disequilibrium to readjustment.104 This constructionist approach recognizes that no two people will experience similar grief in response to the same loss and that cognitive processes (constructing meaning or rebuilding previously held assumptions) are central. Each person constructs a different phenomenological world and occupies a distinctive position in relation to culture, race, gender, spirituality, and religion. Thus it is not surprising that men and women from different cultures and racial and ethnic backgrounds often grieve in markedly different ways. Increasingly, grieving is seen as an active process, with conscious and unconscious choices. Our private grief is linked with others’ constraining and enabling responses, such as how friends, family, and even strangers react to our loss.105

Reconciliation of Theoretical Perspectives Lindstrom tried to reconcile some conflicting views by discouraging both traditional grief work, which might make bereaved people force themselves into endlessly repeated ruminations, and the opposing idea that people should try to forget their loss at all costs.106 Instead, he recognized that we can have sad emotions without becoming engulfed by them, and we can stop focusing on our sadness and pain when the grief becomes too burdensome. Thinking about and cognitively sorting out emotions does not mean compulsive grief work. Involvement in ordinary life should be encouraged as much as the bereaved can manage because daily tasks and social encounters are often connected to positive experiences that can help rebuild their life. Consistent with the perspective of reconstruction of meaning, interventions should not try to alleviate grief to the point that its benefits disappear. As emphasized

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throughout this book, grief and loss can add meaning, sense, and significance to one’s life, “just as shadows give depth to a landscape.”107 Proposing a combination of the classic and postmodern paradigms, Rubin argued that the grief process both disrupted and achieved new levels of functioning and of the quality and nature of the relationship to the deceased.108 Involvement with the deceased should not replace relationships in the present but instead should complement them to enable current functioning. Adaptation occurs when memories and thoughts of the deceased are balanced and provide strength and warmth for the bereaved. Others refer to a dual process model (DPM) of “holding on” and “letting go,” or alternating (oscillating) between loss and restoration, between confrontation and the avoidance of different stressors. The restoration orientation allows the bereaved to move into new roles and activities (e.g., a widower who begins doing household tasks and dating after a long period of caregiving), and the loss orientation allows the bereaved time to process the loss.109 The DPM is relevant to most of the developmental stages discussed in this book.

Cultural Variations It is now widely recognized that grief and its expression are socially and culturally constructed.110 In any culture, both implicit and explicit messages convey whether death is to be considered an uninvited stranger or a welcome guest.111 Even if people are not conscious of these messages, they affect how they grieve.112 As the bereaved try to make sense of death, cultural and social environments shape answers to their questions: What do death—and life— mean? What did this person mean to me and this community? What does my life mean now that this person is dead? Moreover, the cultural context modifies the perception of and interpersonal and intrapersonal responses to the grieving process, in effect determining whether we will be beaten down by loss or emerge more resilient.113 Both theory and practice now recognize the need to take account of how different cultures distinctly describe and express grief and adapt to loss through their own extrinsic and intrinsic beliefs, values, expectations, ceremonies, and rituals, which give meaning to individual and collective loss.114 There is increased need for practice interventions that take account of race and ethnicity, sexual orientation, religion, spirituality, socioeconomic status, family structure, and communication patterns, as well as racism, sexism, and homophobia.115 In cultures that value independence, individuals are generally expected to recover quickly from grief that is seen as interfering with daily routines.

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In fact, there may be more tolerance for a slow recovery from a physical illness than from the emotional wound of loss. In some cultures, grief may be expressed through rage and wailing, but white Eurocentric culture generally tries to deny and shut down such intense feelings, and individuals are often uncomfortable around others’ sadness and tears.116 Friends, coworkers, and even family members may urge us to find “positives,” “get over it,” be strong, keep busy, and move on with life—an approach congruent with the grief work model. Pain is viewed as something to be avoided rather than being an inescapable part of being human. These dominant cultural beliefs about grief exist within institutions and systems that impact the length of bereavement leave and individuals’ and communities’ responses to the bereaved. People from other cultures and racial/ethnic groups, within and external to the United States, organize their experiences differently in the context of their beliefs about the origins of events, the nature of the person who died, the appropriate way to behave, and the meaning of loss.117 In life crises, people are likely to embrace cultural values and beliefs that help them make sense of their world or bring meaning to guide their behavior even though they may not acknowledge these values in their daily lives. Every culture has expectations about how intensely to grieve and how much to distance ourselves from grief, and we move between these expectations through time.118 What may appear to outsiders to be discordant beliefs may be normal for a particular culture. For example, although crying appears to be a universal response, the Balinese generally do not cry but instead put on a smooth, unruffled, even happy exterior. They do so because they believe that the gods will not heed their prayers if they are not calm. Similarly, Somalians try not to cry over death, concealing their feelings of distress in an attempt to get over the loss quickly.119 In contrast to the Balinese and Somali, the Toraja of Indonesia are concerned for grieving people who do not express their feelings. In other cultures, such as the Ilongot tribe in the Philippines, grief is expressed through rage and violence.120 Culture also strongly influences the structure and content of language related to grief that subtly configures the bereavement experience, as seen in these examples. The Spanish translation of the word grief is “affliction,” which implies suffering from an outside source and is a passive experience. The American experience of grief encompasses the whole person, is internal, and has an active component (e.g., to act to overcome our grief).121 In contrast, the Ifaluk, a Pacific atoll people, use the terms lalomweiu (loneliness combined with sadness) and fago (compassion combined with love and sadness) to talk about their grief.122

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Beliefs about death (e.g., the possibility of a future reunion with the deceased, the meaning of emotions, and what to say to others) are also culturally defined. For example, the Ilafuk in the Philippines distinguish losses that are inevitable or justified (e.g., dying naturally in old age) from those that are illegitimate frustrations, such as accidents caused by and preventable by others. Different losses call for different self-talk about the loss, behaviors, expressions of feelings, and others’ responses. After a good cry, the Ilafuk are expected to return to daily life and forget the deceased. In contrast, Egyptian mothers experience years of muted depression, sadness, and suffering after a child’s death.123 Using Western standards, the contrasting behaviors of the smiling Balinese, the composed Ilafuk, and the mute Egyptian mother all might be viewed as pathological rather than culturally constructed. Wide cultural, spiritual, and religious variations exist in the rituals and ceremonies preceding and following a death.124 Loss is central to Buddhism with its notions of impermanence and the inevitability of suffering.125 Buddhists focus on their belief in karma and reincarnation and the predetermination of their current life by good or bad deeds in their past lives. The deceased is viewed as moving toward enlightenment, and survivors continue their bonds with him or her. Mourners wear black clothes and armbands during the prescribed mourning period of forty-nine days. A special ceremony is held on the seventh day after the funeral and is repeated every seven days for seven weeks. The anniversary of the death and two special memorials are set aside for surviving family members to pay their respects at grave sites.126 Hmong spiritual beliefs emphasize finding the most appropriate place to die. Individuals must not die in the home of those not related spiritually or by blood (e.g., members of another clan) because this is believed to unleash the anger of the house spirits, who may withdraw their protection from the homeowner’s family, causing illness or misfortune.127 Latinx tend to view death as a complement to life. Death is an integral part and continuation of life, a transformation without beginning or end. God has control over both birth and death, and the spiritual world is believed to transcend the human world and to control life.128 Latinx believe that the spirit evolves, beginning at a level of ignorance and moving toward a state of moral perfection. To attain this higher level of “light and understanding,” the spirit must be able to detach from Earth, which is difficult when a person dies prematurely without resolving family conflicts or paying old debts. Similarly, if families were not present at the death to say good-bye, their loss tends to be unresolved. Because many Latinx believe in communication with the dead, they may visit spiritists or mediums to resolve issues with their loved

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ones, especially when they have dreams about the dead returning to say farewell or deliver a special message. Such dreams are viewed as signs that the spirit is restless and must communicate before leaving the material world.129 Those who are Catholic anticipate reunification in the afterlife and believe the deceased’s spirit needs reassurance from the living to obtain peace in the afterlife.130 After the deceased is buried, both men and women are expected to accept the death and to be strong. To maintain bonds, some Latinx families gather for at least seven nights to say a rosary and frequently visit the grave and attend Mass. The Day of the Dead, along with storytelling and pictorial remembrances, is a tangible way of observing daily connections with the deceased. At traditional African American funerals in the rural South in the past, the deceased’s personal property was often placed on top of the grave to ensure a peaceful transition. If the person died at home, some people believed that the body had to be removed through a hole in the wall rather than through a door to make it difficult for the dead person to remember the way back to the living.131 Native Americans generally do not publicly express their grief, and tribes have particular rules about how the deceased and the survivors are to be addressed. For example, Hopis are expected to display a positive attitude while grieving, although within the family, members may cry and show other outward signs of grief.132 Individuals and families who practice Islam typically bury their dead within twenty-four hours and disapprove of cremation, whereas Hindus believe that death is the end of the body but not the soul and that cremation allows the soul to continue to exist.133 Even within groups, cultural differences based on country of origin or indigenous populations’ tribal status may create additional variations in how grief is expressed. Influenced by Confucianism, Daoism, and Buddhism, in many East Asian cultures death is considered to be the most significant life transition. Rituals have evolved over thousands of years to help families deal with death. The funeral is a community affair, and a good “send-off” ensures that the deceased’s immortal soul will not live in poverty or hunger. In some Asian cultures, weeping or wailing is typically accepted and even encouraged. For example, Korean and Chinese mourners openly express their grief, typically wailing loudly during the funeral until the deceased is buried.134 In Chinese culture, weeping is often viewed as an indicator of filiality.135 The popular Chinese saying for sharing tears is tong gan ku (together we taste the sweet and the bitter), meaning that just as we share joy, we also share the difficulty of sorrow. In Japanese culture, men are not to show their emotions in public

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because this would make guests uncomfortable. Women are allowed to cry in a moderate manner, but they do not wail uncontrollably, which is congruent with social and cultural expectations not to display emotions openly. This does not mean the Japanese are less sorrowful than Korean or Chinese mourners. Instead, intense moments of grief occur privately. Whether emotions are felt, how they are expressed, and how they are understood are particular to each culture.136 In addition, cultural norms about emotional expression of grief often change over time. Less is known about how culture influences the emotional expression and integration of losses other than death. Refugees and immigrants, for example, may have to deal simultaneously with loss of homeland, personal belongings, family members, economic status, professional identity, cultural traditions, language, and sense of self. The ongoing, deep-seated nature of such prolonged and intense grief, often in response to ambiguous loss, undoubtedly complicates the intensity and duration of the grieving process.137 Expressions of grief also vary across generations. Among Native American tribes and other indigenous populations, historical loss and trauma affect current losses faced by individuals, families, and communities. Historical trauma is a cumulative emotional and psychological wounding that happens as losses, such as loss of place, accumulate over time and are passed down through generations, profoundly affecting how people grieve.138 By understanding generational loss among indigenous groups, interventions are more likely to be effective in addressing suffering.139 In summary, variations in grief arise out of societal, cultural, and religious/ spiritual worldviews. Differences in patterns of behavior and social support reflect a culture’s expectations of what is appropriate. Examples of variations both within and across cultures discussed throughout this book highlight the need for professionals, families, and friends to take account of different cultural lenses and social realities by race, ethnicity, and gender. Keep in mind that these statements are generalizations, and there are undoubtedly exceptions. Acknowledging that numerous variations exist within a culture as well as among cultures and across generations, we have tried to avoid stereotyping or overgeneralizing. For example, any description of Asian Americans must take into account the great diversity within that culture consisting of at least thirty distinct nationalities and ethnic groups who speak more than one hundred different languages. Latinx encompass Cubans, Mexicans, Puerto Ricans, Central and South Americans, and native Mexican American or Chicano populations. Intragroup differences related to grief exist not only because of ethnic background variations but also due to socioeconomic status

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and education. Social workers and other professionals must take account of socioeconomic differences within racial and ethnic groups and cultures that affect the grief process. As we identify cultural characteristics that distinguish certain communities, we hope professionals will learn to address other variations when working with groups different from their own. Unfortunately, relatively few evidence-based interventions exist that take cultural differences into account.

Summary This review of theories of grief reveals both consistency and divergence of views. The clinical models concentrate on manifestations and behaviors associated with grief in developing interventions. These models are based largely on individual, psychodynamic views of personality and, to some extent, employ the grief work perspective of detachment. The research models typically identify variables affecting grief responses, such as personal, family, and community characteristics that affect resilience, other concurrent stressors, social supports, the relationship with the deceased, and the nature of the death. Most theoretical models explain only a few aspects of the grief experience and do not adequately take account of differences among cultures, race, ethnicity, sexual orientation, and gender. Gaps in these models require longitudinal research, such as understanding the cross-generational nature of loss for the family and the social, cultural, and environmental contexts that influence the grieving process across the life course. Conceptualizations of the duration of bereavement were revised many times during the twentieth century. Early clinicians considered the grief response to be long term.140 In the middle of the century, grief was viewed as acute and short-lived.141 A “new wave” of postmodern grief theory recognizes the complexity and cultural diversity in grief and posits that meaning-making and continuation of bonds are central to grieving.142 With the evolution of both clinical practice and research has come some agreement on general concepts, such as the normalcy of many grief manifestations. However, symptoms and behaviors that constitute complicated grief are still being debated, and we discuss these more fully in chapter 2.

2 The Grief Process and Types of Grief

 The GRIEF process perspective, presented throughout this book, recognizes the alternating currents of emotions, thoughts, and behaviors through which people move at different rates and perhaps more than once. As C. S. Lewis wrote, “sorrow turns out to be not a state, but a process. It needs not a map but a history as there is something new to be chronicled everyday.”1 In this chapter, we review major conceptual models related to the grief process (stages, tasks, and phases of grief), recent models that give greater attention to posttraumatic growth or transformation, ongoing bonds with the deceased, and cultural variations in the grief process. Although most models pertain to death, they also are relevant to a wide range of other losses.

Stage-Based Models The widely known five stages of dying model has been applied to both the dying and their survivors. Viewing death as the final stage of growth, Kübler-Ross identified these five stages related to dying: (1) shock and denial; (2) anger, resentment, and guilt; (3) bargaining; (4) depression; and (5) adjustment/ acceptance.2 Her model is based on extensive clinical work with the dying, not on survivors struggling with grief. Nevertheless, these stages are often inappropriately applied to the grief process.3 Failure to move through these stages in a timely fashion is considered problematic because incomplete healing puts the bereaved at risk of future difficulties such as health problems. Stage-based models are congruent with the early grief work approach, in which the loss is processed externally and verbally and bonds with the deceased are broken to achieve resolution/recovery within a relatively brief

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time.4 Bowlby identified four phases similar to Kubler-Ross’s stages: numbness, yearning and separation anxiety, despair and disorganization, and reemergence into life.5 His model is distinctive in addressing losses in functions, roles, health status, and dreams about the future rather than focusing primarily on relationships. Widely criticized for suggesting that individuals must move through these stages as a “normal” response to grief, Kubler-Ross’s and Bowlby’s models have been empirically rejected. Grief does not proceed in a linear fashion but reappears again and again, and emotional reactions to death vary greatly. Indeed, professionals uncritically accepting the stage model can pose a risk of harm to clients.6 In contrast, a meaning-oriented approach conceptualizes grief as a highly individualized process largely affected by the personal meanings that the bereaved ascribe to loss (see chapter 1). Moreover, meaningmaking appears to be a stronger predictor of grief indicators of disbelief, anger, yearning, depression, and acceptance rather than time since loss.7 Kessler, a coauthor with Kubler-Ross, now argues that there is a sixth stage of grief: finding meaning, rather than acceptance, can transform grief into a more hopeful experience.8 The primary criticisms of these early stage- or phase-based models are that they exclude physical and spiritual experiences of grieving, allow little room for individual variation and complexity, and are culturally biased. For example, linear progression, goal completion, autonomy, and detachment are largely Western values.9 As noted in chapter 1, Wortman and Roxane Silver challenged beliefs that normal grief must involve intense emotional distress and be worked through in order to be resolved.10 Similarly, Bonnano and Kaltman posited that some repression and avoidance can be helpful.11 And Corr noted that universal stage models risk overgeneralization that may stereotype vulnerable individuals.12 Despite theoretical and empirical critiques, stage-based models continue to influence both research and practice.13

Grief Tasks Model In the tasks model of grief, the bereaved must accomplish behaviorally oriented tasks rather than progress through stages, and allowances are made for individual differences in how tasks are completed.14 Tasks are viewed as being nonlinear, with the bereaved moving fluidly between them as well as in and out of active grieving. Tasks can be revisited, worked through again and again,

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and even worked on at the same time.15 Tasks necessary to restore functioning and integrate the loss include: • Accepting the reality of the loss by moving beyond disbelief. • Experiencing and processing the pain of grief. • Adjusting to an environment in which the deceased is absent or missing, including finding meaning in the loss and creating a new identity. Early models posited that the last task is withdrawing emotional energy from the past relationship and reinvesting it in other relationships.16 Worden has since modified this model so that the last task is finding an enduring connection with the deceased while embarking on a new life.17 This modification recognizes that mourners do not disconnect from the dead but relocate the deceased in their lives and develop continuing bonds with them.18 Worden posits that failure to complete this challenging last task is in effect not living. He identified other factors that also affect the experience of the bereaved, including who died and how, the nature of attachment to the deceased, personality variables, and concurrent stressors. Some death-related factors, such as level of violence or trauma and whether the body is recovered, can make the grieving process more difficult.19 Parkes’s grief theory is also stage-based, and he described the following stages.20 • Protest or preoccupation with the loss that includes agitation, tension, and vigilant attentiveness to the possibilities that the lost figure or object may reappear. • Despair, numbness, disorganization, searching/pining, withdrawal of attention from everyday life, low moods, and sadness. • Realization and reorganization/recovery when the death becomes psychologically real. Parkes viewed grief as an acute stress response to a major life transition that necessitates readjustment in which the bereaved change their view of the world and how they relate to others. Losses are conceptualized as turning points that may become growth points, but only if the pain is worked through by releasing emotions, which manifest as “pangs of grief.” These are acute episodes in which the absent person is strongly missed and are characterized by “pining,” a persistent wish for the person who is gone, along with preoccupation with thoughts of the deceased. Such pining may lead to intense searching behavior in an attempt to recover and reunite with the lost object or person. When such searching fails, the bereaved feels intense

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psychological pain, separation anxiety, anger, guilt, depression, and aimlessness. The bereaved may also have physical reactions, such as sleep disturbances, aches and pains, and loss of energy and appetite.21 For Parkes, withdrawing emotional energy from the deceased is a vital last task, and this is consistent with the grief work model. Regardless of the particular tasks, completing them in a fixed progression is now viewed as clinically unsound, even though some clinicians still do so.22 Early models posited that mourning is complete when a person has accomplished these tasks, but others contend that the bond with the lost object continues with the process of grief changing over time rather than ending.23 Task-based models are also criticized as not being applicable to non-Western cultures because there is extensive cultural variability in the expressions of and responses to grief.24

Rando’s Phases of Grief Model Most clinicians and researchers now conceptualize the grief process in phases that wax and wane and may coexist with prior responses. Grieving is an active process that involves conscious and unconscious choices, and the bereaved oscillate through phases in a broad cyclical fashion rather than through a lineal progression of fixed tasks. Because phases may not be sequential, the bereaved may experience fear, guilt, anger, and anxiety intermeshed with protest and despair.25 Rando described three phases in the grieving process:26 1. Avoidance encompasses shock, numbness, disbelief, and denial, and it can function as a buffer from the painful reality, especially when initially learning of a loss. Other feelings during this phase may be fear, anxiety, and dread; unreality; disorganization; and an inability to comprehend the situation. Bereaved individuals may try to gain some control and understanding by gathering information about what happened and by telling and retelling the story. Some individuals surround themselves with as many people as possible, others prefer to be alone, and some keep their grief distant by focusing on tasks such as preparing meals, making financial and funeral arrangements, or caring for children. 2. Confrontation occurs when a person’s grief is most intense and he or she really “hears” that the loved one is gone. Feelings include intense sadness; guilt or blaming others or oneself; helplessness, panic, confusion, and powerlessness (“going crazy” or “being out of one’s wits with grief”);

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the diffused energy of unfocused anger, rage, and despair; a loss of faith; a sense of injustice or disillusionment; and intense sadness. 3. Accommodation occurs when the bereaved gradually reenters the everyday world, reinvests in life, and learns to live in a world changed by loss. In many instances, the bereaved maintains continuing bonds with the deceased. Rando’s terms of accommodation, integration, and adaptation to loss are more accurate than labels such as resolution or recovery. Loss produces permanent changes, and grieving does not have a defined end. People rarely experience resolution or closure to their grief, and they do not return to their preloss state. Some theorists and clinicians prefer the concept of integration— the act of combining into an integral whole—and we use this concept throughout the book.27 Regardless of terminology, the goal of grieving is to learn how to negotiate a meaningful life without the deceased and to integrate the loss into a new social context and identity.28 For example, bereaved parents may assume a new identity of helper to others through groups such as Compassionate Friends or channel their anger by participating in Mothers Against Drunk Driving or seek legislation to lock up sex offenders for a longer time. Even though a bereaved person reaches accommodation or integration, complex and negative feelings about a death may persist for years or throughout the remaining life span. Painful feelings never fade completely, and they may resurface in “aftershocks” many years after a death. These feelings also become more acute around what were once joyous occasions, such as birthdays and holidays, or on significant dates, such as the anniversary of the death. Phased models are open-ended; grief remains present throughout life, which contradicts the goals of the grief work model. Without a timetable for grief, what is predictable is that grief is unpredictable, coming in waves and sometimes leaving the bereaved feeling out of control.29

Integrative and Dual-Process Models Based on empirical research and psychodynamic theories, the integrative theory of bereavement describes five orientations toward grief: shock, awareness of the loss, conservation-withdrawal, healing, and renewal.30 At the end of the conservation-withdrawal phase, the bereaved makes a decision, whether conscious or not, to remain in perpetual grief or to make changes to attain integration and renewal. It is this inclusion of explicit decision-making and

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motivation to change, although inadequately defined, that differentiates the integrative model from others. The integrative model of spousal bereavement, for example, maintains that the bereaved are motivated to express painful feelings, continue their relationship with the deceased, and maintain their health and ability to function, including the ability to form new partner relationships.31 The dual-process model (DPM) was designed to overcome limitations in the phase and task models while building on and integrating their strengths.32 Developed from a cognitive stress perspective, the DPM posits that most bereaved individuals alternate between approaching and avoiding grief and its associated secondary stressors as they master practical daily life responsibilities that follow a major loss.33 The bereaved oscillate between loss and restoration orientations, both of which are necessary when adapting to loss.34 During the initial phase of loss orientation, the bereaved concentrate on processing some aspect of the loss experience itself, yearn for the absent person or object, cry, and cling to the past. Although the bereaved also try to derive meaning from the loss, during this phase the bereaved focus primarily on the lost relationship.35 The restoration orientation requires adjustment to secondary losses or stressors—rethinking and replanning one’s life.36 The bereaved need to learn new routines, master new activities, create new traditions and memories, and fulfill new roles and identities as they adjust to the world without the loved person or object. A young widower may need to assume new roles and identities as single parent, cook, and housekeeper as he tries to create new traditions and memories for his children without their mother. He may be so busy managing the household that he is surprised by how rarely he thinks of his wife. To some extent, this is adaptive avoidance, with the bereaved turning to new activities and relationships for a respite from grief symptoms.37 This back-and-forth process of repeated exposure/confrontation and avoidance (forgetting, distractions, and the necessity of daily routines) helps people integrate loss without grieving continuously. Oscillation is required for optimal psychological adjustment, with restoration activities providing respite from the negative emotions of the lost orientation.38 People undertake loss and restoration tasks with different timelines, approaches, and proportions, depending on both internal factors and external pressures,39and they are flexible rather than adhering to fixed patterns. For example, among older bereaved widowers, loss factors, such as death circumstances, influence negative feelings in the early stages of grief; restoration-oriented factors, such as dating, are significantly associated with positive affect and most relevant

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Table 2.1 Integrating a Loss Through Two orientations Loss Orientation

Restoration Orientation

Grief work Intrusion of grief Breaking bonds/ties/relocation of the deceased Denial/avoidance of restoration /changes Holding on to past roles and relationships

Attendance to life changes New activities Distraction from grief Denial/avoidance of grief New roles/identities/relationships

later.40 Individuals who adapt well to loss experience stressors related to new roles, identities, and relationships as well as the intrusion of grief, whereas those adapting less well experience stressors associated with denial/avoidance of restoration changes and distraction/avoidance of grief.41 A third perspective has emerged that integrates both orientations into the concept of coping flexibility congruent with situational demands created by stressors.42 These alternating orientations may be used flexibly, and both are needed for successful adaptation (see table 2.1). Stroebe and Schut later revealed that their model did not take account of overload—a person feeling unable to deal with all of the activities, events, and other stressors facing the bereaved.43 Many bereaved individuals experience extreme fatigue, feel burdened, and are unable to handle the accumulation of demands.44 Neimeyer points to empowerment, mindfulness training, or positive psychology (e.g., turning negative burdens into mastery and management) to address this overload.45 The DPM also captures gender differences in grieving. Women tend to be more loss-oriented, feeling and expressing their distress, whereas men tend to be more restoration-oriented, problem-solving around practical issues. It also takes account of cultural differences more effectively than earlier models did.46 Originally formulated to address partner loss, the DPM has been applied to bereavement following a child’s death and losses among older adults, which are addressed in later chapters.47

The Six Rs Process Model The six Rs process of mourning, formulated and adapted primarily by Rando, provides broad guidelines for our discussion of loss at different phases of the life course as well as possible interventions.48 This model should not be

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viewed as directive because exceptions to each of these phases exist, and some people may return to earlier phases even years after the loss.

Recognizing and Accepting the Reality of the Loss The first phase is recognizing and accepting the reality of the loss, acknowledging that the loss is irreversible and accepting the truth that the person, place, or object is gone and will not return. Many bereaved individuals initially try to deny the loss by gathering extensive facts about it, hoping that they will awaken from what seems to be a nightmare, dreaming that the loss has not occurred, believing that the loss can be reversed, or expressing anger at well-wishers who, by their presence, visibly symbolize the loss. To illustrate, my husband wrote of “wanting to throw against a wall all the food that had been given to us” because the presence of numerous food baskets symbolized that Chris (our son) had indeed died (NH). Common feelings during this first phase are fear of the unknown and the unfamiliar, panic upon awakening, unreality, and feeling overwhelmed. Some survivors experience pervasive anxiety and describe feeling jumpy, oversensitive, overreactive, and agitated over minor things. Others feel that they are a different person, wonder whether they are losing their mind, and fear being stuck in this painful crazy state forever.49 After the death of his wife, C. S. Lewis wrote, “no one ever told me that grief felt so like fear. I am not afraid, but the sensation is like being afraid. At other times it feels like being mildly drunk, or concussed. There is a sort of invisible blanket between the world and me. I find it hard to take in what anyone says.”50 Denial during the initial phase is common but can become problematic if the bereaved keeps possessions “mummified” for years, ready for use when the departed returns, or alternatively, gets rid of all personal items that would bring the bereaved face-to-face with the reality of loss. Preoccupation is common early on and emerges in a variety of ways: as a wish to undo the loss that allows us to be with our loved one if only in our thoughts, holding on to someone or something tightly before saying good-bye and letting go, and fears that we will not be able to remember the person. Such preoccupation can be problematic if it persists and becomes obsessive rumination: thinking about, searching for, and “seeing” the dead person—nearly all of the time. Ruminators engage in negative thoughts and behaviors and hold their focus on negative emotions, their causes, and consequences, a process that increases anger and anxiety.51 Rumination can be especially detrimental if it interferes with problem-solving and the ability to take care of themselves or others, especially their children, and distances them from others.

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Complicated/prolonged grief and rumination are discussed more fully later in this chapter.

Reacting to, Experiencing, and Expressing the Pain of Separation The second phase of the R model is reacting to, experiencing, and expressing the pain of separation, or giving up control and abandoning ourselves to the feeling of chaos. C. S. Lewis captured the pain of grief that is present no matter how one might try to hide from it: Do I hope that if feeling disguises itself as thought I shall feel less? Aren’t all these notes the senseless writhing of a man who won’t accept the fact that there is nothing we can do with suffering except to suffer it. Who still thinks that there is some device (if only he could find it), which will make pain, not be pain. It doesn’t really matter whether you grip the arms of the dentist’s chair or let your hands lie in your lap. The drill drills on.52

Encounters with chaos and the uncontrollable aspects of existence paradoxically give us the strength and courage to live.53 Critics of the early grief work perspective recognized that people deal with their painful feelings in a wide range of ways. Strategies to avoid negative feelings include denial beyond the early phase, avoidance of memories, the distraction of work, excessive traveling, keeping busy, humor, and simply “getting on with life.”54 Family members or friends may encourage such distraction techniques to keep from addressing the pain. Some techniques are clearly not helpful: denying that one feels pain, idealizing the dead or absent person, working to the point of neglecting one’s health or family, traveling to the point of exhaustion, or using alcohol, drugs, or food in excess. Grief cannot be covered up by “running away from it,” a change in physical location, or a false sense of gaiety, such as pretending on holidays that nothing has changed. However, people who avoid conscious grieving do not necessarily experience depression or have to go through the grief process later in life (a delayed grief reaction). This suggest that short-term denial and distraction are not necessarily maladaptive in the long run.55 The expression of grief through crying is culturally constructed, and in Western society weeping or crying is “breaking down,” which implies that “something is wrong with us” or we are “not strong.” Think how often wellmeaning friends or even professionals may advise us not to cry or try to keep us from crying by patting or hugging us, which paradoxically shuts down our tears. Yet deep weeping affords us a necessary release for intense feelings. Early on, weeping tends to be shallow as the bereaved tries to hold onto the

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person or object that has been lost; breathing is rapid, and crying may not bring relief because the brain and other organs are deprived of necessary oxygen. This interferes with physical and emotional recovery, and the pain becomes lodged tightly in the muscles. Deep weeping occurs when we begin to let go of the loss and are able to release bodily or muscular tensions, such as the feeling of “being wound as tight as a drum” or “being ready to jump out of our skin.”56 Shortly after the mountain rangers found Chris’s body, a grief counselor asked me (NH) about my eating, sleeping, and support network. But what made the most difference was her reminder (however simplistic it might appear) to breathe. When in shock and grappling with the enormity of our loss, we tend to hold our breath and become tighter and tenser. After I started breathing more deeply and taking in more oxygen, I was able to weep.

Weeping that heals is experienced as a profound sobbing in which, like a baby, we let go of tensions in our body, give way fully to our pain, and experience relief. Bereaved individuals may find that they can fully sob in the privacy of their shower when the water shuts out the sounds or in the anonymity of their car in darkness. Examples of cross-cultural variations were discussed in chapter 1, such as uncontrolled loud crying among Filipinos, particularly when the family gathers to see the body before it is taken to a morgue, and some Japanese controlling public expressions of emotions, including crying.57 Despite its benefits, many of us avoid deep weeping because it means letting go of the lost security and the person who gave meaning to our life. It can be frightening for an adult to feel once more like a small, insecure, and helpless child. My (NH’s) daughter at age nine expressed this fear when she said that she “was afraid to cry because she thought if she started, she might not ever stop.” Not surprisingly, many children do not weep deeply following a death but wait to do so months or even years later. Moreover, their sobbing may be precipitated by something other than the original loss.58 The release to deep weeping—deeper than had happened in the eight years after the deaths of her brother and father—occurred for my (NH’s) daughter when our beloved Golden Retriever died. She sobbed uncontrollably, suggesting how later losses that may be perceived to be less significant can bring up distant major losses.

Guilt may be expressed in the early phases of grief, especially by parents and individuals bereaved by suicide and other types of unexpected death.

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Similar to all expressions of grief, how we talk about our guilt is influenced by interpersonal, personal, situational, and cultural variables. Guilty feelings are described as remorseful, regretful, responsible, accountable, at fault, unworthy, wrong, ashamed, and blameworthy. Guilt is a common and expected aspect of grief because human relationships are not perfect. Instead, they contain a mix of positive and negative feelings—regret, self-reproach, perhaps relief after a long period of caregiving, or blame for not preventing the loss. Guilt can be caused by self-accusations, such as a perceived failure to do the right thing for the deceased, negligence, or exaggerated minor omissions. Guilt is multifaceted. Relationship guilt results from a perceived failure to live up to one’s own or society’s expectations of our relationship with our loved one or from past interactions in the relationship. I still experience pangs of guilt that I (NH) was busy working on a book and spent little time with my son the week before he left to guide on Denali. Not surprisingly, a later dream in which Chris returned contained the dilemma of whether to take a trip with him to a warm climate, as he requested, or meet a book deadline!

Moral guilt results from the belief that the loved one’s death is punishment or retribution for violating a moral, religious, or ethical standard. As I (NH) struggled with the question of why my son had to die, I searched my past, fearful that I had caused his death by my failure to attend church regularly or not being a “good enough mother.” As with many bereaved parents, I initially (and unrealistically) blamed myself for failing to protect my child.

In some instances, guilt is profound because there is a direct cause-and-effect relationship between what we did or failed to do that resulted in serious harm to someone else (e.g., driving while intoxicated and causing an accident that kills one’s family). Illegitimate guilt comes from unrealistic expectations and standards out of proportion to the events (e.g., my son’s friends believing that they should have been on Denali to save him or guiding in his place). Survivors often feel guilty when they start to enjoy life again, feeling disloyal to their loved ones by laughing or socializing. Or guilt can stem from beliefs that the young are more worthy and should outlive the old. Survivor guilt is common among siblings. When we met our older son at the airport after Chris had fallen, his first words were “it should have been me.” Grief guilt may result from our perceived failure to fulfill our own or society’s expectations for how to grieve appropriately (i.e., we are not feeling sad enough). There are few nonverbal

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cues for guilty feelings. Unless we express our guilt verbally, friends, family, or counselors may be unaware of it. Regardless of type, intense, unrelenting, and prolonged guilt is outside the parameters of a typical grief response.59

Reminiscing Who we are and what we have done in our life resides in others’ memories.60 The third phase of the R model, reminiscing, or telling and retelling memories, is a way to keep our loved one alive and, as noted by Neimeyer, to find meaning.61 Individuals vary widely in how much they talk about memories, look at photographs, and share stories. Bereaved parents fluctuate between finding comfort or feeling pain when looking at pictures of their child. The philosopher Wolterstorff wrote this in Lament for a Son: Photographs that once evoked the laugher of delighted reminiscence now cause only pain. Why are the photographs of him as a little boy so incredibly hard for me to look at? Why is it easier to look at him as a grownup? . . . so it is with memories of him. They all lead into that blackness. All I can do is remember him. I can’t experience him. He’s only in my memory now, not in my life. Nothing now can happen between us. Everything is sealed tight, shut in the past.62

Reminiscence may also be a search for meaning, which may mean accepting reasons that cannot be comprehended and answers that may not exist. For healing to occur and meaning to be created, it is important to move from being troubled by memories to gently welcoming memories.63 Writing often has restorative powers, and writing may be easier for some survivors than looking at pictures or talking about the deceased. Journal writing can be a way to face our new reality, organize our chaotic thoughts, gain a sense of control, and complete the last chapter of the deceased’s life. When I (NH) felt worn down by talking to a grief counselor, I found journal writing the best way for me to capture my feelings, and it brought me solace. Reviewing what we have written, sometimes years later, can help us gauge the progress we have made since the death. Others may write about their anger or guilt, then tear up or burn the paper so that no one can read it. Some bereaved individuals write a letter to their loved one on birthdays or holidays and leave it at the grave or next to a photo. Those for whom writing does not come easily may prefer to talk with others about the deceased. Whether through writing or talking, telling the story of the death is conducive to finding meaning in loss.64 Dreaming offers another means of remembering, experiencing, and working through the emotionally charged loss, and dreams can even help

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in problem-solving. Experiencing our dreams in the present tense—telling them to a friend or writing them down—can provide new meanings and connections. Although grief dreams may be painful, dream theorists maintain that our dreams do not tell us more than we can bear. In most instances, dreams of the dead person are comforting, although some may be disquieting and cause anxiety.

Relinquishing Old Attachments Letting go of one’s attachment to the absent person or lost object was central to early grief work. However, many bereaved individuals maintain their bond with the deceased, and this is central to their ability to integrate this loss into their life (see chapter 1). Unfortunately, some people convince themselves they will never love again and hold on to past attachments, feeling unable to form new relationships.65 The challenge is to maintain a connection with our loved ones who have died as we move forward to form new attachments and love other people. Nearly all clinicians and researchers agree that the prior attachment/relationship must change; survivors must find an appropriate place for the dead in their emotional life that will enable them to live effectively in the world. For many, grieving diminishes when survivors no longer need to reactivate the representation of the dead with exaggerated intensity in the course of daily living. Finding a balance by letting go of relationships to some extent but growing from them is viewed as desirable.66 In effect, we must rebuild the present with a new everyday life that contains both what is left and changes for the future.

Readjusting and Reinvesting The last two phases of the R model are interconnected and include accommodation, acceptance, adjustment, and integration of the loss through personal growth. Although we may never fully accept a loss, we can adapt to the imperfect reality.67 We have a choice in how we grieve. We can choose to incorporate past and future into the present, closing old wounds and freeing us from the domination of grief. The challenge in such active grieving is to use what has happened to construct meaning and integrate loss into who we are now, expanding our being even in the face of an apparent diminution of our life. We can teach ourselves a new way of living that is large enough to transform our pain, to make us whole, and to experience a future with new possibilities and relationships.68

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Active grieving often results in greater self-reliance and self-efficacy. Realizing that death can occur at any time, we reorder our priorities.69 For some bereaved individuals, confronting loss and searching for meaning may release earlier unaddressed emotions. This release may be intense, but it can lead to new energy, optimism, a sense of empowerment, fearlessness toward life (e.g., nothing else can ever hurt us again), goals that give meaning, and an ability to be both alone and to enjoy others’ company.70 An integrative view of loss means that we must be willing to suffer some pain until the end of our life, live without all the answers, and acknowledge the fragility of life and the limits of our control. “Healthy” grieving results in an ability to remember the importance of what is lost with a newfound sense of peace rather than searing pain.71 Some researchers and clinicians have identified benefits of grief through “posttraumatic growth,” or transformation, which can coexist with distress.72 Positive life changes may be intrapersonal (e.g., increased personal strength, wisdom, spirituality, appreciation of life, changes in priorities, wisdom, and compassion) or interpersonal (e.g., increased appreciation, empathy, and tolerance toward others). This growth occurs as a result of the bereaved’s psychological struggle to integrate their suffering into a coherent understanding of their world and their place in it through reappraisal of their priorities.73 Personal growth and transformation differ from adjustment.74 Many people are able to see value in what has become their reality, put the loss into a less negative perspective, keep connections alive with happy memories rather than pain, and reinvest in new goals that provide structure and meaning to life and a future with new possibilities, although this does not mean that they fully adjust to their loss. Despite loss, or in some instances because of it, bereaved individuals can benefit from their pain, finding energy and freedom from distress in their daily life, experiencing pleasure, being hopeful about the future, and functioning adequately in their roles as partners, parents, friends, and community members. Transformation requires understanding loss through self-reflection and a search for meaning. To derive some good from the death, the bereaved must relinquish ways of viewing the world that are unique to the lost relationship. Recent research on posttraumatic growth found that individuals who are autonomously motivated (oriented toward growth, learning, and development) and appraise stressful events as a challenge rather than a threat are intrinsically motivated (open to their emotional experiences, less defensive) to integrate loss into their lives. This contrasts with those who have a controlled motivation orientation (defensive, less honest about their experience).75

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Excessive Rumination Most grief researchers and practitioners agree that the process of experiencing grief fully should be differentiated from excessive rumination, or persistently and repetitively going over the same negative thoughts, emotions, and their possible causes and consequences without taking action to relieve those emotions.76As noted earlier, rumination is characterized by an inability to put the loss out of one’s mind, repeatedly mulling over events in a set manner, deploring and regretting that it happened, blaming oneself, and wondering how one could have prevented it. Distressingly persistent counterfactuals (i.e., endless “what ifs”) are a type of ruminative thought.77 Rumination may prolong distress by drawing attention to negative thoughts and memories, thereby interfering with the bereaved’s ability to solve problems effectively and impairing engagement in everyday activities that might increase their sense of control. Rumination has self-perpetuating characteristics, with ruminators remembering more negative things about the lost relationship (regrets, guilt, “if only”) and lacking motivation to engage in pleasant, distracting activities that might lift their mood and help them make sense of their loss. Family and friends may be critical of and avoid interacting with ruminators, thereby leaving them feeling even more hopeless, isolated, and believing they cannot cope alone.78 Ruminators may contend that they can no longer delude themselves and now see things for how bad they really are. When grieving a death, some ruminators may fear that they will lose their ties to the deceased if they stop focusing on them. However, bereaved individuals can temporarily forget details about the absent person and go for periods of time without thinking about them and not lose their connection. Letting go of particular aspects of the absent person or object is not denial but rather an integration of grief.79 Why do some people ruminate more than others? Ruminators are found to be neurotic, less optimistic, and feel they have less mastery over their life. They are likely to be beset by multiple negative events around the time of their loss or have a history of uncontrollable negative events. People who experience nonnormative losses (e.g., young parents whose child dies or young adults whose partner dies) may be more apt to ruminate. Rumination increases the level of guilt when suicide is the cause of death.80 Those without adequate social supports are more likely to ruminate, and their excessive rumination can drive away support and create conflicts with others.81 Individual coping styles, an ability to tolerate painful emotions, and resources for self-care also affect whether a person will move forward or become “stuck” in grief.

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Types of Grief Different types of grief may be experienced by some individuals, families, and communities. In this section, we briefly review disenfranchised grief, ambiguous loss, anticipatory grief, and chronic sorrow.

Disenfranchised Grief Disenfranchised grief is experienced when people incur a loss that is not or cannot be openly acknowledged, publicly mourned, or socially supported. Society treats such socially negated losses as nonlosses. For example, people in relationships not socially sanctioned (e.g., LGBTQ partnerships in religiously conservative communities; an extramarital affair; or a relationship with a divorced spouse or past lover) grieve the loss of such relationships through death or divorce, but the bereaved do not receive support from family members, friends, or coworkers.82 The bereaved is disenfranchised from the role of griever when others do not acknowledge the loss, such as abortion, a beloved pet’s death, or loss of dreams among families for members with mental illness or intellectual disabilities. Other socially unspeakable losses may be difficult for mourners to talk about in part because of stigma, such as the “social death” of a person who is comatose, the “psychological death” of an individual who is brain-dead, or the “psychosocial death” in which the person has dramatically changed through dementia, stroke, mental illness, or substance use.83 Families whose loved one died because others perceive them as not taking precautions to prevent coronavirus or whose death is discounted by those who do not think the virus is real may feel their grief disenfranchised.84 Disenfranchised grief can intensify feelings of anger, guilt, powerlessness, and ambivalence. In fact, its very nature precludes social support; although individuals have undergone an intense loss, they may not have opportunities to verbalize the loss or receive expressions of sympathy and support characteristic of the death of a socially sanctioned relationship. Every society has rules or norms for grieving that specify who, when, where, how, how long, and for whom people should grieve. These norms are often codified in personnel policies regarding bereavement leave. For example, someone experiencing a loss that is not publicly or legally recognized generally cannot use bereavement leave to attend a memorial or to process grief. When returning to work, this person may be greeted with silence or avoidance. Without social supports, grief may be exacerbated or may lie buried until it emerges through problematic social, psychological, or physical changes.85

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Types of disenfranchised grief at each developmental life stage are discussed more fully in later chapters.

Ambiguous Loss Ambiguous loss is marked by uncertainty and confusion, with individuals asking questions such as “is the person there or not there,” “what is the status of my relationship with my loved one,” or “will I ever see this person again?” Boss describes two types of ambiguous loss: (1) a person is physically present but psychologically absent, such as individuals living with dementia, brain injury, or even substance abuse, which can also characterize disenfranchised grief or (2) a person is physically absent but psychologically present, such as families coping with military members who are missing in action or prisoners of war, children who have run away, incarcerated relatives, or immigrant children coping with the deportation of their primary caregiver.86 Families who have had to be physically separate, especially when a loved one is dying, during the COVID-19 pandemic are also faced with the psychological presence of uncertainty about when or if normalcy will resume and what losses may happen next.87 Family members of relatives who have mysteriously disappeared, such as passengers of the Malaysian airliner that crashed in 2014 and was never located, or those never found after the 2018 hurricanes in the Caribbean, are unlikely to engage fully in the grief process until their loved ones are identified. When Deraniyagala lost all her family members in the 2004 tsunami in Southeast Asia, she remained in denial and unable to abandon hope (albeit unrealistic) until at least one member was found.88 With ambiguous loss due to natural disasters, survivors hold two opposing views in their minds: my loved one is dead or maybe is not dead. Immigrant families may experience ambiguous loss, expressing ongoing homesickness and sadness, even when they chose to leave home and despite others telling them that they should “just get over it.89 Ambiguous loss is also a useful framework for interpreting gender transitions in families. A trans person may experience some family members who are physically absent (unwilling to interact) and others who are psychologically absent (ignoring or denying the gender transition).90 Ambiguous losses are particularly complex because whether the loss is final or what the status of their relationship is remains unknown. People may ask “am I still married or in this relationship,” “how long do I wait before I move forward,” or “how do I fully say good-bye?” The goal is not acceptance but rather becoming comfortable with what cannot be solved. Disenfranchised grief is a component of ambiguous loss, particularly in instances of

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dementia and brain injury because there are few opportunities to partake of the symbolic rituals that usually accompany a death. Individuals who experience ambiguous loss are prone to complicated grief, depression, anxiety, and emotional exhaustion as they struggle to make sense of loss and its meaning in their life. The concept of ambiguous loss may be most salient in Western cultures that have a mastery orientation.91 Types of ambiguous loss for different developmental stages are addressed in later chapters.

Anticipatory Grief Closely related to ambiguous loss is anticipatory or preloss grief: grieving what is expected to come, often with a grim sense of dread for the impending loss. This is frequently experienced by caregivers of individuals who are chronically or terminally ill. During the COVID-19 pandemic with 24/7 news coverage, people lived in a state of anxious uncertainty and anticipation about their loved ones and whether they would become ill or die from the disease. Trying to make sense of what is coming, people also grieved anticipated losses of major milestones such as graduation or weddings.92 Anticipatory grief may also occur with the heated political and racial divides of 2020–21, with some individuals anticipating the grief that might come when policies and practices that once protected them changed. This anticipation and fear has created complex grief reactions stemming from the past, the present, and what could be expected in the future.

Chronic Sorrow Chronic sorrow, or nonfinite loss, is characterized by the periodic resurgence of pervasive sadness associated with significant and continuously present loss, not simply the ongoing presence of grief. Similar to ambiguous grief, it is difficult to articulate nonfinite loss because others may not recognize it. Loss is always there, just beneath the surface, and gathers significance over time.93 Similar to disenfranchised grief, it may be discounted by others. Parents of children with disabilities, young adults with chronic mental illness, or individuals coping with a chronic illness may experience nonfinite loss. Chronic sorrow is most likely to develop in the face of hopelessness regarding progress (parents who try multiple treatments for their children) and when the condition is seen as permanent (grappling with the reality that none of the treatments work). This grief typically does not diminish over time; rather, it intensifies because parents are continuously confronted by reminders of the discrepancy between their hopes for their child and their child’s chronic condition. Long-term caregiving of older relatives, characterized by a “long

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good-bye,” may also evoke chronic sorrow that can negatively affect caregivers’ well-being.94 This is discussed in more detail in chapter 13.

Complicated Grief Complicated grief often occurs in response to natural disasters, war, rape, terrorism, mutilation, violence, accidents, or a mourner’s perception that the death was preventable, especially a child’s,95 although it can be a response to any type of death. Because the current coronavirus pandemic is unprecedented in number of deaths and multiple other losses in the United States and worldwide, the grief following the pandemic is likely to share characteristics of complicated grief and prolonged grief disorder that often occur after natural disasters and after Intensive Care Unit treatment. Early grief theorists assumed that grief became pathological when attachments to the deceased were prolonged (e.g., separation does not occur). However, our discussion of the phases of grief asserts that some presence of our loved one will always exist in our memory, usually at a subconscious level, regardless of how hard we try to break the bond. An effective grieving process does not need to eliminate thoughts of, feelings about, or a sense of connection with a lost loved one. Rather, healing is likely to involve the development of respect for this presence while still being able to look positively toward the future without physical interaction with our loved one.

Complicated Grief and Persistent Complex Bereavement Disorder Complicated grief was formerly referred to as “traumatic grief,” and even now these terms are sometimes used interchangeably. Recent research tends to use the term complicated grief to avoid confusion with posttraumatic stress disorder (PTSD). All grief is complicated, and it is important to acknowledge this phenomenon. Complicated grief is associated with the presence of conflicted (e.g., markedly angry, ambivalent, abusive) or dependent relationships between the bereaved and the deceased or absent person. Other antecedent variables to complicated grief include unaddressed prior losses or stressors, mental health problems, and a perceived lack of social support, such as inconsistent parenting.96 Dying patients’ inability to say good-bye to family members under COVID-19 visitation restrictions is found to be associated with complicated grief as well.97 Substantial debate has existed over the relationship between grief and psychiatric conditions found in the Diagnostic and Statistical Manual of Mental Disorders (DSM). Complicated grief was excluded from previous editions of

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the DSM due to a lack of evidence of its prevalence.98 As debates about the relationship between depression and grief and normal time frames for grief reactions developed between clinicians and researchers, a decision was made to include persistent complex bereavement disorder (PCBD), also referred to as prolonged grief disorder (PGD), in the DSM-V.99 This disorder may encompass complicated grief because it identifies the significant emotional turmoil and stalled adaptation that occurs in a small part of the population following a natural death.100 However, the number of individuals with symptoms of this disorder increases following sudden, more traumatic deaths such as suicide or homicide or a natural disaster. The circumstances, context, and consequences of death may also be risk factors for elevated rates of PGD/PCBD. For example, during the COVID19 pandemic, sudden unexpected death with family members generally absent because of hospital and nursing home restrictions, guilt about not being able to be with their dying loved one, uncertainty and fear, and the unprecedented disruption of cultural and religious rituals after death impeded social support and increased the risk of prolonged grieving.101

Characteristics of PCBD and Complicated Grief PCBD is characterized by intense grief causing significant distress, persistent and pervasive yearning, preoccupation with the person’s death, sorrow that does not improve, difficulty functioning and engaging in activities, increased separation from others, a desire to join the deceased, and persistent emptiness.102 Most grieving individuals return to full or nearly full functioning despite periods of prolonged grief that temporarily impair function and healing. Whether and when grief becomes complicated is widely debated; however, it is estimated to occur in about 10 to 20 percent of those grieving.103 The definition of complicated varies widely, has changed over time and across cultures, and is likely to continue to change with future research and clinical practice. What has emerged, however, is greater agreement about the need to understand why some bereaved people grieve “too much” or become “stuck in” their grief, whereas others emerge strengthened or even transformed by the process. How much grieving is too much remains unclear, and there is concern that complicated grief over a long time may stigmatize the griever. Complicated grief is characterized by these three factors: 1. Separation distress, such as being preoccupied with thoughts and upsetting memories of the deceased and longing and continuous searching for the deceased to the point of functional impairment.

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2. Traumatic distress, including feelings of disbelief and shock regarding the death, mistrust, anger, guilt, and detachment from others. 3. Somatic symptoms of the deceased (e.g., a son whose father died of stomach cancer may have stomachaches). Criteria for identifying complicated grief did not exist until the Inventory of Complicated Grief (ICG) was compiled.104 The following box lists the symptoms of complicated grief. Other characteristics of complicated grief are persistent thoughts of one’s own death (“I would be better off dead” or “I should have died with the deceased”), morbid preoccupation with worthlessness, hallucinatory

 Symptoms of Complicated Grief • Intrusive thoughts about the deceased. • Yearning and searching for the deceased. • Excessive loneliness since the death. • Purposelessness or feelings of futility about the future. • A subjective sense of numbness, detachment, or absence of emotional responsiveness. • Difficulty acknowledging the death (e.g., disbelief). • Feeling that life is empty or meaningless or that part of oneself has died. • A shattered worldview (e.g., lost sense of security, trust, or control). • Harmful behaviors developed as coping mechanisms (e.g., excessive use of drugs and/or alcohol; engagement in violent behavior). • Excessive irritability, bitterness, and anger related to the death. • Symptoms lasting at least six months and causing significant functional impairment. Source: Holly G. Prigerson and Selby C. Jacobs, “Traumatic Grief as a Distinct Disorder: A Rationale, Consensus Criteria, and a Preliminary Empirical Test,” in Handbook of Bereavement Research: Consequences, Coping and Care, ed. Margaret S. Stroebe, Robert O. Hansson, Wolfgang Stroebe, and Henk Schut (Washington, DC: American Psychological Association, 2001), 613–46.

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experiences other than the common experience of hearing the deceased’s voice or transiently seeing images or repetitious reactions to the trauma (e.g., continuously replaying footage of planes crashing into the Twin Towers). Complicated grief also manifests through helplessness, withdrawal, and failure to meet daily demands such as child care or work. Here are two examples of complicated grief reactions. After her son died from cancer, a mother shut herself in her room, went out only when her family insisted she do so, and did not speak the words “My son is dead” for two years. When finally able to acknowledge her son’s death, she broke down sobbing. A father abruptly sold his business, moved out of the family home, began to drink heavily, and every day sat in front of the house where his daughter had died, watching for any sign of the killer, even though the murderer was in prison. Any one of these behaviors by itself might not be problematic, but the duration, the constellation of a number of dysfunctional somewhat extreme behaviors, and an ongoing preoccupation with the event suggests the complicated nature of the grief response. Although health problems can develop in any grieving process, they are most likely to occur with complicated grieving. Physical problems may include higher mortality rates (e.g., chronic illness, accidents, and suicide), loss of appetite and weight, excessive eating, depression, increased alcohol and drug consumption, and loss of sexual interest and functioning. Psychological distress may manifest as somatic symptoms such as anxiety, depression, insomnia, and, in some instances, self-injury.

Traumatic Loss Traumatic loss is often equated to a sudden death, but it can accompany any loss, particularly when a person feels unprepared for its significant impact. Although often linked to death, traumatic loss can be associated with other losses, such as an abrupt unwanted divorce, a robbery, or a fire, all events that destroy a person’s sense of safety. Traumatic loss can also result from watching a person struggle with the natural process of dying, such as hemorrhaging or difficulty controlling pain. Traumatic loss usually follows exposure to a horrific or gruesome experience. This response is different from separation trauma, which causes separation distress (e.g., intrusive, distressing preoccupation with the deceased that includes yearning, longing, or searching). Two assessment tools for traumatic grief are the Traumatic Grief Evaluation of Response to Loss and the Inventory of Traumatic Grief.105 A more recent scale is the Traumatic Grief Inventory Self-Report, which reflects the current persistent complex bereavement disorder.106

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A traumatic loss generally intensifies our grief because it shatters our normal world and includes a series of concurrent crises and secondary losses.107 The Chinese distinguish between a “good death,” in which all prescribed rituals are followed, and a “bad death,” in which they are not. Untimely murder and suicide are considered bad deaths. A loss caused by an accident, homicide, natural disaster, or suicide that offers no opportunities to say good-bye or to attend to unfinished business can result in trauma when unresolved questions emerge: “did the person suffer,” “if I had been there, I could have stopped this,” or “what caused this to happen?” Questions like these result in intensified feelings of guilt and hopelessness, especially if the deceased suffered physically.108 I (NH) obsessed for more than a year about what might have gone through Chris’s mind when he realized that he was unable to arrest his fall and whether he was alive when he came to rest at the edge of a crevasse or died during the fall. I read everything I could find on falls, relieved to hear survivors refer to a sense of peacefulness during the fall. I needed to see the ranger’s pictures of where Chris was found, even though the image of his crumpled body on the edge of a crevasse is now seared in my memory. When I talked with the funeral director in Anchorage about viewing Chris’s body, I was thrown off by his response: “Well, we can’t tell how he will look until he thaws.” The thought of my child frozen, like a piece of meat needing to thaw, was almost unbearable, especially given how many years I, as his mother, had devoted to “keeping him warm.”

After accidental or homicidal deaths, we may feel more vulnerable and anxious because our world is no longer safe. Survivors may worry obsessively whenever a family member is late getting home, imagining the worst. When the trauma is massive, such as a horrific murder of a whole family in their home on Christmas Eve, survivors are likely to struggle for psychological and physical survival and only later move to deal with both the trauma and its meaning.109 A family’s history may become based on how traumatic losses are defined and meaning obtained. For instance, within a family system, four siblings may define a father’s murder differently based on their age, relationship with him, and communication shared throughout life. Although they may obtain more information on the circumstances of their father’s death over time, their ability to find meaning and come to a mutual understanding of the event may not occur, creating family secrets and additional trauma. Even in instances of major trauma, however, survivors may experience posttraumatic growth or psychological healing resulting from their struggle with

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the trauma. The likelihood and extent of posttraumatic growth appear to vary with the person’s personality, gender, and age.110 Suicide raises additional challenges for survivors. Because of its stigma in American society, survivors often feel more shame, guilt, and anger, and religious institutions, colleagues, and friends may not offer support. Survivors are left with questions about why their loved one committed suicide and what they could have done to prevent it. These questions are unanswerable, and the grief process is often prolonged and complicated. Posttraumatic stress disorder is usually associated with repeated exposure to a particularly horrific experience (such as violence in wars or on our inner-city streets). Traumatic grief generally results from a sudden separation from the deceased, whereas PTSD criteria do not include the core symptoms of separation distress, such as yearning or searching for the deceased or loneliness resulting from a loved one’s death.111 The symptoms of PTSD are recurrent distressing recollections or dreams about the event, a sense of it occurring again, and intense physiological reactivity or psychological distress in response to reminders of the event. People who have PTSD may not experience complicated or traumatic grieving, and clinicians need to address the trauma in situations involving PTSD before they can begin grief interventions. Less is known about how the unanticipated nature of other types of loss, such as a partner leaving a relationship without advance warning or destruction of a home from natural disaster, affects the grief process. We can surmise from the literature on sudden deaths that the lack of preparation and the possibility of prevention of the loss are likely to intensify the grief responses, at least initially. These factors also may have led to some traumatic grief responses during the COVID-19 pandemic.

Ongoing Bonds with the Deceased The focus of early grief work was on breaking the bond with the deceased and investing in new relationships and behaviors. There was little social validation for people who reported a relationship with the dead or absent person.112 More recent research, however, has determined that constant but altered bonds with the deceased can last for decades and are not associated with poor adaptation. As noted by Klass and colleagues, death ends a life, but not necessarily a relationship.113 Rather than saying good-bye, the deceased may remain both present and absent.114 In fact, continued attachments can provide solace, comfort, and support; ease the transition from past to future; and facilitate integration of the loss into the bereaved’s life.115

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Such a bond often takes the form of talking with the deceased at the burial or cremation site or at home.116 This also includes talking to others who knew the dead person, especially about parts of that person’s life unknown to the mourner. Even though my son died twenty years ago, I (NH) am always eager to hear a new story about him (often of some risky adventure that I was lucky not to have known about when he was alive!) and am grateful for his friends who still visit to share memories new to me. Through talking, the bereaved try to complete the person’s identity and write the “last chapter” of his or her biography. Even if stories are not completely true, they serve a memorial function. The dead (“social ghosts”) can help repair our personal identity, providing role models for our actions and guidance in making decisions and moral functioning. For instance, we may incorporate virtues of the deceased into our own character or reflect on his or her death to clarify our own values.117 I (NH) often found myself in an internal dialogue with Chris, seeking his guidance on decisions, particularly those related to his little sister. As his high school adviser said at the memorial service for Chris, “The best way we can remember him is to seek to be as kind as he was,” a lesson that I try to follow daily, even many years later. Some parents take on special projects in their child’s memory, believing that the child would have wanted them to do so. Starting a memorial fund in a child’s name, being available to other grieving parents, or supporting a cause that a child held dear are ongoing connections to their lives. Although not common, paranormal or psychic phenomena can be part of ongoing attachments.118 Grieving parents or siblings, especially adolescents, often seek out and experience after-death contacts, whether through dreams, signs, mediums, or clairvoyant messages. Others may not seek such contact, but nevertheless experience it. Both my older son and a nephew had visits from Chris in their dreams the day after he fell, which is when we think he died. For years I (NH) had dreams of Chris, particularly when I was in or near the mountains. Those dreams—or messages—have unfortunately faded with the passage of time. At one point, I sought out a messenger or guide to communicate with my husband and son and let me know that they were okay.

Grieving parents often dream about their dead children, hear voices, smell flowers or have other evocative senses associated with their child’s life. Some receive messages from the “other side” (however defined by parents) that contain a degree of detail that only the deceased could know. These communications may provide momentary comfort and reassurance from knowing

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about the “place” inhabited by the deceased. This is especially the case for survivors who believe that the spirit is primary and the body is secondary and that the spirit acquires another form and goes to heaven or some other place at the time of death. “Messages from the other side” may help us remember the life that was lived rather than remaining fixated on death. But discovering that the child is loved and happy in an afterlife does not necessarily assuage pain from his or her death, although it may mitigate it. In addition to afterdeath communication, psychic phenomena may include premonitions, neardeath experiences, and crisis apparitions. After Chris’s death, one of his close friends told me (NH) that he’d had vivid dreams of Chris dying in the mountains and premonitions of his death for years, often causing him to cry uncontrollably but never sharing these feelings with others.

Many people who have after-death experiences, particularly in Western cultures, are reluctant to talk about them for fear of being discounted, laughed at, or stigmatized. However, studies have found that a significant portion of the population sense the dead’s presence and find this comforting, so such experiences cannot be labeled pathological or hallucinatory.119 Although we do not know how and why psychic phenomena work, too many survivors have recounted such experiences for professionals or informal networks to discount them.

Cultural Variations in Ongoing Bonds with the Deceased Cultures vary markedly in their beliefs about the form and meaning of a continuing relationship and communication with the deceased. The Toraja of Indonesia eagerly await dreams to communicate with the dead that foretell future prosperity. Among Chinese Americans, family relationships are believed to continue after death, making communication with the deceased possible. Families often make offerings as a mode of communication to the deceased on the first and fifteenth days of the Chinese lunar month, which reinforces the bond between the living and their dead ancestors. These beliefs underlie the importance of ancestor worship and daily prayers in front of portraits of parents or grandparents.120 Recognizing the continuity of family relationships after death, Buddhists place a memorial plate in a temple for continued communication. African Americans who believe in the afterlife and the spirit world may acknowledge the deceased’s presence at family gatherings.121 Traditional Judaism affirms personal survival in some form after death, speaking of an olam haba or “next world.” Although Jewish Americans

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do not believe in an afterlife, they may feel a spiritual connection with the deceased.122 Regardless of the particular culture and manifestation of ongoing bonds, friends, relatives, and professionals must be sensitive to the various ways of perceiving and interpreting death and the destination of the deceased. Learning to listen without judgment can be powerfully supportive to the bereaved and, in turn, to the listener.

Summary In this chapter, we describe the grief process in terms of phases and present the integrative, dual-process and three Rs models of grief. The potential for posttraumatic growth and transformation is emphasized, and excessive rumination is identified. Disenfranchised grief, ambiguous loss, anticipatory grief, chronic sorrow, complicated grief, and persistent complex bereavement disorder are examined. The differences between sudden traumatic death and PTSD are also explained. We provide evidence for ongoing bonds with the deceased and emphasize the importance of practitioners’ understanding the cultural variations of these bonds.

3 Resilience and Meaning-Making

 Why do some of us become stuck in grief, with feelings of bitterness and sadness, unable to engage fully with others and with life? Why do others of us grow through loss, finding meaning in our reality? Identifying individual, family, community, and cultural factors that affect the outcome of the grief process can help answer questions regarding why and how some individuals are more likely than others to find meaning through loss. Two frameworks— the traditional stress and coping model and a model of resilience—are presented, with a focus on the resilience approach for understanding mediating variables and outcomes.

Stress and Coping Models The development of stress and coping models followed Freud’s and Lindemann’s psychodynamic frameworks in which stress was often considered to be biological. Conceptualizations of stressful life events include grief as a major cause of distress, with depression a likely outcome.1 Adaptive coping skills, social support, and positive or negative appraisals of situations affect how people deal with grief-related stress and can reduce negative health outcomes as well as enhance meaning-making.2 Problem-focused coping is oriented toward changing situations causing distress, whereas emotion-focused coping and cognitive and behavioral strategies are oriented toward managing the emotions associated with stress.3 How bereaved people cope appears to be more salient to outcomes than their personality traits.4 When applied to grief, the stress and coping framework is criticized for implying a time-limited response to an event that requires acquiring specific skills; this framework condenses a wide range of emotional reactions into stress alone and lacks empirical evaluation of outcomes. Critics maintain that 65

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stress is a much simpler concept than emotion and tells little about previous struggles to adapt to stressors such as loss. For example, the emotions of anger, guilt, and loneliness are more complex than and different from the experience of “stress/nonstress.”5 Early coping models are limited by their focus on a deficit model of psychopathological trajectories of chronic distress rather than acknowledging individuals’ capacity to deal effectively with life circumstances and fulfill their potential.6 In contrast to an emphasis on distress and avoidance, positive appraisal processes (similar to the integrative model of identifying positives that can emerge from grief; see chapter 2) and loss adaptation can facilitate grieving. Similarly, adaptive coping strategies, such as reorganizing one’s identity, social relationships, and daily routines and reinvesting in new commitments and activities, can reduce the likelihood of negative health consequences from grief.7 In other words, the bereaved can achieve meaning by changing their appraisal of the situation or modifying their beliefs and goals to adapt to the loss.8 Another limitation of the coping model is its binary nature wherein individualistic problem-focused coping is generally viewed as good and emotion-focused interpersonal coping as bad. Later models conceptualize stress as both psychological (appraisal) and situational. They also include a greater focus on proactive coping: how individuals anticipate stressful life events and build resources to offset future losses.9 Moreover, social support, in addition to personal agency or self-mastery, is central to more recent models.10 Other recent coping approaches include religion and spirituality when managing stressful life events.11 Overall, recent models emphasize positive emotions and well-being associated with being proactive rather than focusing on being reactive and relying on supportive environments.12

Resilience Framework Resilience is increasingly utilized to conceptualize the complexities of how individuals, families, and communities respond to challenging life situations. It refers to processes individuals use to adapt and maximize their capacities to overcome adversity, such as loss, which protect them from major, long-term disruptions.13 Unlike early stress and coping models, resilience is not simply the absence of diagnosable psychopathology. Instead, it shifts the focus from treatment to processes that enhance well-being. Resilient processes are characterized by transient symptoms, minimal impairment, and a relatively stable trajectory of psychological and physical functioning before and after adversity.14 Indeed, researchers have found that the majority of adults

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demonstrate a pattern of resilience to overcome even extreme adversity with minimal disruption in functioning and, in many instances, to thrive.15 These findings have led to a view that resilience is not exceptional but rather is a relatively commonplace healthy adjustment across time.16 As an older adult commented to me (NH), resilience is the ability to bend but not break when faced with life’s challenges. Although most people are resilient in overcoming adversity, professionals should not assume that resilience characterizes everyone’s response to grief.17 Other researchers have challenged the notion that resilience is a frequent response to adversity, pointing to a recovery trajectory or “bouncing back.” Recovery is characterized by declines at the time of adversity, followed by gradual improvements to near previous levels of well-being. They also contend that resilience in one domain often coexists with deficits in others.18 What is often typical of a resilience process, regardless of specific circumstances, is evidence of relatively better outcomes than for those who are not resilient. In other words, a behaviorally resilient response can turn loss into a catalyst for growth and development;19 however, this ability is generally dependent on the accessibility of resources in the environment that promote positive development.20 With its focus on positive outcomes, resilience displays some similarities with the social work strengths perspective and with posttraumatic growth theories (see chapters 1 and 2). According to these theories, growth encompasses positive changes, such as strengthened social relationships, compassion, new priorities, and an appreciation of life.21 Potential mediators affecting the emergence of growth include social support, time since death, and religion and spirituality.22 Resilience occurs across a range of challenging life situations, but it is not easily measured because it is defined variously across life events.23 Nevertheless, general themes are identifiable in research on resilience, and they are summarized here.24 Resilience is not a personality trait or a fixed individual attribute. Although the optimistic attitudes of resilient individuals may help them deal better with adversity,25 the explanatory power of a personality type tends to be overestimated.26 Resilience is both a process and an outcome in dealing with loss. How people handle adversity appears to depend more on the environment and its resources than on individual capacities, such as personality or motivation. Although some aspects of resilience are shared across populations, others are distinct to a particular culture and social context, suggesting the need for a socio-ecological understanding of resilience.27 Resilience is a multidimensional construct and a dynamic process encompassing great variability: people may excel in some domains and

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struggle in others, have access to multiple pathways and variations in different time periods, and use varied strategies depending on the nature of the loss. A community or a culture cannot be consistently resilient (or vulnerable); if environmental circumstances change, resilience is altered.28 Consistent with postmodern perspectives, Aburn and colleagues conclude that resilience should be viewed through the lens of social constructionism because resilience depends more on an individual’s culture and community than on personal capacities.29 Despite wide variation, independent predictors of resilient outcomes, including protective factors, are identified in the literature.30 A framework useful for understanding resilience in response to loss encompasses these four components: 1. Background characteristics of both the person grieving and the grieved: gender, age, race, ethnicity, culture, sexual orientation, developmental stage, and nature of the prior relationship. These areas of potential strength enable individuals to access support systems during crisis or stress.31 2. Type of adversity: nature of the loss, extent of trauma, and prior losses. Personal adversities typically refer to life events such as a loved one’s illness or death that specifically impact an individual. Collective adversities are events that influence larger social groups, such as natural disasters, the COVID-19 pandemic, terrorist attacks, police brutality, or community violence. 3. Capacities: personal, family, social, cultural, religion/spiritual, and community resources of the bereaved.32 4. Mental and physical well-being: self-esteem, efficacy, optimism, growth, and meaning-making, or integration of loss.33

Background Characteristics Background characteristics are salient to how people integrate loss in their lives. Some evidence suggests that resilient outcomes after a major loss are associated with being male, older, and well educated. Sufficient economic resources, which may correlate with greater education, are associated with better adaptation after a traumatic event. Loss of resources due to an event (e.g., decrease in income after devastating wildfires or the coronavirus pandemic) tend to be associated with reduced resilience.34 We address background characteristics that are most extensively studied, but recognize that level of functional ability/disability, immigration status and

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gender identity are also salient factors for future research and intervention development.

gender Gender differences due to gender role socialization influence how we deal with losses across the life course; they both frame the grief experience and play a significant role in shaping emotions. Two gender-based patterns of grieving have been described: (1) an intuitive pattern, generally viewed as female, in which grief is expressed emotionally; and (2) an instrumental pattern, typically viewed as male, in which grief is expressed physically or cognitively. These patterns exist along a continuum, and a third pattern blends these two extremes: some women express grief instrumentally and some men express grief emotionally.35 Overall, women tend to be more emotionally expressive, engage in productive and contemplative rumination, are more skilled in social relationships, and are more willing to seek others’ support. Congruent with the dual-process model of grief, women also are more likely to turn to friends and professionals when talking and crying about their loss.36 Immediately after my son’s death, I (NH) found walking and talking with friends to be more helpful than talking with a counselor. In fact, some days I would walk around a local lake with different friends multiple times. In addition, women tend to demonstrate more psychological symptoms and are more likely to be diagnosed with complicated grief and PTSD, particularly if they engage in negative rumination or brooding.37 Women also may need more help when rethinking and restructuring their life and identifying new sources of meaning.38 Less is known about men’s grief.39 Although men may also experience periods of crying, they generally grieve at a cognitive level and in private, solitary ways (e.g., in their workroom or car), and they are less likely to openly vent their emotions with others.40 Men are more likely than women to focus on tasks (e.g., funeral plans, gathering information about cause of death to “explain” it, and making financial arrangements), “shelving” their feelings in order to meet immediate obligations. Some men see a loss as a challenging “job”: “I can survive this” or “I can handle this.”41 By associating feelings with specific thoughts, men often manage uncomfortable feelings using cognitive techniques, such as distracting themselves by keeping busy taking tangible steps toward the future (setting up a foundation to honor their loved one or bringing a lawsuit against the perceived “cause” of death). Moreover, how a man grieves privately and introspectively can be a way of talking without the words and “crying without the tears.”42

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Recent phenomenological studies of men have identified additional expressive grieving styles. For instance, in a study of widowers whose wives died from cancer, men were found to experience posttraumatic growth through self-reflection. In doing so, they experienced positive changes in their selfperception, discovered new meaning in their philosophy of life, and were able to reconfigure the world to integrate their partners’ death and strengthen their social relationships.43 This characterization of grief as expressive sorrow or outward crying that demonstrates inner anguish may not capture young men’s inner experience of emptiness or vacuity resulting from the loss of a friend in an accident. In one study, their grief was experienced as a displacement in life: the familiar elements were still there, but the loss had taken something away, creating a sense of emptiness and vulnerability. Other phenomenological studies identified abruptness in the changed relationship, helplessness, absence, despair, spirituality and solace, loneliness and isolation, and confusion/doubt among men. The physicality of men’s grief may include embodied remembering in which grief and sadness are taken up by the body and expressed in a new orientation of the self in the world.44 Neither gender-based pattern is more effective than the other across time. Some research found women’s emotion-focused active coping to maintain emotional equilibrium more effective than men’s rational problem-solving style,45 but neither way is right or wrong. They are just different and should be respected as such. Gender roles are not static, and other background factors also affect how we grieve. Researchers have concluded that gender influences patterns of grieving but does not determine them. The evidence is mixed regarding which gender is more resilient and may reflect the extent of social support available to the bereaved. Women often receive more social support, whereas men may be expected to support others, which can influence their resilience in response to loss.46 Generally, gender variations are most pronounced in parents grieving a child’s death, with parents more likely to differ than to be similar in how they grieve.47 Mothers typically grieve longer than fathers do, express their feelings more openly and verbally, grow personally in terms of meaning, and turn to others to process their feelings.48 As previously noted, fathers often feel that they need to be protectors and providers for others. They may use cognitive and problem-focused strategies and seek diversion, frequently through paid work and projects.49 Anne Morrow Lindbergh, grieving the kidnapping and murder of her young son, recognized these differences:

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Women take and conquer sorrow differently from men. They take it willingly, with open arms they blend and merge it into every part of their lives; it is diffused and spread into every fiber, and they build from that and with that. While men take the concentrated bitter dose at one draught and then try to forget— start to work at something objective and entirely separate.50

A male partner may feel he is expected to express emotions and relate to others or act in uncomfortable ways. For example, a husband who wants to grieve privately, immerse himself in work, and not talk may feel pressured by his wife’s need for more contact, sharing, and being heard and supported. At the same time, the husband may feel helpless in dealing with his wife’s grief. Conversely, a mother may feel emotionally abandoned by her husband’s way of grieving, fighting to have her feelings acknowledged and respected yet not getting the support she needs and desires from her partner.51 After our (NH) son died, my husband turned his energy to working for weeks to making a used sailboat safe for our older son. After he returned from visiting him in New York for a week, I asked if they had some good talks about Chris. He responded that they never mentioned Chris but focused their energies on remodeling Kevin’s new apartment. His goals now were Kevin’s future. I said nothing, despite noticing our profoundly different ways of grieving. I would have felt the need to talk with Kevin about Chris. Looking back at this period of our lives, I realize that neither way to grieve was right or wrong, and both styles varied in their effectiveness over time.

Even though a mother may recognize these differences, she may insist on the father responding emotionally to her needs. In such instances, “the relationship dance becomes changed, with the woman leading and the man watching her feet and following.”52 This pattern of parents’ distancing and pursuit, with death creating a new bond while simultaneously pushing them apart, can increase both conflict and connection between them.53 Because the mother strongly expresses her needs, she may emerge emotionally stronger and be more likely to experience posttraumatic growth than the father.54

age The majority of adults, particularly older adults, are resilient in the face of challenging life events.55 Older adults are generally better prepared to deal with loss than those in younger age groups because increasing losses with age are to some extent anticipated. Older people tend to grieve losses less intensely than younger people who may be struggling with “off-time” losses.56 Bereaved

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younger adults tend to have more health impairments, higher mortality rates, and other psychosocial and physical symptoms than older adults do. However, younger family members may downplay older adults’ losses, viewing them as normative to old age. In a study of adults displaced by Hurricane Katrina, advanced age was associated with having experienced more hurricanes and with higher personal growth despite high levels of distress and sadness.57 This suggests that the accumulation of multiple losses across the life course does not necessarily mitigate the pain of grief for older adults. In fact, the accumulation of loss (or overload) may affect older people’s access to resources, which may limit their resilience.58 How this overload plays out in light of the coronavirus pandemic is unknown, but older adults have a higher risk of contracting and dying from the virus and suffer from increased social isolation, especially from children and grandchildren. In most instances, older adults who died from COVID died without family with them. Although gender differences in grief tend to decline with age, gender and age often interact.59 For example, older women display spiritual resilience more than do older men,60 and gender differences in posttraumatic growth increase with age.61 Marriage may be a protective factor that promotes resilience in old age. Older widows and widowers both report poorer physical and mental health than do married couples,62 and widowers are more likely to die of cardiac failure during the first year after their wife’s death than are widows after their husband’s death. Widowers also report higher levels of loneliness, emotional vulnerability, and suicide.63 These differences appear to be due in part to men’s tendency to have acquaintances and colleagues rather than close friends who share their feelings, which increases their risk of social isolation.64 In addition to age, cohort and sociohistorical context are salient in understanding reactions to loss. For instance, gender role socialization for a cohort of men age eighty and older typically differs markedly from those in their late twenties who were socialized with very different conceptions of maleness.65 To illustrate the cohort effect, a 2014 study compared the economic and psychological conditions of two cohorts of older bereaved people in 1979 and 2011, time periods with distinctive sociohistorical contexts. Due to an improved economy in 2011, widows reported fewer financial difficulties than in 1979. But depressive symptoms and psychological difficulties did not differ significantly across the two time periods and did not appear to be affected by sociohistorical context.66 These findings contrast with earlier research on widowhood, which typically described widow’s financial difficulties compared to widowers, as well as somatic problems, depressive symptoms, loneliness, and lower life satisfaction of both widows and widowers compared to their

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married counterparts.67 The life course perspective, which encompasses the contextual factors of cohort and current historical period, may interact with personal characteristics to shape the impact of grief on older adults’ lives. More research on cohort effects is needed, however.68

developmental stage of life An underlying assumption we make is that developmental life stage, as a background characteristic, affects how individuals respond to loss, and these stages are not always closely associated with age.69 Whether one views a loss as normative or “on time” often varies with the stage of life. In early adulthood, when most young adults are beginning their families, the death of an unborn child or infant is not normative. Young adults who lose a parent (an “off time” event) typically experience deeper declines in subjective well-being, particularly life satisfaction, than those whose parent dies in middle or later adulthood. Similarly, a parent’s death is not normative for a child, but typical constellations of developmental issues and behaviors occur. In summary, a loss congruent with a particular developmental stage generally has fewer and shorter consequences, but there are, of course, variations.

nature of the prior relationship Prior relationships are another background characteristic that contain considerable anger, ambivalence, dependence, or an accumulation of earlier losses complicate the grief process beyond what is considered normative. However, in some instances, stronger bonds and more intense attachments between spouses result in greater psychological distress, with conflictual marriages leading to less grief.70The extent of pain cannot be gauged by the type of loss itself. For example, the death of a partner who has been abusive may bring more relief than pain, whereas a divorce unexpectedly initiated by a dearly loved partner after thirty years of marriage may create considerable pain.

race How a person responds to loss and expresses grief is mediated by culture, ethnicity, race, sexual orientation, disability, religion, spirituality, and socioeconomic status in addition to age and gender. Whether different groups of color are more or less resilient than whites is unclear, partly because there is less research on the bereavement experience of groups such as African Americans. Moreover, recent research tends to focus on traumatic loss among African Americans (e.g., loss by violent death), which can create stigmatized knowledge about their grief experience.71 In instances of police brutality and

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other types of violence, Black people experience losses resulting largely from racism and resultant inequities and must find meaning within that larger context.72 For example, African American mothers who have lost children to gun violence tend to have high rates of prolonged grief. They may initially turn to religion for meaning, but increasingly they are trying to address racial injustice and create meaning from their children’s deaths through empowerment and activism.73 Another constraint on our understanding of African Americans’ reaction to loss is the nature of the samples studied.74 After the 9/11 attacks, African Americans and Latinx experienced poorer physical and mental health and were found to be less resilient than whites.75 However, categories of race/ethnicity are typically confounded by low socioeconomic status and less education, which tend to be associated with lower resilience and more complicated grief reactions.76 When accompanied by fewer educational and economic opportunities, reduced access to health care, poorer health status, and community violence, race does affect the risk of death at an early age and may influence the grief process. But when controlling for socioeconomic status and education, race and ethnicity may not be predictive of resilience.77 The salience of structural factors in affecting how people grieve is illustrated by the power of rituals, symbols, and social support in African American culture, which may foster resilience. African Americans generally regard funerals as an important social obligation. When friends, relatives, or neighbors hear of a death, they may spontaneously gather at the bereaved’s home to offer support. Expressions of sympathy are valued as signs of respect for the deceased and the survivors. The more personal the sacrifice of a gift, time, money, or food (e.g., home cooked food rather than take-out), the more highly regarded is the offering. A number of traditions may both honor the dead and strengthen community bonds, such as naming infants after the deceased, passing babies over the caskets of loved ones, and acknowledging the deceased’s presence at family gatherings. How one participates and conducts oneself during a time of grief can dramatically redefine family relationships.

sexual orientation and gender identity Less is known about how LGBTQ individuals respond with resilience to loss and grief compared to other populations. Embracing one’s sexuality can influence resilience and transcendence,78 moving away from a risk and deficit model to one that takes account of the intersectionality of LGBTQ identity with race and class.79 But LGBTQ adolescents and young adults who have experienced harassment, derogatory homophobic comments, and physical

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assault, as well as stress during the coming out process, are found to grieve various losses and to be at risk of suicide.80 Research on the resilience of older LGBTQ adults documents that lifetime victimization, discrimination, internalized stigma, concealment of sexual identity, financial barriers to health care, other health inequities, and limited physical activity adversely affect health behaviors, resulting in poor health, disability, and depression across the life course.81 Community level factors, particularly social support and network size, are protective and promote resilience and quality of life among LGBTQ older adults.82 As noted in our discussion of ambiguous loss, community organizations that advocate on behalf of trans people and their families, psychological family (family of origin and queer community kinship), and meaning-making processes (activism and ritual) promote resilience.83 The resilience of LGTBT individuals, families, and communities in addressing loss and grief is a promising area for research and practice.

Type of Adversity The nature of the loss, whether the bereaved was in immediate physical danger or witnessed death or serious injury to others, and accumulation of prior losses help determine the degree of adversity caused by loss and the impact on mental and physical well-being. An accidental sudden loss typically has more negative repercussions than does one that is “on time” (e.g., a parent’s death after a long illness) or anticipated (a divorce carefully planned to minimize disruptions to children). Unexpected, accidental, and traumatic deaths, especially if they are violent, perpetrated by trusted others, or due to suicide, tend to be the most painful and intense.84 For example, after 9/11, those who witnessed the attack and were physically injured showed less resilience than those who only witnessed the attack.85 The relationship between a sudden death and negative health outcomes is not necessarily clear cut, however. Mediating factors may include internal or external control, high self-esteem, and age; sudden death is typically not as traumatic for older adults as it is for younger adults.86 Other studies have found that anticipated deaths that required extensive and lengthy medical care are more difficult for survivors, who are more likely to become depressed.87 These differences in outcomes may be explained by the extent and nature of caregiving as well as by the bereaved’s perceptions of their preparedness for a death, with those feeling unprepared more likely to have complicated grief reactions.88 The nature of the death may have a greater impact in the short run than over time. A common assumption is that suicide results in greater problems

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in adapting to the death. Survivors’ feelings of guilt and responsibility for the death, along with associated stigma, may be most pronounced with suicidal deaths, especially when children commit suicide.89 But some studies have found little difference in long-term outcomes between survivors of suicide and other grieving people.90

Capacities Capacities are measured by their ability to create conditions for maximum potential in dealing with adversity. Capacities are found at the individual, cultural, family, and community level. The concept of capacities is similar to protective factors that buffer or prevent negative effects in a stressful situation, as identified in models of risk and resilience.91 However, capacities may more accurately capture resilience than do protective factors or moderators because they directly affect outcomes and moderate adversity.92 This occurs because capacities interact with and modify the relationship between the adversity of loss and an outcome of well-being. High capacities typically buffer the impact of loss (serve as moderators) and have direct positive effects on well-being.

personal capacities Personal capacities that affect our grief experience encompass cognitive ability, mastery or competence, locus of control, tendency to blame others, and spiritual or religious beliefs. Grieving in a resilient manner implies acting rather than remaining passive. Individual agency—the will to do or be something—is particularly salient to resilience. Even though no clear patterns are found between personality and resilience, protective individual traits include assertiveness, flexibility to tolerate both closeness to and distance from the deceased, tenacity, optimism, and courage.93 Other personal resources include an individual’s philosophical framework for making sense of loss, an ability to express feelings, an inner-directed identity, and faith in established beliefs that locate a loss in a context recognizable to the bereaved.94 Religious affiliation, religiosity, and spirituality are personal capacities that generally affect the grief process and underlie a resilient response to adversity.95 In most cultures, religion encompasses beliefs related to morality, fairness, and rituals that may give meaning to death. Formal religious affiliation is shown to help individuals cope with adversity.96 The relationships among attendance at religious institutions, social support gained through them, and participants’ physical and mental wellbeing are generally strong.97 Religion provides a way for people to talk about

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their loss and to achieve meaning (e.g., it is God’s will or part of a supreme being’s plan, or this makes sense only if there is an everlasting life). Whether in the form of a structured religion or a generalized belief system, belief in an afterlife may be strengthened simply because nothing else helps.98 Major losses, such as death, can significantly challenge religious beliefs and make it difficult for the bereaved to sustain their previous worldview. Grieving individuals are often left with questions: “Why did God (however defined) allow this to happen?” “Why didn’t God help?” “After this, I can’t believe there is a loving God.” The bereaved may be angry at a supreme being and reject their prior religious beliefs. When loss threatens our religious foundations, we may struggle with matters of faith, fairness, justice, and the validity of religious teachings. People who believe that they are responsible for the terrible loss may wonder whether they sinned or feel guilty about what they had or had not prayed for.99 In some instances, religion may lead to greater difficulties with adaptation.100 For example, religious interpretations may be unacceptable (e.g., “God loved your son more than you did.”) and can make us angry and resistant, even slowing the integration of a loss into our lives. Religiosity is a broader concept than religion. It assumes belief, trust, and faith in a divine being or power greater than oneself; embraces values of hope, gratitude, and forgiveness; and affects one’s ability to cope with adversity.101 It can apply to a person who rarely or never participates in formalized religion. Religiosity tends to vary by culture, with religious and culture beliefs interacting. People of color who have faced oppression are found to pursue group-based coping through religious institutions in the face of collective trauma such as 9/11, hurricanes, or police shootings.102 African Americans at all ages tend to be more religious than other populations, with both religious affiliation and religiosity being sources of considerable strength for Black individuals who view death as part of the natural rhythm of life and believe in life after death. Although their dead ancestors are now in the spirit world, African Americans may publicly acknowledge them in their community. Indeed, belief in an indistinguishable separation between the physical and spiritual worlds may underlie their frequent expressions of hope, love, and joy at funerals and church services, although such expressions are frequently tempered by outrage and calls to action over high rates of police brutality, violence, and homicide.103 Religious affiliation helps both Christians and Muslims face major losses, but their religious and social identities foster very different responses. Muslims are more likely to adopt interpersonal (collective) coping strategies, such as seeking social or family support, whereas Christians tend to

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engage intrapersonal (individualistic) coping mechanisms, such as self-reliance and cognitive restructuring or reframing the situation. Social, cultural, and historical experiences of these groups are central to their responses. For instance, a sense of belonging in an Islamic community contributes powerfully to Muslims’ collective strategies, including institutionalized Islamic rituals of mourning, crying loudly together, or receiving support from religious leaders.104 Spirituality—a belief in a relationship with a higher power or a transcendent being or force105—is another personal capacity that is conceptually broad. We can be spiritual without being religious. Some adults view themselves as both religious and spiritual, although Americans of all ages, particularly millennials, are becoming less religious.106 As a multifaceted concept comprised of beliefs and values, spirituality provides an interpretive framework for individuals to make sense of the world. Spirituality is not defined by dogmatic beliefs or a state of mind reserved for extraordinary moments; nor is it something that we can possess and attain once and for all. Rather, it is a process, a “way of being in the world” to which we aspire. Indeed, spirituality encompasses connectedness with self, others, nature, the Earth, or that which transcends all of these and is central when coping with loss. A study of bereaved middle-aged adults found that those with strong spiritual beliefs integrated a loved one’s death more readily than did those without spiritual beliefs.107 It can be said that all who grieve are engaged in a spiritual task because they are asking questions and searching for meaning.108 We do not escape from our grief into a spiritual place; instead, the spiritual emerges in our daily coming to terms with a loved one’s death.109 As Attig explained, by relearning the world, we struggle to come to terms with the great mysteries of life. We enter into our “spiritual place” within the greater scheme of things.110 The bereaved must be able to create and sustain meaning from the loss to avoid remaining stuck in despair. The reconstruction of meaning is central to resilience and enables us to integrate the loss in our lives in a manner that fosters growth.111 Meaning-making may or may not involve a religious interpretation, but it usually moves through a spiritual and cognitive process that includes a capacity for active decision-making.112 A confrontation with death or another traumatic life event is an attack on our worldview, which provides structure and significance in our life. Our fundamental assumptions about the benevolence and order of the world become “illusions” with which we must contend. The world may no longer make sense; there is no comprehensible person-outcome contingency, no guarantee of safety and protection. Instead, our representations of the world and

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ourselves now allow for misfortune and disaster. To rebuild our life, we must again perceive the world and self in positive terms as we incorporate the loss into our new assumptive world. This process includes moving from perceptions of a meaningless, malevolent universe to creating a meaningful life, not in spite of our loss but because of our loss. In the end, we feel both more vulnerable and more appreciative.113 Searching for positive meanings is central to resilience and to moving out of the depths of grief and deciding that life is still worth living. Creating value and appreciation is another way of finding purpose through the loss, moving from “the world is meaningless” to my life is “full of meaning.” Not all questions can be answered, however, and we must learn to accept and tolerate the unknown. Our newfound awareness that terror can strike at any time encourages us to value even the most mundane events. We do not have control over life’s outcomes, but we recognize that we do control our choices in deciding what matters in our life. These choices may become the basis for making commitments to benefit others, including future generations, and it is here that purpose and fulfillment lie.

cultural capacities Some resilience frameworks are criticized for having an ethnocentric, white, Western perspective that emphasizes individualism.114 However, we recognize that each culture has a set of shared beliefs, values, behavioral norms, and practices and that this common identity may affect grief experiences. A culture’s identity, social support, sense of community, and rituals surrounding grief influence its members’ well-being.115 Although religion intersects with culture, a culture’s belief system may or may not be religious.116 As an example of the interaction of culture with religion, Israeli Arab Muslims believe that life on earth is temporary and that they will gain eternal life after death. Widows are expected to be emotionally reserved and to suppress their needs. After a mourning period of four months and ten days, a widow is expected to resume daily tasks and fulfill family responsibilities in memory of her husband. A sense of community and coherence—perceiving one’s world as comprehensible, manageable, and meaningful—promotes resilience among these widows.117 Expressions of grief also vary with a culture’s individualistic or collective focus. Individualism dominates self-definition in most Western cultures, particularly in North America, whereas the definition of self tends to be collectivistic in Asian, Latin American, and African cultures. In cultures with a strong individualistic orientation, mourners are expected to keep their

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emotions under control in most social settings, but they may grieve more openly in private. Pain tends to be seen as something that can and should be avoided rather than being an inescapable part of being human. In collectivist societies, mourning fulfills responsibilities toward the dead as well as others that continue beyond the grave. For instance, in Japan, death transforms and maintains connectedness with the deceased rather than severing the relationship.118 Grieving as a community was a common practice that traditionally brought comfort among Ojibwe tribal elders, and among the Muscogee Creek tribe, family was a main source of support.119 Mexicans typically embrace death by celebrating their connection with their deceased loved ones. Mexican Día de los Muertos (Day of the Dead) is a time when families and communities exchange memories and commune with the souls of their loved ones. The holiday reminds its participants that darkness and light, life and death, are related and form a cycle with each other. Death is not feared and may be given nicknames, such as “Cry Woman” and “Joker.” On the Day of the Dead, souls are permitted to visit their living relatives. Because they will be hungry when they arrive, families prepare their loved one’s favorite foods to share with them and the rest of the community. Revelers traditionally eat candies shaped like skulls with the names of dead relatives written on them. Special altars decked with candles are constructed as ofrendas (offerings for the dead). But levity still abounds, and altars often are adorned with replicas of skeletons engaged in the dead person’s hobbies such as golfing, sunbathing, or car racing. Music, jokes, storytelling, and laughter are all part of the celebration of life. This ancient holiday—as important as Christmas for many Mexicans and some Guatemalans—is full of mixed metaphors and quirky juxtapositions. But at its heart are deep cultural and spiritual beliefs and an absence of fear that cut across generations and geographic locations and enhance resilience.120 Ethnicity encompasses values and beliefs, social status, and support systems and thus is part of culture. Ethnic identity highlights the subjective sense of belonging to a group or culture with shared values and beliefs, combined with the significance of that membership.121 An ethnic group’s identity, social support, sense of community, and rituals influence members’ resilience in responding to loss. The Holocaust has had multigenerational repercussions for Jewish people, both with regard to survival and how loss and death are experienced across generations. Many Jews regard suffering as a fundamental dimension of life that has a powerful social function. One suffers because the world is not a perfect place. Consequently, life can be unpredictable or painful, although overall, it is full of potential. Two values guide grieving

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for many Jewish Americans: the requirement to honor the dead (e.g., a dead body must never be left alone until placed in a grave, and a simple service and burial should take place as soon as possible to be respectful of the corpse; cremation is proscribed), and the obligation to comfort mourners.122 Relatives and friends do not customarily visit the mourners between the death and the burial, but participation in the funeral and burial is traditionally regarded as one of the ten deeds that ensures a person’s place in the “world to come.” After burial, the immediate family sits shivah, a one-week mourning period in which life patterns are disrupted to demonstrate one’s grief and heighten awareness of how death disrupts life. Family members are not supposed to leave home or go to work and are to be visited and comforted, with all food and arrangements handled by others. After shivah, normal life is gradually resumed, but time for appropriate grieving is still provided. For the thirty days immediately after shivah, mourners may go back to work, but they continue to observe other restrictions such as not attending weddings, dances, or parties. The unveiling of a headstone one year after a death marks the completion of formal mourning. Each year, the anniversary of the death is formally remembered by the survivors’ lighting a memorial candle, giving to charity, and publicly reciting a memorial prayer in the synagogue.123 Professionals must understand the family’s cultural history of loss in order to tailor appropriate interventions.124 Without considering how the bereaved construct reality in their cultural context, professionals may see disturbances or aberrations when none exist in that cultural context.

social and environmental capacities Social and environmental capacities that promote resilience include self-help and support groups, family roles and relationships, and community. Social networks provide emotional, instrumental (e.g., assistance with tasks of daily living), and informational support.125 The positive effects of social support on physical and mental health of the bereaved have been extensively documented. Similarly, a perception of positive social support is usually identified with adaptation to loss.126 For example, emotional support is associated with positive adjustment and resilience following a disaster.127 The link between social support and resilience in the face of loss is complex, varying with gender, informal network reactions to the loss, the relationship between the provider and recipient of support, and type of and duration of the loss.128 Informal supports do not always guarantee well-being because of the interaction of personal capacities and background characteristics with social capacities. For example, strong networks may not be able to compensate for

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a lifetime of racism, homophobia, and other inequities. Another limitation is that social networks may be unable or unwilling to provide the support a grieving person needs. In fact, in some interactions, previously helpful networks can become unhelpful in the face of grief. Network members that are not good listeners soon become apparent; these members may silence any expression of grief, say offensive things, offer unsupportive religious judgments, or appear to be uncomfortable. Pretending a death has not occurred, telling a person to “move on and let go,” or offering platitudes are typically experienced as aversive and may create rifts in longtime social networks. Just as the bereaved are changed by their grief and must relearn their world after the loss, past relationships also are sorted out and unhelpful ones often abandoned.129 Even when an informal support network is functioning well, grieving can still be a lonely process. Grief at its most intense may isolate the bereaved from activities or friendships previously enjoyed. Groups of individuals facing similar types of loss often offer the most helpful support. They provide a vocabulary for talking about loss, a sense of how alike they are to others facing similar losses, a way to find solutions to practical problems, and contact with people, often strangers, who are generally more comfortable with grief than are friends. Support groups also help with meaning-making, such as what to do with pictures of the deceased or how to answer one of the most difficult questions among bereaved parents—how many children they have. Support groups often assume prominence as past relationships fade away. Given the social isolation resulting from the coronavirus pandemic, including family members’ dying alone, it is not surprising that many adults have formed informal online support groups.

family systems and capacities Families’ differing patterns of grieving and communication affect each member’s grief response.130 Family systems and symbolic interactionist theories are useful for conceptualizing effects of a major loss within the family system as a whole. Events surrounding a death can be normative transitions in the family life cycle that promote supportive responses, which can lead to growth rather than distress, or long-term problems in family functioning. Loss disrupts a family’s interpersonal strategies for self-definition and emotional control (e.g., the ongoing actions and related meanings from which family members derive a sense of self) and may trigger additional disruptive life events. Losses may reverberate across several generations, which has occurred with Holocaust survivors or with immigrant families who are separated. All generations are likely to be affected in the cross-generational transmission of loss

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in a family that never openly acknowledged a grandmother’s divorce, a greatgrandfather’s disappearance in World War II, a father’s abrupt departure from home, or a sister’s miscarriage. Major losses typically disrupt a family’s rules, and expectations attached to a given role in the family—such as peacemaker, scapegoat, or family star— may also be disrupted. When certain roles are lost, the family often casts about for new actors to partially fill them. In our family (NH), my son Chris was the “glue” that held our family together. After his death, no one could fulfill his role or even attempted to do so. All families have unspoken rules that govern their interactions, including how to grieve. Families with a wide range of rules are generally more flexible and better able to adapt to the loss. However, in some instances, current rules may be inadequate and new rules need to be established. With major losses, families may resort to a closed communication system to protect themselves against anxiety generated by open discussion (e.g., the rule that no one mentions the deceased’s name). Simply helping family members express their feelings, however, does not necessarily ease emotional interactions or help integrate this loss. Family members may be out of phase with each other’s grief and misjudge how others “should” grieve. Developing more effective systems of communication needs to be coupled with helping families reestablish or create functional and emotional roles that restore, or perhaps re-create, the family’s equilibrium and strengthen the family unit’s capacity to meet other life challenges. In addition to achieving open, effective communication, families face two other adaptive tasks: (1) acknowledging the reality and experience of loss and (2) reorganizing the family system to enable investment in other relationships and life pursuits.131 People construct meaning through their everyday conversations, and families need opportunities to retell their stories of the death and the deceased when constructing a new reality.132 In situations of ambiguous loss, openly addressing ambivalent feelings may promote resilience through meaning-making, revising attachments, and redefining the self.133 This framework has been applied to gender transitions in families in which family members may alternate between physical or psychological rejection and acceptance of the trans person. Both the trans person and the family may experience loss during the transition. Past rules for family interaction require renegotiation to allow room for complexity and ambivalence in queer family processes and to promote resilience through redefining self and revising attachments.134 How families grieve a wider range of losses and how grief affects the family system are discussed in the chapters on different stages of the life span.

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community capacities A community’s informal supports and accessible health and social services can facilitate resilience by building alliances with their natural supports over time. A community’s resilience includes its social capital, physical infrastructure, and culturally embedded interdependence. These factors can support growth and sustain community well-being after dramatic losses. Many individuals are only as resilient as their community as a whole, and community resources must be nurtured before a negative event occurs. To put it simply, a community’s resilience is reflected in its capacity to care for its most vulnerable members.135 The strength of community supports in promoting resilience vary within and among cultures and by racial and ethnic groups. Here is one example of a cultural community coming together. When an upper-class Hindu husband in India dies, a formal meeting with his widow is announced in the national newspaper, and those in the community who have any contacts with the deceased or his or her family come to express their condolences. In the twelve days following the death, female friends arrive at 4 p.m. to sit with the widow, talking about her husband, crying, and lending support. However, they do not give advice or speak of what she should do.136 Unfortunately, especially in individualistic cultures, people who are uncomfortable and unwilling to be with the bereaved may drift away. The centrality of community to resilience is captured among immigrant and refugee settlements and in instances of traumatic and sudden death, such as during natural or human-made disasters such as 9/11 or school shootings. Communities, often diverse in terms of race, socioeconomic status, religion, and sexual orientation, come together after horrific hate crimes, police brutality, and violence such as the bombing of mosques and churches. Airplane crashes often create a new community in shared grief: The impact of a crash of a plane from Mexico to Seattle was felt in schools, religious institutions, neighborhoods and friend circles and created a community all its own. Twenty years later, thousands gathered in a beach near the site of the crash to remember loved ones. As one family member said, “when families get together, it’s a great sense of relief to be with people who understand how time stopped for all of us. A lot of people can’t believe it has been 20 years. And yet, the people who know, know.”137

Community building is also depicted in how indigenous communities creatively and strategically respond to historical colonization and trauma,

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despite cross-generational inequities such as among First Nations and Inuit populations in Canada.138 Resilience can be found in communities with high rates of homicide and police brutality through symbols, art, and language that express a sense of purpose for members and inclusion in something larger than themselves.139

Well-Being Models of resilience typically define well-being as the absence or lower levels of psychological (e.g., depression, anxiety) and physical (e.g., somatic illness) distress. Well-being has several components in the grief process: physical and mental health, social functioning, ongoing connections to the deceased, integration of loss to foster personal growth, finding purpose in a reconstructed life and creating a new sense of self without the lost person or object. Wellbeing is not, however, simply the other side of depression or physical illness. A bereaved individual may take pride in new accomplishments and relationships and gain strength from ongoing bonds with the deceased but still suffer from mental or physical illness.140 Well-being is a highly subjective concept that is best defined by having the bereaved individual compare his or her life and relationships before and after the loss. Practitioners need to be careful not to impose their own definitions of well-being on the bereaved.

Summary The resilience process includes background characteristics and personal, family, social, and cultural capacities that affect the outcomes of loss and grief at each developmental stage. Finding meaning in loss, drawing on helpful networks, rejecting those no longer useful, and creating new meaningful supports are essential to resilience. We encourage professionals to consider ways to integrate the concept of capacities conducive to resilience in their assessments and build strength-based interventions with bereaved individuals. Styles of grieving vary among families, communities, and cultures, and we should not judge who is grieving “well” or “not well.” Grieving well is what “works for the bereaved.” Positive outcomes include physical and mental wellbeing, sources of meaning and satisfaction in life, and new opportunities for the survivors that enable them to maintain a connection with the deceased.

4 Loss and Grief in Childhood

 In this chapter, we focus on common types of profound loss faced by children: a parent’s or sibling’s death, parents’ divorce or separation, adoption or foster care, immigration and deportation, and natural disasters such as the coronavirus pandemic. Not all children have faced such major losses, but many may have experienced a pet’s death. Children are also exposed to deaths in their communities and through the media.1 As challenging as these losses may be, most children are remarkably resilient and have the capacity to adapt over time.2 In fact, in the long run, children who experience a major loss may emerge more mature, empathetic, and creative, and they may value relationships and express gratitude more than their peers.3 Yet sadness may lie just below their exterior resilient appearance. Children often have difficulty expressing feelings, and they may mask their pain through seemingly “normal” behavior, including play. Moreover, a parent’s death or divorce is not a single event or trauma; it reverberates throughout the family and, in many instances, the community. Changes to what existed before shake a child’s basic trust and sense of psychological predictability. Secondary stresses from death or separation—lower income, adjusting to a babysitter, or a parent working long hours—also reverberate throughout the family system and across generations.

Developmental Considerations Children in infancy (birth to two), early childhood (two through four), middle childhood (five through eight), and late childhood (nine through eleven) grieve differently. The chronological age markers for these developmental stages vary across studies, and the age groupings in this chapter are only approximate. Adults seeking to support grieving children need to 86

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take account not only of developmental stage but also of components of resilience: background characteristics and individual, family, community, and cultural capacities. Although young children show grief-like behavior when attachments are broken, their cognitive development is most salient to their understanding of loss.4 Their reactions to intense grief are typically more intermittent in character and longer in duration than that of adults. Some adults may disenfranchise children’s grief in detrimental ways by ignoring or minimizing their different expression of grief (e.g., a child cannot mourn until his or her identity is established). Contrary to Freud’s assumption that young children do not mourn, we now know that children’s reactions to grief are influenced by both their cognitive and emotional development.5 Moreover, as children develop language capability to describe their emotions, abstract reasoning, and an ability to anticipate the future, they relive the loss at each developmental stage and regrieve it through more mature perceptual abilities and understanding. It is not surprising that a loss in early childhood typically requires more “reworking” than a later loss because more development occurs on the way to attaining adult understanding.6 Child development researchers and practitioners draw on different theories to assist in understanding how children see the world and experience grief. Jean Piaget’s theory of cognitive development describes four distinct stages of growth, explaining how children process information and how they obtain and use knowledge at each stage. Piaget’s stages provide an overview of these developmental processes, but we have further divided the stages to include children’s understanding of loss at various ages.

Infancy: Birth to Age Two In the sensorimotor stage, children move from understanding the world through reflexes to beginning to understand object permanence. Infants experience no conscious thinking, have no concept of reality, and have limited language skills. They experience the world primarily through sensory and motor actions.7 They are unable to understand death, especially its finality, although they do experience separation anxiety and may exhibit despair and protest at the absence of a desired person.8 Infant grief is a test of object permanence: the person expected to be present or to return is no longer available to them. Behavioral changes, such as becoming agitated or moody or acting out physically, are responses to loss of the desired person, but families and professionals may not recognize these behaviors as grief.

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Young Childhood: Ages Two Through Four Piaget’s preoperational stage includes children ages two through seven; however, we have split this stage into two age groups. Regardless of the age range, young childhood is characterized by verbal development, use of play and imagination, and egocentrism. The death of a loved one and the universality and permanence of loss are often difficult for preschool children to imagine, particularly because they see play objects disappear and then return. Preschoolers typically understand that death involves separation from people and a cessation of breathing and heartbeat, but they see the world through their lens (egocentrism), so a loss can feel personal. Unable to manage intense feelings, prechoolers engage in a process of “grief, play, grief, play,” in which they vacillate between grieving and returning to play and their preexisting emotions. They may be unable to draw comfort from spoken statements and assume others will know what they are feeling. Preschoolers may be “befuddled” by what has happened and engage in repeated questioning about where the deceased is and what he or she is doing.9 Piaget referred to the preschool years as preconceptual. Although young children do not have the language capability to describe their emotions or to ask for what they need, by age four children are able to label emotions (“I feel sad because Sally took my toy.”) and are empathetic; e.g., they recognize other children’s emotional reactions to different situations. By age four or five, they generally can see a situation from another’s point of view. This allows them to find creative ways to comfort others who are upset. For example, a preschool boy might tell his mother not to cry over his sibling’s death because she still has him, and he will take care of her.

Middle Childhood: Ages Five Through Seven or Eight Although still engaging in magical, irrational, and nonreversible thought, children in middle childhood move from preoperational to concrete operational thinking—the ability to classify and understand relations. They tend to be aware of the concepts of irreversibility, nonfunctionality, and universality. Overall, they have strong emotions—intense sadness, anger, and guilt— and personalize external events. Unlike younger or older siblings, children of this age are less able to distract themselves and to keep their emotions at bay. In contrast to younger siblings, they directly state and act on their feelings. For example, they may assert that they think they killed their parent through their past anger or wish openly that they could die to be with their deceased parent.

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Late Childhood: Ages Eight or Nine Through Eleven Piaget’s concrete operational stage is characterized by children being able to think more abstractly and hypothetically and to understand logic. These children can connect the links leading to death (e.g., cause and effect). For instance, they may grasp that their grandfather’s lung cancer is connected to his smoking. Although they still struggle to manage the intensity of their emotions, they are better equipped to indicate how their behavior is connected to their feelings of loss. Compared with the turbulence of middle childhood, late childhood is relatively tranquil. Anger typically does not reach the intensity of adolescence, nor does their sadness have the overwhelming helplessness characteristic of younger children. As a result, they generally are able to move ahead after the first few months following a major loss. These gains are largely due to their more sophisticated concrete operational thinking and problem-focused coping skills. These cognitive changes bring emotional equilibrium, and they are capable of describing their feelings, verbalizing their needs, seeking support, and beginning to make meaning of their loss, which they may perceive as unjust. At this age, children focus primarily on concrete information (facts) and try to compartmentalize their emotions.10 They tend to be active in school, sports, and with friends, moving toward new experiences, developing their competence, and rarely expressing grief directly with peers.

Piaget’s Final Stage: Age Twelve Through Adulthood In Piaget’s formal operational stage, children are able to think abstractly and use logic to find solutions. They use reasoning and planning in all aspects of their life and understand why they feel how they feel. Moreover, they understand the permanency and the impact of death, but they need to be socialized into effectively managing their emotions. They are able to understand the need for support but may feel they do not need it. We view age twelve as the beginning of early adolescence (see chapter 6).

Attachment to Others and Resilience Along with a natural maturational sequence of cognition, children’s understanding of the concept of death or divorce/separation, manifestations of grief, and mental and physical well-being vary with their background characteristics and capacities identified in the resilience model.

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Background characteristics encompass socioeconomic and racial/ethnic / immigrant status and urban/rural location. Children living in urban neighborhoods with large populations of color may frequently experience death: police brutality, spousal/partner abuse, gang or school violence, random or targeted shootings, or accidents. Children growing up on farms also see death frequently and think of it as part of normal life, but the nature of death varies widely from what their urban counterparts see. Immigrant and refugee children may have fled violence in their home countries and experience new acts of violence as in the United States. Other children, regardless of their socioeconomic status, may have limited experience with death, perhaps involving only a geographically distant relative. The constancy of death and violence reported by media and on the internet means that all children are now exposed to images of traumatic deaths more often than in the past. Personal capacities refer to a child’s sense of identity and self-esteem, problem-solving skills, attachment to the parent who has died or is absent, and ability to reattach. A high level of self-esteem may give young children a sense of mastery despite adversity.11 Children younger than five generally have the fewest personal assets to bring to the grief process and therefore are most vulnerable to emotional or behavioral problems.12 Personal capacities affect children’s experience of grief as they mature and complete new developmental stages. As noted earlier, childhood loss may be regrieved numerous times and may affect behaviors in adulthood. For example, a young girl who experienced her mother’s early death may resist “growing up,” fearing what might happen when she reaches her mother’s age at death. Bereaved preverbal children may have difficulty finding words for emotions they experienced after a parent’s death as they grow older.13 The environmental and cultural context for understanding loss and coming to terms with its impact also alters as children become adults.14 Family capacities encompass meeting basic needs; a parent’s love, discipline, and assurance; routines and communication patterns; and adult support, nurturance, and continuity.15 Having a positive consistent relationship with one parent or another caring adult who is attuned to the child’s emotions provides a sense of security and supports problem-solving skills, which can help mediate losses.16 Social capacities include peers, other adults such as teachers and counselors, and support groups for bereaved children. Social support moderates many potential negative outcomes for children grieving a loved one’s death or a parent’s divorce, or experiencing violence.17 Cultural capacities encompass a child’s participation in rituals, funeral arrangements, and other customs as well as the family’s beliefs regarding the deceased’s presence and afterlife.

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Community capacities that support children include schools, religious institutions, after-school programs, grief counseling, and camps and workshops for children bereaved by various types of losses. Attachment to parents and other caring individuals is a critical component of personal capacity. The resilience model incorporates attachment theory in its examination of the psychological impact of loss on well-being. Attachment may not encompass closeness, liking, or relationship satisfaction because attachment is found even in abusive or neglectful situations.18 Bowlby was the first to observe that children’s responses to physical separation from their mother resemble the protest, despair, and apathy of bereaved adults.19 Children’s grief is a form of separation anxiety from their mother. Whether separated by death or placement in adoption or a foster home, children react first with sadness and anger but still remain hopeful that their mother will return. These feelings later turn to despair, alternating with hope. Finally, the memory of the mother’s face begins to fade. When a loved one dies, it is striking that people of all ages have feelings similar to those of children separated from their mother as they try to locate who or what has been lost, shifting among periods of anger, yearning, and despair. The intensity of the grief response generally increases with the strength of the attachment bond. Irrespective of the nature of the loss, grieving is not ended by replacement of the lost parent (e.g., through remarriage, godparents, or close family friends). Sadness may continue even when what might seem to be positive substitute relationships are available. Children often undergo secondary stressors during other changes that incorporate separation, such as beginning school, going to camp, or being left at home when the surviving parent travels. They may be sad, clinging, and anxious, reactions similar to those associated with the earlier death, divorce, or separation of a parent. Attachment theory is a useful as a way of thinking about what has been broken or lost when a close relationship ends. It does not imply, however, the psychological separation that characterized the early psychoanalytic theories of grief discussed in chapter 1. Most children retain a largely adaptive psychological relationship to their parent.20

Childhood Traumatic Grief Increasing attention is paid to traumatic grief and posttraumatic stress disorder (PTSD) in children (see chapter 2). Traumatic grief is unresolved grief resulting from the loss of a loved one in traumatic circumstances, and it is characterized by symptoms interfering with a child’s ability to optimally negotiate

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the bereavement process. However, a child’s subjective experience of death from natural anticipated causes also can result in traumatic grief involving separation distress and complicated grief.21 The coronavirus pandemic is an unusual, unexpected event beyond a child’s control and usual experience and may cause children to feel they are in danger and experience trauma.22 A child’s response to a traumatic event is mediated by age, developmental level, and external sources of support. Childhood PTSD is similar to the adult form and results from traumatic exposure in which the child experiences, witnesses, or learns about an event that involves actual or threatened death, serious injury, or threat to the physical integrity of oneself and others and responds with intense helplessness, fear, or horror.23 Researchers’ and practitioners’ increased attention to traumatic grief and PTSD is a consequence of the growing numbers of children experiencing separation from of a loved one in traumatic circumstances, such as interpersonal violence, a parent’s incarceration or deportation, natural disasters, war, and gun violence. For some children, the most traumatic aspect of separation is exposure to frightening events, such as seeing a parent handcuffed or mistreated by the police or witnessing a parent’s beating during immigration. Challenges faced by children experiencing ambiguous loss whose parents are still alive but separated from them differ from situations in which the parent is dead. One difference is that the child may cling to the hope of reuniting with their parent.24 Traumatic symptoms, such as fear, depression, and anger, can interfere with a child’s ability to cope and grieve a loved one.25 Such interference occurs in the following ways: intrusive and distressing trauma-related thoughts, memories, nightmares, and disturbing images may be triggered by (1) trauma reminders (e.g., situations, places, people, smells, or sounds reminding a child of the traumatic nature of the loss); (2) loss reminders (e.g., memories, objects, places, or people reminding the child of the absent person); or (3) change reminders (situations, people, places, or things reminding the child of changes in living circumstances caused by the trauma).26 These trauma-related thoughts cause physiological stress (shaking, pounding heart, headache, dizziness) and psychological distress (fear, anger, shame, guilt, helplessness). When children develop strategies of avoidance and emotional numbing and estrangement, they may be unable or unwilling to reminisce, feel the pain of the lost relationship, or transform their relationship with the deceased into one of memory because these tasks require tolerating loss and the reminders of change. Their ability to grieve is disrupted by traumatic intrusion—the horror associated with the death—and the resultant use of avoidance strategies.

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 Symptoms of PTSD in Children • Recurrent distressing recollections or dreams about the event. • A sense of the event’s reoccurring. • Intense physiological reactivity or psychological distress in response to reminders of the event. • At least three avoidance or numbing symptoms, such as efforts to avoid thoughts, feelings, or conversations about the event; inability to recall some aspects of it; decreased interest in normal activities; feeling detached from others; restricted range of affect; and a sense of a foreshortened future. • At least two hyperarousal symptoms (e.g., sleep disturbance, angry outbursts, decreased concentration, or hypervigilance). • Symptoms persisting for at least a month and causing functional impairment. Source: Reprinted from the Diagnostic and Statistical Manual of Mental Disorders, 5th ed., 2013, with permission from the American Psychiatric Association.

These physiological and psychological traits also are characteristic of PTSD. These characteristics may be normative in the weeks immediately following a traumatic loss. However, after a month or more, they become a cause for concern as they disrupt a child’s functioning and interfere with grieving. Traumatic grief differs from posttraumatic stress in that children may have symptoms of PTSD for a period of time that do not interfere with the process of grieving (see text box). Variables that affect whether PTSD symptoms interfere with grieving and thus lead to traumatic grief are a child’s past history of trauma, circumstances surrounding the trauma, and reactions of significant adults, especially of parents. Parents’ emotional distress and lack of support are associated with more severe and persistent PTSD symptoms in some traumatized children.27

Death of a Parent A parent’s death is probably the most difficult life-changing loss for a child. The concepts and language of adult loss are inadequate to capture a child’s

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feelings of confusion, particularly when a parent’s death is sudden. Even if children have the words to talk about their loss, the powerful flood of feelings children experience may overwhelm their conceptual abilities.28 Early research on children’s grief was based primarily on retrospective samples of adults who had a diagnosed emotional or mental disorder, such as depression, and were in treatment. A parent’s death was assumed to cause psychopathology in later life, but it was difficult to differentiate what actually occurred from what adults remembered. Three models of grief after a parent’s death were derived from this early research, and they are briefly summarized here because of their impact on grief counseling. The blunt trauma model views a parent’s death as a single event, a discrete disruptive blow “bounded in time and powerful in impact.”29 This relatively simplistic linear approach looks for a specific event in childhood to explain adult psychopathology, and it has widely influenced clinical practice related to “resolving” childhood grief.30 The shock–aftershock wave model was developed from studies of the relationship between childhood death and adult depression.31 The surviving parent’s reaction to the grieving child changes the death’s impact on the child’s life, hence the concept of shock–aftershock. An example is a mother who never openly grieves nor talks about the death of her child’s father but throughout life unpredictably lashes out in anger at her daughter, who physically and emotionally resembles her father. The cascade of events model explains adult psychopathology as being similar to death resulting from violence, suicide, or homicide. The “carry forward” of stress (i.e., the cascade of events) associated with death, which is assumed to be traumatic, heightens a child’s vulnerability throughout life, and this has cumulative negative effects on self-confidence, trust, and self-esteem. A child may experience an increase in anxiety about further loss and other family members’ safety as well as fears related to separation.32 In some studies, children of a parent who died had more problems in later life with substance use and mental disorders and had attempted suicide more often than those who had not experienced a parent’s death.33 In some instances, however, children with a problematic course of grief had a prior history of depression and a family history of bipolar disorder, or their parent’s death was due to suicide or an accident.34 Overall, the cascade effects across the life span are mediated by the child’s developmental stage, the meaning of a parent’s death, and subsequent stressors. These early retrospective studies overlooked children’s potential resilience after a parent’s death.35 In more recent studies, bereaved children were found

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to be comparable to their peers in levels of anxiety and depression and were coping well one to two years after a parent’s death.36 Other recent research identified positive psychological changes related to parental death, such as gratitude, a sense of mastery, and realization of personal strengths.37 It is now recognized that a parent’s death does not necessarily lead to depression or long-term psychological dysfunction in adolescence or young adulthood, although children often have more problems (social withdrawal, anxiety, lower self-esteem, and less self-efficacy) two years after a parent’s death than at one year. This may be because more supports are available in the first year following a death or because children do not fully absorb the reality of death in the first year. Complicated reactions of disabling grief that interfere with children’s social, physical, and emotional development are relatively rare, especially when a child’s remaining caregivers are responsive and offer safe, consistent care.38 In fact, caregiver’s well-being and family cohesion are significant predictors of children’s well-being, a pattern that we are seeing as children deal with deaths of loved ones due to the coronavirus pandemic.39 A child’s experience with a parent’s death does generally differ from that of adults for the following reasons: feelings of total discontinuity with what previously existed (e.g., a child’s world is typically shattered), terrifying insecurity (if a beloved parent can die, then nothing is predictable), worry about who will take care of them, and profound emptiness. The child may develop an even more idealized image of the parent as perfect and the only one who can truly love the child. Along with sadness and anger, children may have “forbidden feelings” of shame and guilt (especially if death was by suicide or violence), fear that they caused the death, or relief if the parent had been abusive or ill for a long time.40 Bereaved children need to be assured that they did not cause the death.41 A parent’s death separates the world into before and after; it is a defining moment. The language some adults use to describe their experience of losing a parent in childhood is that of catastrophe, devastation, and emptiness; throughout their lives, they may see the world primarily in terms of loss, danger, and unpredictability.42

Developmental Considerations and Parental Death We have considered how a child’s reaction to various losses varies with age and developmental characteristics, and we now look at variations in how children react specifically to parental death. A certain level of cognitive development is needed for children to manage death’s emotional impact because we cannot integrate something we do not understand.43 Necessary cognitive

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concepts include time (e.g., forever), transformation, irreversibility, causality, and concrete operation, along with language skills.

Infants, Toddlers, and Preschoolers: Birth Through Age Five Infants and toddlers experience a sense of “goneness” or absence when an attachment figure dies. Grieving intensely, they react with separation anxiety, crying for the caregiver’s return, sleep disturbances, changes in eating patterns, bowel and bladder disturbances, difficulty being comforted, or regression to earlier stages of functioning.44 Younger children may feel the emotional effects of parental death but not grieve its irrevocability until reaching a developmental stage in which they understand death to be final.45 Preschoolers do not have the language skills and cognitive capacity to understand the permanence of death. Lacking a fully developed sense of time, they cannot comprehend the word forever and often believe that death is reversible.46 Children at this age may talk about their parent waking up and returning, even if they have seen the parent in a casket. Engaging in magical thinking, they may think they are powerful enough to reverse the death.47 Perhaps because they do not comprehend death’s finality, they more easily remember and talk about the deceased parent than older children do. They often express their feelings through nonverbal behavior, drawing a picture of a dead parent or anxiously clinging to the surviving parent when he or she leaves, even just to run an errand. Alternatively, they may regress to earlier behavior that includes helplessness, denial, guilt, and wishful thinking that the deceased parent will return.48 Because they have not yet learned how to reverse their reasoning process, it may be difficult to convince them that they were not responsible for their parent’s death. Anxiety, sleeplessness, and mild physical symptoms such as stomachaches, headaches, and exaggerated reactions to normal cuts and bruises are common. Seeing the remaining parent sad and crying upsets most young children. They may startle the distraught parent by asking disturbing questions such as when he or she will find a “new mom or dad.” In fact, they readily shift back and forth between grief and engagement in normal activities, such as visiting friends. The surviving parent may misunderstand such “normal” behavior and question whether the child is grieving appropriately.49

Middle Childhood: Ages Six to Nine Although children may still engage in magical thinking during middle childhood, they usually are aware of the concepts of irreversibility, nonfunctionality, and universality.50 However, they may be unable to understand and accept

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logical explanations or reverse erroneous conclusions, such as believing they caused a parent’s death. If death has followed a long illness, they may express anger about the ill parent’s altered ability to function, unable to accept that such changes are due to disease and not personal rejection. They tend to see death as something tangible or physical (e.g., a spirit angel or ghost) and may externalize death as someone chasing and catching its victims. Because of their strong emotionality and personalization of external events, they may express anger at God or a supreme being and the surviving parent. Or they may display aggression or other behavioral problems because they do not know how to manage their sadness or anger appropriately. Unlike younger or older siblings, they are less able to distract themselves and control their emotions. In contrast to younger siblings, children in middle childhood say and act how they feel. They also talk openly about communicating with or wanting to die to be with a dead parent or describing their imagined heaven. Fears about something happening to the surviving parent are intensified.51 When I (NH) had to travel out of town in the first year after my husband’s death, my daughter, age eight, would cling to me and cry, begging me not to go because she feared my plane would crash. In one instance, she held onto the car door handle so tightly that two other adults were needed to remove her grip. She also asked me to phone her as soon as I got safely to my destination, which reflected an active coping style on her part. Now, as a young adult, she still wants me to text her when my plane lands.

Separation anxiety may also appear in a child’s wanting to sleep with the surviving parent, a pattern that may create long-term difficulties.52 Maturational and social capacities that appear to encourage resilience in children in this middle age range are the following: understanding the parent’s death; expressing their emotions openly, including their own vulnerability and fear of separation; reevaluating the relationship through memories and connections, talking about happy aspects and cherishing the dead parent’s possessions; and being reassured of predictability and structure in family life, even though children may chafe at discipline from the now single parent. Continued reassurance that surviving children were not responsible for a parent’s death is critical to their ability to tolerate painful and ambivalent feelings.53

Late Childhood: Ages Nine Through Eleven In late childhood, children are more capable of describing feelings, verbalizing needs, seeking social support, and beginning to make meaning of a parent’s death and constructing a new personal identity.54 Wanting information

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to correct misunderstandings and being able to integrate it without becoming overwhelmed and confused, they more readily communicate with others about the facts of their parent’s death. They may talk about being strong, brave, and protective and going about their life in a way that their deceased parent would want. Because children may express their emotions only sporadically or in short spurts and are readily distracted, their surviving parent may think their child is not grieving. Similar to earlier stages, most children cannot tolerate long periods of intense emotional pain and repeatedly shift between grieving and engaging in normal activities. Relatives may be shocked by an older child hanging out with friends, but this may be a healthy response. In fact, it is similar to the dual-process model of bereavement of alternating between loss and restoration (see chapter 2).55 In late childhood, the grieving process tends to be a balance between controlling feelings and reminiscing or actively grieving as the child copes with periodic resurgences of pain.56 For these reasons, carrying out rituals, observing anniversaries, looking at photos, and keeping possessions enable children to reframe their experience, reconstructing their relationship with the dead parent and continually revising the deceased’s image. To some extent, having a dead parent may carry a stigma of difference, being an “outsider” or someone to be pitied. If peers tease a grieving child, school may be more stressful than supportive. Academic problems, anger, hypochondria, and extreme fear that the other parent will die are likely to arise during late childhood. Similar to those in middle childhood, older children may become fearful and anxious if the surviving parent shows any sign of illness or weakness. When my (NH) daughter was eleven, I developed an allergic cough, which immediately brought her running to me, asking whether I was going to die. No words could reassure her, only the cough’s cessation. Now, as a young adult, she still feels anxious at any sign of an illness in me.

Grief may be acted out through testing rules; being demanding, critical, and messy; and fighting with siblings and peers. In such instances, parents, teachers, and other significant adults need to assure the child that he or she is valued and loved, which is central to maintaining a child’s self-esteem and helping the child construct a new personal identity.57

Resilience and a Parent’s Death Resilience enables a bereaved child to move through grief by adapting to a parent’s death. To understand a child’s grief, it is useful to differentiate a

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child’s background and individual characteristics from the family’s relational resilience as a functional unit. These protective factors can promote integrating a parent’s death into the family system.58

Background Characteristics and Individual Capacities Background characteristics affecting children’s grief include knowledge (or not) of the impending death, the gender of the child, and the gender of the surviving parent. It is unclear whether a sudden traumatic death through homicide or an accident is more problematic for children than an anticipated death. Although a parent’s sudden death may complicate grieving, a period of extended illness that disrupts family functioning may be more difficult than the death itself and result in greater anxiety and depression.59 When death is anticipated, the surviving parent’s communication patterns, the routine and security created, and the parent’s presence in daily life all affect the intensity of children’s grief. For most children, a mother’s death has more impact than a father’s because children experience greater changes in daily life and the loss of the mother’s emotional caregiver role. A mother’s death is often associated with greater anxiety, more acting-out behavior, lower self-esteem, and a weaker belief in self-efficacy than a father’s death.60 Individual capacities that may affect the intensity of grief after a parent’s death include a sense of optimism, humor, positive self-concept, an internal locus of control; spiritual and religious beliefs; and communication skills. Older children with a strong sense of spirituality may be able to create meaning from a parent’s death.61

Social Context The social context may be more salient to grief outcomes than individual characteristics. The surviving parent’s functioning level and extent of supportive care following a death may be even more important predictors of later impairment, such as depression, than a parent’s actual absence.62 Behavioral or emotional problems are most likely in instances of family stress (e.g., parental neglect, depression, or ineffective coping) or a conflictual, unhappy, or distant relationship between the child and the surviving parent.63 Parents must attend to their own mourning to respond effectively to their children’s grief. Unfortunately, some parents are so immersed in their own pain and emotional exhaustion that they are unable, at least initially, to provide the loving structure and open communication their children need to find solace. In some instances, the family environment is disrupted even more by declines in socioeconomic status or relocation.64 At such times, the support

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of another adult such as a teacher, counselor, religious figure, or family friend may partially compensate for a parent’s lack of time, energy, and care. If the surviving parent, is resilient, he or she can provide an anchor for children to construct a new worldview that incorporates the reality of the death and reduces their sense of vulnerability. Families, who are comforting listeners who emphasize that the child is not to blame, are active problem solvers, find something positive in the painful situation, and minimize disruptions in daily life, can support children as they move ahead in a healthy developmental trajectory and may diminish negative, longer-term repercussions from a parent’s death.65 Additional family system protective characteristics that aid children after a parent’s death include the following: • Family belief systems that enable them to make meaning of their experience by linking it to their cultural, spiritual, and religious beliefs, and their past and their future. • The family’s stability, observance of daily routines, cohesiveness, and ability to work together but also flexibility when needed. • Open and shared communication about what occurred and the permanence of death along, with encouragement to ask questions and express feelings, thereby validating deep pain. • External support from relatives, friends, and community members with whom the child is familiar, including quality stable childcare. • Opportunities to participate in community, cultural, and religious rituals surrounding the death and to remember the totality—positive and negative—of the deceased.66 The language used to discuss a parent’s death can markedly influence a child’s understanding, and euphemisms can unintentionally create misunderstandings, fears, and additional anxieties. For example, when a surviving parent explains death by saying that “Mom is sleeping peacefully,” children may become afraid to fall asleep. Or when children are told that “Dad is happier in heaven now,” children may ruminate about how to find heaven or why Dad was unhappy on Earth with them.

Cultural Context The extent to which children participate in culturally based mourning practices, such as a funeral or memorial service or visiting the grave, affect grief outcomes. Western cultures tend to protect young children from participating in these rituals, and some families even view them as harmful, although

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research indicates that most children benefit from being included.67 Social distancing necessitated by the coronavirus pandemic means that children are not able to participate in traditional mourning rituals for loved ones who have died. A grief counselor advised us (NH) against having Mani view Chris’s body, maintaining it would be too upsetting and traumatic for her. Months later, when we visited Alaska to fly over where Chris had fallen, she asked if we were going to go to the white room where Chris was. We suddenly realized that she had been imagining Chris lying in a hospital room all this time, waiting for us to come get him. Not viewing his body left her with more questions and negative images than if she had come with us to the funeral home to say good-bye before he was cremated.

In contrast, in many non-Western cultures, children are encouraged to participate in mourning practices. Children have opportunities to see and touch the body as a final farewell and to be prepared for and supported through these rituals by trusted adults.68

Grief Tasks Most bereaved children need to move through certain tasks or phases. Congruent with the phases of grief discussed in chapter 2, these tasks are not linear. A child does not need to complete each one before moving on to a new one. These tasks include the following: • Understand and try to make sense of what happened. • Express emotional and other strong reactions to the death. • Commemorate the life that has been lost through formal and informal remembrances. • Learn to go on living and loving, including investing in new relationships. • Develop a new sense of identity that includes the experience of death. • Reevaluate their relationship with and maintain an internal relationship with the person who has died. • Return to age-appropriate developmental tasks.69 Many children try to remain connected to the deceased parent. They may have numerous questions about where the parent is, talk to and feel the deceased’s presence, and want to keep some of the parent’s belongings. Children connected to the deceased parent appear better able to show their emotional pain, talk with others about the death, and accept support from

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others.70 The surviving parent is pivotal in contributing to the reconstruction of and ongoing connection with the deceased parent by providing opportunities for the child to participate in memorializing activities, giving mementos of the dead parent to the child, helping the child find the language to express feelings, and respecting the child’s relationship with the deceased parent—in essence, helping the child experience some control and find meaning.71 When I (NH) asked my daughter whether she would like to have a memorial service for her father with just her own friends, she wanted to talk with them to see what they thought. After getting their support, she and our minister planned the entire service: Mani shared pictures and memories of her dad, and the children sang his favorite songs including “Puff the Magic Dragon,” formed a candlelight circle, and shared his favorite cake at the end of the event! By making these choices, she gained some control over her life, even though in many ways it was forever shattered.

As children mature, they process the experience of death from a different vantage point. They are likely to experience a regrief phenomenon, particularly with regard to intimate relationships, which may evoke feelings about the deceased parent. Developmental transitions such as high school or college graduation or marriage may precipitate a resurgence of intense emotions of discontinuity, insecurity, and profound emptiness as they once again encounter the reality of the parent’s absence.72

Death of a Sibling in Childhood For some children, a sibling’s death is more life altering than a parent’s death.73 If the siblings had a close relationship, especially if the sibling helped care for the younger child, the surviving siblings face an empty space. They may exhibit behavioral problems (withdrawal, clinging to adults, nightmares, running away, excessive talking, arguing, and hyperactivity) and suffer from a heightened sense of vulnerability. Children ages six through eleven who are transitioning to concrete thought may experience a sibling’s death with confusion, anxiety, and fear about their own safety. The metaphor of “shadows in the sun” captures how a sibling’s death can perpetually influence a child’s way of being in the world.74 When parents expect surviving children to replace or step into the role of the idealized deceased child, survivors may have trouble forming their own identity and feel inadequate to meet their parents’ expectations. Resentment and anger may intensify when parents memorialize the dead child, hanging portraits of

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him or her but not of other siblings or insisting that the dead child’s possessions not be touched. Surviving siblings may interpret such idealization as their not being “good enough” and resent the implicit message that they, not their sibling, should have died. Moreover, they may feel guilty and responsible for their sibling’s death, particularly if their bereaved parents do not assure them that they were not at fault.75 Children who were conceived or adopted to “replace” a dead child carry an especially heavy burden throughout their lives. Congruent with the resilience framework, parents’ emotional availability to and communication with surviving children are critical to their sense of mastery, self-esteem, empathy, and preparation to handle death in the future. However, if parents are emotionally distant, surviving siblings—the forgotten bereaved—may suffer. In such instances, children lose not only a sibling but also their parents’ attention and support.76 When children keep their sibling’s memory and relationship alive, they feel that they are “carrying” the deceased sibling along in life. African American children’s spiritual belief that their deceased sibling “is in a better place” is found to be helpful in processing their grief and sustaining positive memories.77

Losses Associated with Separation or Divorce Young children appear to be more vulnerable than older children to the emotional and psychological consequences of separation or divorce. Younger children have difficulty understanding these events and may believe that they will never see the absent parent again because he or she is no longer a family member. Because of young children’s egocentrism and magical thinking, they may feel they caused the loss of the former family constellation and regard the parent’s absence as a rejection and an abandonment of them. In contrast, infants and toddlers tend to have fewer long-term effects, perhaps because they have little memory of both parents living together.78 In divorce, children’s divided loyalties are a major stressor, often resulting in anger, guilt, and intense sadness. In one study, only children bereaved by a parent’s death scored higher than those grieving their parents’ separation/divorce on measures of uneasiness, interpersonal inadequacy, obsessivecompulsive behavior, acting-out behavior, and depression.79 Compared with a parent’s death, children of divorced parents may be hurt more by conflict, changes in family structure, loss of economic support, and feelings of guilt and rejection. Support from extended family and the community is often compromised by divorce because of the associated stigma, anger, and blame.

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In addition, the absence of effective communication in families is more common with divorce than with death.80 Many children have little warning that their parents are planning to separate, even though they may be aware of tensions, conflicts, and even domestic violence. Children generally prefer the “known” of their family, no matter how dysfunctional, than the unknown of a “broken home.” Their initial response to separation/divorce often is disbelief or denial, feelings that grow stronger when divorce is not discussed openly. Unlike with death, there is no body to grieve.81 Ignoring what they have been told, children may create fantasies or explanations for their parent’s absence: “After we get home from our vacation, Dad will be there and he won’t ever leave again” or “Mom has gone on a trip, but I know she will come back to be with us.” Denial tends to be followed by a pervasive sadness, loneliness, powerlessness, and yearning for the absent parent. With their world uncertain and unpredictable, children may move relatively quickly to self-blame, feeling they caused the divorce— or they may ruminate about how they could have stopped it. One boy commented, “It isn’t like dying. . . . Dad had a choice and he did not choose me.”82 Small children find it difficult to imagine that a parent who no longer lives with them can care for them because caring means physical contact to them. Children also grieve the loss of routine contact and security with the noncustodial parent, and perhaps with their extended family, as well as losing their image of the ideal family.83 Children’s sense of personal failure (“I don’t matter or they wouldn’t scream at each other in front of me”) and loss of control can be linked to anger and serve to cover up despair and sadness too threatening to express. Anger may also mask a sense of being not valued: “If they really loved me, they would not have separated.” Children may feel that life is unfair or that their parents are selfish for doing only what they want to do. Anger is typically expressed in reaction to trivial things, but it generally lies much deeper. It may be silent or unexpressed, but the anger is ever present. Some children may hope for years that their parents will be reunited, even after one parent remarries. Parents who are feeling stressed, angry, culpable, or guilty about the divorce often underestimate their children’s feelings or, in their own pain, are unable to respond to them. In turn, children may be reluctant to express their negative feelings, fearing that doing so might mean that they will see even less of the noncustodial parent. When parents are not cooperating for their children’s sake, children are more likely to have strong loyalty conflicts and feelings of loneliness. However, they may keep their mourning private,

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painful, and unresolved, fearing that they will lose the custodial parent as well if they talk too openly about their sadness.84 Some children who feel caught between the two parents may feel life is not worth living. Lacking energy and the ability to concentrate, they withdraw from normal activities or have academic difficulties. Others may lose their appetite or be unable to sleep, or they may become frozen emotionally while maintaining a calm exterior. These issues tend to become more complicated when children move to a new home, community, or school after the divorce or when the noncustodial parent, generally the father, does not see the child regularly. The loss of family supports tends to be most debilitating to children with low self-esteem.85 Family capacities, especially parental problem-solving and the parents’ relationship during and after the separation/divorce, are central to how a child experiences this event. Nevertheless, many parents delay telling their children about this change, or the parent may simply say that “Dad is working out of town.” It may be easier for a parent to assume that “he’s only a child; he’ll soon get over it” or “she’s doing fine; she wasn’t really that close to her dad anyway.” Parents may think their children are too young to understand, but children need to hear repeatedly that arrangements have been made for their care and safety. In instances of separation, older children may need to know about any efforts to save the marriage and be reassured that they will not be forced to take sides. Overall, children require support in developing a coherent story to process their loss without being pressured into divided loyalties by their parents’ conflict.86

Loss and Adoption In adoption, adoptees lose a glimpse into who they are and their place of origin. Even when an adopted family provides a loving and stable environment, adopted children face numerous losses: birth parents and extended birth families, ancestors, communities, histories, and health information. Although open adoptions are becoming more common, many adopted children, particularly international adoptees, lack ethnic, racial, and genealogical connectedness or personal identity.87 In addition to their birth parents, international adoptees have also lost their country, culture, and language. In instances of cross-racial adoption, adoptees lose not only their culture but also the people who look like them, and they face a lifetime of difference and struggle with their identity. Adoptees, especially those who were in institutions or foster care, had to be warriors to survive, and they have been wounded by multiple

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losses and unanswered questions in their life. Loss and grief processes in adoption may be more chaotic, unidentifiable, and less able to be put into a perspective than with other types of loss. Adoptees may love and feel thankful for their adoptive family while simultaneously mourning the loss of their birth family. Open adoptions may reduce but not eliminate such feelings.88 Most adopted children, regardless of the age of relinquishment, grieve for their birth mother because they were connected with her throughout the pregnancy. Adoptive parents are often not prepared for the endless crying of a grieving child, which no amount of holding and rocking can soothe. The birth mother probably experienced ambivalence, sadness, and even thoughts of ending the pregnancy or her life, feelings that a near-term fetus may be able to detect and at some level remember. The trauma of being separated from the birth parent varies with the degree of attachment but needs to be addressed so that the grieving child can begin to bond to the adoptive parent.89 In one study, children who reported greater negative affect about loss of their birth mother were characterized by higher levels of depression and lower self-worth than those with a reduced sense of loss.90 Many adoptive parents do not understand this attachment and wonder “how can this baby miss her mother when she was only with her for a week.” Yet the child is probably grieving the birth mother’s smell, feel, and emotions. My (NH) four-year-old daughter arrived from India clinging tightly to my husband and refusing to let me hold her for nearly a week. She was very sick and unable to eat, and her dark eyes were wide with fear and anger. For weeks, she was up all night, throwing things in the room, spitting, and swearing at us in Telagu. And then one day she let me hold her; and she started to smile and laugh. Like many adoptive parents, we sighed with relief and naively thought that she was attaching to us and the worst was behind us.

Each developmental stage brings new issues of loss related to the adoption, especially around transitional periods such as changing schools or moving to a new home, making loss multidimensional.91 Birthdays and other special events can bring out anger over the birth parent’s absence (“If she really loved me, she would remember my birthday and contact me”), leaving both the child and the adoptive parents confused by such sadness and anger during a supposedly happy occasion. This is a living loss; the birth parent is alive somewhere in the world, but the relationship and all the dreams associated with it are severed.92 Children’s sense of loss tends to be intensified when they have little or no information about their birth parents or their own early years. In some instances, adoptive parents may not provide truthful information

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or may “shut down” the child’s questions, conveying verbally or nonverbally that they are unwelcome. To fill this hole, some adoptees fantasize and create their own stories about what life with the birth family might have been like.93 Adopted children, especially those who do not physically resemble their adoptive parents, may face questions from strangers and acquaintances that highlight their “differentness” even more: “She is so pretty, how could her mother give her up?” or “Do you know anything about her real parents?” In transracial families, the anonymity of being in a “regular” family disappears when the “conspicuous” family goes on a public outing.94 When adopted parents are asked whether they have any biological children or children of “their own,” the adoptee, who is very much biological and their own, experiences yet another negation of who he or she is. Our language of “biological,” “real,” and “own” can compound the losses experienced by adopted children. In the early stage of magical thinking (ages two to three), children come up with their own concrete conclusions regarding adoption. For example, a child whose parents said “that she was put up for adoption” might imagine a shelf where she waited for them to come get her. Adoptees need to create elaborate rationales for why their parents “gave them up,” blaming others rather than tarnishing their birth parents’ perfection. They may develop romantic fantasies of having been snatched from idealized birth parents who are still searching for them. Imagining the perfect parent eases children’s normal everyday disappointments in their adoptive parents who set rules and discipline them. The common thread is the loss of perfect parents and the harsh reality of life with not-so-perfect parents.95 By school age, adopted children often develop “family romances” of the perfect life they would have had with their birth parents. Such fantasies are especially likely to emerge when children are angry or disappointed with adoptive parents or around special events. After I (NH) said no to my daughter’s request for more TV or computer time, I was typically told that I am not her real mother but just some “stupid old stranger who did not really understand her.” Some adoptees may blame themselves, believing that they were not good enough or their parents would not have relinquished them. Issues of abandonment that school-age adopted children confront can leave them feeling inferior and inadequate. In fact, the reality is that adopted children are different; for instance, they are the exception in the classroom or at peer gatherings. School assignments such as writing a family history often underscore the adoptee’s sense of difference and can affect self-esteem and status. Indeed, autobiographies of children adopted when they were older, from an institution or foster care, can be quite short. Other adults in their lives, such as

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teachers who dwell on a child’s heritage, may not fully appreciate that adoption is directly tied to losing one’s birth family.96 For grades three through six, my (NH) daughter had to write a family history. Each time she became irritable, resistant, and upset, often tearing up her work and throwing it across the room. Her anger was understandable; she has no birth family history and was also grieving her adoptive brother’s and father’s deaths. I could only reread aloud her mother’s letter of relinquishment and tell her as much about her adoptive family history as she could tolerate hearing—and looked forward to the day when she would not have such school assignments.

When faced with these assignments, adoptees may act out at school. If they make up their family history, their teachers may reprimand them, adding to their sense of difference. Feelings of loss associated with adoption typically surface most intensely at ages eleven, thirteen, and eighteen—before adoptees are launched on their own. Some adopted youth during these transitional times express hatred toward themselves and their adoptive parents, think about suicide, and experiment with risky behavior. Others may feel confused or guilty about expressing happiness over being legally disconnected from their birth family. Knowing only half of one’s family complicates the normal challenges of late childhood and adolescence, such as developing a self-identity and achieving independence from one’s family. When adoptees do not feel supported and validated in grieving their losses, the risk of clinically significant symptoms such as depression increases.97 The concept of ambiguous loss is salient to understanding adopted children’s grief and resultant behaviors. Ambiguous losses lack clarity and are without clear boundaries, endings, or societally recognized rituals for grieving. They are embedded in chronic and repeated loss events around identity and the sense of belonging within a permanent family system.98

Loss and Foster Care Foster children also have to deal with the loss of their birth parents. When the cause is violence, substance misuse, neglect or abuse, parental death or incarceration, or homelessness, children may not have had opportunities to develop meaningful relationships with or attachments to their biological parents, and their self-worth may suffer. If their parents were deemed unfit by the state to provide care, they may have been taken suddenly from their home with little warning, explanation, or chance to say good-bye, which intensify

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their feelings of abandonment and traumatic grief.99 After removal, children oftentimes are given little or no information about their parents.100 An eighteen-year-old described the night that she, at age eight, and her brother were taken away from their mother and placed in foster care: “It was funny how we were in pain, but the world never stopped for us, it still moved on. I guess you could say it’s just like the moon and the stars—you want them to shine forever, but then they disappear and you’re left hoping for tomorrow.”101 Her remembrance from ten years earlier reflects two emotional themes common to most foster children that affect their ability to trust and attach to others: the pain and loss of separation from family, resulting in feelings of abandonment, and a stubborn resilience of hope for the future.102 In addition, foster children may be placed in successive foster homes, never having the chance to connect with another family or to be permanently adopted. These children lack clarity about whether they will ever see their loved ones again.103 Such losses can be concurrent and cascading, sometimes resulting in complicated grief. Foster children may experience chronic sorrow from nonfinite losses, living daily with an ongoing loss without a certain ending. As losses accumulate, grief is accompanied by feelings of dread that the situation will continue to deteriorate. If their feelings of grief, especially anger, are not resolved, they may act out in ways that result in removal from a placement, which in turn leads to more losses.104 An inability to mourn or the lack of support to do so may underlie the seemingly inexplicable behavior of some foster children who do everything in their power to be rejected by family after family.105 The concept of ambiguous loss is also salient in understanding the experiences of foster youth who do not know how long they will be in care and whether they will ever see their biological family again. Their relationships with family systems are ambiguous, with foster youth uncertain who they belong to and where their allegiances should lie, with the foster or the biological family. A parent may be physically present but psychologically absent or psychologically present but physically absent, making it difficult for youth to determine whether a loss occurred. Because the loss is endured repeatedly and indefinitely, it can also be traumatic. To alleviate these struggles, some youth may attempt to engage in a meaning-making process to reconcile the incongruence between their global beliefs about family and the situation in which they are placed.106 If their experience of loss is not addressed, foster youth may experience unresolved grief, confusion, and uncertainty, including an inability to “move on,” helplessness, guilt (e.g., blaming oneself for breaking up their home), depression, anxiety, hopelessness, and relationship

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conflicts.107 The placement experience is remembered as a series of significant losses (e.g., of control and self-esteem, friends and siblings, and personal belongings and space), and it leaves imprinted negative emotional scars, especially in trusting and building and maintaining relationships.108 Symptoms of ambiguous loss often mirror those of posttraumatic stress disorder, such as difficulty coping with routine losses and transitions (e.g., moving to a new home or dealing with the last day of school), making decisions, and feeling guilty and overwhelmed when asked to make choices.109 These feelings often intensify as children approach their teens. With each new placement, foster children grieve the stigma of losing not only their birth family but also their contacts with friends and significant others and a familiar school environment. If separated from siblings, particularly those who helped raise them, they may lose their only source of comfort and connection to the past. Those who have been in residential care may grieve the loss of positive relationships with their care staff. Each stage of development is characterized by boundary ambiguity, discontinuity, and successive repeated losses with each placement.110 These losses are generally greater for children of color, particularly African American youth who are overrepresented in the child welfare system and tend to remain in foster care longer than white children. Transracial placements in foster care face the potential loss of their culture and racial identity.111 In summary, foster care children must contend not only with the normal developmental issues of separating from family and finding an identity but also with the loss of home, friends, and schools—often suddenly and for reasons beyond their control. Support to grieve, open communication, and accurate information about the loss are crucial factors in whether foster children are able to derive meaning from the experience or face long-term emotional and behavioral problems.112

Immigration, Deportation, and Loss Recent changes in U.S. immigration policy have resulted in a massive increase in deportations and a dramatic shift from post–World War II policies that focused on family reunification. Many Americans were deeply disturbed by images of crying children separated from their families after crossing the border from Mexico into the United States. Most of these children were separated from their parents or other relatives without any explanation or information about what might happen. However, the loss and grief associated with immigration, which lasts long beyond those searing images, is typically

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not acknowledged or addressed by social and health practitioners or government officials. These children may be experiencing the frightening loss of caregivers or others responsible for their care, a dependable parent-child relationship, and a secure sense of home. In addition, they may lose their native language skills and cultural identity, and perhaps most important, control over their life and hope for the future. Such stress puts these children at risk for physical and psychological problems, particularly if they lack the ability to process their losses verbally or the language skills to express them to others.113 Children who lose a parent to sudden forced deportation often experience anxiety, anger, aggression, withdrawal, and a heightened sense of fear; eating and sleep disturbances; isolation; and trauma and depression.114 They frequently end up in foster care or are adopted against their parents’ wishes. Their parents may be sent to detention centers far away and denied access to family court hearings and attorneys. Parents generally do not understand that they may be losing custody of their children, particularly when deported parents return illegally to be with their children in the United States. More research is needed on issues of loss and grief salient to immigrant and refugee children in order to develop effective practice interventions.

Summary In this chapter, we reviewed major losses experienced by children: a parent’s death or separation/divorce, a sibling’s death, adoption, foster care, and immigration. Today children around the world are experiencing profound losses through war, famine, political terror, forced relocation, school and community violence, police brutality, physical and sexual abuse and the COVID pandemic. With COVID, children have lost not only loved ones but also a sense of control, security, and predictability; social interaction in a classroom setting; and reassurance from parents who are stressed by managing a job and virtual learning. We could not address all of these childhood losses here, but the resilience model, with its attention to social, family, community, and cultural capacities, offers a way of organizing information and conceptualizing interventions for other types of loss faced by children. The need for positive family capacities and supportive communities during childhood is critical. Without them, children who endure loss are likely to carry more problematic emotions and behaviors into adolescence and young adulthood.

5 Interventions for Grieving Children

 The grief associated with major childhood losses may be minimized or may not be acknowledged by adults.1 Adults may not know how to interpret children’s grief because children often distract themselves with play and friends or express their grief in outbursts. Although most children are resilient and manage to integrate their losses without professional help, some develop complicated or traumatic grief whose effects can extend into adulthood. Given the variability in grief outcomes, professionals must know how to communicate with and support both children who are experiencing uncomplicated grief and those struggling with complicated or traumatic grief and problematic behaviors. National efforts to enhance the public’s awareness of death and grief along with media attention on traumatic and violent death have increased recognition of the effect of death on children, resulting in a growth in referrals for professional interventions.2 It is painful for parents to see their children grieving, but they may be uncertain how to respond. Parents may wonder whether professional intervention is warranted and not know what type of setting—schools, hospitals, mental health centers, private practice, or child welfare agencies—would be most helpful for their child. Professional help should be considered if children develop more than one of the following changes that endure or interfere with their usual activities: • • • • •

Prolonged depression. Extreme difficulty relaxing. Less concern about appearance. Symptoms affecting the child’s physical health. Avoidance of any form of social contact or activities and hobbies previously enjoyed. 112

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• • • • • •

113

Feelings of worthlessness. Sleep disturbances (e.g., nightmares, insomnia). Academic or behavioral problems in school. Psychosomatic complaints. Eating disruptions or disorders. Regressive behaviors.3

Interventions explored in this chapter include both informal supports for children with uncomplicated grief, including education and relevant literature for children and parents, communication strategies, rituals, and support groups, as well as more specialized professional interventions for children with complicated or traumatic grief, such as psychotherapeutic groups, play therapy, and family therapy.

Assessment A multidimensional assessment can determine how to best help a grieving child and his or her family. Similar to the resilience model, a tripartite assessment of a bereaved child examines (1) individual capacities, (2) factors related to the death, and (3) family, social, and religious/cultural capacities.4 The assessment model shown in figure 5.1 provides a guide for clinicians as they explore a child’s death-related bereavement. Assessments help clinicians set goals and develop a culturally appropriate care plan that also takes into account any discrimination and inequities experienced by the child. Written forms guide practitioners through these assessments and provide thorough explanations for each category. For non-death-related losses, the “deathrelated factors” can be modified to include the type of loss (e.g., divorce and whether the child anticipated it, how much marital conflict precipitated the divorce), the child’s contact with and relationship with the absent parent (e.g., the quality and frequency of visits with the noncustodial parent), and expressions of “good-bye” (e.g., rituals to mark the transition from married to divorced parents). Assessments are tailored to fit different settings in which professionals work and the distinctive needs of children and their families. For example, school social workers planning a support group for children experiencing divorce or death may emphasize their school performance and peer and teacher relationships. Child welfare or mental health professionals working with children exposed to violence, trauma, or abuse should also address their physical health, safety, environmental conditions, posttraumatic stress

Individual factors

Death-related factors

Age Developmental stage Cognitive level Temperamental characteristics Past coping/adjustment Home school Interpersonal/peers Hobbies/interests Global assessment DSM-IV-TR Axis V Medical history Past experience with death/loss

Type of death Anticipated/sudden “Timeliness” of death/preventability Degree of pain Presence of violence/trauma Element of stigma Contact with deceased Present at death Viewed dead body Attended ceremonies Visited grave/mausoleum Expression of “good-bye” Relationship to deceased Meaning of loss Grief reactions

Family/social/religious/cultural factors Nuclear family Grief reactions Extended family Grief reactions School Recognition of bereavement Peers Response to bereavement Religious affiliation Membership/participation Beliefs about death Cultural affiliation Typical beliefs about death Extent of child inclusion

Figure 5.1 Tripartite assessment of the bereaved child Source: Nancy B. Webb, “Assessment of the Bereaved Child,” in Helping Bereaved Children: A Handbook for Practitioners, ed. Nancy B. Webb (New York: Guilford Press, 2000), 30.

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disorder (PTSD), and traumatic grief.5 Assessments often include observations of and interviews with the child, the parent, or significant others to obtain more information about the child’s grief. Interviews with a child’s family reveal how family members communicate their reactions to loss and process the events. Assessment areas useful to explore with parents, guardians, and other relatives of children bereaved by death include the following: 1. The child’s characteristics. How old is the child? What are his or her developmental abilities, needs, and temperament? 2. Details of the loss. What specifically has occurred? How? Who was present? What did the child see? What was he or she told? 3. Rituals. How and to what extent was the child involved in pre- or postdeath rituals (e.g., family meetings, memorial services)? 4. Caregiving. Who has been taking care of the child? How has the child’s routine changed? 5. Family support. Is the family able to support the child materially and emotionally? How are other family members responding to the loss? Are they able to comfort the child and show the child how to display feelings? 6. Current family functioning. What are the family’s primary needs and concerns? What are their previous experiences with loss, and how have family members coped with past and current losses? How does the family give information to the child? What has the child been told? Which of the family’s cultural and religious/spiritual beliefs are relevant to the situation? What are their beliefs about an afterlife? What informal and formal social supports are available to both child and family? How secure are the family’s relationships with and support of the child? 7. Knowledge of death before the loss. What were the child’s experiences with and understanding of death before the loss? 8. Understanding of the current loss. What does the child say about the cause of death? 9. Grief response and level of functioning. What are the child’s emotional and behavioral reactions to death? What are his or her manifestations of grief? How does the child’s current level of functioning compare with functioning before the death? How well is the child tolerating emotions of grief?6 Central to assessment is determining whether children are at greater risk for complex grief reactions and increased mental and behavioral health problems.7 Although most research on complex, intense grief has been with adult samples, findings are often generalized to children and their grief

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reactions.8 With the recent inclusion of persistent complex bereavement disorder in the DSM-V, better assessment of complex grief in children is now possible.

General Techniques and Interventions Many adults, particularly in Western societies, are hesitant to teach children about it. For example, some parents rush to replace dead goldfish before their children come home from school, thereby missing an opportunity to talk to them about grief, death, family-related beliefs and rituals, and some of life’s most important lessons. Professionals should encourage adults to find opportunities to teach children about death as a natural and inevitable part of life. Children’s films such as The Lion King or Bambi may serve as openings for discussion. Taking advantage of these moments and being open to discussion and expression of feelings will help children face future losses with greater confidence.

 Teaching Children About Death Through Natural Events One of the greatest lessons about death for my (SS) children has been through our pets’ deaths. My children are involved in all aspects of the dying process, including making the decision for a pet to be euthanized, being present as the pet dies, holding the animal after death, accompanying me to pick up the ashes after cremation, and then determining what we, as a family, do with them. These experiences have taught my children that death is natural, and they have learned to value the rituals after a death. It has opened the door to discussions about my death, the death of their father, and deaths of other people they love. They have learned that death is a safe topic for discussion. If a family does not have a pet, they can use nature, such as leaves changing in the fall, as an opportunity to teach about death. It is important that adults do not shy away from these daily learning opportunities.

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Literature for Parents and Children About Death, Dying, and Bereavement Many books address a wide variety of losses for children of all developmental stages and can help parents talk with them about death and grief. The text box lists a sampling of books for preschool and elementary school readers that teach concepts about grief and offer ideas for questions and discussion. Parents and professionals should choose topics relevant to the child, evaluate the book’s suitability, match the book to the child’s capabilities, and read the book to or along with the child.

 Books for Children About Death, Dying, and Grief Books for Preschoolers and Early Elementary Readers Deaths of Animals and Pets • R. Biale, My Pet Died (1997). • L. K. Brown and M. Brown, When Dinosaurs Die: A Guide to Understanding Death (1996). • B. Cochran, The Forever Dog (2007). • J. Fruchter and B. Friedman, Remembering Blue Fish (2017). • M. Kantrowitz, When Violet Died (1973). • J. Kramer, A Gift from Rex: Guiding Children Through Life and Loss (2001). • D. O’Toole, Aarvy Aardvark Finds Hope (1988). • C. Rylant, Dog Heaven and Cat Heaven (1995, 1997). • S. Varley, Badger’s Parting Gifts (1992). • J. Viorst, The Tenth Good Thing About Barney (1971). • H. Wilhelm, I’ll Always Love You (1985).

Deaths of Siblings, Friends, and Other Children • E. Bunting, Rudi’s Pond (1999). • F. Clardy, Dusty Was My Friend: Coming to Terms with Loss (1984). • J. Cohn, I Had a Friend Named Peter (1987). • J. Johnson and M. Johnson, Where’s Jess? (1982).

• R. S. Schlitt, Robert Nathaniel’s Tree (1992). • J. Simon, This Book Is for All Kids, but Especially My Sister Libby. Libby Died (2001). • L. Taylor and R. Taylor, I Miss My Brother (2008). • B. Weir, Am I Still a Big Sister? (1992).

Deaths of Parents, Grandparents, and Other Adults • J. Bartoli, Nonna (1975). • R. Cobb, Missing Mommy (2013). • C. K. Cohen, Daddy’s Promise (1997). • J. Czech, The Garden Angel (2000). • Dewdney, Llama Misses Mama (2009). • J. Fassler, My Grandpa Died Today (1971). • K. Hesse, Poppy’s Chair (1993). • J. London and S. Long, Liplap’s Wish (1994). • M. Mundy, Sad Isn’t Bad: A Good-Grief Guidebook for Kids Dealing with Loss (1998). • J. Rijken and M. van Gageldonk, Goodbye, Grandpa (2018).

General Topics and Other Death-Related Events • K. L. Carney, Together We’ll Get Through This! (1997). • D. Fassler and K. McQueen, What’s a Virus Anyway? The Kid’s Book About AIDS (1990). • M. Fox, Touch Boris (1994). • S. Greenlee and B. Drath, When Someone Dies (1992). • B. Mellonie and R. Ingpen, Lifetimes: A Beautiful Way to Explain Death to Children (1983). • T. Parr, The Goodbye Book (2015). • M. Shriver, What’s Heaven? (1999). • J. L. Winsch and P. Keating, After the Funeral (1995). • B. Zucker and K. Fleming, Something Very Sad Happened: A Toddler’s Guide to Understanding Death (2016).

Books for Elementary Readers Deaths of Animals, Pets, and in Nature • J. H. Wright, I Miss You: All Pets Go to Heaven (2015). • L. Buscaglia, The Fall of Freddy the Leaf (1982). • C. Demas and A. Hoyt, Saying Goodbye to Lulu (2009).

• N. Tillman, The Heaven of Animals (2014). • E. B. White, Charlotte’s Web (1952).

Deaths of Siblings, Friends, and Other Children • F. Chin-Yee, Sam’s Story: A Story for Families Surviving Sudden Infant Death Syndrome (1988). • E. Coerr, Saddako and the Thousand Paper Cranes (1977). • C. C. Greene, Beat the Turtle Drum (1976). • K. M. Miller, Chippy Chipmunk: Friends in the Garden (2015). • D. B. Smith, A Taste of Blackberries (1973). • B. J. Turner and M. Backer, A Little Bit of Rob (1996).

Deaths of Parents, Grandparents, and Other Adults • T. Alexander, Things I Wish I Knew Before My Mom Died: Coping with Loss Everyday (2019). • T. A. Barron, Where Is Grandpa? (2002). • E. Donnelly, So Long Grandpa (1981). • E. Douglas, Rachel and the Upside Down Heart (1990). • J. Kaplow and D. Pincus, Samantha Jane’s Missing Smile: A Story About Coping with the Loss of a Parent (2007). • B. Marshall, Animal Crackers: A Tender Book About Death and Funerals and Love (1998). • J. W. McNamara, My Mom Is Dying: A Child’s Diary (1994). • L. Miles, The Rag Coat (1991). • C. Noorda and A. Rauscher, Grandma’s Piles of Love (2015). • E. S. Powell, Geranium Morning (1990). • E. Smid, Luna’s Red Hat: An Illustrated Storybook to Help Children Cope with Loss and Suicide (2015).

General Topics • J. Album, Tell Me About Heaven Grandpa Rabbit: A Book to Help Children Come to Terms with Losing Someone Special (2015). • J. Cook and A. DuFalla, Grief Is Like a Snowflake (2011). • A. G. Gains and M. E. Polosky, I Have a Question About Death: A Book for Children with Autism Spectrum or Other Special Needs (2017). • K. Jaggers, My Heart Hurts: A Grief Workbook for Children (2017). • S. Kerner and I. B. Haywood, Always By My Side (2013). • C. Meng and Jago, Always Remember (2016).

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• L. Oliver, Where Are You? A Child’s Book About Loss (2007). • K. Owen and H. Braid, The Dragonfly Story: Explaining the Death of a Loved One to Children and Families (2018). • J. Rowland and T. Baker, The Memory Box: A Book About Grief (2017). • P. Coleman, Where the Balloons Go (1996). • P. Goble, Beyond the Ridge (1993). • L. Goldman, Bart Speaks Out: An Interactive Storybook for Young Children About Suicide (1997). • L. Van-Si and L. Powers, Helping Children Heal from Loss: A Keepsake Book of Special Memories (1994).

Telling Children About a Death Children’s grief is often complicated when well-meaning adults withhold information or do not honestly talk with them. Children’s responses are strongly influenced by their understanding of the causes and consequences of loss, and information is critical throughout their grief process. Although many adults believe that children are “too young” to understand death, to participate in bereavement rituals, and to deal with painful situations, children are more likely to become confused and to grieve in isolation when excluded from these conversations and events or feel that secrets are being kept from them. As noted in chapter 4, adults’ use of metaphors, religious references or platitudes, and vague communication can lead to greater confusion for a child. In such instances, children are likely to be affected by unspoken emotions, make up their own explanations for what is happening, misinterpret conversations they overhear, and feel guilt and responsibility for the death. When excluded from family discussions, children are denied opportunities to grieve openly and to learn about life through loss. Clinicians contend that the best way to talk with children is to speak honestly, determine what they want to know, answer their questions directly, provide age-appropriate and accurate information, and frame explanations within the family’s cultural belief system.9 How children are told of a death may either ease or complicate their grieving process.10 School social workers or counselors may need to help parents with the emotional task of breaking “bad news” to children, especially when parents are overcome with their own grief or find it difficult to tell them. Guidelines for breaking difficult news to children include the following:

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1. Find a quiet and private place to talk to the child and provide verbal cues (e.g., I have some very sad news for you, Tameka). 2. Sit close to the child while telling the news, and consider using a gentle touch. 3. If the individual has yet to die, ask if the child would like to visit the person, recognizing that this is the child’s choice. 4. Once the death has occurred, provide a brief and accurate description of what happened, using concrete words rather than euphemisms. For example, telling a child that “we lost Grandma last night” implies that Grandma may be found, or saying that “your mother is okay now; she is sleeping and at rest” may be interpreted literally and create tremendous anxiety for the child about going to sleep or offer the hope that his or her mother will wake up and return. Concrete words like died and death more accurately convey what happened, even though some adults are uncomfortable using these words. Assure the child that the death was not his or her fault, emphasizing that all living beings die. 5. Be honest with the child, share your own feelings, and if appropriate, let the child know you also are sad or in shock and that it is beneficial to talk about all these reactions. 6. Reassure the child that his or her feelings are normal and common and that there are no “right” or “wrong” emotions. If the child is not ready to share his or her emotions, assure the child that adults are available to listen when the child is ready to do so. 7. Sit quietly with the child, allowing time for the child to take in the news. 8. Respect the child’s responses and needs (e.g., to be alone, cry, express anger, scream, or even play or run around outside). 9. Reassure the child that someone will take care of him or her. This is essential when the deceased was the primary caregiver.11

Rituals with Bereaved Children Rituals are activities performed in a specific way and circumstance. Often attributed to a religious ceremony, rituals are also used in secular situations to honor a person. Culturally congruent rituals such as symbolic expressions of feelings can be instrumental in helping children grieve.

family-initiated rituals Rituals and ceremonies provide an opportunity for family and friends to come together to say good-bye to the deceased and, in many instances, celebrate

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the deceased’s life. Not all cultures view funeral rituals as a celebration of life; some religious ceremonies are performed to help the deceased reach another place such as occurs in Buddhism or Islamic faiths. Children who participate in postdeath rituals exhibit less psychological distress in the years that follow than those who do not.12 Funeral and burial practices and other culturally dictated bereavement rituals may ease children’s grief if children are prepared and given support during the event and afterward. Some parents believe that children are too young to fully understand death and what occurs at a funeral. Like adults, children need opportunities to say good-bye. When children do not have this opportunity, years later they may exhibit anger, depression, and confusion over “what happened.” It is helpful to explain rituals so children know what will occur and why and ask them if they want to participate.13 The text box illustrates an example of such preparation. During the services, an adult familiar with rituals in the child’s culture or religious or spiritual beliefs should be near the child to explain and answer questions. After the services, adults should be available to talk with children about their reactions. In some instances, children may be able to help plan part of the memorial service or plan a special service with their friends.

 The Importance of Memorial Rituals for Children When our (BK) seventy-eight-year-old neighbor died suddenly after a fall, our two-and-a-half-year-old son wanted to attend the funeral services. He was fond of our neighbor and curious about what had happened to him. We explained that in our belief system when a person dies the spirit leaves the body, and without this energy, the body is lifeless. We used the analogy that a glove can move with a hand inside it, but if the hand is removed, the glove will fall to the ground and not be able to move by itself. We explained what he would likely see at the funeral, noting that people would be crying because they would miss Mr. S. and that the body would lie lifeless in a casket at the front of the room for people to visit one last time before burial. We said that the body would be cold to the touch because it no longer had a spirit to keep it warm or to keep the blood flowing. Our son asked many questions

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and seemed to soak up the information. He appropriately expressed his sadness through short bursts of tears and then just as easily turned to playing with the neighbor’s grandchildren. Although developmental theories suggest that children of this age are incapable of understanding the permanency of death, we were surprised to hear our son explain to his grandmother that Mr. S. was dead and couldn’t live in his house anymore because his spirit had left his body. He seemed to understand, and this initial experience with death and the rituals that followed it laid a foundation that has helped him to respond to other deaths. During a grief camp, I (SS) worked with a six-year-old boy whose grandfather had died. Timmy’s grandfather was his primary caregiver; Timmy’s mother worked a night shift and Timmy’s father was not involved with the family. During an activity in which we played hot potato with a ball to help the children articulate their feelings associated with the death, Timmy became increasingly angry and agitated. When the ball landed on him, he screamed out that he was angry at his mother for not letting him attend his grandfather’s funeral because she thought he was too young and would not understand. Timmy had held on to those feelings for almost a year; he felt he never had a chance to say good-bye. To help Timmy, we had a funeral-like ceremony for him to remember his grandfather, tell us stories about him, and say goodbye. We invited his mother to attend so she could participate in this with Timmy and it could be integrated into their family grief work.

professional-initiated rituals Beyond funerals and other memorial services, children and their families may find comfort in other culturally appropriate rituals. Professionals should consider the following: • Rituals should be created as a child’s story of loss is shared; they should not be imposed. • Rituals usually involve objects that have a symbolic value, such as a candle, a letter, a song, or a picture. • Rituals should lead to thinking about their meaning and implications. After a ritual, it is helpful to discuss participants’ thoughts and feelings.14

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Helpful activities in ritual ceremonies with children include planting a tree or a flower that they may watch growing in memory of the deceased, lighting a candle next to a photograph, drawing a picture, creating a card for a special occasion or placement in the casket or grave, releasing an ecofriendly helium balloon with a message attached for the deceased, creating a plaque or mural in honor of the deceased, singing a song or writing a poem to recite at a memorial service or on the anniversary of the death, and making a “prayer feather” (a decorated feather with special wishes or thoughts attached to it) and releasing it into the wind. Rituals may also be created to help children address non-death-related losses. For example, a ritual could be designed to help children and their family going through divorce. Each person could talk about family members’ strengths, create a symbolic representation of what the family has and will continue to mean to each of them, discuss how divorce may change their daily life, and express their love and intentions for each other and for their family’s future relationships. Developing a “feelings ball” can help children express thoughts, emotions, and concerns about changes occurring in their family system through a nonthreatening physical activity. To make a feelings ball, individuals write feeling words (e.g., sad, angry, scared) on the white spaces of a soccer ball and write statements on the black spaces of the ball (e.g., “ A time I felt happy was . . .” “I am scared when . . .” “I feel most understood by . . .”). The feelings ball provides an opportunity to integrate a physical activity into a therapeutic moment for children, and it can be used by a family system as they seek to understand how each member is grieving. Music, pictures, or notes written to the noncustodial parent may help children with the transition from married to divorced parents. Creating therapeutic rituals for losses at different stages of the life span are described in subsequent chapters.

Acknowledging and Anticipating Triggers of Grief Young children may struggle to express their feelings of grief,15 and grief reactions may be revisited at different developmental milestones. Children bereaved by death or divorce may experience a resurgence of grief around holidays, anniversaries, or graduation ceremonies, and children who are in foster care or adopted may mourn again when they enter adolescence or young adulthood as they remember how their family was changed or grapple with family they never knew. When significant milestones draw near, children may become withdrawn, extremely emotional, or engage in unusual behaviors. If adults anticipate these grief triggers, they can be prepared to respond to activated grief (e.g., touching base with bereaved children at significant

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events; being present for but not overwhelming a child; and being sensitive to grief that may underlie seemingly inexplicable behavior). A variety of interventions is available to professionals to help children through such regrief experiences. For example, a child or other family members might perform a ritual to share memories, honor past relationships, and express feelings (e.g., write a letter to the deceased or absent parent, make a cake for the deceased’s birthday, draw a picture of favorite memories or reactivated memories). Sesame Street in Communities and other websites have videos, activities, and discussion questions that enable children and families to participate in shared grief experiences. Mr. Rogers also developed a segment on a fish’s death in which he communicated the importance of feelings after a death.16

Communication and Therapeutic Goals To determine grieving children’s needs and create a therapeutic alliance, four goals for communicating must be met. These communication goals set the stage for developing a meaningful, trusting relationship to explore areas of pain: 1. Establish rapport by meeting children wherever they are, joining them in their activities, playing alongside them, being comfortable with silence, and being honest with them. 2. Determine children’s developmental level by observing their vocabulary, comprehension, and behavior. 3. Speak to children at their level, using their vocabulary and taking into consideration their developmental abilities. 4. Form evaluations for your assessment based on children’s statements, body language, and play.17 The main therapeutic goals for bereaved children are to ensure that the family can care for them and provide their daily material needs, understand their needs for emotional support, and assist with their expression of thoughts and feelings; facilitate the mourning process; and prevent the development of complicated grief.18 Various professional interventions to meet these goals are described in the following sections.

Play and Play Therapy Children may not possess the vocabulary necessary to express their feelings and inner conflicts. Play, however, comes naturally to them and allows them to articulate their inner world. Children may use dolls, drawings, games, puppets, art supplies, and other media, along with their imagination, to act out feelings that may be too powerful or threatening for them to admit. For

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example, children who have been abused or have experienced a traumatic event such as a homicide may find it especially difficult to talk about the event. The best method of working with these and other bereaved children is to help them process the feelings of grief that they cannot express verbally through play, or as Webb stated, “play out their anxieties.”19 Many professionals utilize a combination of play, such as art and traditional play therapy, and talking to help children process their grief. Play therapy is any “helping interaction between a trained adult and a child that seeks to relieve the child’s emotional distress through the symbolic communication of play.”20 The difference between play and play therapy is the nature of play “communications” between the child and the therapist. Play therapy is based on a “systematic and therapeutic approach to assist children to resolve psychosocial stress so they can grow and thrive.”21 An adult who understands the symbolic nature of children’s play interprets play activities in a nonthreatening way. Most grief centers and some large hospice programs offer play therapy. It can be either directive or nondirective, with children responding differently to the technique employed. Therapists should understand how children from different racial and ethnic groups may respond to both directive and nondirective forms of play and expression.22 For instance, one play therapist used a nondirective strategy of play to address feelings of loss and abandonment for an African American child in foster care due to her parent’s incarceration. The child needed to have a sense of control about something in her life, so the therapist did not attempt to join in with the child’s play until invited to do so.23 A play therapist who worked with a child from Saudi Arabia whose father died of cancer used a more directive form of play therapy because the child had been raised by adults expressing more authoritarian roles. Basic communication techniques of play therapy are drawn from the work of Kottman and Schaefer: tracking, restating content, reflecting feelings, and encouraging.24 Although developed almost thirty years ago, these techniques continue to be used by play therapists today. Tracking is narrating what a child is doing while playing without naming the toy, object, or action until the child does. Restating content is finding a slightly different way to repeat what the child has said using similar words to help the child feel understood and to clarify any misunderstandings. Reflecting feelings helps build the relationship and may require deducing from the five most frequently expressed feelings (sad, happy, scared, mad, and guilty) based on a child’s play behavior and body language. Finally, encouraging uses strategies that “convey faith in and acceptance of the child and a positive belief in the child’s abilities.”25

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Most children like to draw, and they create images to express unconscious and symbolic experiences that are often too difficult or painful to talk about directly. Some see art as a natural language for children who may not have the words to articulate how they feel at their developmental stage.26 Children’s drawings may facilitate communication and enhance understanding of sensory memory (e.g., what children heard, saw, or felt related to a loss or

 Practical Tips and Activities for the Therapeutic Use of Children’s Drawings • Create a welcoming, nurturing, nonthreatening, and safe environment. • When choosing the art medium, consider children’s individual needs and the session’s structure. • Select more structured media (e.g., colored pencils, crayons, magic markers, and oil pastels) for lower-functioning children to minimize their frustration. • Avoid hovering over children. • Avoid distracting conversations and questions while children are drawing. • Convey a genuine interest in the final product. • Encourage children to talk about their drawing by asking open-ended questions (e.g., What is the little girl doing? What is the little boy thinking? How do the people in the picture feel? Where are the people in the picture going to go?). Consider these drawing-based activities for children: • Designing memory boxes. • Creating grief masks to show how we can hide our feelings. • Drawing hearts broken and healed, including how we heal our hearts. • Tracing bodies and drawing our wounds from the loss, then retracing the body and discussing how those wounds can turn into scars as we heal. Source: Paul T. Clements, Kathleen M. Benasutti, and Gloria C. Henry, “Drawing from Experience: Using Drawings to Facilitate Communication and Understanding with Children Exposed to Sudden Traumatic Deaths,” Journal of Psychosocial Nursing and Mental Health Services 39, no. 12 (2001): 12–20.

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traumatic death) and may be used for assessment and intervention.27 Group interventions with bereaved children often ask children to draw and share pictures of their family (past and present) and themselves with the deceased or absent parent or sibling. The preceding text box offers guidelines for the therapeutic use of children’s drawings. With increased attention to violence targeting people of color and members from certain cultures or ethnic groups, such as police shootings in African American neighborhoods, shootings in Jewish synagogues, and bombings of Muslim mosques, play therapists need to be equipped to address children’s grief and trauma with culturally congruent play techniques. Practitioners need to be aware of how diverse populations are affected by larger structural factors, including issues of racism and the intersectionality of racism, sexism, xenophobia, anti-immigrant sentiment, and poverty that compound grief and influence overall psychosocial well-being.28 Practitioners need to examine their own racist and xenophobic attitudes and behaviors before providing therapy to children. The transactional contextual model of play therapy acknowledges the effects of the social environment and systemic factors and emphasizes empowering the child. Play environments and materials used in play therapy should reflect the cultural context, which includes the therapist’s knowledge about religions, cultural practices, and beliefs as well as structural factors such as oppression and poverty, which negatively affect certain groups.29 The setting in which children play should contain culturally diverse artifacts, pictures, and drawings: dolls from different races and ethnicities, bilingual or culturally diverse children’s books, ethnic music to play during activities or to use therapeutically, and maps or globes that provide visual cues for the child to discuss his or her family’s place of origin or immigration experience, if relevant. Mindfulness and stress reduction strategies are congruent with many different cultural practices and can be integrated into play therapy or other interventions for grieving children to assist with anxiety.30 In the wake of violence and police brutality in the United States, interventions also need to address systemic factors, particularly racism.

Group-Based Interventions support groups Grief impacts the entire family system in a variety of ways. As a result, parents or other caregivers dealing with their own grief may be unable to effectively help bereaved children (see chapter 4 on family and social capacities).31

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When parents are overwhelmed by their own grief and find it difficult to help their children, children’s bereavement support groups may provide surrogate families. These groups give children a safe place to express their emotions, have them validated by other children with similar experiences, and learn from one another.32 Peer relationships that develop in bereavement support groups may help children build a sense of self-esteem, reduce their feelings of isolation, and alleviate their grief symptoms, depression, and behavioral disturbances.33 Both parents and children can benefit from discovering that they are not the only ones with major losses. The agenda for support groups is determined by the type of loss (e.g., divorce, death, chronic or terminal illness), group members’ needs, group setting (e.g., schools, mental health centers), and goals. In contrast to support groups for adults that are sometimes run by group members, children’s groups require trained leaders who understand the grief process and children’s reactions to loss and who have empathy, communication, and group skills to work therapeutically with them. Animals may also be used therapeutically in support groups. The Delta Society, for example, promotes the use of therapy dogs and other animals to assist children. Group-based activities that support bereaved children can address specific tasks, such as the following:34 1. Understand and try to make sense out of what is happening or has happened. Group activities for this task allow children to share their personal loss through drawings of the deceased person, telling stories about the death and mourning rituals such as funerals, or using puppets or other creative media to discuss their family’s beliefs about what happens to a person after death. 2. Express emotional or other strong responses to present or anticipated loss. A variety of activities encourage children to express their emotions in ways that do not harm them or others and validate their feelings with the group. Selecting “feeling” cards or flowers to represent their current mood, sharing music, drawing, role playing or movement, discussing their dreams, sharing the highs and lows of their week, and acting out feeling charades are activities that foster expression of feelings with the group. 3. Commemorate the life that has been lost through formal or informal remembrances. A frequently used group activity to commemorate the deceased’s life is having children make memory boxes decorated with special items and memories placed inside. Other activities are making memory scrapbooks, decorating a picture frame, and making beeswax candles for the family to light on special occasions.

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4. Learn how to continue living and loving. Facilitators may encourage children to identify others who are important to them, help them examine changes in their family following a death, and discuss their hopes and dreams. As part of the group’s termination, children may take a group picture, share contact information, sign memory books, and plan future group reunions.35 This task-based model is primarily for children who have experienced death, but it can be adapted to include activities appropriate to other losses. For example, children whose parents have divorced also may benefit from group activities that allow them to understand and make sense of divorce, express their emotional response to it and its associated losses, remember the former family configuration, and learn how to integrate the divorce and reconfigure their relationships to go on living and loving. Support groups for children of divorce are becoming more common at schools, community centers, and weekend or summer camps. As is true with people of any age, a group setting may not appeal to some children, so an individual assessment is necessary to determine its suitability. Issues specific to children of color and from different racial, ethnic, and cultural backgrounds need to be considered when designing and implementing groups for them. For example, facilitators should take account of (1) the group’s heterogeneity; (2) a child’s conceptions, expectations, and needs relevant to the group’s structure, and process; (3) variation in the members’ communication styles and mourning rituals; (4) preparation of children from diverse backgrounds for the group; and (5) strength-focused skills and techniques in problem solving.

psychotherapeutic and bereavement groups Whereas support groups emphasize informal mutual support, trained professionals structure interventions for psychotherapeutic bereavement groups. The goals of these more formal groups vary but usually try to minimize complicated grief reactions, ease symptoms, and enhance psychological well-being. Some support groups are peer-based with children in similar situations learning how to support each other. Others are based on a set curriculum or are more psychoeducational in nature and integrate training for children and adults in a set duration of time, such as six or ten weeks. An example of such a curriculum is Kids Supporting Kids, which helps children communicate their loss, name and express emotions, and cope effectively. Through activities, play, and peer support, children’s grief was lessened and negative behaviors associated with grief were diminished in a school setting.36 Other

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types of support groups are designed in a workshop format, with longer sessions, but the group meets only a few times. Similar to psychoeducational models, children experienced a reduction in grief symptoms following the workshops.37 In a large meta-analysis, music therapy was identified as one of the most effective interventions for grieving children because music plays an important role with youth through the shared meaning of song lyrics.38 As with all psychotherapeutic interventions, group work is not effective for all children or in all circumstances. Culturally congruent assessments are needed to ensure that the child could benefit from this type of therapeutic setting.

Family-Based Interventions assessment Families are an important healing resource for grieving children. Children of single-parent families, LGBTQ families, multigenerational families with grandparents as primary caregivers, blended families, traditional two-parent households, and foster care families generally differ in the adversities they face and in their capacity for responding effectively to loss. Congruent with the resilience model, family assessments should include a family’s social and financial status, gender-based roles, religious and spiritual beliefs, and personal, social, and cultural capacities.39 Understanding culturally relevant belief systems, rituals, and expectations regarding mourning in the family is essential. Other areas for assessment include family boundaries (i.e., flexibility and openness to others and new ideas), sense of coherence (i.e., does the family have a way of making meaning that reflects their members), patterns of communication (i.e., how and what information is exchanged and among whom), problem-solving skills, ways of responding to loss, and the extent to which families are centered primarily on parents or children.40 Family members may provide salient insights into a child’s experiences while also benefiting from a professional’s perspective on their reactions and behaviors. In addition to professionals in therapeutic roles, teachers, pediatricians, coaches, and other role models may be positioned to assist in the initial assessment process and guide parental figures to needed support.41

family therapy Families also face additional challenges in coping with grief when members with different developmental and emotional needs grieve in markedly different ways. In addition to primary grief reactions to the death of a loved one, children may have secondary grief reactions associated with their parents’

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grief, such as sadness over their parents’ preoccupation with the death and the resulting emotional absence and their increased fear of losing another attachment figure. Bereaved parents consumed by their own grief may be emotionally labile and inconsistent in their behavior and discipline, making it difficult for them to respond to their children’s needs.42 A principal goal of family therapy is to minimize the impact of parents’ grief on children. Worden identified four clinical goals used by family therapists working with grieving families: 1. 2. 3. 4.

Accept the reality of the loss. Process the pain of grief. Adjust to the world without the deceased. Find ways to remember the deceased while embarking on the rest of one’s journey through life.43

Family therapists typically aim to identify the effect of previous losses on the family’s current functioning and help them understand this influence; encourage communication of feelings among members; help “the family reorganize its structure following the loss, to reassign important role functions and to restore appropriate generational boundaries;” and address “developmental tasks not accomplished because of the disruptive influence of the loss, especially the task of helping children to separate and individuate in adolescence.”44 Parental guidance methods may be used to provide emotional support to bereaved parents and to teach them about developmental issues that influence their children’s experience of grief, help them plan ways of communicating accurate information about the death and its causes, understand the child’s needs for stability and consistency, and help parents respond to their child’s behavioral changes associated with loss.45 Among the few evaluations of the effectiveness of family therapy for bereaved children, family-based programs are found to improve adjustment and reduce depression in both children and their caregivers.46 Goals of family therapy typically are to identify the impact of previous losses on the family’s current functioning, help families understand this influence, and encourage communication of feelings among members. Family therapy also helps families reestablish norms, boundaries, communication patterns, and new relationships without the deceased or absent person. In my (SS) work with a large Mormon family after a child’s death, family therapy was essential because members had different reactions to the family’s faith journey and to their relationship with the church. Family therapy provided an opportunity to learn from each other and to hear what each member needed within their religious context.

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cultural considerations in family therapy Several issues should be considered when engaging diverse populations in family-based interventions. The initial phase is especially important and often challenging when working with families of color. They may have limited knowledge of family therapy and seek it only after all traditional helpseeking attempts fail; distrust professionals who represent a society that has oppressed them and is viewed as racist; regard seeking help from outsiders to be antithetical to their cultural values; view “talk” therapy as incongruent with cultural norms; or worry about the lack of financial resources to justify family-based therapy. Therapists need knowledge, skills, and values to build trust and address these concerns. They must accommodate variations in communication preferences, explain the role of a therapist, agree on expectations for the relationship and norms regarding privacy, and identify, acknowledge, and validate family strengths throughout the process. Further research on family therapy in different racial, ethnic, and cultural contexts is critical.

School-Based Interventions Schools are a critical setting for grief interventions. Children’s losses, whether in (e.g., school shootings) or out of school (e.g., a relative’s death due to the coronavirus), may hurt their academic performance. School social workers are often frontline professionals in assessment and intervention regarding grief reactions that create challenges for students’ interactions with teachers, peers, and academic achievement. They most frequently provide individual, group, and family counseling; referrals for more intensive services; education; and some play therapy.47 For example, grief associated with relocation loss following immigration, moves, or divorce can be addressed through practical strategies by school social workers. These include introducing students to a new school through orientation groups, forming peer support systems, helping students maintain contact with their former schools and communities, and working with teachers and parents to broaden their understanding of the children and how their losses affect their adjustment to school.48 Play or art projects may help school children express and understand their feelings. Art teachers can create ways of helping students remember a classmate who has died, such as making memory books, drawings, collages, or paintings. School personnel are somewhat limited in how closely involved they can be with a child’s personal problems. In many instances, the best way to promote children’s healthy coping is to ensure that the adults around them are coping effectively.49 This suggests that a child requiring intensive psychotherapeutic intervention, for instance, should be referred outside the

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school. A school-based professional does not have the resources and skills of a therapist who can work with the entire family system. More evaluations of the effectiveness of school-based interventions are needed, however.

Interventions for Children Exposed to Specific Losses Losses Related to COVID-19 The losses associated with the coronavirus cannot be underestimated for children, with many children wondering if and when a sense of “normalcy” will return. The loss of in-person learning and of peer and teaching interaction is adversely affecting children’s emotional well-being. Multiple web-based resources, such as through the Dougy Center, are available to parents and other caregivers to address children’s grief. The American Academy of Children and Adolescent Psychiatry published a list of suggestions for families.50 • • • • • • • • •

Ensure children know they are able to ask questions about the virus. Provide honest answers to children’s questions. Use age-appropriate language when answering questions. Provide children, depending on age, strategies for finding accurate information about the virus. Respond to children’s emotions and feelings. Ensure children know they are safe and steps are being taken to keep the family safe from the virus. Do not make promises or guarantees that may not be kept. Model positive behaviors for addressing the pandemic. Be aware of frightening information or imagery on social media or television.

Death of a Pet The strong attachments children have to their pets often lead to intense grief when pets die. Family members can help children grieve a pet’s death and learn how to face future losses based on this experience. The books listed in the text box that address the death of pets may help children understand and talk about this loss. Many websites provide tips to help children grieving a pet, with the American Society for the Prevention of Cruelty to Animals and local Humane Societies offering pet loss tip hot lines. Some strategies mirror suggestions for grieving other losses. 1. Adapt rituals from those used for human death and suggest that children create their own versions (e.g., formal burial, candle-lighting ceremony, a story written about the pet).

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2. Encourage children to participate in ceremonies and allow them to choose the ways in which they want to be involved. 3. Teach and encourage mourning by providing models for expressing feelings. 4. Help children choose appropriate mementos and photos for a memory box or other special creation. 5. Do not replace the animal too quickly; allow the child time to grieve.51

Responding to Traumatic Events Children exposed to traumatic events, such as witnessing a murder, other forms of violence, or catastrophic disasters, may have strong emotional and psychological reactions. Unless children themselves are the victims of physical or sexual abuse, their psychological and emotional needs and associated grief may go unnoticed or untreated as awareness of the secondary trauma is not known. Traumatic experiences are associated with PTSD, depressive disorder, separation anxiety disorder, and complicated bereavement (see chapter 2). This trauma, if not addressed, may create challenges throughout the life course.52 Death from natural causes and various other childhood losses also may result in traumatic grief, especially “if the child’s subjective experience of the death [loss] is traumatic and trauma symptoms interfere with grieving.”53 The nature of these experiences complicates the treatment and recovery process and necessitates attention to the details and effects of the trauma,54 which may in some cases be different from the grief response itself. Interventions that fail to attend to trauma by focusing only on children’s grief may create greater difficulties, particularly as these children move into adolescence.55

Children Exposed to a Parent’s Homicide For survivors, homicide is often the most distressing form of violent death. Children have both an immediate need for support following a relative’s or friend’s murder and long-term needs to resolve separation distress and trauma.56 Teachers play an important role in identifying children who are having intense symptoms associated with a homicide, such as phobic behaviors, insomnia, fears for safety, nightmares, irritability, and isolation, which warrant increased mental health evaluation.57 Various interventions may be used for children traumatized by a parent’s murder, including the following approaches: • Play therapy using symbolic communication techniques (e.g., expressive arts, games, and photographs, writing and journaling).

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• Cognitive-behavioral techniques such as role modeling and observational learning of appropriate behaviors by behavior rehearsal in groups. • Social skills training in peer groups, open discussion of trauma through symbolic play, fantasy, art, and storytelling, as well as meetings with both the child and caregivers to enhance understanding and communication among family members. • Community supports, such as education and support groups for parents and big brother/big sister and other mentoring programs.

community-level interventions A public mental health approach to address the complex needs of children suffering because of natural disaster, violence, and traumatic events calls for collaborative assessment and intervention on three levels of organizations: (1) governmental and social, educational, health, and mental health institutions; (2) school community; and (3) intervention teams. A clinical triage protocol for any disaster or violent event includes an assessment of children’s trauma and loss (objective and subjective), acute difficulties, ongoing adversities, traumatic reminders, and current levels of distress. Collection of this information through screening interviews may help agencies allocate resources for survivors and help clinical intervention teams identify the most vulnerable populations.58 School and community interventions with children experiencing traumatic grief must consider culturally disparate views of death; attitudes toward mental health and police response and intervention; styles of approaching a goal; issues of power, authority and racism; views of outsiders; and perspectives on victimization. In one study of African American children, 98 percent had experienced or witnessed an act of violence.59 This suggests that the intervention strategy must take account of the larger community-wide impact of trauma. During the coronavirus pandemic, closures of businesses, schools, and parks created losses for all age groups, but these losses were particularly acute among the most vulnerable children, including those in Black and Brown communities and those who live in poverty and lack access to much needed services offered through schools and other institutions. Children experienced numerous losses in education, socialization, security, continuity of schedules and activities, and in the worst cases, a family member’s illness or death.60 Systems came together to support children during this time, including online learning even for two- and three-year-olds, club sporting activities in virtual

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settings, and counseling and support groups via Zoom. Although these interventions did not specifically target grief, they created a supportive community to counter children’s social isolation, anxiety, sadness and fear and address their multiple losses.

Abused Children There is an extensive literature on child maltreatment and the effects of long-term abuse on children. There is also considerable knowledge about the impact of trauma and factors leading to resiliency in children. What continues to be missing, however, is how abuse is linked to loss and grief. Children who are removed from their families lose everything from possessions to friends, to schooling, to sibling relationships. They are often bounced from one home to another, which creates loss of stability in their lives. Social workers immediately focus on the children’s safety and ultimately reunification with their family system, but addressing feelings of loss is an area that should be explored in greater detail. It is the loss experienced by children that often places them in play therapy or later in therapy as adults.61 Play therapy methods are often recommended to permit children to express painful emotions, but play therapy focused on losses faced by abused children have rarely been explored. These and other modalities, such as cognitive-behavioral interventions, are shown to be effective in treating a variety of symptoms and problems among abused children, and their effectiveness deserves further clinical study.62 Several steps are often followed in play therapy with abused children: 1. Rapport is built with children by creating an atmosphere of safety and trust, providing a tour of the therapy room and the available toy props and tools, allowing children choices in their play activities, answering questions clearly, being attentive to physical distance, and making few demands. 2. A context for therapy is set by discussing with parents, when available, what children should be told to expect, clarifying what a child understands, and informing parents about how they might be involved as needed. 3. Assessment includes interviewing the child and his or her family and caregivers and collecting data through both observation and assessment instruments suited to each situation. 4. Initial goals are set that may offer opportunities for mastery and control, provide a safe environment that fosters feelings of trust and well-being, and identify, address, and achieve closure from the trauma.63

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It is important to select appropriate toys so the child is not over- or understimulated. Five main categories of toys can be found in the toy room: • Scary toys (e.g., snakes, rats, plastic monsters, dragons, dinosaurs, alligators) • Family and nurturing toys (e.g., doll houses, doll families, baby dolls, stuffed toys, rocking chairs) • Aggressive toys (e.g., punching bags, plastic or rubber knives, tools for pounding such as mallets or hammers, toy soldiers, foam rubber bats) • Expressive toys (e.g., art supplies, pipe cleaners, egg cartons, newsprint, play dough) • Pretend or fantasy toys (e.g., masks, hats, jewelry, purses, doctor kits, puppet theaters, sandboxes, dress-up clothes)64 Toy telephones, sunglasses, feeling cards, stuffed animals, sand trays and sand miniatures, art materials, nursing bottles, dishes and utensils, medical kits, shields, capes, plastic swords, courtroom replicas, doll houses, miniature family members and animal families, and superheroes and war figures are most commonly used in play therapy with children who have been abused. Although specific types of activities used by play therapists are beyond this chapter’s scope, play therapy training is often available in communities and offers professionals comprehensive detailed information. Group models help children who are in care find a safe place to explore their emotions, develop social skills, and cope with personal regulation and self-esteem.65 These group interventions are psychoeducational in nature and involve play, art, and other hands-on activities to help with child engagement. Some grief centers provide groups for children who have been abused.

Children in Foster Care and Adoption As described in chapter 4, children in foster care have generally been exposed to abuse, neglect, or maltreatment; been separated from their family of origin; and have experienced uncertainty and chronic loss.66 Children of color may have experienced additional adversities that arise from racism within their communities and the systems designed to assist them. Grief is inherent to the foster care system for both children who have experienced multiple losses and foster families when children with whom they have bonded leave and they adjust to changes in their family without that child.67 Children in foster care experience grief rooted in ambiguous loss as well as disenfranchised grief that is not acknowledged.68 Assessment and intervention must take these aspects of a child’s experience into account when evaluating the child’s ability to adjust to life in a foster home. Worden’s task model of grief

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and other online resources may help in understanding the grief process of children in the foster care system.69 Interventions for foster families can occur in a variety of settings. For example, school social workers can identify and treat traumatic losses experienced by children who enter foster care.70 Innovations in child welfare and other community-based family services are needed to evaluate culturally appropriate interventions for both children in foster care and their birth and foster families. As new interventions to address grief are developed, they need to be empirically tested. Another aspect of the foster care system rooted in loss is when children transition from hoping to return to their families of origin to recognizing that they may be eligible for adoption. Adoption, from beginning to end, regardless of how successful the placement, entails numerous losses for a child and, in many cases, for the adoptive parents.71 If adoption occurs because the biological parent is unable to raise the child, the child may have unanswered questions about the “why” and the “what if” that will never be answered. If the adoption is because of a parent’s inability to make the necessary changes for their child to return, grief may emerge in anger, confusion, and questioning of what the child did to cause the situation. For children who are part of closed adoptions, additional losses linger, such as lack of knowledge about one’s parents, siblings, and even the circumstances that led to the adoption. Issues salient to international adoption versus domestic adoption differ, but there are some commonalities in the experiences for both parents and children. Fortunately, many adoptive parents feel a sense of community with others navigating similar losses. As a parent of adopted children, I (SS) have experienced ambiguous losses that occur when the answers to the “why” cannot be found. My daughter Josephine, who was internationally adopted, will cry, even at age twelve, for her biological mother whom she never met. She questions why her mom “didn’t want her,” asks if her mother is still alive or if she has siblings, and has never stopped hoping that she may be able to find her if we go to China. To help Josephine through her grief, I have her draw portraits of what her mother may look like, focusing on her own qualities that she thinks her mother may have. We have also developed a box for her questions, concerns, and feelings that we open and explore together as a family. Josephine also has a “special things box” of mementos and facts about her adoption that she can look at and discuss when she has questions. She has worked with a play therapist to help with her grief and how to manage the complexity of the “whys” so she can cope with this loss as she transitions into adulthood.

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Summary In this chapter, we presented developmentally congruent interventions that may be used with bereaved children, including communication techniques, rituals, play and play therapy, and group-, family-, and school-based interventions. These interventions appear to be helpful to children, but only a few have been systematically evaluated in treatment outcome studies. There is some evidence that bereavement support groups, psychotherapeutic group interventions, and family-based interventions may help bereaved children. But these studies are in their infancy, and their inconsistent study methodologies, samples, and intervention protocols limit drawing conclusions. Many forms of loss may be experienced in childhood, but most empirical attention has been given to group- and family-based interventions for children who have experienced a death in the family. We have offered practice principles and strategies for specific interventions (e.g., play therapy, rituals) and for specific losses (e.g., a pet’s death, traumatic events, loss of peer socialization due to the COVID pandemic, foster care, and child abuse). Nevertheless, relatively little is known about which strategies are the most efficacious and with which populations. There are few studies regarding the cultural congruence of interventions and variation in outcomes by race and ethnicity. Culturally appropriate interventions for school social workers, child welfare workers, and other human service professionals to address grief associated with childhood violence and trauma are urgently needed. In the future, interventions will be needed for children experiencing longer-term loss and grief from the dual pandemic of the coronavirus and racial injustice

6 Loss and Grief in Adolescence

 Adolescence is a time of paradox. To establish emotional connections with others and work collectively, adolescents must achieve individuation and separate themselves emotionally from their parents. Teenagers’ struggles with parents, teachers, other authority figures, and peers represent their efforts to gain a sense of autonomy, personal identity, and competence.1 Adolescents are seeking answers to who they are and what they believe. Grief is also a time of paradox; bereaved individuals generally must express anger, resentment, and ambivalence before they can reconnect with others and find meaning. Given teenagers’ paradoxical developmental tasks, it is not surprising that their grieving process is complex. In this chapter, we review developmental considerations of adolescents roughly ages eleven through twenty-two. Although the term teenager is used interchangeably with adolescent, adolescence extends beyond the teenage years.2 We discuss losses associated with a parent’s death or divorce/separation; the death of a sibling or a friend, especially from suicide, violence, or substance abuse; and prenatal and perinatal deaths. Cultural, societal, and economic factors affect how adolescents accomplish essential developmental tasks such as establishing a stable sense of personal identity.3 In non-Western cultures, distinctive rites often mark the transition to adolescence, for example, bar or bat mitzvahs for Jewish teens, but Western cultures lack similar rites of passage, which may contribute to the turbulence and confusion of the teenage years. Background characteristics and individual capacities related to resilience are at the forefront during adolescence, but positive social, family, community, and cultural capacities also are protective factors to ensure a successful transition to young adulthood. These protective supports are critical when adolescents confront the loneliness and unpredictability of grief. 141

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Extensive use by adolescents of the internet, particularly social media, as an information and support resource may aid their grieving, but social media can be a negative force in some situations. At the time of the first edition, teens typically communicated via email or phone calls, whereas today new social networking application increases adolescents’ needs to be connected and to be seen by others.4 As noted by Worden, positive uses of the internet through cyber mourning resources—online memorials, internet bereavement support groups, and peer-support webpages—can create community for bereaved teens and aid their grieving, although misinformation may also be communicated.5 A recent negative aspect of social media is cyberbullying, a prevalent form of interpersonal aggression intended to cause harm in repetitive and hostile ways. Text messages or audios with insults, threats, or embarrassing photos and videos are harmful, and educators and parents are often the last to learn about this abuse. Victims typically cannot respond directly, and these assaults can occur at any time and without circumscribed space. Cyberbullying is potentially more harmful than in-person school bullying, and it creates risks to mental health that may result in depression, social isolation, anxiety, or suicidal ideation.6 Although research is limited, risks to well-being appear to be greater for teens experiencing marginalization, such as LGBTQ adolescents, and those made more vulnerable by loss, particularly in light of normal adolescent developmental tasks.

Developmental Considerations Individuation and a search for personal identity are primary developmental tasks for teenagers. However, Erikson’s stage model does not take account of differences by race, gender, or sexual orientation. Erikson’s tasks of individuation were based on samples only of white males,7 whereas girls as well as adolescents in many non-Western cultures often see themselves in relation to others rather than as individuals. We recognize that gender and cultural differences can profoundly influence adolescent grief, but our discussion is based largely on available research that focuses on individuation. We encourage readers to be sensitive in their practice to differences by gender, social class, culture, race, disability, sexual orientation and gender identity. For example, development of racial identity is an important milestone in meaning-making for youth of color, particularly for African Americans’ psychosocial (e.g., selfesteem), academic, and health outcomes. Moreover, adolescence is typically marked by increased group consciousness as Black youth make meaning of

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their racial experiences relative to the experiences of others.8 LGBTQ youth face distinctive challenges as they come out to others or transition, particularly if they lack family and community supports. Regardless of differences in background characteristics, coping with death is not a normative life transition for adolescents; it is unexpected and off-time. The unpredictability of an untimely loss may cause anxiety and fearfulness in adolescents who are seeking mastery and security in their life.9 Within Erikson’s overarching task of identity versus role confusion, adolescents also need to: • Develop a stable self-concept, including racial identity and sexual orientation/gender identity. • Separate from their family. • Form appropriate and satisfying relationships with peers and develop intimate relationships. • Begin to formulate future career goals.10 During this process of separation, peers assume more importance than perhaps at any other stage of life.11 Grieving may create a double crisis in which situational considerations overlay and, to some extent, may parallel normal developmental challenges. For bereaved adolescents, grief involving protest/searching and disorganization/reorganization is often intertwined with common developmental tasks. A loved one’s death often means that adolescents have to redefine their identity and roles.12 Adults may want adolescents to express “what is going on,” but teenagers may not be able to articulate the depth and vastness of their emotions. It may be unclear which aspects of adolescent grieving emerge from developmental challenges and which are primarily from bereavement.13 It is clear, however, that the “normal” developmental tasks, which are inherently difficult, become even more so when teens are confronted with a major loss.14

Early Adolescence: Ages Eleven Through Fourteen With the onset of puberty, adolescents begin the shift from concrete operational thinking to formal operational or logical thinking. At the same time, they are grappling with the onset of biological sexuality (“raging hormones”), physical growth, and numerous psychosocial and emotional tasks. A primary psychosocial challenge is resolving conflicts between individuation and safety: separating emotionally and physically from family and joining a peer group, experimenting with adult behaviors, and expanding their geographic territory.15 Western society’s emphasis on autonomy from family differs from

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the focus of many other cultures. In Asian and Latinx cultures, families and community are traditionally central concerns and are more important than individual autonomy, and this focus influences the nature and intensity of the developmental challenge for adolescents. Early adolescence among white Americans is characterized by ambivalent expressions of dependence and independence.16 This ambivalence often produces an unpredictable mix of new and powerful emotions and behaviors; these may include refusing to participate in family outings and wanting to be “cool” and hang out with friends, but later expressing love for family, or screaming at a parent in response to discipline and being absorbed in instant messaging or social media and then hugging a parent—perhaps all within an hour. This rapidly fluctuating and tumultuous behavior reflects the fears and feelings of being overwhelmed by changes and represents the work of forging an identity while maturing incrementally.17 As adolescents begin to form their personal identity, they may regress to an earlier, more comfortable developmental stage temporarily. They also may look to people outside their immediate families for intellectual ideas and as models of behavior. Research on the brain has identified physiological causes for some of these inexplicably intense emotional outbursts. The prefrontal cortex is the most advanced part of the brain; it is where our most sophisticated abilities reside. It controls emotions, restrains impulses, and makes rational decisions, but this part of the brain is not fully developed until age twenty.18 Increased dopamine released to the subcortical center also encourages attraction to novel, immediately exciting experiences, resulting in impulsivity, risk-taking, and sensation-seeking (e.g., drug use, speeding while driving), alternating with the rigidity of rules and safety characteristic of childhood.19 Young adolescents who alternate between expressing love and hatred toward parents or other adult caregivers are, to a certain extent, unable to control their emotions. Both families and professionals can benefit from learning more about how structural changes in teenagers’ brains may affect their grieving process. Another critical developmental task is to integrate a unique self-identity and self-definition. Emerging sexuality, a desire for self-determination and independence, and development of cognitive abilities and ethical awareness enable adolescents to see who they are and who they might be for the first time.20 Even though adolescents’ sense of the future is sharpened, it rarely includes imagining loved one’s deaths. Instead, adolescents tend to view themselves as immortal, a belief that results in risk-seeking behavior, which is reflected in the higher motor vehicle accident rates for this group than for other age groups.

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Middle Adolescence: Ages Fifteen Through Seventeen Middle adolescents begin to integrate their early experiences of separating from parents, continue to experiment with “possible selves” or alternative self-concepts, and begin to forge a distinctive, mature identity. In some ways, they undergo a second separation process, fluctuating between independence and dependence to achieve competence, mastery, and control. The coronavirus pandemic disrupted this separation process for many teenagers, as they found themselves isolated at home and having more family time than is normative or necessarily desirable for their development. The internet became their only means of social connection outside the confines of “sheltering in place” or “social distancing.,” which may have long-term consequences for their social development. Additionally, virtual learning and lack of peer interaction are having negative academic and mental health consequences. Teenagers are resourceful in reorganizing values internalized from their parents; overcoming the egocentrism of childhood and early adolescence; deciding on future roles, responsibilities, and goals; and making long-term commitments to people.21 Middle adolescents’ advanced cognitive abilities enable them to take ideas apart and put them back together in new ways, examine both possibilities and realities, and build entire systems of thought as they question and argue with peers and authority figures. Finally, as adolescents’ cognitive abilities develop, so does their moral awareness.

Late Adolescence: Ages Eighteen to Twenty-Two Late adolescence marks the closure of the second individuation process and a shift toward independent thinking, principled reasoning, and awareness of one’s own value and legitimation. Another task for many older adolescents is the attainment of personal strength by dealing successfully with traumatic life events, such as a peer’s suicide.22 This typically requires grappling with the meaning of life and death, and many adolescents emerge with a philosophical and spiritual/religious stance that promotes optimism about the future and a reason to continue living. When adolescents engage in high-risk behavior, they still value life and want to live life to the fullest. Achieving intimacy and commitment in sexual and social relations, which involve conflicts between closeness and distance, is another challenge of late adolescence.23 Although Western culture does not clearly acknowledge the end of adolescence, separation from home and financial independence often mark the shift to emerging or young adulthood. Independence is more difficult to attain today, and a growing number of late adolescents and young

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adults are unable to move out of their family’s home because of high rates of unemployment and increased educational expenses, often compounded by the coronavirus pandemic. Some young adults remain adolescents developmentally; they are ambivalent about accepting responsibility, forging a separate identity, or sustaining interpersonal intimacy.24 Others are affected by earlier traumatic events, substance abuse, or eating disorders that interfere with their later emotional development.25 The stages of adolescent development and the tasks and conflicts associated with each suggest some issues that bereaved adolescents must address cognitively, affectively, and behaviorally: 1. 2. 3. 4. 5.

Trusting the predictability of events. Gaining a sense of mastery and control. Forging relationships marked by belonging. Believing the world is fair and just. Developing a confident self-image.26

This model is a useful referent for our later discussion of different types of adolescent loss.

Adolescents’ Grief Adolescents’ grief is typically manifested as confusion, crying, feelings of emptiness or loneliness, sleep and eating disturbances, and exhaustion. Because of their egocentrism, adolescents are likely to think their grief is unique and incomprehensible to both themselves and others. As a result, they may express their grief only in short outbursts or try to suppress it to avoid being perceived as emotionally out of control. However, attempts to mask their grief through anger may distance teens from others who are grieving.27 The adolescent grief process usually does not mirror adult mourning but more closely resembles behaviors of late childhood. Adolescent bereavement tends to be simultaneously continuous and intermittent throughout an extended process, and it encompasses secondary losses. Complicated grief may occur if an adolescent has ambivalent relationships with the deceased or other survivors or idealizes the deceased, or if society does not acknowledge the relationship and resultant grief (e.g., the disenfranchised grief of some LGBTQ teens). The intense, somewhat transitory quality of adolescent feelings, their desire to fit in with peers, a lack of support from peers or adults, and traumatic deaths such as those due to violence may also complicate the grief process. Alternatively, grieving may foster resilience and have positive outcomes.28

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Resilience Most adolescents display resilience and personal growth following a major loss.29 Rather than predisposing adolescents to psychological difficulties, grief may promote emotional and interpersonal maturity; however, bereavement may be problematic for adolescents predisposed to emotional difficulties and those with prior mental health concerns.30 Adolescents generally bring the following background factors and capacities to their grief process.

background characteristics Socioeconomic status affects personal and social capacities salient to grieving. For example, low socioeconomic status accounts for long-term problems for some adolescents after their parents’ divorce. A history of psychological problems and the amount of economic stress that adolescents experienced earlier in their lives also affects how they deal with a parent’s death. Gender and race are salient background characteristics, with adolescents of color and males more likely to experience deaths of friends and family than white and female adolescents.31

personal capacities Expanded cognitive skills such as the greater ability to think abstractly, anticipate future events, construct hypotheses, and evaluate consequences affect how adolescents deal with loss, particularly when they confront the inevitability of death and the resultant lack of control.32 Although adolescents sometimes demonstrate poor problem-solving capabilities, their skills are generally better than those of children. For example, if a widowed or divorced parent is unable to manage daily household tasks, adolescents are often able to take care of themselves and younger family members, even though they may resent doing so. Self-concept is a key individual capacity in adolescent bereavement. High self-concept scores are associated with less depression, fear, loneliness, confusion, and intensity of grief; average self-concept scores are linked with more depression, loneliness, and anger; and low self-concept scores are associated with more confusion. In general, a positive view of self (e.g., high self-confidence, self-esteem, and self-efficacy) positively influences bereaved adolescents’ resilience.33 Similarly, developmental maturity is associated with greater but relatively transient psychological distress.34 Most teens are struggling to resolve self-esteem and identity issues associated with gender, racial and ethnic identity, and sexual orientation. Girls are especially vulnerable to

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a loss of self-esteem as they enter adolescence, and a major loss can interfere with their efforts to achieve self-esteem. Confronting questions about life and death, some adolescents are able to draw on religiosity and spirituality, especially when these beliefs are central to their identity development, sense of meaning, and quality of interpersonal relationships. This connection also provides opportunities for strong community bonds.35 The majority of adolescents believe in God or pray, and many also attend weekly religious services.36 Spiritual beliefs and practices can decrease depressive symptoms and school misbehavior and promote academic achievement, healthy behaviors, higher self-esteem, self-worth, and feelings of hope, love, and purpose, providing greater life satisfaction and well-being overall. Strong religious beliefs may also protect against involvement in high-risk behaviors such as substance abuse.37 Another critical dimension of religiosity and spirituality is the facilitation of meaning-making when bereaved teens wrestle with existential questions about the meaning or absurdity of life. Sibling death, in particular, is often a catalyst for spiritual development.38 Participation in a religious community fosters social integration and support, which are central to resilience. Given the protective benefits of religious or spiritual coping, professionals working with bereaved adolescents should address their belief systems. However, a loved one’s death may cause a long-term crisis in faith.39

social capacities How adults act toward adolescents affects their ability to complete necessary developmental challenges, and it also affects how adolescents grieve. Family, community, and cultural capacities differ in the degree of positive and respectful social supports adolescences can access. Mentors can provide constructive learning experiences for mastering adult tasks and achieving personal goals. Unfortunately, adolescents’ erratic and often aversive behavior may result in adults, especially parents, withdrawing from them. Parents who are exhausted by grief may temporarily “give up” on their adolescents when they most need positive social supports and structures. Without positive supports, painful life changes are less likely to lead to growth and resilience. When a family member dies, a strong relationship with at least one parent functioning at a relatively high level, positive relationships with siblings, family coherence and adaptation, and low levels of family conflict can help teens express their grief and reduce the likelihood of depression. In some instances, it may be adaptive for adolescents to distance themselves from their

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grieving family temporarily, but having a relatively stable cohesive family and supportive home environment to return to is important.40 The ability of adolescents to talk with friends and receive peer support is often more important than family support in determining the outcome of adolescents’ bereavement process. Schools and peer groups that foster a sense of belonging are vital sources of support, especially when teens withdraw from family or their preoccupied parents are unable to assist them.41 However, peers are not always a source of emotional support; some may be uncomfortable with their friend’s anguish and painful feelings and not know what to say or do. This can leave a teen feeling isolated from past sources of support and needing to seek new friendships to attain a sense of belonging.42 As noted by David Balk and Charles Corr, many people figuratively and literally leave the room when grief enters, which is often the case with adolescents.43Teachers, counselors, and religious figures may be able to offset erratic or inadequate parenting and friends’ withdrawal or silence.

LGBTQ Adolescents and Loss Given the critical developmental issues of establishing identity and the peer group’s central role in adolescence, LGBTQ youth, particularly those of color, who struggle with feelings of difference may experience disenfranchised grief, especially during the coming out or transition processes. Even while embracing their sexuality as self-awareness of who they are and having increasingly positive role models in the media, teens may nevertheless grieve the loss of being part of a heteronormative social structure, losing relationships they thought they had with friends and loved ones, and having to reassess how they think about their future. In some parts of the country, families, religious communities, and school settings are not supportive of LGTBQ youth as they deal with their identity and non-normative lifestyle; they may face outright hostility and hatred, particularly in the current political climate. If they feel they must keep their identity secret because it will not be supported and valued, this self-silencing can in itself be a form of loss.44 Even when community and family supports exist, some LGBTQ adolescents experience two types of stress: fear of hurting their loved ones and limited resources to support them.45 Grief is conceptualized as a socially directed issue for LGBTQ youth because the cyclical outcomes of social rejection born and reinforced from cultural constructions create a climate that can lead to and perpetuate higher rates of derogatory homophobic language, harassment, bullying, and assaults toward them.46 Social rejection is especially painful for transgender teenagers.

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In 2014, Leelah Alcorn found this rejection intolerable and committed suicide, leaving a note attributing her action to her parents’ hostility and conversion therapies.47 Given these structural stressors combined with limited family and community support, it is not surprising that LGBTQ youth often experience higher rates of depression, suicide, and homelessness than straight youth. In fact, LGBT youth have two to six times higher rates of reported suicide attempts than their straight peers.48 Marriage equality and greater public acceptance of LGBTQ youth in many parts of the country, including gaystraight alliances in middle and high schools, have reduced the alienation, depression, and violence faced by LGBTQ teens. For many teens, embracing their sexuality is a process of transcendence, resilience, and empowerment, particularly if they reframe their identity-related challenges in meaningful, resilience-building ways.49

Death of a Parent About 4 percent of adolescents in the United States experience a parent’s death before the age of eighteen.50 A parent’s death is one of the most stressful events for an adolescent, and the risk of depression and PTSD increases in the first year and persists into the second year after the death.51 Most adolescents show good long-term adaptation to a parent’s death, including emotional strength, personal growth, and increased appreciation of life and of others.52 However, some are vulnerable to developing depression, particularly when faced with future losses.53 In the short term, however, a parent’s death interrupts normal developmental tasks, and adolescents may suffer from numerous negative effects: disrupted sleep, anger, irritability, academic and behavioral problems, and low self-esteem.54 A primary developmental task is rejecting parental ties based on relationships of dependence and revising them based on a more equal relationship. A parent’s death dramatically disrupts this process of emotional emancipation and can create feelings of chaos and uncertainty. A parent’s death, particularly if unanticipated and sudden, makes separation and individuation final and irreversible, and bereaved adolescents may feel unsafe, vulnerable, and abandoned.55 The family structure, financial security, and future plans are disrupted by a parent’s death, intensifying adolescents’ worries about how their family will function. These changes may be magnified by the surviving parent’s poor parenting, mental health problems, or low socioeconomic status.56 For all of these reasons, a parent’s death may reverberate with negative ripple effects

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across the life course.57 In fact, the death of one or both parents increases the risk of suicide during adolescence and later in life, even when a parent did not commit suicide.58 Teenagers also struggle with existential life issues that are central to their identity development: “Why me?” or “Why do bad things happen to good people?” Feeling that life is unfair, teens may display anger in their search for meaning.59 In addition, rejecting parental controls is a normal part of separation for adolescents, but when a parent dies, they need to gain more control just when their emotions appear to be running away from them. Teens need the stability of having a parent to return to periodically during this time, and death ends that stability. A parent’s death may represent the ultimate unpredictability for adolescents, which may result in a “wish to die.”60 They may test their own mortality through risk-taking behaviors including suicidal ideation and attempted suicide, or they may “protest” the death by withdrawing emotionally and not talking about it.61 Early adolescents have difficulty managing their emotions regarding their parent’s death, and they tend to be more frightened and overwhelmed than later adolescents.62 If grieving younger adolescents regress to earlier behavior, the developmental task of separation from parents may be slowed. Teenagers’ need to withdraw their emotional investment in their parents often conflicts with the family’s needs for emotional closeness and support as the family confronts a loss. Early adolescents tend to assert their need for privacy, avoid disturbing information and feelings, and have an egocentric worldview. Their wish to deny painful feelings may be exhibited as an adamant optimism that everything will be all right, even when their reality has been shattered by a parent’s death. Or they may attempt to mask their grief through anger.63 Early adolescents’ emotions tend to become displaced to other situations, such as being more upset over a low grade or peer rejection than over their parent’s absence. Because they understand the permanence of death and, to some degree, its impact on their future, they may develop profound sadness, sleep and appetite problems, and difficulty concentrating.64 Older adolescents typically mourn in a more adult manner and are better able to see death from another’s perspective, not just their own. They are generally able to empathize with the surviving parent and siblings, although this sensitivity to others’ needs fluctuates with egocentric thinking. Some late adolescents may develop deeper, more intimate peer relationships and consider existential questions with greater seriousness, having learned what is really important in life. Late adolescents may consider themselves more mature than their peers, although this may be compensatory behavior.

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If an older adolescent is unable to complete separating from the family, normal tasks such as planning for employment or additional education may be delayed. Moreover, developmental goals may be interrupted for teenagers who are fearful about the future and feel a need to protect and care for the surviving parent or siblings. Even if teens do not become surrogate parents, they still must renegotiate a new relationship with the surviving parent and siblings. In doing so, they may displace their anger and sadness onto the single parent.65 Factors promoting resilience after a parent’s death are an adolescent’s internal locus of control, problem-solving skills, self-esteem and self-efficacy, and a continuing relationship with the surviving parent.66 Family, community, and cultural capacities also determine an effective grieving process, even though teens may try to push them away. If people in these social networks do not understand teens’ developmental tasks, they are less likely to support their distinctive expressions of grief, help them construct a positive memory of the absent parent, and reconfigure family relationships. Simply hanging out with their peers can be a source of comfort, although peers may be unable or unwilling to discuss the parent’s death.67 The sense of difference created by a parent’s death can create isolation, even though adolescents long for their friends’ support. Support from peers, teachers, and coaches is less available with virtual learning during the coronavirus pandemic.

Death of a Sibling A sibling’s death is devastating at any age, but it may be felt more deeply during adolescence when it is an off-time, out of sequence, atypical life event.68 Most adolescents shared childhood experiences with their siblings and have a strong bond, although they may grow apart during the teenage years.69 In the United States, the impact of a sibling’s death tends to be underestimated by family and friends, and the support systems usually focus on the bereaved parents. When adolescents do not receive recognition and support after a sibling’s death, they may experience “silencing” and “outsiderness.”70 Relatively little research has focused on the consequences for teenagers of a sibling’s death, even though adolescence is a particularly difficult time to grieve a death.71 Shadows caused by a sibling’s death generally linger because of lost opportunities to experience significant milestones, celebrate successes, and grow old together; bereaved teens typically deeply miss their siblings throughout their lives.72 The deceased sibling may have been a best friend, a companion and confidant, the vital link in the family, a role model, or even a surrogate

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parent. Adolescents may have relied on the deceased sibling to provide structure and purpose in their own life. For others, seeking to be different from a sibling may have been central to their self-identity. Regardless of the particular role configuration, the unique relationship between siblings can never be replaced, even when parents conceive or adopt other children or surviving children later have their own children. Confronted with the stark reality that a life has ended, often abruptly, adolescents face unanticipated and profound questions of meaning.73 Finding ways to integrate this loss into their lives is critical. The closer the sibling relationship—the more their life space was shared— the greater the grieving sibling’s stress and loss of identity, increasing the risk of long-term negative outcomes on self-image, school performance, earnings capacity, risk-taking, sexual behavior, and physical aggression.74 Bereaved siblings may feel loneliness, alienation, denial, and confusion combined with anger, detachment, resentment, powerlessness, and rivalry. Moreover, they display significantly higher rates of depression, confusion, guilt, fear, anger, anxiety, and substance use in the short term when compared to control group siblings, even after adjusting for preexisting mental disorders.75 Younger adolescents tend to develop somatic illnesses, headaches, or health problems, whereas older adolescents are more likely to struggle with depression and anxiety.76 Their grief also is affected by the way in which their sibling died (e.g., anticipated or sudden death), the family’s life stage and quality of relationships, and the adolescent’s sense of self. Traumatic deaths, such as homicide, suicide, and natural disasters, have the most negative impact on surviving siblings. Developmental issues form a background against which adolescents try to make sense of their sibling’s death. Teens usually lack the life experience to know they can survive this loss and the capacity to do so on their own.77 To engage in meaning-making typically requires that parents remain central sources of social and emotional support.78 Yet because of disruptions to the family system and their parents’ prolonged grief, surviving teen’s sense of family security, coherence, and routines may be negatively impacted. Bereaved parents, especially those physically exhausted by caring for a sick child or whose child died violently, may be emotionally depleted. Parents may need time alone and withdraw, lacking the energy to process the loss with the surviving children when those children need even more emotional support. These conflicting needs can result in teens feeling abandoned, alone, and confused, which may persist over time.79 They may experience a “double loss”—losing the relationship with their dead sibling and the relationship

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with their parents.80 When a family has resilience and coherence—close personal communication and emotional attachments—each member is encouraged to contribute to the family’s collective understanding of how the whole family is affected by this loss. Under these conditions, families are mutually supportive and open to differences in one another’s grief reaction. Teens may experience enduring sadness, but their grief typically does not leave them incapacitated.81 As with other major losses, the family system’s capacity to provide full access to information and opportunities to make sense of the loss are essential. Including adolescents in events, explaining what is happening, and reassuring them about their role in the family are crucial. These communications can come from parents or other members of the family support system close to the adolescent. Nevertheless, some adolescents are reluctant to confront the pain and reflect on what their sibling’s death means to them, or they may be embarrassed about being open with their parents. Others may try to be strong, hiding their emotions to protect their parents or other siblings.82 With good intentions, some parents try to shield their adolescents from information about the death, but this can result in feelings of exclusion when teens may most want or need to be included. If death was not a comfortable topic of discussion in the family prior to an illness, that pattern may continue. When adolescents do not have open communication and accurate information, they tend to replace it with even worse imagined scenarios, perhaps feeling responsible for their sibling’s death. They may feel they can never measure up to the goodness of the deceased sibling, who is often seen as perfect, and these feelings may reverberate throughout their life.83 As with parental death, some parents place an intolerable emotional burden on surviving siblings, keeping them close and asking them to step into the role of or become like the idealized deceased sibling. This hinders the ability of surviving children to achieve the developmental task of independence. They may become “prematurely mature,” with their own grief subordinated to their increased protectiveness and responsibility for their parents’ emotional care and household help.84 If teens experience conspiracies of silence, overprotection, or exclusion and are unable to talk about their sibling’s death and its consequences, they cannot begin to construct its meaning for themselves. They may be left with feelings of emptiness and yearning, guilt for surviving and for not protecting their sibling, and anger at their parents. When this occurs, they risk “lingering grief” and unfinished business going into adulthood and beyond. Ironically, the people on whom surviving teens most need

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to depend when integrating their sibling’s death into their life are often the least emotionally equipped to address their needs. Bereavement as a “social network crisis” may be even more important for adolescents enmeshed in peer groups.85 Not wanting to be seen as different, younger adolescents are less likely to talk about their sibling’s death with their peers and are more likely to face difficulties forging relationships and achieving a sense of belonging than their older siblings. This may increase their vulnerability to psychosomatic symptoms such as headaches and stomach pains. Late adolescents are less likely to use denial but more likely to experience lower self-esteem and more psychological stress, depressive symptoms, and anger about their sibling’s death, especially if the sibling was younger.86 Social media provide ways to talk with others who have lost a sibling and to memorialize their deceased sibling through pictures and postings online, often through peer-support webpages, although such communication should ideally occur with their family.87 As is the case with parental death, when family, community, and cultural capacities support adolescent siblings’ grief in the family’s changed configuration, they may discover greater optimism, maturity, spirituality, self-worth, and a positive self-identity—all individual capacities inherent in resilience.88 Over time, most adolescents, particularly those with a positive self-concept prior to the death, respond resiliently, getting along with peers, setting life goals, and respecting their parents.89 Teens who move through their grief are able to recognize the irreversibility of the loss and the need to “get a grip” on their life. A growing sense of personal control emerges when forging an identity in a new landscape in which a deceased sibling no longer exists. These challenges may cause a shift from focusing largely on themselves to a greater awareness and appreciation of others. Teens often experience continuing bonds with their deceased sibling, which are fostered when parents model such bonds. In their search for meaning, adolescents may construct “inner representations” and have internal conversations with their deceased sibling, asking for advice, sharing family news, expressing love, and using this inner representation to guide their behavior. Some Facebook pages are set up in the deceased’s name, and writing to them can promote continuing bonds and meaning-making for adolescents.90 An ability to create this “invisible presence,” a sense of spirituality, and a belief that siblings might one day be reunited also appear to be critical to moving from vulnerability to resilience. Over time, the connection with the deceased sibling changes and capacities develop for new relationships, typically through marriage or parenthood.91

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Divorce of Parents Divorce, whether same sex or heterosexual, married or unmarried, results in multiple losses for adolescents. The family structure is disrupted, the teen’s image of the parents as a couple is destroyed, relocation may include changes in both school and home, and parents may be distracted by financial worries or be searching for new partners. Reconstituted support systems may be experienced as a permanent disruption and destruction of the family and a source of conflict for teens.92 Divorce may increase mental health problems, particularly anxiety, because most adolescents still need a sense of security in the family.93 Rivalry with their siblings for their parents’ attention may increase as well.94 Unlike the community support that typically occurs after a parent’s death, teens of divorce may feel abandoned and ignored by their parents and be embarrassed to discuss their feelings with others.95 Adolescents also lose their belief that teenagers should be the ones to leave, not their parents. With their emerging awareness of the adult world, teens may suddenly be propelled into examining their own relationships and wondering what and whom they can rely on and for how long. They also may become anxious about whether they can make and sustain close and happy future relationships.96 Even though teens may acknowledge problems in their parents’ marriage, they rarely believe their parents will separate, nor do they fully grasp what divorce will mean. When major conflict causes the divorce, neither parent may discuss the reason for separation, and the severity of conflict in the marriage tends to have the most negative impact on adaptation. Less parental involvement and more negative interactions and feelings of rejection may be experienced by teens, particularly from their father. However, in cases of severe violence or abuse, divorce may improve teens’ well-being because they are no longer living in such a conflictual environment.97 Adolescents typically become angry with their parents, especially the parent who initiated the divorce, which may intensify developmentally normative conflicts with their parents. Some teens may be drawn into loyalty conflicts that impair their development. Negative disclosures about the “other” parent, for instance, increase the risk of anxiety and depression.98 Whether teens blame themselves for such conflict, feel drawn into it, or feel unable to cope are predictors of their adjustment to divorce.99 Adolescents from divorced families are more likely to act out, be impulsive, and engage in binge drinking, excessive alcohol consumption, and tobacco and marijuana use than their counterparts from intact families—patterns that often increase as teens enter young adulthood.100

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The critical variable in family and social supports is not family structure but a parenting style characterized by warmth, affection, firmness, parental involvement and supervision, and the teen’s participation in making rules and decisions. Youth with secure attachment bonds are generally able to regulate their feelings and maintain close connections with both parents, even if parents are less emotionally available.101 As is the case with death losses, relatively positive outcomes for adolescents can occur when an engaged relationship between parent and child and effective parenting are maintained and when parents minimize their conflicted interactions so teens can remain close to both parents.102 In some instances, single parents lack the energy, time, and inner strength to maintain a consistent parenting style and to be supportive of their teen. Many single parents face structural obstacles to positive parenting, such as reduced financial resources and long hours at work. Financial difficulties along with relocation from home, community, and school are linked to poorer teenage adjustment because these changes increase family stress.103 Female-headed households are more likely than male households to experience lower income, less time to devote to the children, and smaller social networks, all of which can result in poorer outcomes and lead to adolescent aggression, dependency, and social withdrawal.104 If teens feel their parents are disengaged or unpredictable, their peer group becomes their main source of support; however, other adult role models, such as teachers or school counselors, can better offset the loss of parental engagement.105 Despite the losses inherent in divorce, over time the majority of teens adjust to their reconfigured family situation, although it may affect their own family formation and dissolution behavior longer term.106 Overall, resilient teens report constructive family interactions, lower interparental conflict, and less daily stress; however, these teens tend to be from more advantaged schools and communities than those of vulnerable adolescents.107

Death of a Peer or Friend Although approximately 90 percent of adolescents have lost a peer through death, grief associated with a friend’s death is infrequently studied and may even be discounted by others, including those who could provide professional help. As with sibling death, friends are often disenfranchised as forgotten and hidden grievers, particularly when the death is due to an accident, suicide, or substance use and thus labeled as being self-induced.108 Yet a friend’s death, particularly if traumatic, can result in more severe grief reactions and behavioral problems than death of an extended family member because peer

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friendships are a vital source of support for teens.109 Adolescents experience considerable variability in how they respond to a peer’s death, but typically there is an initial mix of shock/disbelief and anger.110 Teens can be profoundly affected by a peer’s death, even when the deceased is just an acquaintance, because their fantasies of immortality are ripped asunder when someone like them dies. Forced to confront the possibility of their own death, a peer’s death also calls into question the logic of the natural order, challenges God’s existence (if they believe in God), and violates their ideals of fairness, justice, and goodness.111 It is terrifying for adolescents to realize that someone their own age, whom they know, can die or, in the case of suicide, choose to die. They lose the innocence of their childhood and of the world they knew and trusted. A friend’s death personifies teens’ inability to predict or to control the future and interferes with the middle adolescent tasks of achieving competence, mastery, and control at a time when they have been enjoying some sense of autonomy.112 Feelings of helplessness and unreality are intensified when the relationship contains unfinished business, which is characteristic of most adolescent friendships.113 When I (SS) first started teaching a death and dying class fourteen years ago, it was unusual for students to share their feelings about peer deaths. Over the past five years, I have seen an increase in traditional age college students reporting that the most significant deaths during their adolescence were peers, and these deaths were due to suicides, gun violence, police brutality, and drug overdoses. Sadly, students now report that peer death is “normal” and that after a while “it isn’t surprising.” It is just part of growing up.

The majority of adolescent deaths are traumatic, caused by accidents, suicide, or homicide. For all three causes, poverty is a significant risk factor. Male adolescents die at higher rates than their female counterparts, with this gender disparity increasing with age, reflecting higher rates of male risk-taking behavior.114 It is not surprising that automobile accidents are the main killer of teenage boys. Firearm injuries, both intentional and unintentional, have increased in part because of the growth in school and police shootings. Among firearm deaths, approximately 60 percent are homicides, 3 percent suicides, and 4 percent unintentional (e.g., accidents).115 Boys and youth of color in urban areas are disproportionately represented in these statistics.116 Youth homicide rates in the United States are the highest among developed countries, increasing the likelihood that growing numbers of teenagers will have a friend murdered or will have witnessed violence. For each homicide victim in any given year, approximately six to ten relatives and numerous

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friends are left behind and bereaved.117 Racial and class inequities mean that certain segments of the adolescent population are at high risk of death due to community violence and homicides, particularly older teens, African American and Latinx teens, those with lower socioeconomic status, teens from single parent and nonparent households, and teens in large cities.118 In fact, African American and Latinix youth are more likely than whites to experience multiple instances of violence, a predictor of PTSD and major depressive disorders.119 But the dramatic increase in random shootings in schools and other public settings once considered safe now means that all teenagers are at greater risk of losing a friend to violence, including to police brutality.120 What seemed to happen only “in other schools or neighborhoods,” on TV, or on the internet is now starkly real and personal to all teenagers. The nature of sudden traumatic death means that adolescents often confront death without warning or time to say good-bye. Teenagers carry with them lasting emotional scars from being exposed to unanticipated and traumatic death, resulting in intrusive, distressing memories and emotions and numbed responsiveness that can disrupt their grieving. This trauma affects their worldview and capacity to learn, establish relationships, and deal with other losses. Those bereaved due to violent deaths, particularly if they perceive themselves as causing or not preventing the death, are at higher risk of social stigma, complicated grief, and mental health problems such as PTSD than are bereaved teens confronting nonviolent deaths.121 When a person witnesses a violent death, memories of the circumstances surrounding it often give rise to ongoing traumatic inner images of what happened, increasing the risk of panic and anxiety disorders, depression, and academic problems.122 As noted in chapter 2, risk factors for complicated grief are traumatic deaths, emotional closeness to the deceased, lack of preparedness, age, and sexual orientation. Moreover, these risks increase when young people die. Because girls are more likely to be emotionally connected to the deceased than are boys, they are at higher risk for complicated reactions.123 Even adolescents not directly exposed to violence are surrounded by images of violent death in the media; examples include the shootings at Virginia Tech, Parkland, or the Pulse night club; the Boston Marathon bombings; or the Norwegian terrorist attacks at a summer camp. Violent images can be found on the internet, in advertising, and in video games. The twentyfour-hour news cycle, combined with smartphones and social media, provides dramatic repeated coverage both during and after a violent event. These constant, intrusive reminders can heighten complicated grief, exaggerate the

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unreality of the loss, and increase stress and symptom severity along with an inability to accept the death.124 However, appropriate use of social media can play a positive role, sometimes facilitating supportive exchanges following major traumatic events, especially for teens unable to find help elsewhere.125 Deaths due to drug overdoses are increasing, particularly among girls and teens of color and those who live in rural or small urban areas. Largely attributable to heroin, fentanyl, and prescription opioids, these deaths negatively affect peer’s lives.126 Although alcohol and marijuana are more common than opioids, about 16 percent of adolescents have used opioids. Friends of overdose victims are likely to experience guilt and regret for not preventing such deaths, but teens may find it hard to discuss their feelings with adults, partly because of the stigma associated with substance use. Clinical, community, and school-based efforts are needed both to prevent overdose deaths and to support bereaved peers.127 Regardless of the cause of death, teenagers often have difficulty talking about a friend’s death, and they hide their anger, distress, and confusion from their parents and other adults. Guilt is common, with survivors dwelling on “if only” they had taken some action that might have prevented the death.128 Although some adolescents find religion and spirituality helpful, others may feel anger toward religious institutions, God, or a supreme being. Nevertheless, as teens ask questions and talk about a peer’s death, they are performing a spiritual task of making meaning from loss. With their peers, they may engage in rituals (lighting candles or writing poems) and personalized memorials (leaving flowers or stuffed animals where the teen died). As noted earlier, they may memorialize their friend by postings on Facebook and other social media, which becomes a place for public grieving. They can even light memorial candles online or post memorial art or photo projects on websites such as Heal Grief (www.healgrief.org). With their lives profoundly changed by a friend’s death, especially a traumatic death, teens may experience secondary losses, such as estrangement from other friends, and may have difficulty forming new intimate relationships as they enter early adulthood. Nevertheless, some teens bereaved by a peer’s death reach positive outcomes over time, gaining a deeper appreciation for life and improving their problem-solving abilities, communication skills, and emotional capacities.129

Suicide Suicide is the second leading cause of adolescent death, and most teens are likely to experience the suicide death of a peer.130 Self-harm usually begins and becomes most frequent between the ages of thirteen and fifteen, particularly

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in girls. Teen suicide rates have skyrocketed since 2007, and given the increasing rates of teen anxiety and depression due to COVID lockdowns and isolation from peers and mentors, there is concern that teen suicide rates will spike.131 Growing internet usage may be associated with increased risk of selfharm, particularly through violent methods.132 Communication channels to “cyberbully” peers have been created on the internet, and adolescents who experience cyberbullying report higher levels of depression.133 In addition, the internet may normalize self-harm by providing access to suicide content and violent imagery. LGBTQ teens appear to be a particularly high-risk group for suicides. If LGBTQ teens or their families do not accept their being gay, they face a greater prevalence of depression, anxiety, and substance abuse.134 A peer’s death by suicide is especially threatening because it is self-inflicted, often violent, and taps into the adolescent survivors’ fears about the future and their capacity to manage developmental tasks, especially achieving selfidentity. A teen’s inability to comprehend the fact of death may be increased by the unexpected, arbitrary, and violent nature of suicide and the lack of a rational explanation. By choosing suicide, the peer has implied that life is not worth living, leaving their friends with feelings of rejection, disillusionment, and perhaps embarrassment. Because suicide carries a social stigma, it can leave survivors with a legacy of shame, guilt, regret, self-blame, fear, repulsion, reproach, depression, at-risk behaviors, damaged self-image, loneliness, and of most concern, increased risk of suicide.135 Teenagers often express cognitive disorganization, a distortion of reality, and an idealization of the lost peer. They may experience powerlessness, a loss of confidence in their personal judgment, and a lack of pleasure in their own accomplishments. Emotional closeness to the person who died of suicide typically magnifies the level of grief. Surviving teens may be at risk of suicide to punish themselves, to join their friend, or because they perceive the death as heroic. Friends exposed to suicide are at higher risk for attempted suicide or suicide than those who were just acquaintances.136 Teen suicides tend to become public stories, repeated over and over, and private relationships and personal emotions often become public property. Survivors may feel ashamed and believe that others are judging them as being responsible for not preventing this tragic loss, even when they could not stop it. Teens’ guilt can be profound if they knew of the suicide plans and did not try to stop their peer.137 When I (SS) worked for the medical examiner’s department, I was called to a home where a mom had found her seventeen-year-old son lying naked on the couch with multiple cuts on his arms and legs. A shotgun used for the suicide

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was lying next to him. The mom’s greatest concern was notifying his friends before the news became public so support could be provided. When I called his best friend’s mom, it became apparent that she knew from her son that this individual was having suicidal ideations. The mom and his best friend thought it was “just a phase” and that he was seeking attention, so they ignored the warning signs. The guilt of not taking his disclosure about suicidal plans seriously became the core part of their grief journey.

In summary, grief responses to teen suicide which are intensified by a strong sense of personal failure, guilt, and lack of control tend to be prolonged and devastating, and adolescents’ emotional development may be delayed compared with their grief following other types of death. With social support and a coherent structure from family, particularly a parent, and other community and cultural institutions, teens may regain hope and refocus on the value of their own life.138

Adolescents as Bereaved Parents Some adolescents face the grief of losing a child, whether through abortion, miscarriage, stillbirth, or relinquishment of a child for adoption (adoption is discussed in chapter 8). Adolescent pregnancies carry more physical risks to mother and infant, including less and sometimes inferior prenatal care, higher rates of premature delivery, and low birth weight infants. NonHispanic Black women under age twenty experience the highest rates of perinatal loss, which is often a life-altering event for them and their families.139 Perinatal loss in adolescents differs from an adult woman’s loss because teens’ cognitive development is less mature, they may resist accessing health services and rely heavily on peers, and they depend on family for financial support.140 In addition, the progression of normal developmental milestones is jeopardized, such as graduations, proms, and future relationships, which adds a layer of complexity.141 Adolescent mothers who lose a baby often experience anxiety, depression, and sleep disturbances.142 One sample of teens described uncertainty, chaos, fear, a sense of failure, and feeling alone.143 But African American teens in one study felt supported by their mothers, grandmothers, and other Black women who had experienced perinatal loss.144 The invisibility, isolation, and lack of support from family members, boyfriends, or partners, which is inherent in most instances of abortion and miscarriage, is another form of disenfranchised grief. Others’ rationalizations that the death is “for the best” minimize the meaning of the loss for

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adolescent parents. When young women are supported in expressing their feelings, they may be able to make meaning from the death, have greater compassion toward others experiencing loss, and appreciate life more.145 Abortion is the most common pregnancy-related loss in adolescence, with relatively little attention given to its mental health consequences.146 Adolescents are experiencing hormonal changes and dealing with identity issues when faced with the decision, albeit often under stress and pressure, to terminate a pregnancy. The deliberate termination of pregnancy may magnify their sense of loss, especially if they later confront problems of infertility. They lose not only the possibility of having a child but also their innocence. Even when a woman believes that an induced abortion is the only possible course of action, she may nevertheless grieve and experience high levels of stress, guilt, confused thinking, low self-esteem, and depression.147 Although relief may be the initial surface appearance, unresolved loss from the abortion, including remorse and regret, the “what ifs” and “if onlys,” can gnaw away and resurface years later. An unresolved loss often results when others are unaware of the earlier loss or want it to remain hidden.148 Women living in communities with conservative religious values may feel especially isolated in their private grieving following an abortion. Few rituals or supports exist in Western society to deal with abortion-associated losses. In contrast, women in New Guinea who have an abortion wear a short mourning veil. In Japan, some women place a jizo (guardian deity of children) in a special place in a Buddhist temple ground. Sometimes the mother names the aborted baby and writes a message to it on a wooden prayer plaque. This ritual gives her an outlet for her love, grief, and pain.149 As many as 25 percent of teen pregnancies end in miscarriage.150 If the pregnancy is not common knowledge, adolescent parents may not even mention the loss to others. When they do, family and friends may react in a matter-of-fact manner. Others may express sympathy but feel that loss of a child early in a pregnancy is not “real” and expect teen parents to readily resume their daily life (i.e., return to school). Higher levels of grief and of complicated and chronic grief responses are associated with stillbirths. This may be in part because miscarriage is more widely recognized as a source of emotional pain (there are even sympathy cards for miscarriage). Common responses to stillbirths are self-blame, fears regarding future pregnancies, and a loss of dreams.151 Young parents are particularly vulnerable if they do not receive support or even recognition of the death from family, community, religious, or health care institutions. Grief associated with miscarriage and stillbirths is discussed further in chapter 8.

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Regardless of the nature of a child’s death, a young mother may already have identified with her role as a mother. An adolescent father’s grief is often overlooked. In addition, adolescent parents, who typically have little previous experience with major loss, cannot imagine that others have endured such pain. Teens are apt to think that they are the discoverers of deep and powerful feelings and that no one has ever loved as they have loved, increasing their vulnerability to severe emotional injury. Feeling sadness, shame, self-blame, anger, guilt, and loneliness, they often find it difficult to return to the normal world. Their grief over a child’s death will be present at some level for the rest of their life and generally will remain unacknowledged, unsupported, and feared by others, including close family members.152

Summary In Western societies, adolescence is typically a turbulent time as teens seek to distance themselves from family, try new behaviors and identities, and experiment with high-risk behaviors. LGBTQ adolescents face additional issues related to their identity and sexuality, particularly if their families and communities are not supportive. Most teenagers’ worldviews do not include the possibility of death of a parent, sibling, close friend, or child. Nonetheless, given increasing violence in our society and adolescents’ risk-seeking behaviors, most are touched by death in some way. Divorce creates loss of family security, routine, and often place. Teenagers’ bravado, moodiness, or sullenness may hide the extent to which they are experiencing the pain of loss. They may be especially vulnerable to difficulties in the grief process because they commonly withdraw from or reject many of the traditional supports of family, religious institutions, and mentors. The social capacities of family, community, and culture are critical to supporting teens through the grief process. Fortunately, as discussed in the next chapter, schools have recognized the importance of grief counseling, support groups, and crisis interventions in the aftermath of classmates’ deaths, particularly those due to suicide or violence. Grief unaddressed in adolescence will probably surface in young adulthood.

7 Interventions for Grieving Adolescents

 Adolescence can be a confusing time for all members of the family system. Already characterized by widely fluctuating emotions, grief reactions of sadness, anger, mistrust, anxiety, confusion, and withdrawal can be intensified or, in some instances, be invisible. When intense feelings manifest behaviorally in problems at school or experimentation with high-risk behaviors, guardians and professionals are often unsure whether these changes are grief-related or developmental.1 Parents, who may be facing their own grief, often struggle to discern whether their teenager needs professional intervention or is coping in age-appropriate ways. Interventions reviewed in this chapter address some of the challenges in distinguishing “normal” teen behavior from complications associated with major loss and grief. Adolescents may believe that professional assistance will not benefit them or that it jeopardizes their independence and their emotional detachment from family. Similarly, they may minimize their grief symptoms, perhaps because they are embarrassed, fearful, or have compelling reasons to hide their feelings, making it difficult to engage them verbally.2 A primary rationale for professional intervention is that treatment now can help prevent adverse reactions to multiple losses in the future.3 The opportunity to share grief reactions with a professional is essential to developing emotionally healthy coping strategies both immediately and across time. Unconditional positive regard, honesty, and empathy are essential to building trust and connection between adolescents and professionals, particularly when a parent or other adult initiates the need for treatment for a resistant teenager. A mismatch in this relationship will adversely affect teens’ trust and willingness to be open about their grief and to seek assistance in the future.4 Adolescent grief is a tangled web of emotions (see chapter 6). One of the strongest emotions is anger, and professionals need compassionate 165

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understanding of the underlying causes and functions of grief-related anger. Grieving teens may express anger or hostility because they • • • •

Feel violated or abandoned. Are afraid of carrying on alone. Are trying to mask their separation anxiety. Are trying to protect against other uncomfortable feelings (e.g., guilt, anxiety, and unworthiness). • Are assigning blame, which provides a target for these powerful feelings. • Know that something of great value has been taken from them. Validating, normalizing, and not personalizing powerful feelings are fundamental to working with bereaved adolescents. As many parents learn, meeting their teenagers’ anger with anger only serves to heighten hostility and constrain the relationship. Delaying interventions to address unresolved anger allows it to fester and present in maladaptive behaviors and sometimes in depression.5 Anger-based techniques for bereaved teens have not been adequately evaluated, but some strategies are recommended by professionals to help adolescents express anger in ways that will not harm them or others.6 These strategies include verbal or nonverbal forms of expression during individual or group work (e.g., offering narratives or testimony, talking about sources of anger, and writing out feelings of anger and then burning the paper to release it metaphorically), aerobic exercise, or competitive sports. For instance, teenagers may be encouraged to walk briskly or jog while they talk about their anger. Professional goals for treating angry bereaved adolescents include the following: 1. Offer a more comprehensive and accurate understanding of their loss experience by correcting distorted interpretations that may promote magical thought and harmful anger reactions. 2. Help them adjust to the loss by rehearsing adaptive behavioral responses. 3. Help them reduce their expression of harmful anger and encourage other grief-related emotions. 4. Help them devise a constructive expression of powerlessness. 5. Advocate for teens with parents, teachers, and others in their support network.7 It is essential to respect adolescents and allow them to set the pace and help determine the agenda.8 Nonconventional techniques may be needed for individual or group-based work with teens who are especially angry,

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hostile, or unresponsive. If talking does not work and the teen is inattentive, it may be useful to stop talking and engage the teen in an activity involving the arts, such as poetry, journaling, or listening to music. This creates a therapeutic environment even if the adolescent chooses not to disclose in the moment. In working with a teenage girl, I (SS) often presented her with clay to model in her hands when she became angry. She was able to direct her frustration by softening and modeling the clay into different objects. Sometimes she would throw the clay against a piece of plywood as she shared what caused her anger. This physical activity became an effective release of emotions for her.

Drumming also provides opportunities to physically express pain and release emotional energy in a safe space and at the teen’s own pace. The beats and pace of the drum can serve as a lens into understanding the depth of anger and pain.9

Assessment and Treatment of Adolescent Grief-Precipitated Depression Symptoms of grief are also seen in depression, and assessment is critical to evaluate the extent to which depression is present and to develop culturally appropriate intervention strategies. Certain types of loss increase the risk of major depression. For example, siblings of a teen who commits suicide are more likely to have major depression than if the teen died from other causes.10 Teens who are anxious, fearful, and irritable are at higher risk of depression, and those who seek professional assistance tend to experience more griefprecipitated depressive symptoms than those who do not. Professionals need skills in treating adolescent depression and the knowledge to rule out medical conditions or substances that may be causing depression.11 The diagnostic criteria for a major depressive episode are found in the Diagnostic and Statistical Manual of Mental Disorders.12 General symptoms are depressed mood, diminished pleasure in activities, weight loss or weight gain, difficulty sleeping, energy loss, feelings of worthlessness or guilt, psychomotor agitation or slowness, difficulty concentrating, and recurrent thoughts of death. These symptoms are similar to depression symptoms experienced by other age groups, such as young adults. Evidence-based treatments of grief-precipitated depression include trauma- or grief-focused psychotherapy (interpersonal psychotherapy, individual and group cognitive-behavioral therapy) and family therapy.13

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General Techniques and Interventions Death Education and Grief Supports in School Adolescents spend many of their waking hours in school and interacting with friends and teachers, even if virtually, and this environment exposes them to additional losses. Whether adolescents experience a classmate’s death, the loss of a significant relationship, or failure to have meaningful engagement with their studies, providing school-based interventions is essential. Adolescents are at greater risk of grief associated with sudden, violent death than ever before; gun violence in schools and public gathering places, police brutality, suicides, and other traumatic losses have become a common occurrence. Parents have a critical role in notifying the school of a grieving student who may need additional assistance.14 School social workers and counselors often use group interventions to reach many students, but they may need to tailor interventions for students grieving specific losses, such as a family member’s death, the difficult decisions associated with teen pregnancy, or the traumatic aftermath of teen suicide or school shooting. Death education and supportive protocols providing effective responses to major losses should be in place in every school.15 Although teachers are knowledgeable about adolescents’ developmental issues and play an important role in opening conversations about death, they may not have engaged in their own personal death education or be comfortable discussing the topic.16 Most school personnel do not feel personally or professionally prepared to respond effectively to the needs of grieving adolescents, even though the extent of death education in schools has increased and has a greater focus on the importance of prevention, such as in the case of suicidality.17 Death education for students can occur in many classes. Students may analyze a book on loss and grief in English classes or explore the physical changes following death in health or science classes. When major losses occur, these discussions are a foundation for students who are processing grief, providing opportunities to normalize grief and helping teens who are grieving or know someone who is. In school settings, most deaths as “off-time” events come as a shock, leaving the school with little time to prepare a coordinated response. Schools need to proactively consider how they will navigate a sudden death of a student or school personnel to avoid delaying intervention. Having a crisis team in place is critical; members can be trained in advance and provide a coordinated response, including communication protocols, onsite teams, and how to navigate social media posts.18

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Schools are faced with addressing of the impact of the coronavirus pandemic on adolescent experience of loss and grief. When schools closed in March 2020, teenagers’ avenues for autonomy and socialization through sports and social activities dramatically changed, creating numerous losses and jeopardizing their mental well-being. Adolescents grieving a family member who died from COVID lacked the support of public mourning rituals such as funerals. Teenagers in foster care may experience grief from the lack of supervised visits and increased isolation from their birth families, which increase their mental health risks. The Dougy Center, a national bereavement center for youth, provides guidelines for foster parents and professionals to support adolescents during this period, including the following:19 • Schedule times to contact family and friends via phone calls and video chats. • Encourage letter writing to maintain connections to family. • Incorporate art into daily activity to facilitate the sharing of feelings. • Provide time and openness to discuss feelings of loss and grief stemming from the pandemic. • Be aware of the power of language. Consider the phrase “physical distancing” rather than “social distancing” as most teenagers thrive in the social part of their lives.

Group-Based Interventions Common objectives for professionals addressing adolescent grief through groups include the following: 1. Provide open, honest, and accurate information about grief. 2. Help identify healthy ways of coping through running, sports, journaling, and music. 3. Listen carefully to allow teens to develop appropriate solutions rather than give advice. 4. Mobilize current support systems, including being with friends and engaging in normal activities. 5. Encourage reaching out for support from professionals and support group leaders and participants.20 Group-based interventions can reduce bereaved teens’ sense of isolation; hearing others’ experiences helps validate and normalize grief and assists their learning from others. A challenge with group work, however, is learning how to facilitate a group of emotional teens to ensure that it is both meaningful

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and respectful of participants’ developmental process. Knowing when to use silence, move a conversation to a therapeutic level, provide space for people to be vulnerable but supported, and maintain structure yet be flexible are all key skills for group-based interventions.21 The Dougy Center strives to help teens feel connected to others and identifies more than five hundred centers nationwide with support groups to assist them in the following ways: 1. Depathologizing their grief reactions and helping them feel that they are not “going crazy.” 2. Feeling less alone. 3. Realizing that others care about and understand, to some extent, what they are going through. 4. Validating intense and difficult feelings. 5. Helping them express what they are feeling, both verbally and nonverbally.22 Group work is effective for bereaved adolescents. For instance, African American youth in group therapy following a homicide had reduced symptoms of PTSD.23 Moreover, group work is congruent with cultural norms for many youth of color because relational factors in providing support are generally valued. For example, community memorials, the church, and participation in community settings that tell the story of the death are critical to the grief journey of both Latinx and African American youth. Although these groups are often informally constructed, they provide significant therapeutic value in processing feelings.24 Group-based techniques are particularly relevant for school professionals because the degree of comfort teens feel in sharing their grief depends on relationships with individuals in authority.25 In working with adolescents experiencing grief and trauma, school personnel need to address disenfranchised grief, which can negatively affect school performance and overall student success. This is especially important for youth who face multiple challenges such as family difficulties, mental illness, substance use, and community violence. Implementation of a school-based cognitive-behavioral intervention for trauma can address depression and anxiety associated with disenfranchised grief and enhance the resilience and well-being of African American and Latinx youth. This intervention effectively addressed the multifaceted challenges and losses in their lives.26

Expressing Grief Through Music Helping grieving adolescents explore their feelings through beats, rhythms, and song can be effective.27 The therapeutic use of music serves several vital

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functions: (1) allows for exploration of emotions associated with the loss that are provoked through song, (2) enhances relaxation and coping, (3) provides opportunities for communication and support, and (4) improves overall daily behavioral and cognitive functioning.28 In some circumstances, music may be part of a larger intervention designed to help teens relax and reduce anxiety associated with grief. For instance, putting on headphones and listening to music alone may help reduce a teenager’s anger, anxiety, and other emotions that impede daily functioning. In a group setting, adolescents can bring in music that represents their loss and feelings. The group listens to the music together and then discusses its meaning. A dance can be put to music to enable teens to share their grief and the meaning of their loss, or art or photography can be paired with music to help teens explore their grief. A group-based therapeutic song-writing process for adolescents to explore grief is described by Dalton and Krout; the ten steps group members take to complete this process follow.29 1. Discuss the theme of the song to be written. 2. Develop and record a drum track for the song with group members all contributing a rhythm. 3. Choose chords for the song. 4. Choose the style of song and type of guitar to be used. 5. Write chorus together and sing it as a group. 6. Each group member writes an individual version of the song related to his or her loss. 7. Group members share their lyrics and have opportunities to make changes. 8. Each group member selects an instrument to use in a solo performance after their verse is sung. 9. Group members sing, play, and record their version of the song. 10. Group members listen to each song and discuss what they heard and learned. Through this song-writing intervention, adolescents not only share their emotions but also gain insights about their grief by reflecting on the experience of other group members. Music can be integrated into most interventions, and professionally trained music therapists are available to work with grieving adolescents. Some music therapists practice in hospice and hospital settings; others are private practitioners. The American Music Therapy Association provides a detailed description of the role of music therapists on interdisciplinary teams and explains how they can complement other psychosocial interventions.30

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Practical Strategies for Counseling Male Adolescents The bereavement literature has not evaluated gender-specific interventions for adolescents, but male adolescents usually have more difficulty expressing their feelings than females do. We specifically address strategies for counseling males in this section, but many of these strategies may be relevant to working with female adolescents as well because factors other than gender affect emotional expression. School-based professionals need to be aware that male adolescents often express their grief behaviorally, and disciplinary action sometimes results from their aggressive behavior.31 To respond effectively to male adolescent grief, therapists must understand what is occurring in the bereaved adolescent’s life and work to surround him with healthy adult relationships to assist in navigating the complexity of grief reactions. Counselors and other professionals have used the following strategies to address the needs of bereaved adolescents, especially young males. Although first articulated in 2001, these strategies are still relevant today.32 1. Convey interest, caring, trustworthiness, gentleness, persistence, a nonjudgmental attitude, empathy, and flexibility. 2. Respect the adolescent’s wish to include significant others in sessions to provide security and make communication easier (e.g., teens may bring a sibling or close friend). 3. Structure the relationship and establish ground rules. 4. Learn about the teen’s interests and life at home, at school, and in the community, especially his perceptions and interpretations of what has transpired. 5. Demythologize taboos to help males understand that they are not weak or inadequate if they seek assistance or openly express their feelings, such as crying. 6. For some teens, expressing their feelings may require that no one else be present. 7. Ensure confidentiality and ask permission (when appropriate) to communicate with or seek parental involvement. 8. Respect the teen’s privacy and need to postpone talking about painful subjects. 9. Help the teen link thoughts and feelings and encourage use of the phrases I wish, I feel, I need, and I miss. 10. Help the teen express his thoughts and emotions through age-appropriate modalities (e.g., acting out his grief through music and art).

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11. Encourage the teen to recount both positive and negative memories. 12. Encourage reality testing by having the teen ask family members about the loss. 13. Encourage discussion of the teen’s need to protect others who are grieving and ask how family secrets pertaining to the loss have affected them. 14. When thought processes appear to be distorted, help teens discuss their beliefs and determine how and when to help them reframe their thoughts. 15. Encourage teens to talk about their dreams and visions of the deceased. 16. Commend their ability to manage their mourning constructively, and encourage teens to continue activities that help them feel self-sufficient and competent. 17. Urge teens to manage their anger constructively (e.g., competitive sports may help boys with destructive tendencies redirect and diffuse their anger). 18. Suggest ways of talking with their friends about their grief, especially if friends are teasing them or ignoring their grief (e.g., pretending that nothing has happened). 19. Share the loss experiences and constructive grief responses of respected male role models.

Interventions Related to Specific Losses Death of a Parent or Sibling Adolescents whose parent or siblings died may not receive others’ support if the family system is in crisis. Parents or other adults may not recognize the teen’s need for assistance or encourage the teen to pursue professional help, leaving youth without resources for navigating their grief and thereby increasing their risk of complicated grief.33 The family bereavement program is one of the few experimental evaluations of a theory-based prevention program for parentally bereaved adolescents. It is designed to modify risk and to provide protective factors that influence youth’s mental health, such as the quality of the relationship between the surviving parent/caregiver and the adolescent, the caregiver’s mental health, and the teen’s exposure to negative events.34 This program includes conjoint and separate groups for caregivers and adolescents. Caregivers are taught techniques to improve the quality of their relationships with teens, provide discipline, challenge negative thoughts, increase the number of positive activities,

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guide youth in problem-solving, and reduce teens’ exposure to negative events (e.g., adult arguments). Adolescents are taught techniques to improve the quality of their relationships with caregivers; learn positive coping skills, develop self-esteem, acquire cognitive reframing and problem-solving skills; and understand how to express their grief. The program reduced the number of stressful events and improved parenting, coping, and caregiver well-being, but this intervention resolved problems only for girls who had higher problem scores initially. Although the extent to which this intervention modified grief scores was not evaluated, the results suggest that family-based interventions can influence risk and protective factors for bereaved adolescents. More research is needed to replicate this study, evaluate its effectiveness in community-based service delivery systems and for teens from diverse backgrounds, recruit high-risk families, and improve the program’s effects for adolescent males. Other recent research found that adolescents face more internalizing and externalizing difficulties after a parent’s or a sibling’s death than peers who have not faced such losses.35 In a longitudinal study, female adolescents experienced more internalizing problems and behaviors than males who had greater externalizing behaviors. Sibling death caused more internalizing problems and behaviors than did parental death, which could be related to increased feelings of survivor guilt.36 Other research found that sibling death is particularly challenging, with bereaved adolescent siblings more prone to complicated grief symptoms and seeing the world as harsher and less kind.37 Congruent with the centrality of family and community capacities for resilience, these findings point to the importance of adults as a stabilizing factor in the life of grieving adolescents. Although there are few evaluations of teen bereavement interventions, practical strategies for supporting adolescents throughout a parent’s or a sibling’s illness and after death come from clinical evidence of how adolescents experience loss. For example, talking openly about death appears to be helpful to bereaved teens, but teens need to be assured of a safe setting to be vulnerable with their feelings.38 Even years after a death, older adolescents or young adults may experience behavioral changes and strong emotional reactions, including deep loneliness. Central to supporting adolescents is asking direct questions about their life, relationships, and school achievements as well as their symptoms that may be related to their grief. Many teens hide their feelings to protect those around them who are also grieving, particularly their parents.39 Recommendations emerging from qualitative research with bereaved adolescents emphasize that professionals should promote honest communication,

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provide factual information, facilitate discussion of feelings, help parents understand their teens’ developmental needs and grief responses, maintain their support network, encourage them to say good-bye, and be mindful of demands and expectations placed on them. The surviving parent should encourage youth to select meaningful mementos, support their active participation in any memorial service, provide opportunities for talking about the deceased parent, create enjoyable family experiences, make use of teens’ natural supports, and suggest participation in activities that might alleviate feelings of helplessness (e.g., volunteer work).40 Helping adolescents tell the story of a death is an effective way to initiate the assessment process. It may provide emotional relief, facilitate meaningmaking, encourage family members’ empathy toward one another, and offer a way to measure treatment progress as stories are retold over time.41 More generally, telling the story of a loss is a way for teens to remember the deceased as well as to reconfigure their relationship with the deceased. In groups or individually, a professional may ask questions to prompt discussion of events surrounding the death. Teens may write and then share their responses to questions about the events. The following questions may help teens tell their story: Who died? How did he or she die? Was it recent or a long time ago? How did you find out that your loved one died? Who told you? What was your immediate reaction? How do you feel now? Did you see your loved one after death? What was it like for you to see (or not see) your loved one? Was there a funeral, shivah, or other kind of memorial service? Were you involved in the service? What parts were really difficult? What parts were less difficult than expected? What memory of the deceased makes you feel good? Who was and is able to support you? What other losses have you had in the past? How have you dealt with them? Informal support helps moderate the grief of teens after a family member’s death. Adolescents may be encouraged through individual and group work to identify healthy support systems in their life and to understand why these are important for enhancing their resilience. For instance, in a group setting, adolescents can identify people who care about them, share their interests, and then discuss how they can use mutual interests to build a stronger

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support network. This type of intervention is particularly important if the person who died was a key support figure with whom the teen shared areas of interest such as sports, fishing, hiking, or art. Adolescents turn to social media following many life crises, particularly a family member’s death. As discussed in chapter 6, social media has opened avenues to share information and form relationships beyond the teen’s immediate network.42 More than 80 percent of teenagers are on social media daily, so it is essential for professionals to consider how teens can use social media as a coping tool and a social support following a death.43 Many platforms allow adolescents to post information about a death, along with their feelings and thoughts, without parents and professionals knowing the extent of their grief or needs. This is a critical outlet because teens generally receive positive feedback from online posts and feel better about themselves, although not all feedback is helpful.44 Research also indicates that adolescents prefer platforms that reduce adult interference and are less frequented by adults who may intervene. Similarly, sending a picture that contains real-time emotional expressions via Snapchat allows adolescents to express themselves in the moment in a way completely hidden from adults.45

Divorce of Parents The extent of marital conflict, violence, and pre- and postdivorce child-parent communication and behavioral patterns all influence the manner in which adolescents understand and adapt to divorce.46 Interventions that may alleviate teens’ grief associated with divorce are provided at both the community and school level, and in group or individual therapy, but these resources have received relatively little attention. Studies are needed that move beyond descriptions of general loss and actually measure the grief response. Professionals can learn from adolescents how the manifestations of grief influence them and what their needs are with regard to divorce-related losses. Professionals need to understand (1) how postdivorce grief affects teenagers’ social and psychological functioning, (2) cultural, racial, and socioeconomic differences in adolescents’ postdivorce grief, (3) the efficacy of current intervention models to modify the grief experience, and (4) the most useful techniques and interventions. Group-based interventions may be beneficial for adolescents struggling to adjust to changes in their family system. Jewell provides a facilitator’s guide to help adolescents adapt to divorce that emphasizes the need for open communication regarding changes likely to occur in their family system during transition periods and in the future. The group sessions not only assist in developing a safe space for teens to share but incorporate activities that can be

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used between sessions and after the group ends, such as relaxing and walking away from conflict.47

Teen Pregnancy and Perinatal Death Adolescent parents face distinctive grief responses from perinatal death in part because of their cognitive development level, resistance to accessing health services, reliance on peer norms, and dependence on family for financial support. A study of African American adolescent mothers found they needed support throughout the process of perinatal loss, identifying that their baby had died and the pregnancy had ended, deciding if a funeral for their child would be appropriate, adjusting physically to their body and producing breast milk, leaving the hospital without their baby, and preparing for returning to school.48 Professionals working with teens grieving perinatal loss should consider the following factors. 1. Reach out and demonstrate caring and concern. 2. Use a broad-based assessment and treatment approach to address losses and other current challenges or concerns in the teen’s life and to identify and overcome barriers from significant others. Consider the parents’ attachment to the unborn child, their understanding of the cause of death, their grief responses to the loss, and the availability of support from family members, the father, or friends. 3. Evaluate the adolescent for depression and suicide risk. 4. Involve the adolescent in writing a treatment plan to reduce feelings of powerlessness. 5. Use both visual and concrete methods to discover past and current losses, such as an ecomap (a drawing developed jointly by the professional and bereaved parent that uses circles and symbols to portray an individual and his or her family in their social context), a life-history grid (a graphic depiction of significant events in a person’s life), or a written autobiography.49

Suicide Grief associated with adolescent suicide is profound, whether for a teen considering suicide or for survivors of an adolescent who commits suicide. Suicidal adolescents endure tremendous psychological and emotional suffering. For survivors, complicated grief dramatically elevates the risk of suicide, even after controlling for major depression and PTSD.50 Professionals should be aware of prevention and intervention programs for suicidal teens as well as postvention (post-suicide) support services for bereaved survivors.

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Prevention Suicide prevention can be conceptualized as a supportive intervention to reduce the rate of suicide completions by teens, many of whom may be grieving a variety of losses. The purpose of these interventions is to identify warning signs of suicide and take actions to reduce risk. Risk factors for adolescent suicide include depression; changes in relationship status, which can include loss, family history, or difficulty coping with adversity, such as the death of someone close; prior mental health concerns; knowing others who have chosen suicide; and family violence such as sexual abuse.51 The text box highlights symptoms of emotional instability, self-destructive thoughts, and behaviors that can be precursors of a suicide attempt. One of the greatest misconceptions is that suicidal ideations are not a cause for concern for an adolescent’s family, friends, or other support systems. Suicidal ideation is a complex condition that warrants aggressive intervention and draws upon personal, cultural, family, societal, and community capacities.

 Assessment of Adolescent Suicide Risk Behavioral Indicators Previous attempts Decline in school performance Giving away prized possessions Withdrawing from others Physical fighting with family members Running away Violent temper outbursts Writing a diary about the desirability of death Infatuation with death media including poetry, drawings, music, or satanic rituals that glorify death as a solution to life’s problems Extreme risk-taking behaviors Unresolved past experience with death Rebellious behavior unusual for the person

Quietly putting affairs in order Neglect of personal appearance Increasing use of drugs or alcohol Atypical interest in sexual promiscuity

Verbal Indicators Direct “I’ve decided to kill myself.” “I wish I were dead.” “Sometimes she makes me so mad, I feel like killing myself.” “I hate my life and everything about it.” “I just can’t go on any longer.” “Life has lost all its meaning for me.” “I’ve had it, life isn’t worth living.”

Indirect “Everyone would be better off without me.” “I just can’t deal with this anymore.” “If I don’t see you again, thanks for everything.” “I’m not the person I used to be.” “I think I’ve lived long enough to see what to do.” “Do you know the procedures for donating your eyes after death?” “I wish I could tell you how important you’ve been.” “Here, take my [cherished possession]; I won’t be needing it soon.”

Situational Indicators Loss of an important relationship Loss of an overvalued aspect of life (e.g., not making the team, not getting perfect grades) Divorce of parents Violence within the family Violence with peers Parent or school overemphasizing achievement

Social isolation from peers Recent death of a friend Living away from the family for the first time Extended physical illness without recovery Period following a long bout with depression Suicide in extended family

Affective Indicators Extreme self-criticism Apathy Recent weight loss or gain Sleeplessness or oversleeping Loss of pleasure or interest in activities Lethargy Becoming easily agitated Feeling worthless Feeling hopeless Easily discouraged Unable to concentrate or stay on task Low frustration tolerance Dwelling on problems Living in the past Social withdrawal Indecisiveness Focusing on failure Ideas of self-punishment Lack of investment in the future Extreme despondency or euphoria Lack of goal orientation Exaggerated fears Reduced ability to express affection Feelings of being an undue burden Sources: Terri A. Erbacher, Jonathan B. Singer, and Scott Poland, Suicide in Schools: A Practitioner’s Guide to Multi-Level Prevention, Assessment, Intervention, and Postvention (New York: Routledge, 2015); Cheryl A. King, Cynthia Ewell Foster, and Kelly M. Rogalski, Teen Suicide Risk: A Practitioner Guide to Screening, Assessment, and Management (New York: Guilford Press, 2013).

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Congruent with the resilience model, parents and teachers are key support systems in early identification and intervention as a response to suicidal thoughts and behaviors. Improving communication among youth, their families, and school personnel is essential to prevent suicide. Most schoolbased prevention programs are “gatekeeper training” to prepare parents and teachers to identify vulnerable adolescents and to intervene before a crisis occurs.52 However, only a small percentage of gatekeepers are able to identify risk factors and respond effectively to suicidal ideation, and programs do not always involve both teachers and parents.53 Teachers often struggle with a loss of control if they notify a parent who does not feel the same level of urgency or if they identify an at-risk student who is then referred to someone else.54 Parents and other adult role models need to understand the risk factors for adolescent suicide ideation. After gatekeeper training, parents, teachers, and other professionals should be able to (1) identify warning signs of suicide, (2) increase students’ awareness of suicidal behavior, and (3) provide information about mental health resources and how to contact them. In a review of gatekeeper interventions, Torok and colleagues found that teachers and parents benefited from training on suicide; in several studies, however, behavioral outcomes did not improve, which suggests that a greater skill focus is needed for suicide intervention. More encouraging is that suicide literacy and confidence increased in teachers, which might translate into earlier identification and intervention.55 Media also can be enlisted to prevent suicide. For instance, the Netflix movie Thirteen Reasons Why sparked useful discussions about adolescent suicide; the vast array of warning signs shown in the movie were not recognized by teachers, parents, and others who interfaced with the main character. Despite criticism that this movie would trigger suicides, it highlighted how others do not always recognize suicidal ideation and opened the door to discussions about risk factors. In general, media can assist in suicide prevention by depicting suicide in a way that (1) does not glorify the person or suicidal act, (2) describes the act as a result of several events rather than one simple precipitating factor, (3) does not describe in detail the method used, and (4) does not sensationalize the death by excessive reporting. Given the link between cyberbullying and suicidal ideation, teachers, other professionals, and parents need to address interventions for this type of online aggression. Research on risk factors, outcomes, and impacts of cyberbullying is growing, but evidence is limited on the effectiveness of intervention programs that prevent or reduce it. Moreover, evaluations of these interventions have only been published since 2012, reflecting the recent nature of this

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phenomenon. Programs that have been evaluated are found to be effective, but we need to identify which components are most efficacious in preventing negative outcomes associated with cyberbullying.56

Intervention Once a suicidal adolescent has been identified, he or she should be contacted immediately to discuss problems, explore solutions, take action, and arrange follow-up utilizing techniques of supportive confrontation. Intervention should start even after a benign threat such as “I am just going to kill myself.” Words have power, and a benign threat may hide deeper feelings that require intervention. Family members legally responsible for the teen should be involved in developing a service plan to reduce the immediate danger. This plan should be initiated by a trained gatekeeper along with someone who is available for ongoing support and follow-up. One strategy to mitigate immediate crises is a “no suicide contract,” an agreement between a professional and an adolescent that suicide will not be attempted during a set time frame and describes what the adolescent should do to obtain assistance if suicidal thoughts occur. However, this intervention is controversial and has drawn attention because of the potential for harm to both professionals and adolescents.57 Reasons for concern include limited data on success, a false sense of security may be created, a lack of legal protection for the professional, and difficulty determining the client’s commitment to the contract and competency to understanding it. In addition, the strength of the therapeutic alliance is not present, and the contract often takes the place of adequate risk assessment for continued suicidal thoughts.58 Other interventions for suicidal adolescents are cognitive-behavioral approaches such as family therapy, group therapy, acceptance and commitment therapy, or dialectical behavioral therapy. These approaches focus on alternative solutions to problems, defuse black-and-white thinking, and identify positive consequences of solutions (e.g., an adolescent explores his or her problems, finds alternative solutions, tests hypotheses, and resolves conflicts).59

Postvention Despite early identification and intervention, adolescent suicides are increasing, creating trauma for families, schools, and communities. Ken Norton, executive director of the New Hampshire Chapter of the National Alliance on Mental Health, described the impact of suicide this way: “Picture a suicide death as a pebble dropped in a pond. While the first and biggest waves hit

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the family and those closest to the decedent, the impact spreads outward to others exposed to the death such as friends, witnesses, first responders, treatment providers, and colleagues. The impact of knowing someone who died by suicide may include trauma, depression, complicated grief, and substance misuse. And this impact can last for weeks, months, or years.”60 The risk of suicide among survivors increases following a successful suicide completion, so postvention activities are essential to reduce risk and provide an immediate crisis response for survivors.61 Postvention has three main goals: (1) facilitate the healing of individuals from the grief and distress of suicide loss, (2) mitigate other negative effects of exposure to suicide, and (3) prevent suicide among people who are at high risk after exposure to suicide.62 Effectively responding to the various levels of individuals who are affected by the suicide is also a component of postvention. The continuum of survivorship model organizes individuals into four groups: those exposed to the suicide, affected by the suicide, suicide bereaved shortterm, and suicide bereaved long-term. Postvention examines the distinctive needs of each group proactively and ensures that strategies are implemented to address all psychosocial and trauma-related issues.63 The National Action Alliance for Suicide Prevention has outlined national guidelines for postvention activities: 1. Plan ahead: do not wait to plan a response until after a suicide has occurred. 2. Communicate effectively: communication should be coordinated and streamlined to prevent inaccurate information from being released and rumors started. 3. Facilitate mourning and reduce the risk of contagion: create opportunities for healthy grieving and minimize the risk of additional suicide attempts. 4. Identify teachable moments: find opportunities for suicide prevention activities. 5. Proactively help those at highest risk. 6. Respond to the suicide over time: organizational interventions should be long-term because risk does not simply go away with time.64

Trauma Sudden, unexpected deaths are the leading kind of deaths among adolescents. As reviewed in chapter 2, the sudden, often violent, perceived preventable, and traumatic nature of these deaths can complicate the bereavement of teen survivors.

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Core treatment approaches for adolescents following traumatic deaths include trauma-focused cognitive-behavioral therapy, dialectical behavioral therapy, eye movement desensitization and reprocessing, play therapy, and various group approaches.65 Helping teens reconnect with their feelings through writing or journaling, art, drama, and even dance are common treatment approaches. Group-based arts therapy following school shootings is helpful in addressing mental health issues, such as PTSD, depression, and anxiety.66 The Newport Academy, supported by the National Institute of Mental Health, uses evidenced-based treatments to assist adolescents struggling with mental health and other complex issues. Understanding the changing composition of the adolescent brain is critical to implementing trauma-based treatments. As the brain matures, it continues to develop emotional regulation abilities, stress hormones increase that affect behavior, and impulse control continues to develop.67 A debriefing may help reduce adolescents’ distress after a major disaster. One of the most significant events for any teen is experiencing a school shooting. The text box provides steps for professionals to follow to reduce distress and trauma when assisting adolescents after a school shooting.

 Coping with the Trauma of a School Shooting: Strategies for Helping Schools After a Shooting • Keep the routine as normal as possible. • Limit exposure to the news and updates on the situation. • Follow the lead of adolescents, and answer only questions that they ask. • Be honest in sharing information. • Be present to hear their concerns and fears. • Ensure that parents and teachers are addressing their own trauma separate from the adolescents. • Provide reassurance about safety. • Provide multiple opportunities to share emotions, feelings, and reactions.

Places to Grieve • Help students find gathering spots to come together to grieve and receive support.

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Schedule a Memorial Service Separate from formal services held by families, this event is an opportunity for students, families, teachers, and other community members to come together to remember those who died.

Have Professionals Available for Support Following school shootings, a crisis response team is usually on the scene to assist grieving students, teachers, and other individuals. This psychological first aid is not designed to take the place of therapy. It is provided to address the initial shock and trauma and to begin the process of healthy grieving.

Managing Media Following a school shooting, the media will be present. It is important to remember that their role is to share the story and provide ongoing updates. It is not always healthy for adolescents to speak with the media. Professionals should work with parents and teens to ensure that media interactions are healthy for the students.

Returning to School Following a shooting, students and teachers will have some time off while law enforcement and other responders conclude their work. Returning to a normal school day routine can feel scary and elicit mixed emotions. Having professionals available throughout that day to assist students who are having strong trauma reactions is critical.68

The American Red Cross lists best practices to prepare for and respond to an immediate crisis: 1. Schools and community agencies should conduct risk assessments and be prepared for potential disasters. Planning for a crisis should ensure that individuals are informed about their role and know how to respond. 2. Coordinate responses with organizations that have therapists and staff who have expertise in working with teens experiencing trauma.

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3. Following Maslow’s hierarchy of needs, ensure that primary needs (i.e., for safety, security, and health care) are met before psychosocial intervention is offered. 4. Treatment will occur over time; recognize that immediate brief approaches may be followed by long-term support. 5. Group bereavement interventions should begin five to ten days after the disaster. Some indirect contact should be made right away; for example, written materials or appropriate resource pamphlets could be distributed. 6. Schools and agencies should use tried and tested manuals when available; many of these are free and are accessible online. 7. Interventions will require multiple sessions. 8. Adolescents should be screened and monitored and referred for additional assistance as indicated.69

Community Violence Some adolescents live in communities with high levels of violence. These teens repeatedly confront traumatic death, which may result in feelings of alienation, despair, and isolation. In Becoming, Michelle Obama describes how the children in Chicago chose to walk in the middle of the street instead of on the sidewalks so they could see if violence was going to happen around them. She notes that youth were most fearful on sunny days; on cold or rainy days, violence was less likely to occur. Mass killings have increased in the United States over the last twenty years—Sandy Hook, Virginia Tech, Parkland High School, and synagogue and mosque shootings—and greater attention is being paid to community violence in a wide range of settings and communities. Adolescents are the victims of violent crimes more than any other age group, which means that teens are likely to know a peer who has died from violent crime.70 Teens are also likely to have witnessed or had a loved one die at the hands of the police. Responding to large community trauma events is difficult because people tend to be at widely different places in regard to their grief, fear, anxiety, and understanding of what occurred. For adolescents who live in communities where violence is a frequent occurrence, interventions must be able to address the “normalcy” of these events in their life. Group-based interventions with teens exposed to community violence may be helpful. A field study of the effectiveness of a school-based trauma- and grief-focused group psychotherapy protocol found that the intervention reduced posttraumatic stress and complicated grief symptoms and improved academic performance.71 A pilot

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study that evaluated the effects of a ten-week, community-based grief and trauma therapy group for adolescent survivors of homicide indicated that the therapy group helped reduce PTSD symptoms in inner city African American adolescent survivors.72 The lack of a control group limits conclusions that can be drawn from this project, but the study suggests that such interventions should be further tested. Interventions are moving into nonclinical settings as well. In one study, a therapist in an emergency room provided a brief intervention of motivational interviewing and cognitive skills training to youth who were wounded. The goal was to use this setting and time to help reduce future violence. This intervention led to a decrease in violent aggression and increased self-efficacy to avoid potentially violent situations.73 Professionals responding to loss among African American or Latinx populations need to be aware of the racism experienced by teens when interacting with counselors and other services. There is often little public recognition of the deep pain and grief felt by community members after homicides in areas where random gunshots, police brutality, and early death are common, although the Black Lives Matter movement has increased the awareness of many Americans. Moreover, it is important to be respectful of empowerment strategies of communities protesting violence through community memorialization that acknowledges key events with symbols, folk art, martyrdom, and language. In areas with high rates of homicides, these artifacts express shared values that may be contrary to and resistant to values of the larger society. These memorials are a way to avoid social death and disenfranchised grief and to communicate meaning by keeping the deceased’s social identity present.74 After police shootings in some urban areas, adolescents have painted murals, turned to social media, placed flowers and other artifacts at the site of the shooting, and organized opportunities, including nonviolent protests, to come together. Following the 2019 mosque and synagogue shootings, communities held services and had other gatherings led by community leaders to provide religious-based support. In these situations, respected institutional resources (e.g., religious institutions) brought communities together in safe, culturally appropriate ways. Communities held vigils, laid flowers, lit candles to show unity, expressed grief, and provided a feeling of hope to those most traumatized.75

Summary This chapter examined issues salient to grief interventions with adolescents and described developmentally appropriate interventions and practice principles. There are several gaps in the descriptions and evaluations of

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interventions for the grief associated with typical forms of loss encountered by teens. Few interventions for bereaved adolescents have been systematically evaluated in treatment outcome studies. For example, there is a need to evaluate interventions provided in school- and community-based organizations with youth. In addition, with the exception of the few studies of youth bereaved by trauma (e.g., suicide) or violence, culturally appropriate interventions for bereaved youth of color, LGTBQ youth, and those from low socioeconomic backgrounds have not been adequately explored. Because belief systems, manifestations of grief, grief rituals, family roles, and historical experiences all are influenced by culture, professionals working with bereaved teens must develop and test culturally congruent interventions. Culturally specific methods, techniques, and skills proposed for working with adolescents in counseling and therapy should be further adapted and tested in grief interventions, including the loss and grief faced by adolescents as a result of the coronavirus pandemic.

8 Loss and Grief in Young Adulthood

 Young adulthood (approximately twenty-two to thirty-five years of age) is typically characterized by an orientation toward the future and anticipation of positive changes: completing college or graduate school, starting or solidifying a career, marrying or committing to a life partner, buying a home, giving birth to or adopting children, and forming new friendships. However, some of these positive changes may also bring losses: moving away from the family of origin, leaving childhood friends, changing jobs, and giving up dreams. Some young adults experience major losses such as infertility, prenatal or perinatal death, an infant’s death, birth of a child with disabilities, onset of physical or mental disability, death of a peer or sibling, widowhood or divorce, sexual or physical abuse, racial injustice and police brutality, and immigration. Indeed, young adulthood may be a time of multiple death-related losses that profoundly affect identity formation and interpersonal relationships.1 In this chapter, we discuss a few of these losses, and it will become apparent that characteristics of the grief process and appropriate interventions are similar for types of grief in middle and late adulthood. We begin with young adults’ grief over prenatal, perinatal or infant death, and see that death of a child, regardless of parent’s life stage or the child’s age, is the most painful loss parents face. Widowhood, divorce, and separation have different meanings for a young adult than for those in middle or old age. Even so, many of the issues faced by bereaved partners, whether gay or straight, are similar for all ages. Some developmental theorists and researchers have advanced the concept of emerging adulthood as a developmental stage,2 contending that past conceptualizations of adulthood have shifted in part because the social brain is not fully developed until closer to age twenty-five.3 Characterized by identity exploration that begins in adolescence, emerging adulthood takes place between ages eighteen and twenty-five, the ambiguous period between late 189

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adolescence and young adulthood. Arnett maintains that young adulthood is not a chronological age as much as it is the time when adolescents complete the tasks of emerging adulthood.4 Friends, peers, and intimate partners emotionally salient during adolescence remain influential during emerging adulthood, which is characterized by a strong preference for autonomy from parents, even though they may still be needed as a safety net.5 Developmental tasks presumed essential to forming a sense of self and healthy emotional regulation, such as graduating from college, accepting responsibility for oneself, becoming financially independent, engaging in career development, and finding a partner, are now occurring at older ages (late twenties), in part because of economic factors. This may manifest as instability (multiple moves/jobs), feeling in-between, and anticipating multiple possibilities.6 Indeed, popular culture puts forth the notion of a “quarter life crisis” that mirrors a “midlife crisis” to convey maturational losses experienced by emerging adults as they lose the socially sanctioned dependence of adolescence without feeling fully adult. Huffington Post developed a category titled “ Quarter Life Crisis” for stories about emerging adults’ sense of inadequacy, instability, and insecurity when compared to previous generations.7 Other scholars disagree, believing that emerging adulthood is not a development stage but simply a middle- or upper-class social construct that does not fit the experiences of low-income populations.8 Regardless of classification, the continuous transitions and uncertainty of this period of adulthood make other losses, such as a parent’s or peer’s death, a deep threat to their development of identity and autonomy.9 In this chapter, we prefer the term young adulthood, which is most frequently used in the grief literature, and incorporate the concept of emerging adulthood only when it is specifically identified in the literature.

Developmental Considerations Young adults generally explore identity roles established in adolescence through choices about lifestyle, relationships, and work that give meaning and continuity to their life. They also seek to establish an autonomous self,10 although these tasks may vary in cultures that place a higher value on family and community than on individual autonomy. In the United States, young adults leave home and become responsible for their own housing, marry and create their own family, and work and live apart from their family of origin, often at a geographic distance. Decisions made in young adulthood regarding informal relationships, vocation or career, and lifestyle continue to influence their

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choices throughout their lifetime, although this trajectory has been disrupted by high rates of job loss and rental evictions among young adults during the coronavirus pandemic. Erikson describes young adulthood as a time in which people move from the identity fragmentation and confusion of adolescence into more intimate engagements with significant others.11 For some, it is a time to explore sexual and gender identity and intimacy, especially if they did not fully do so in adolescence. Young adults typically try out different relationships while also preserving their individuality. Those who resolve the developmental task of intimacy versus isolation are able to experience love. Those who cannot resolve this developmental challenge may feel alienated, disconnected, and alone and be unable to form significant intimate relationships. Marriage may no longer be a salient marker in the transition to young adulthood because growing numbers of young adults are living together unmarried but in committed heterosexual and LGBTQ relationships, often for years. Independent decision-making and financial autonomy may be more significant than marriage in marking this transition, but these markers have been blurred recently due to high rates of un- and underemployment and drug use of young adults during the coronavirus pandemic.12 Young adults today often have to negotiate conflicting or incompatible life roles and choices. Levinson described life structures being in constant motion in young adulthood, evolving as new circumstances unfold. Life structure is built on specific decisions made in relationships, occupation, and childbearing. Some people spend fifteen years making this transition to adulthood and constructing a stable adult life structure.13 Cultural and social capacities (e.g., family support, socioeconomic status, educational opportunities) affect life structure choices, constraining or facilitating opportunities, such as whether to begin or delay childbearing. A close supportive relationship with parents, particularly fathers, can facilitate young adults’ assumption of increasing personal responsibility and efficacy.14 These inner capabilities are central to resilience and to how individuals grieve. Major losses during young adulthood, such as a child’s or partner’s death, can disrupt the process of constructing a stable adult life structure and completing developmentally appropriate tasks, such as differentiating from one’s family of origin. In addition, earlier losses, such as a parent’s death during childhood, often resurface as bitterness, anger, or anxiety that may have negative effects on young adults’ relationships and well-being.15 A relatively recent social change faced by some young adults is managing competing expectations from divorced parents and coordinating time

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with each of them. Balancing relationships and feeling responsible for both parents becomes emotionally complicated for young adults because of the extra time and energy required to spend “equal” time with both parents.16 These coordination challenges have emerged as a result of changing patterns of postdivorce parental involvement in which fathers have a larger continuing presence in their children’s lives than was true in earlier decades.17 Many young adults feel they no longer have a home base to turn to if they need housing or other supports.18 The absence of parents as a stable point of reference is frequently experienced as a loss.19 In addition, young adults experiencing losses from their parent’s divorce generally have more difficulty committing to intimate relationships.20

Resilience Background Characteristics Socioeconomic status and educational level are critical factors for young adults beginning a career or pursuing higher education, and the family of origin’s social class is an important mediating circumstance in these transitions. Those from higher income backgrounds have more opportunities and resources for negotiating adversities, whereas low-income young adults, particularly those of color, have fewer choices. However, with growing economic inequality and housing instability even relatively advantaged young adults have found this transition more difficult than in the past. If they return to live with their family of origin, as has occurred during the coronavirus pandemic, they are out of sync with the developmental tasks of Eurocentric culture. However, young adults in some cultures may choose to remain living close to their families (e.g., Native American families on their tribal land) or to share the same home (e.g., multigenerational Latinix families).

Personal Capacities Abandoning the adolescent focus on self, becoming self-reliant, and connecting with significant others is integral to developing one’s identity, positive self-esteem, and making adult commitments. Young adults able to define a positive direction for their life have more personal resources for dealing with adversity, such as a loved one’s death. They have more complex abstract cognitive capabilities and greater awareness of personal feelings than adolescents, and they typically are able to see things from multiple viewpoints. Young adults generally solidify their values and beliefs and develop a moral conscience, as shown in their taking responsibility for others. Spirituality or a

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focus on what gives purpose and direction to life is another personal capacity that young adults may cultivate, especially when raising children.21

Social Capacities Parental expectations become less salient to young adults, although they may still exert an influence. Being able to turn to adult role models for advice and support is central to young adults’ social capacities, as noted in our discussion of the negative impact of divorce. Their expanded social networks may include colleagues, neighbors, friends, parents of their children’s friends, and extended family, although these capacities have been disrupted by the social distancing of the coronavirus pandemic. Neighborhood, community, and friendship supports all affect their ability to handle adversity. When confronted with a major loss, such as a homicide of a friend or relative, informal social support is critical to the bereaved’s grief and resilience.22

Culture Many young adults want to maintain equilibrium with their family of origin, although the family’s expectations of what it means to be a good daughter or son may conflict with their own. This may create tensions with their families of origin when grieving an extended family member’s death. Young adults from other cultures may struggle with loyalty to their family in the context of “mainstream” America’s emphasis on independence. As is true with earlier life stages, professionals need to respect how culture affects developmental tasks as well as reactions to loss, including mourning rituals.

Prenatal and Perinatal Death and Loss As is true of adolescence, the worldview of young adult parents generally does not include the possibility that a fetus can die in the uterus or during the birthing process. Such deaths, often shrouded in silence or invisible to outsiders, include miscarriage, spontaneous abortion (e.g., the naturally occurring loss of a fetus before twenty weeks of gestation), and stillbirth in late pregnancy. Labor typically proceeds immediately and is allowed to occur naturally in stillbirth, but the pregnancy may continue for several days or even weeks following cessation of movement. Knowing that the fetus is already dead, parents must deal with the anguish of giving birth or having surgery to end the pregnancy. In instances of miscarriage and stillbirth, the mother’s emotional state is further taxed by her body, which confirms the reality of having been

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pregnant and giving birth but with nothing to show for it, and by a society that does not acknowledge the significance of such losses.23 Committed young adult partners usually greet pregnancy with excitement, family and peer support, and a sense of “being on time” in the developmental tasks of parenting. When a death occurs, parents struggle not only with the loss of a child with whom they were bonding but also with the loss of their hopes and expectations for their child as well their perceived loss of a part of themselves.24 Mothers, in particular, may blame themselves, worrying that their diet, physical activity, or decision to delay pregnancy when younger is a cause of this death.25 Support systems may minimize these deaths, assuming the unborn child did not have a personality, attachments were never formed, or the mother is young enough to have another viable pregnancy (e.g., replacement children). In fact, well-intended friends and family may intensify the loss by encouraging young parents to try for another child right away, without recognizing that they need time to grieve. Others may imply that miscarriage should be quickly forgotten. If parents do not tell others about the loss, their grief becomes even more invisible. Unaware or uncomfortable, others may ask intrusive questions about when the couple plan to start a family, and this kind of insensitivity can delay integration of the loss in parents’ lives. Because of limited support, prenatal and perinatal loss is often treated as disenfranchised grief, resulting in complicated and chronic grief.26 Another erroneous assumption is that prenatal and perinatal deaths are less difficult because the parent and newborn have not yet formed a relationship. These assumptions negate the strong attachment bonds often formed throughout pregnancy.27 Nowadays, the use of ultrasound imaging promotes bonds for both parents. In general, the longer the pregnancy and the more opportunities for attachment, the greater the grief over a perinatal death.28 For couples that suffer through numerous miscarriages or stillbirths, the loss is even worse. They may also mourn the loss of their fertility, mistrust their bodies, or change their self-image. Women who have several miscarriages tend to feel isolated from and envious of other mothers, presuming that other women are able to give birth easily. When a baby dies through miscarriage or stillbirth, some of the parents’ reactions are similar to those of other mourners: shock, numbness and disbelief, emotional and cognitive resistance to the reality of the death, anger, bewilderment, guilt, depression, yearning, and somatization. However, some feelings, especially fears, self-blame, isolation, hopelessness, and guilt, tend to be intensified for parents compared to others.29 Fears of infertility, the impact of the death on their marriage, and being a failure as a parent for not

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protecting an unborn child are common. With their sense of coherence and assumptive world challenged, parents may struggle with issues of meaning and unanswerable questions: Why did this happen? Will it happen again? There is a tendency to blame oneself (What did I do wrong during the pregnancy?) or one’s partner (Why did he or she insist that we wait so long before starting a family?).30 Similar to a child’s death at any age, parents who experience prenatal or perinatal loss never get over it; instead, they learn to live with it.31 Although some health care professionals still discount the significance of stillbirths, there now is greater recognition of the importance of rituals, such as holding, seeing, and naming a stillborn child and conducting a burial. These practices can help parents focus on the reality of their loss, say goodbye to the child, and integrate this loss into their lives, although not all parents will choose to do so. It is critical to understand the meaning of the loss to parents and to affirm that the child was real and had value.32 Cultures vary in how they respond to perinatal death, including rituals such as wakes, funerals, burials or cremations. Parents devastated by an infant or a child’s death may find these decisions particularly difficult because they typically had never anticipated such painful and complex choices.33 Making arrangements tend to be even more difficult for immigrant families and for those with language barriers, which points to the need for professionals with skills to take account of cultural norms. Muslims regard a perinatal death as being as significant as the loss of someone later in life, and they treat the fetus with dignity and respect. The fetus is accorded moral, legal, and spiritual value, and bereavement practices and procedures tend to be similar to those for deceased children and adults. Rituals include sharing prayers, reading from the Qur’an, and talking about the baby and his or her life in the hereafter. In Filipino culture, children are considered innocent angels who go directly to heaven after death, so the rituals to lessen the family’s pain are simpler and shorter than those held for adults. Puerto Ricans dress children in white, paint their faces to resemble angels, and place flowers outside and inside the coffin. Many Chinese believe that child death is a shameful “bad death.” Parents and grandparents are not expected to attend the funeral, and the death is not discussed because the gods have not blessed the family. These differences highlight the importance of professionals’ being cognizant of death ritual practices based on religion, culture, finances, family tradition, and individual preference and that they use culturally appropriate interventions with bereaved young parents.34

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Sudden Unexpected Infant Death Sudden unexpected infant death (SUID), formerly know as sudden infant death syndrome (SIDS), takes the lives of infants two to six months of age. In instances of SUID, parents’ guilt may be intensified by the lack of scientific and objective explanations for the death, which can cast suspicion on parents. The causes and pathogenesis of SUID are not fully understood, and conflicting recommendations abound, such as “turning the child,” playing background music, or avoiding alcohol, which can leave parents feeling even more confused, inadequate, and responsible for not following “expert” advice. Parents may search relentlessly for the cause of their infant’s death.35 The sense of loss is also intensified because the baby typically appears to be healthy and thriving. Parents may awaken to find their child has died without warning during the night, and they have not had any opportunity to prepare for the event as they would if a child dies from a progressive disease.36 Compared with mothers grieving a baby’s death from other causes, mothers bereaved by SUID tend to be less resilient, have greater anxiety, and have a more negative perception of the world.37 This may stem from the fact that others may imply that the mother’s negligence is responsible for the child’s death, even though the mother could not have prevented it. Feelings of blame are often exacerbated by the legal requirements for investigation of SUID. All of these factors place tremendous stress on the parents’ relationship, resulting in a high rate of breakups.38 The National SIDS and Infant Death Program Support Center provides a toll-free information service, including information about local support groups for bereaved parents, and firstcandle.org offers up-to-date resources.

Abortion or Relinquishing a Child to Adoption Elective abortion or relinquishing a child to adoption are two other types of child-related loss for young adults. Abortion has been called an unspeakable loss that many women would rather forget and for which there is little social support. Moreover, to view it as a death to be grieved may bring up profound guilt for “causing” the death. Mothers in their twenties or early thirties who earlier chose abortion but later are unable to carry a child to term or experience infertility are confronted with an earlier decision that they may have tried to bury and is now tinged with regret, self-blame, and perhaps a loss in self-esteem and self-confidence.39 As with most losses, parents cannot simply put these earlier losses “out of their minds.”

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Some young women may decide to give birth but make the difficult decision to give up the child for adoption. This decision, often made without family or partner support, is typically marked by oscillation between extremes: approach/avoidance, uncertainty about what is the right thing to do, stalling to gather strength or to delay the inevitable, hoping for magic, and emotionally shutting down. Denial also is common, and a young woman may disguise her pregnancy under baggy clothes, even up to the point of birth. In Anna Quindlen’s novel Blessings, a girl who hid her pregnancy from her parents and boyfriend leaves her daughter on a rich family’s porch, hoping their wealth will ensure a good future for her child. But she later returns to claim the child.40 Such ambivalence leaves young women vulnerable, and others may make decisions for them. If they feel forced by others to relinquish the child, trauma and rage may later make their regret even greater.41 Birth mothers who give their child to an adoptive family may grieve for their unknown child until they die. They are often left with unanswered questions, which vary in salience across their life course: Where is her child? Is he or she well cared for? What if she eventually found her child? Would her child be angry with her? These women may feel unable to express their fears or ask questions of anyone, even if they later commit to a partnership relationship. Feelings of regret and guilt are especially complex when parents must give up their children because of abuse, neglect, or incarceration. Incarcerated mothers face the complexities of trying to sustain a relationship with their child while having their behavior monitored during family visits. Too often, professionals and the public may blame the mother, labeling her as unloving or inadequate, without knowing the full story—the socioeconomic, cultural, religious, or racial inequities—behind her behavior. The birth mother’s grief, even in open adoption, includes multiple losses of daily interaction and family structure; control and security; self-worth, respect, and status; and acknowledgment that she has given life to a unique human being. In open adoption, her loss is characterized by an orientation to what might have been, marked by an inability to know the fullness of the loss; others’ underestimation of the loss; and ongoing grief with each developmental stage of the child. Moreover, the “voluntary” nature of the loss may diminish others’ support. In open adoption, birth parents are in uncharted territory in a process that is confounded by moral dimensions. The paradoxical nature of the loss means that birth parents, while grieving, can nevertheless benefit from observing that the child is well cared for and given new opportunities. Gains and losses,

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satisfaction and sadness, coexist. Nevertheless, regret—the persistence of ambivalence—may hover over this decision throughout the birth mother’s life and lead to isolation and loss of self-confidence. In addition, complicated grief may occur if adoptive parents do not involve the birth mother as the child grows up. Although young adults cannot change their decision to relinquish their child, they can learn from it when they face other difficult choices. Some birth parents try to undo their decision and minimize their grief by having another child as soon as possible. But the replacement child cannot fill the emptiness created by the one relinquished. An additional emotional risk for birth parents is choosing to move away from the relinquished child rather than fully embracing the loss.42 The grief inherent in relinquishment is complicated by individual and societal factors. In most instances in U.S. society, social and community capacities are not supportive. If family and friends did not interact with the newborn, they may not share the parents’ sorrow or even acknowledge that it exists. Family, colleagues, and even acquaintances usually hold negative images of the birth parents and may attach a stigma to their behavior; others implicitly convey “how could anyone give up a child?” and disrespectfully label “unloving” birth parents as “different” and dysfunctional. Most birth parents decide to give up their child out of love: “I love you so much that I must step away from you.”43 But friends and family are usually unaware that the relinquishment decision is not made easily or willingly. For instance, some birth parents are forced to make such a decision because of external circumstances, such as poverty or youth, or an internal need for what they perceive to be an optimal outcome for themselves and their child. They may treat the birth as something to remain silent about, thereby creating another instance of disenfranchised grief. Relinquishment often is a family secret, hidden from view but heavy in the birth parents’ heart. When birth parents feel abandoned or excluded, they typically experience low self-worth and low self-esteem. Their social capacities are further depleted when family, friends, and adoptive parents misunderstand them. Some cultures and religious groups label them as sinners and pressure them to move away from past social supports, including family. Feelings of guilt and loneliness may be especially intense for young parents whose child has disabilities and must make the agonizing choice of raising this child or giving him or her up for adoption.44 Adoptive and foster parents also often grieve the loss of a hoped-for child or relationship. They live with the knowledge that the adopted child may

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choose to seek out his or her birth parents. Despite their cognitive preparation for this loss, they may nevertheless feel abandoned, unappreciated, or even resented. Foster parents may grieve continuously, especially if they want to adopt the child and are unable to do so.45 Professionals, pressured by competing demands from child welfare systems, often overlook such grief.

Birth of a Child with Disabilities Parents who give birth to a child who is less than “perfect” struggle with their shattered dreams while simultaneously learning to accept the baby they did not expect, which can complicate the grief process. They have some of the grief reactions associated with a baby’s death: shock; disbelief (why me?); despair; fear; anger at God or a supreme being, themselves or their partner; and guilt over what they did wrong to create a child with disabilities.46 With the initial diagnosis, parents struggle with a loss of expectations (what they had hoped for their healthy child) and the realization of a future very different from their dreams. Parents need to grieve the loss of their child’s hoped-for abilities before replacing their dreams with the reality of their child’s actual abilities and the intensive tasks of parenting.47 Parents’ grief is so intense in part because our cultural expectation is that the months of waiting during pregnancy will culminate in a joyful event. Childbirth classes, child-rearing books, and the popular press rarely allude to anything other than the “perfect family,” although fear of something going wrong during pregnancy often lies just below the surface. Parents typically receive news of their child’s disability in the strange surroundings of a hospital and at a time when they are physically and emotionally exhausted. Health care professionals may insensitively deliver this devastating news right away and hurriedly present complex information when the parents are highly distraught, creating further isolation at a time when support is most needed. Parents may feel alone in both gathering information and making decisions regarding their child’s care. When parents at the point of prenatal testing learn that their baby is disabled, they are faced with the agonizing option of abortion, often without professional or family support. In these instances, they grieve a child whom they dearly anticipated but to whom they could not give birth. With their life markedly changed, parents may feel overwhelmed by the need to make major decisions within a relatively short time: Should they take the child home or consider foster care, adoption, or institutional care? Although most parents decide based on what they believe is best for their child, if they acknowledge their limitations in caring for a child with

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disabilities, parents tend to fear criticism and ostracism in explaining their decision to others. The concept of chronic sorrow was originally based on observations of parents of children with intellectual disabilities, but it is now applied to other ongoing losses as well, such as chronic diseases and progressive deterioration of physical and mental attributes. Parents who choose to raise a child with severe impairments live each day with the source of their grief and with the inevitability of loss, negotiating reality demands, and contending with ongoing and resurgent grief reactions across the life course, including the need to plan for the child after the parents’ death.48 As noted in chapter 2, the concept of chronic sorrow represents a paradigm shift that recasts as normal what was previously considered pathological. The ongoing nature of chronic sorrow has no end point or resolution, but feelings vary in intensity over the parents’ lifetime. Unlike grieving the death of a child who will forever be physically absent, chronic sorrow means living with unending loss and irreparable wounds. Its essence is the discrepancy between reality and what continues to be dreamed about. In chronic sorrow, the affected person deals with inevitable and necessary losses entailed in living as well as with the continuing presence of a child who may not be fully grieved and whose psychological absence may not be fully accepted.49 Fantasy is central to chronic sorrow: what could or should have been (and maybe will be, after all). Chronic sorrow not only interferes with family structure and tasks but also can be psychologically problematic when hopelessness, depression, and ambivalence lead to guilt, anxiety, and immobilization.50 While living with pervasive and permanent sadness, the parents must be able to mobilize all their resources, energy, and courage to cope with a living loss that will be with them until either they or the child dies. Such continuing and sometimes progressive loss often intensifies at developmental milestones across the child’s life, and life transitions, such as graduations, often involve a sense of difference and exclusion from and envy of others, intensifying grief.51 Parents’ first response to learning that their child has a disability may be denial. Parents feel anger and a sense of unfairness; guilt at what they might have done to prevent the disability; and “doctor shopping” in search of a cure, new treatment, or medication to “fix things.”52 Parents of children with severe disabilities must preserve hope, for to do otherwise might make it impossible to provide the twenty-four-hour care their child requires. Unlike parents of a child who has died, parents of children with severe disabilities may not fully integrate their loss because their child continues to live and requires infinitely more care than do other children.53 Even in instances of less severe learning

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disabilities, the daily reminder of the loss intensifies parents’ chronic sorrow, and they must readjust continually because parents are unable to predict their child’s behavior. The concept of ambiguous loss is also salient to understanding the grief of parents of a child with autism, for instance, who must confront the loss of the child for whom they had associated certain hopes before this diagnosis was made. That loss is unambiguous and also perceived as unjust.54 However, once their child is diagnosed, they are dealing with ambiguity as they face an uncertain prognoses, variable daily functioning, and manifestation of some symptoms but not others, which results in comparisons to other children with ASD. Over time, they accept the diagnosis and develop a new type of relationship with their child, while facing obstacles and holding onto hopes for a cure that may complicate this process.55 With a child’s death, social support systems mobilize. With the birth of a child with disabilities, support systems may disappear because people may not know what to say or do, leaving parents feeling blamed and rejected. In addition, a child with disabilities may not be recognized socially, and parents may start to isolate themselves, reducing their involvement with prior social networks that fail to acknowledge their continuing loss. They may turn instead to support groups of parents with similar challenges. Parents feel the loss of self and others as their world revolves around the needs of their child with disabilities. Such stigma and social exclusion, such as loss of friends for the child and parents, also disrupt the family system.56 As with a child’s death, parents never return to the life they had before their child’s birth. Raising a child with disabilities can strain the parents’ relationship, blaming each other for the child’s “genetic defect,” disagreeing about care decisions, and being out of sync in their grief process. It is not unusual for one parent, typically the mother, to be left with caring for the child twenty-four hours a day, gradually depleting financial and social resources and experiencing considerable distress.57 Parents may find interacting with professionals to be stressful and unsupportive in their quest for information about their child’s disability.58 Nevertheless, most parents display resilience, drawing upon their inner strength and sense of agency, religion or spirituality, and positive self-concept as caregivers; engaging in meaning-making; and experiencing the richness of life and posttraumatic growth, concepts discussed in chapters 1 and 2. They gradually let go of past dreams and construct a new reality for their child and themselves.59 However, when family or community supports fail to relieve their burdens, parents’ personal capacities may gradually be depleted.

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Although written nearly seventy years ago, Pearl Buck vividly captured the choices she made, along with the meaning derived from caring for her daughter with severe intellectual disabilities, and her comments are still salient today. They encapsulate how parents of a child with disabilities can find benefit and reconstruct identity through a search for the purpose of suffering, which can frame their experience. We learn as much from sorrow as we do from joy, as much from illness as from health, from handicap as from advantage—and indeed perhaps more. Not out of fullness has the human soul always reached its highest, but often out of deprivation. This is not to say that sorrow is better than happiness, illness better than health, poverty better than richness. Had I been given the choice, I would a thousand times over have chosen my child sound, a whole, a normal woman today, living a woman’s life. I miss eternally the person she cannot be. I am not resigned and never will be. Resignation is something still and dead, an inactive acceptance that bears no fruit. On the contrary, I rebel against the unknown fate that fell upon her somewhere and stopped her growth. Such things ought not to be, and because it has happened to me and because I know what this sorrow is I devote myself and my child to the work of doing all we can to prevent such suffering for others.60

Buck articulated the gap between her fantasy and her child’s abilities and her determination to make a difference in the world. Parents who choose adoption for a child with a disability often grieve two losses: a child they expected but did not get and a child to whom they gave birth but “gave away.” The fact that the child is living with another family can make integrating their loss even more difficult. It is a paradox: death is final, whereas relinquishing a child with disabilities to adoption has no “end,” even if the choice is voluntary.61 The first birthday is often especially difficult as parents relive the sorrow surrounding the birth, which they had anticipated to be joyous. Because they chose relinquishment, they may also feel a double sense of isolation: from friends who have never lost a child and those who gave birth to a child with disabilities but are raising their child. They may feel envious or resentful when watching other seemingly “intact” families, especially those who disapprove of their choice. Chronic sorrow typically permeates the adoption circle of birth parents, adoptive parents, and adoptees. Giving one’s child with disabilities to another family leaves both birth and adoptive parent(s) with unanswered questions and the paradox of simultaneous joy and sorrow. The birth parents that chose relinquishment have the empty place at the table and the memories of the

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“last year” when the pregnancy meant hopes for a future baby. Both birth parents and the child may dream of finding each other. Even though they chose to adopt a child with disabilities, adoptive families may struggle with the loss of their dreams for a healthy child who looks like them.

Onset of Disability or Chronic Illness in Young Adulthood Facing chronic or life-threatening illness or disability in young adulthood may interfere with the developmental tasks of achieving intimacy and attaining life goals. The unpredictability of chronic illness and the lack of a cure or even complete medical knowledge mean that daily life is radically altered, resulting in a profound rethinking of one’s life story and self-concept and, in many cases, isolation and differentness as they compare themselves to friends without disabilities and distance themselves from people with similar conditions. Individuals experience not only the loss of health but also of independence, status, a sense of worth, privacy, body image, and social networks. Moreover, uncertainty and lack of control may make it difficult to create meaning from their illness, resulting in feelings of helplessness, powerlessness, and vulnerability.62 However, some young adults do not see themselves as diminished by illness or disability; instead they discover newfound strengths and community.63 Young adults functionally limited by disability experience chronic sorrow because they know that their loss will never end. They also may experience anger, isolation, sadness, and jealousy of those who can live outside their physical selves. Life-altering injuries, such as traumatic brain injury, are most likely to occur in adolescence and young adulthood, when young people engage in risky behavior and experience high accident rates. The loss of capacity that can result from traumatic brain injury is described as the deepest insult to a person’s sense of self and is all-encompassing, affecting every aspect of functioning, roles, and relationships. Losses include impaired memory, reduced ability to process information, communication difficulties, and personality changes. The loss of hope is perhaps most devastating. The future is filled with uncertainty and perhaps painful devastating reminders of what has been lost. However, the concept of continuing bonds—preservation of one’s relationship to oneself after the losses entailed by brain injury—can be a source of hope.64 A brain injury can profoundly change a family’s interaction and emotional dynamics, especially if the brain-injured young adult is unable to show affection or emotion. Social support is critical in negotiating new assumptions and

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interpersonal relationships. Unfortunately, partners and other family members, perhaps embarrassed and uncomfortable by these changes and coping with their own loss, may pull away from their injured loved ones, adding to their grief65 While NFL players are seen as heroes to many for their athleticism and high intensity play, many players post-retirement struggle with grief as they consider all they may lose if they develop CTE due to blows to the head and concussions they sustained. They may grieve lost futures due to onset of profound brain injuries that mirror dementia. Brett Favre, a Hall of Fame quarterback, has shared his fears of CTE and the grief accompanying an unpredictable future where he is unable to be cognitively present with his children and grandchildren. Although relatively young, he struggles to remember his children’s activities, simple words, even where he left his keys (in his hand) or glasses (on his head). Despite his national visibility and wealth, he experiences the social stigma of someone feeling markedly different.

In summary, both chronic illness and disability in young adulthood violate long-term scripts for the way that life is supposed to be. Assumptions about the world as a benign place are shattered, and the grieving process requires making new, more realistic assumptions.66 A young adult struggling with illness and disability must form new relationships with others, his or her body, and lifestyle.

Death of a Spouse or Life Partner Because widowhood under the age of fifty is not normative, less is known about young widows and widowers than about older widowed people.67 Although age by itself is not a determining factor in grief, young adults tends to be more distressed than older people by a partner’s death because it is unanticipated and out of sync with one’s developmental stage.68 In our late twenties, we do not expect our partner to die, even if we experienced peer deaths in adolescence. Such off-time events may have secondary consequences, such as lack of peer support and role models for grieving. My (NH) son’s girlfriend—who he hoped to marry—kept hope of Chris being found alive long after other adults accepted that he could not possibly be alive in blizzard-like conditions at 12,000 feet. She was in disbelief when she overheard my husband and me talking about a memorial service. The ranger informed us of Chris’s death shortly before her older sister’s wedding. She had to negotiate such a profound and off-time loss while trying to meet her family’s expectation to appear happy at the wedding, leaving her feeling lonely and unsupported.

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The death of a partner in a cohabitating relationship, whether same sex or heterosexual, is another form of disenfranchised grief that often is not or cannot be openly acknowledged, publicly mourned, or socially supported. Indeed, there is relatively little research on a cohabitating partner’s death.69 In some instances, community and family support may be diminished at the time of and following the death, and the survivor may struggle with undefined transitional roles. Regardless of age, race, sexual orientation, gender identity or marital status, young adults whose partner has died typically experience a severe alteration of their identity from “we” to “I,” changing social relationships, the need to be responsible for oneself, and loneliness from handling rituals and marker events such as anniversaries of the death. Because of their youth, they often have limited experience with death and with locating resources to support their grief process.70 This pattern may be changing because people are now marrying or committing to long-term relationships at older ages.71 Loneliness may be more intense for bereaved young adults, who describe two kinds of loneliness: the loss of daily shared routines and private moments, family holidays, and sexual intimacy; and no longer being the single most important person in someone’s life, nor having a significant other who shares life experiences. The surviving partner must deal with the loss of the “mirror” aspect of his or her relationship, in which one partner can reinforce the other’s positive self-image. This can create secondary losses, such as losing a sense of being important, loved, or even lovable. As a grieving wife lamented, “I no longer feel special to anyone.”72 Most bereaved partners also experience anger, ambivalence, and hostility toward their deceased partner who abandoned them, even while they try to retain and internalize the positive aspects of their relationship. The husband of Julie Yip-Williams, a young mother and physician, described how he initially experienced a sense of relief after her five-year battle with an aggressive cancer. Then “the anesthetic effect of trauma begins to wear off, and the deep pain of permanent loss begins to set in. . . . I was incapacitated with grief, and a flood of unprocessed emotions, haunted by regret, self-doubt, and an unhealthy dose of demon guilt.”73 Complex feelings may be aggravated by society’s tendency to sanctify people who die young, whose death is seen as more tragic than that of someone older. A partner’s death in young adulthood also raises issues concerning one’s own mortality and recognition that survivors are the only ones ultimately responsible for their happiness. Regardless of age or the nature of the death, a partner’s death requires that the bereaved “relearn” life alone.74 Compared to older widowed people,

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young adults often make dramatic changes in their life as they try to start over.75 The grieving partner confronts questions of “Who am I now?” or “How were those aspects of myself shaped by and perhaps dependent on my partner who died?” He or she must learn again how to be and act in the world without a partner.76 Levinson posited that the challenges faced by bereaved young adults may push them to search for new ways to meet their unfilled internal needs and make interpersonal changes, including a new committed relationship.77 Early bereavement often forces young adults to clarify their values and alter commitments to previously established longterm goals, and they may change careers or communities for a better fit with their new way of life. Young widows seek this transformation more often than widowers and tend to be more resilient than older widows. Loss at an earlier age may enable them to remake their life in a more complete way than was previously possible, but this might seem unrealistic to older widows. Young widows may gain personal autonomy, an enlarged capacity for caring, a greater appreciation of relationships, and a strong sense of the preciousness of life. Overall, loss of a partner at a young age appears to initiate a transition that affects a young woman’s life in far-reaching ways, such as how she re-creates meaning in her life. The idea of loving someone else, however, may evoke a range of feelings, from a signal of healing and readiness to move forward to a sense of betrayal of the relationship, as if doing so invalidates love for the deceased partner.78 Regardless of gender, bereaved young adults face questions of how to maintain continuing bonds with their partner while moving forward.79 In some instances, the experience shapes their identity in positive and healthy ways as they forge a forward-looking self-narrative that reaffirms their connection to and love for the deceased.80 This need for a continued bond and a simultaneous readiness to discover new benefits illustrates the dual-process model of grief discussed in chapter 2.81 Moreover, those who successfully engage in meaning-making and positive identity change are less likely to experience high levels of distress and complicated grief.82 Young adults bereaved by a partner’s death are increasingly turning to internet sites such as Open to Hope (www.opentohope.com) for support from others with similar experiences. Online support enables them to be validated in their experiences when they may lack support in their “nonvirtual” communities because of the off-time nature of their loss. They may use social media to maintain connections with their deceased partner or seek a new partner.83

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Death of a Gay or Lesbian Partner Earlier bereavement research in the 1990s focused on survivors after a gay partner’s death from AIDS in young adulthood. In fact, a systematic review of the bereavement experiences of LGBTQ partners found that most studies were of those who experienced multiple community-wide losses in the context of HIV or AIDS over an extended time.84 Most HIV/AIDS survivors were at high risk of shame, hopelessness, denial, social isolation, withdrawal, depression, suicidal ideation, and complicated grief.85 Moreover, many bereaved partners described disenfranchisement: being forced by social strictures to conceal the nature of their loss for fear of its impact on their support network and employment, or feeling their relationship was stigmatized and unrecognized.86 With new treatment regimens, AIDS increasingly resembles a chronic illness rather than a life-threatening one, although the long-term effectiveness of most drugs is unknown. Nevertheless, recent research found that for gay and bisexual men whose partner died of other causes, HIV/AIDS was still assumed to be the cause of death, reflecting the “shadow” HIV/AIDS cast over their bereavement experience.87 With marriage equality and increasing public and family acceptance of gay partnerships, recent research suggests that gay men’s bereavement is more similar to than different from that of heterosexual widowers; both face the universal totality and physicality of pain and struggle to continue with life and rebuild their identity alone. For both straight and gay partners, grief is focused on life with—and without—their partner.88 Distracting themselves with necessary death-related tasks and creating a sense of purpose and meaning are important to both groups. Similar to heterosexual widowers, gay widowers report continuing bonds with the deceased so that he remains part of their life, maintaining active relationships through memories, and feeling guided by and experiencing the deceased’s presence. A pattern of transforming the relationship with the deceased through formal and informal memorials appears to be essential for both heterosexual and same-sex bereaved partners to integrate their loss into profoundly changed lives.89 Despite similarities in the grief process regardless of gender identity, LGBT bereaved individuals may face dissonance between legal progress and social acceptance, particularly as they encounter stressors of homophobia and additional legal and financial barriers, including while planning funerals and memorial services. Some feel invisible, silenced, and excluded from decision-making and rituals. Bereaved lesbian partners, for example, refer to feeling excluded from support because of disempowerment by family or

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religious institutions.90 Although some may experience estrangement from their family, others garner support from a “chosen family.” They may lack access to the role of “widow” and the norms, expectations, and entitlements encapsulated in that role. Unpredictability and, in some instances, absence of support may complicate the bereaved’s grief, and the normal emotions of denial, anger, and guilt may be prolonged and intensified.91 In summary, despite legal gains, homophobia is entrenched in certain segments and institutions of society, and this can make grieving complicated, especially when family and friends minimize the magnitude of their loss. Those who experience overt acceptance of their relationship can draw upon strong family, community, and cultural capacities central to resiliency.92 As with other types of loss, attention to individual and cultural differences and structural inequities in lesbian and gay communities is critical.

Divorce or Separation Divorce or separation occurs across the life course, but ending a relationship in young adulthood can feel off-time because the central developmental task of this stage is to establish intimate relationships. This sense of being out of sync with peers occurs even though about 50 percent of all divorces happen within the first seven years of marriage, often because of parenting stress.93 Grief from the loss of an intimate partner is not dependent on relationship status and legal recognition (e.g., married or cohabitating; gay or straight) but on the attachment bond between partners.94 The end of a relationship through divorce or separation is voluntary and involves some form of intentionality, so it also is characterized as ambiguous loss. The relationship dies but the person is still living and contact may be ongoing, particularly when young children are involved. Although both partners are still physically present, they may be psychologically and emotionally absent. This contrasts with the continuing bonds between partners when death may end a life but not a relationship.95 Divorce and separation are more likely to entail secondary losses related to self-esteem, self-worth, and worldview. Individuals may receive less support from family and friends in part because of the stigma and blame associated with a failed relationship.96 Both partners had high hopes at the beginning of the relationship, and both will experience grief at its end. In addition, divorce is not a one-time event but a culmination of many losses over an extended time.97Adapting to divorce tends to be more difficult than adapting to widowhood in which there is often an idealized view of the deceased and expressions of sympathy from others, whereas ambivalence, interpersonal conflict, and shame tend to complicate the grief process for divorcing partners.

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Abuse, Sexual Assault, and Trauma We turn now to a brief discussion of the losses inherent in abuse and sexual assault. A full discussion of the issues of complex grief and traumatic loss entailed by abuse is beyond the scope of this book, but we hope to foster the reader’s awareness and sensitivity of the grief processes associated with this type of trauma. All trauma involves loss (e.g., of one’s assumptive world), but not all grief involves trauma (see chapter 2). However, similarities exist between the grief caused by a loved one’s death and the trauma of surviving sexual abuse in childhood and young adulthood.98 Abuse and assault are said to be uncommon losses because they are experienced by a relatively limited number of people, whereas most people will experience loss from a loved one’s death.99 The #MeToo movement has made us aware of the widespread nature of sexual assault, and the repercussions from losses entailed by childhood sexual abuse may be lifelong, interfering with the developmental tasks of young adulthood. Seeking protection and care but fearing abandonment and exploitation, young adult survivors of child abuse may be at risk of repeated victimization, depression, and self-harm (e.g., suicide, alcohol abuse) throughout their adult lives.100 Survivors of childhood sexual abuse experience losses of safety, innocence, and protection by the adult world, which may be carried as an invisible wound into young adulthood and beyond.101 When children are victimized, their right to trust those who care for them is broken. They face loss of being able to assume a safe world when they have lived with the danger and trauma of abuse. Survivors typically report an overwhelming sense of helplessness because of the unpredictability of violence, loss of social supports, and secrecy and shame surrounding abuse. They also lose the internal psychological structures of a self securely attached to others as well as their sense of bodily integrity.102 If unable to talk about the trauma because of an atmosphere of secrecy, survivors may become imprisoned by their feelings at the time of the trauma. The resulting loneliness and isolation throughout life may be far more damaging than the actual event. Abercromby interviewed survivors of abuse and learned that the self hides within shame and becomes isolated from others. Chronic grief characteristic of childhood sexual abuse involves reliving the experience and revictimization. Stagnation and avoidance indicate a delayed grief process, and acceptance and growth (becoming who we are) represents an integration of the losses entailed in childhood abuse and growth in the capacity to connect with others.103

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When survivors of childhood mistreatment confront other types of loss in young adulthood, they may be more vulnerable and exhibit intense and sometimes complicated grief.104 Confronted with feelings of abandonment, survivors of childhood abuse often have problems related to trust, autonomy, and initiative, which can dramatically interfere with the early adulthood tasks of establishing independence and intimacy. Professionals’ understanding of the long-term impacts of childhood abuse can help survivors make sense of previously unexplainable behaviors and feelings such as worthlessness, hopelessness, and anger; difficulty forming and maintaining stable relationships; sleep disturbances; and physical/somatic symptoms. Survivors of abuse have higher rates of complicated grief and PTSD symptoms in young adulthood; they may experience periods during which memory of the trauma is unavailable, and their risk of suicide is higher than those who have never been sexually assaulted or victimized.105 As with other forms of loss, telling the story is essential to resilience and rebuilding a sense of self, living in the present, developing meaning, and pursuing goals.106 Reconciling with and forgiving oneself, reconnecting with others, and recognizing commonality among other survivors are part of the healing process. The customary rituals of mourning are generally not available to survivors because their losses are stigmatized and discounted. Although young adult men are exposed to more traumatic violent events than women, women are more likely to be sexually assaulted in young adulthood. Because sexual assault is a non-death loss, survivors may experience disenfranchised grief, as seen among women in the #MeToo movement who are speaking out about earlier discounted losses. Female sexual assault survivors face multiple, cumulative, and multilayered (e.g., both visible and invisible) losses. Visible ones are loss of friendships, employment, income, and sexual interest. Invisible losses often are unacknowledged or minimized but may have the greatest long-term negative impacts on trust, need for control, their previous worldview and beliefs about the goodness of others, self-identity, self-esteem, and emotional and physical safety. The concept of suffocated grief goes beyond the lack of recognition characteristic of disenfranchised grief to encompass the devaluation, misinterpretation, and misdiagnosis of grief responses by professionals, friends, and family. Moreover, bereavement policies rarely offer accommodations for a woman grieving a non-death loss such as sexual assault.107 Issues of loss and grief of sexual assault survivors have only recently been addressed in the bereavement literature.108 Mourning associated with sexual assault involves extensive amounts of emotional, cognitive, social, and

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physical energy. Young adult survivors must process not only the assault itself but also life preceding and after the assault. Adding to the survivor’s losses is the realization that her perpetrator may not face social or legal sanctions, whereas she may experience a lack of informal and formal support, feel stigmatized and discriminated against, and be held personally responsible for the assault. Women of color typically face additional losses; they may lack police protection, medical care, or accessible legal resources, and they often rely on individual coping strategies of religion and spirituality rather than community support.109 Survivors may experience both ambiguous and nonfinite loss because the assault is often hidden, invisible, and ongoing, and there are no established rituals or transitional markers of support. Instead, survivors are often praised for concealing their emotions and “handling the situation so well.”110 Assault survivors may not experience posttraumatic growth through loss, particularly if they do not have time to process the fact that they have been violated and to establish a new way of being in their life after the assault.111 A hostile or negative response may exacerbate the survivor’s sense of shame and guilt, so supportive responses from others are critical to mitigating the negative impacts of sexual assault. Informal supports may enfranchise grief and increase understanding of the survivors’ story by engaging in “cultural humility,” listening with compassion, without judgment, and without a plan to hurry grief along and “fix it.”112 Community, family, and social capacities, including accessible supportive services, must acknowledge survivors’ lived realities of trauma, loss, and grief so survivors are able to process their experiences in ways that will enhance their well-being.113

Immigration As we are acutely aware, growing numbers of individuals and families are migrating to Western countries in search of a better life. Political and economic strife, ongoing wars, and natural disasters have compelled migrants to seek safety and well-being beyond their own borders, but the losses and grief immigrants face are rarely discussed. This lack of recognition is somewhat understandable in light of more immediate needs for safety, shelter, food, health care, and employment as well as the trauma of poverty, gang and drug violence or war that immigrants are fleeing. Non-death losses, such as the absence of familiar places and structures that have been part of one’s individual and group identity, can leave young immigrants grieving and adrift, losing precious time that would have gone toward achieving developmentally

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appropriate goals of employment and starting a family.114 Even with the passage of time, as is the case with most Cuban immigrants, chronic grief over the lost homeland is an ongoing loss that defies closure.115 Although immigrants of all ages face loss of home, country, and culture, young adults in particular may grapple with reconstructing their personal identity arising from losses due to migration. The normal developmental tasks of moving away from the family of origin for education or work become more complex when young adults are faced with systemic oppression, inequities, and traumatic circumstances. Young adults may be expected to maintain their parents’ culture while they try to fit in with new peers, marry, and find work. As they attempt to adapt, the reconstruction of self forms around a core of loss and grief; and it generally happens in a new language.116 As noted by Dunlop, when immigrants are no longer able to walk among familiar markers of identity such as family, language, and geography, they often lose their sense of belonging and of self.117 When they feel unwanted and experience discrimination and hatred, their sense of loss and being untrue to their core beliefs is intensified, often resulting in chronic sorrow over never feeling truly at home in either their old or new culture.118 Another type of loss faced by some young adult immigrants who have left their family is grief over the death of a parent or other close relatives in their country of origin. They often lack finances or legal status to be able to travel to their home community when relatives become sick or die.119 In studies of undocumented Latin American migrants in the United States and in the United Kingdom, their inability to fulfill obligations to care for aging relatives accentuated feelings of sadness, helplessness, guilt, and remorse. Moreover, when unable to directly help or see a loved one in person prior to death, they typically have more difficulty grieving their death.120 The concept of ambiguous loss applies in such situations because they cannot see and are unable to return home to help bury the “lost person.” Moreover, they may feel ambivalence toward both their country of origin and their host country.121 These experiences also lead to boundary ambiguity as both migrants and their relatives in their home country struggle to continue their family roles.122 The concept of continuing bonds is salient for understanding immigrants’ experiences of loss and mourning of relatives left behind along with wider social and cultural elements to which they continue to feel emotionally attached. In some instances, deceased family members continue to be ongoing members of the transnational family support network and sources of comfort and support.123

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Racial Injustice and Police Brutality Young adults are often victims of police brutality. In 2020, the shared grief of families and communities over the deaths of Ahmaud Arbery, George Floyd, Breonna Taylor, and countless other Black and Brown Americans poured out onto streets across the United States. Many white Americans became more aware of the emotional pain Blacks feel living under white supremacy and laws and policies that reward police violence with immunity.124 Both their loved one’s death and the prolonged battles to gain justice and accountability create trauma, loss, and feelings of powerlessness, anger, hurt, and hopelessness that reverberate across family networks and generations. Moreover, for young adult survivors already struggling with inequities and racist structures prior to the fatality, deaths of friends and loved ones due to police brutality tragically verge on being a normative event.125 When there is not a community outpouring of grief after instances of police violence, the family’s grief is often disenfranchised and invalidated by oppressive structures. Lack of societal recognition of their grief is deeply affected by racism and racial stratification; the context in which their loved one died (e.g., media representations of the victims as “known to the police” and police scrutiny of family members); blaming, marginalization, and stigma of the victim and family; discrediting encounters with the police that raise doubts about the character and worth of the deceased and their community; and questioning survivors’ rights to be acknowledged as credible victims of the homicide. These factors tend to lead to entrapped grief, intensify the “second wound,” and prolong and complicate survivors’ grief.126

Summary Major losses during young adulthood are generally unanticipated and offtime, and the bereaved become out of sync with peers who are healthy, married, enjoying healthy children, and looking forward to the future. Young adults often have no life experiences or perspectives to help them in the meaning-making process when they suffer a major loss such as an infant’s death, birth of a child with disabilities, their own chronic illness or disability, a partner’s death, or sexual assault. Their family, community, and cultural capacities may not be as strong and extensive as those of middle-aged and older adults. During the coronavirus pandemic, young adults faced numerous non-death losses of jobs, income and career plans; of social interaction;

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and of dreams. Given the nonnormative nature of their losses, their limited life experience, and fewer social and economic capacities, young adults often feel markedly different in their grief process, and may carry these feelings into middle and late adulthood. However, if they are able to integrate their losses, bereaved young adults may be more resilient in midlife and old age than many of their peers.

9 Interventions for Grieving Young Adults

 For many, young adulthood is a time of good health, vitality, and accomplishments associated with developmental tasks. However, for individuals struggling with unemployment, debt, substance use, trauma, deaths of loved ones and other losses, it can be an uncertain, stressful time. Nevertheless, most individuals do not approach young adulthood anticipating major losses, which makes grief feel unexpected and confusing. Because of the off-time nature of some losses, such as an infant’s death, young adults are likely to experience disenfranchised grief as well as contextual factors that interfere with developmental tasks and complicate their grief. Parents’ grief from abortion, miscarriage, stillbirth, sudden unexpected infant death (SUID), adoption, or the birth of a child with disabilities interfere with young adults’ dreams for establishing a family. Other losses, such as those associated with sexual assault, the onset of a chronic illness or disability, widowhood, immigration, the coronavirus pandemic and racial injustice may violate a young person’s sense of fairness and future expectations. In this chapter, we emphasize family-based interventions that draw on the strengths of social support systems and introduce web-based supports currently popular with this age group. The empirical evidence for healing rituals that address forms of disenfranchised grief among young adults is also presented. Overall, our review of the literature identified fewer recent evidence-informed and culturally congruent interventions for bereaved young adults than for other stages of the life course and no interventions addressing the complex losses faced during the coronavirus pandemic.

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Intervention Models and General Techniques Grief is a normal and universal life experience because people form attachments throughout life, and losses usually do not require professional interventions.1 Professionals tend to work with young adults who are at risk of complicated grief due to the significance and traumatic nature of their losses. Social workers and other professionals are trained to assess personal, social, and cultural capacities that may enhance young adults’ resilience during the grief process. The degree to which these strengths are compromised in the face of losses, particularly traumatic ones, often determines the need for and extent of professional intervention. The spectrum of interventions model, originally developed for mental health practice, has been adapted for working with the bereaved.2 It can assist professionals in conceptualizing how to frame grief-related interventions for different levels of risk and stages of the grief process. The adapted model includes grief-related complications and risk and protective factors to determine the most appropriate interventions from among the following: 1. Preventive interventions to reduce risk, increase protective factors, and modify potential adverse outcomes. Examples include early education on grief for all ages and early intervention when a loss is anticipated, such as counseling for divorce or a life-threatening medical diagnosis. 2. Preventive interventions for people with a higher risk of an adverse outcome who are more vulnerable to developing bereavement-related complications. This might be crisis intervention work immediately following a partner’s sudden death or a psychoeducational group for bereaved parents. 3. Early intervention for complicated grief that is targeted toward people who show considerable bereavement-related distress. This could be a professionally facilitated “widow to widow program” or counseling after death to minimize the likelihood of complicated or prolonged grief. 4. Psychotherapeutic and other treatments to address complicated grief and bereavement. Posttraumatic stress disorder (PTSD), clinical depression, and anxiety disorders require specific intervention modalities that may include cognitivebehavioral and interpersonal psychotherapy, therapeutic leave-taking rituals, guided mourning, or antidepressants. The empirical support for many of these interventions, although relatively limited, is reviewed in this and subsequent chapters on working with bereaved adults.

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Social Support Interventions Social support, both formal and informal, is a critical determinant in adapting to loss, and it can serve as a safety net for individuals during the low points of their grief journey.3 The role of social support varies across cultures, and familial support is particularly relevant to the grief process of African Americans and Latinx.4 Society’s discomfort with the intensity of grief often diminishes the informal support available to people who are grieving, particularly when support systems struggle with their inability to “fix” the bereaved.5 I (SS) know a thirty-two-year-old woman whose husband had died of brain cancer who received a letter in her mailbox from a friend asking her to call when she “felt better” because her current sadness made the other couples from their social network uncomfortable. The relationship between reduced social support and increased physical and psychological health problems stemming from bereavement is extensively documented.6 When confronted with a significant loss, changes in informal support may exaggerate young adults’ sense of loneliness and despair and make it more difficult for them to manage life’s seemingly mundane tasks. Feeling that no one else can understand their pain and how it affects all aspects of their life, including parenting and employment, young adults may wonder whether they will ever be able to fully engage in life again. Seeing others in a grief support group who have endured and emerged from similar significant losses can give them hope.

support groups The benefits of bereavement support groups, used alone or with other interventions, are documented in several studies with a range of populations.7 Peers of young adults may lack the experiences and understanding to adequately support the bereaved. Support groups provide an opportunity for young adults to gather and share the challenges of intense grief with others experiencing pain from similar losses. Support groups are a safe space to share grief, to learn about loss through others’ experiences, and to develop effective coping strategies. They also provide social connectedness, particularly when young adults feel isolated due to their grief. In addition, support groups are less costly than individual counseling because several people with similar types of loss can be included in a single group. Support groups enfranchise grievers who are disenfranchised, which can be especially useful for some losses of young adulthood. Disenfranchised grief occurs with many forms of prenatal and perinatal death, SUID, and with abuse and sexual assault. Others often fail to acknowledge the significance of these

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losses, and when this happens, these losses are rendered invisible. National support groups address specific losses that often lead to disenfranchised grief among young adults: Compassionate Friends for bereaved parents, Candle Lighters for families facing childhood cancer, Empty Arms for parents following an infant death, Begin Again for partners after divorce, the Omega Project for families who have a member with disabilities, and Parents without Partners. Hospice programs and many hospitals offer grief support groups that are open to all members of a community, regardless of the type of loss. Despite these benefits, some young adults do not find support groups helpful. There may be logistical barriers to attend a group meeting (e.g., transportation, meeting during work hours, child care issues, and concerns about safety), and some young adults have difficulty expressing their grief publicly or with strangers. Young men are less likely to share emotions, thoughts, and experiences in a public forum, and women and men from cultures that place a high value on keeping one’s emotions private may not be comfortable in this setting.8 Referrals to support groups should consider background characteristics, needs, preferences, and timing. Prospective participants need to feel ready to join a group and perceive this form of support as useful. As is often the case with adults of any age, young adults may resent premature suggestions that they join a support group while their grief is still new, especially when they are experiencing shock, numbness, and disbelief or have support from their informal networks.

online interventions Young adults use the internet for many purposes, including education and social support.9 Whether it is an online message board, a support group, blogs, or even social media, internet services are becoming more popular with each generation.10 Internet bereavement support groups and peer-support webpages, along with internet-based interventions and psychoeducational resources, are growing, partially out of necessity during the coronavirus pandemic.11 Users report that online bereavement support groups offer convenience and an opportunity to gain knowledge, share experiences, help others, and minimize costs.12 Online groups allow for validation and empathy through exchanging stories and sharing advice and education, and these groups provide greater privacy and autonomy than a face-to-face group.13 The impact of online support interventions may be greatest for historically underserved populations who do not typically use more formal supports, particularly those who reside in rural areas with limited access to other resources, and these inequities were made more visible during the coronavirus pandemic.14 Even

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though the “digital divide” has been shrinking, access to online support is still limited in many areas, and distinctive needs based on gender, geographic location, socioeconomic status, disability, age, and race need to be considered by advocates of online communication.15 Few systematic evaluations have been conducted of the effectiveness of online support groups, and practitioners should be mindful of their potential for harm, particularly when designing groups for people with significant pain and emotional vulnerability.16 Although anonymity can promote self-disclosure, if a participant becomes suicidal, for example, it is essential that the practitioner moderating the group be able to contact the person directly and activate local support when necessary.17 The potential for harm online falls into three categories: (1) individuals may experience misunderstandings, excessive dependence, online emotional distress, loss of anonymity/confidentiality, and barriers to external therapeutic expertise; (2) external dyadic relationships may involve displaced aggression, emotional intensity, and premature intimacy; and (3) the group may experience infiltration, hidden identities, and technological failure/complexity.18 The demand for online services is increasing, but professionals should be mindful of the risks to clients and design strategies that minimize harm and reduce barriers to access. They should also test and disseminate results regarding utilization and bereavement outcomes.

therapeutic bereavement groups Potential benefits, clinical experiences, and effective approaches to creating and implementing grief and bereavement groups for a variety of young adult losses are well documented.19 The features, processes, and common techniques followed by such groups are as follows: (1) discuss group norms, (2) introduce participants, (3) describe their personal loss, (4) share pictures and anecdotes, (5) examine the grief process, (6) discuss relevant topics, and (7) terminate. The efficacy of bereavement group interventions with young adults is mixed. For instance, widows of suicide victims who participated in a bereavement group intervention had low overall depression and psychological distress and high social adjustment. But without a control group, whether the intervention was responsible for the changes observed cannot be confirmed.20 Young adult daughters who participated in a bereavement group following their mother’s death reported less depression than did the daughters in a control group. The scores on a grief test of the treatment group and a control group were not significantly different, however.21 In a recent study, group cognitive processing was not as effective as individual work for trauma, which raises questions whether certain situations require greater clinical attention than can be

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offered by a group.22 In a review of the efficacy of group bereavement interventions, participants in group interventions improved more than those in control groups, but problems with early research limit conclusions regarding the efficacy of the groups and help explain the variability in study findings.23 Issues included groups that were too small, limited measurements, a tendency to use depression as the primary outcome, a lack of random assignment, eclectic theoretical orientations, and a lack of information reported for heterogeneous groups. Further research is needed to identify populations that are most likely to benefit from group interventions and to determine a group’s efficacy.

Family-Based Interventions Families are the most significant social group in which grief is experienced, and their capacities to manage major losses vary. Informal supports provide practical help in managing daily tasks, such as meals, child care, and funeral arrangements, especially immediately following a death. As previously noted, death and other major losses commonly lead to secondary losses over time that further affect family well-being. Young adult families may experience adversities resulting from changes in their members’ income, time, roles, and emotional availability. Most families are resilient, however, and members find strategies to support one another and adapt to their loss. Less resilient families experience increased stress and negative consequences from loss. Family conflict, cohesion, mutual support, and communication are important predictors of bereavement outcomes to consider in any assessment of a family system.24 The genogram is a useful exploratory and visual tool for organizing a family history and dates of critical events in a family, tracking the history of previous losses, and identifying family relationships.25 When choosing interventions, professionals need to understand how families construe death and assign meaning to it because this influences how they will grieve.26Professionals should collaborate with families to understand their experience of social and cultural factors that contribute to the ecology of a family’s grief process. Considerations for individual and family-based interventions that take account of culture are (1) culturally congruent assessment components; (2) questions pertinent to beliefs about illness and supports; (3) questions about care of the body after death, beliefs, and rituals; (4) questions about grief and mourning expectations; and (5) guidelines for working with interpreters. To facilitate developmental outcomes in family bereavement while recognizing grief in a sociocultural context, professionals should work with grieving families to examine the fit between their particular circumstances and the bereavement expectations of their community and culture.

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They should consider family, extended kin, family of choice, and fictive kin as resources and when applicable, appreciate the spiritual and psychological continuity between the living and the dead.27 Multiple goals are involved when working with families in young adulthood. Assisting them to establish “stable, shared emotional regulation” and introducing support for continuity, stability, and cohesion may help families integrate experiences and adapt to changes.28 Professionals need to determine when to work with the entire family together, when to work with individual members, and when to bring the family back together again. Each family member will bring different grief reactions to a therapy session, and understanding how these differences affect a family system is essential. I (SS) worked with a family system after the drowning death of a ten-monthold girl, Olivia, in a bathtub. Her mother had left her unattended while she answered the telephone; when she returned, Olivia was nonresponsive in the water. Olivia’s mom was plagued with grief and guilt, but her husband was disengaged from his grief and wanted the family to “move on” as quickly as possible. The other children had significant anger at their mother, which presented at school and at home. I had to divide this family system into smaller groups to work with them before I was able to bring the family together to start their collective healing process. Understanding the impact of family grief and the role of age-appropriate interventions was essential for creating healing and growth.

Healing Rituals A ritual is a religious or secular ceremony to help facilitate some form of closure or healing.29 It involves highly symbolic acts that confer transcendental significance and meaning on certain life events or experiences.30 A funeral or memorial service serves several functions that benefit the bereaved: • • • •

Provides help in expressing grief while offering a structure to contain it. Confirms the reality of the death. Stimulates memories of the deceased. Offers culturally meaningful structured religious and spiritual activities for the bereaved. • Provides social support, reaffirming the new identities of the bereaved and reincorporating them into the larger community. • Reaffirms the social order with reminders of the reality of death and the continuity of the community. • Serves as a rite of passage for the final disposition of the body.

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Rituals and other mourning practices are carried out in cultural contexts that make them meaningful for individuals in racial, ethnic, or cultural groups. Understanding the uniqueness of rituals for individuals from different religions and cultures is central to effective grief support. This involves understanding the cultural differences associated with Christian, Jewish, Muslim, Buddhist, Hindu, and other religion’s funerals. Funerals for Muslims involve gender-specific ritualistic bathing practices. Those for both Jewish and Muslim individuals are typically held by sundown, which is distinct from most Christian services. There are vast differences regarding funeral practices within a religion. Christian funerals range from Catholic to Pentecostal, and customs depend on the affiliation of the family and the deceased. Similarly, Buddhist services may vary with whether the family/deceased is from China or another Asian country. The Everplans website provides a comprehensive overview of funeral rituals for many religious groups.31 Rituals are not always available to the bereaved. For example, young adults experiencing disenfranchised grief are often denied the right to participate in these rituals. People with developmental disabilities or LGBTQ bereaved partners may be discouraged or excluded. In other situations, rituals may not be available. For example, no traditional rituals exist for young parents grieving the loss of a child following an abortion, miscarriage, or adoption. In such instances of disenfranchised grief, and congruent with the resilience model, professionals can help the bereaved use their own capacities, strengths, and needs to design culturally meaningful therapeutic rituals. For instance, taking a photo of a baby who died during pregnancy, receiving a supportive card after an abortion, or having individuals to cry with when an adopted child asks for and prefers a biological parent can assist with disenfranchised grief. The following text box describes the steps for creating therapeutic mourning rituals that may be adapted by individuals, families, and communities for a wide variety of losses.32 Although Rando identified these steps more than twenty-five years ago, they are still relevant today, but a few cautionary statements are in order: 1. Rituals are not for everyone; it is important to determine their suitability and cultural relevance for each family or individual. 2. Rituals can evoke powerful emotions, so there should be time for preparation and processing. 3. Most research evaluating the therapeutic role of rituals has centered on funerals or is anecdotal.33 Efficacy studies of the effects of rituals for multiple forms of loss are critically needed.

 Steps in Creating Therapeutic Bereavement Rituals 1. Assess: The bereaved’ s (a) psychological, behavioral, social, physical, cultural, spiritual, and generational characteristics; (b) prior life experience; (c) psychosocial support; (d) loss characteristics; (e) place in mourning process and associated conflicts. 2. Determine the focus and purpose: What is the ultimate goal of the ritual? 3. Specify the message to be conveyed: To give symbolic expression to feelings and thoughts by identifying the embodied message where possible (e.g., to express anger or love, say good-bye, facilitate expressions of regret or memories). 4. Choose the ritual type: Transition rituals: Mark major life transitions (e.g., marriage/ divorce, birth, death), involving changes in self-image, roles, relationships; helpful for difficulties in letting go of the past. Continuity rituals: Confirm life stability and help persons adjust to change, define relationships, and provide security and protection; these include acts of greeting or farewell (e.g., shaking hands) and collective ritualistic activities coinciding with natural changes experienced by the family (e.g., the family dinner or holidays), which demonstrate that the deceased maintains a place in the mourner’s life. 5. Choose the ritual elements: Who is involved? Who will be included? Who is the focus of the ritual directed to? What symbols hold meaning and will help meet the purpose of the ritual? Examples of symbolic tools include music, invocation, silence, incense, candles. Symbolic acts: What symbolic acts are consistent with the ritual purpose and mourner characteristics? Examples of symbolic acts include burning letters, scattering ashes. Characteristics: What characteristics will make the ritual personally meaningful and therapeutic? Considerations include (a) an appropriate emotional distance; (b) degree of rigidity/

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6. 7. 8.

9. 10.

flexibility given to the mourner; (c) amount of repetition; (d) degree of multidimensionality (e.g., involving sensation, various activities); (e) complexity; (f) completeness; and the (g) blend of closed (i.e., prescribed acts) and open parts (i.e., improvisation). Create the context: Determine the ritual’s location and atmosphere as well as whether other persons will be present. Prepare the mourner: Consider timing, motivation, and orientation of mourners to the ritual. Implement the ritual: See Rando for detailed description of leavetaking rituals that include three phases: preparatory, reorganization, and finalization. Process the ritual: Provide opportunity to explore the impact of the ritual upon the mourner during and after the ritual. Reevaluate and redecide: Evaluate with the mourner the effectiveness of the ritual and determine if further rituals are necessary to achieve established goals.

Source: Adapted from Theresa A. Rando, Treatment of Complicated Mourning (Champaign, IL: Research Press, 1993), 318–31.

Conducting a cultural assessment is part of developing rituals for family systems. Without this assessment, inaccurate assumptions may be made about rituals, or their salient aspects may not be included. For example, in helping plan a funeral for an Asian family, a funeral director would first need to assess their cultural and spiritual practices; some individuals may only want Buddhist practices, whereas others may combine Buddhist and Christian rituals or may include rituals from their home country. Without such assessment, rituals meaningful to the family may not be considered. The text box lists considerations for cultural assessments by professionals. The focus is on interventions with young adults, but similar assessments are relevant for other age groups and can be adapted to take account of particular developmental needs. Professionals can select from or add to this list of questions to be congruent with the practice setting and the background characteristics and capacities of individuals, families, and communities.

 Considerations for Cultural Assessment Preparing for Cross-Cultural Assessment and Communication • Step out of your own cultural frame of reference. • Do your homework before directly contacting cultural groups with which you anticipate working. • If possible, talk to knowledgeable others from the same cultural group. • Do not generalize or stereotype cultural beliefs, values, customs, or rituals; be aware of your implicit bias. • Anticipate variation in communication patterns and expressions of grief. • Learn from individuals or family members whom you are trying to help. • Approach individuals with humility, recognizing that “insiders” have more immediate, subtle, and critical knowledge of their own experiences than anyone else. • Use open-ended questions and encourage people to tell their own stories. • Recognize potential cultural conflicts and respect the family’s decisions. • Understand cultural norms regarding truth telling that may influence a family’s decision to withhold truth about a terminal illness. • Do not predetermine, judge, or hold expectations about what clients or families “ought to do or feel.” • Build on the cultural capacities and strengths of the individual, family, and community. • Determine, identify, or develop interventions appropriate to identified cultural strengths. • Take account of how structural inequalities due to racism, sexism, or homophobia may influence your interactions. • Use and train qualified interpreters.

Assessment Components to Consider Reactions to Loss Manifestations of grief Determinants of grief Grieving rituals Mourning style Values and beliefs Personality

Experiences with discrimination Cultural history Historical losses Interpretation of illness Meaning of the loss Psychiatric history

Religion/Spirituality Social and other supports Family dynamics Intergenerational relationships Financial resources Strengths

Questions Relevant to Illness Beliefs and Supports • How do you define the illness? • What do you call the illness? • What do you think caused the illness? • Why do you think it started when it did? • What do you think your illness does to you (how does it work)? • How severe is your illness; will it have a long or short course? • What are the chief problems for you because of your condition? • What do you fear most? • What can improve your/their condition? • Who can help or support you/them? • How does religion or spirituality help you/them? • What happens to your spirit when you are sick? • What ceremonies or rituals are usually performed for this illness? • What do you or your family need at this time? • How can I/we help you? • Are there community healers, shamans, or others who are needed to help this condition?

Questions Relevant to Beliefs and Rituals Related to Care of the Body After Death • Are there any subjects that are not discussed in your family and culture after a death? • How long is the body kept in the house after death, and what are the household rituals? • What happens when the body leaves the house, and what rituals are involved?

• How is the body finally disposed; what happens to the remains? • What community events, ceremonies, and rituals are appropriate after the body is disposed? Who is invited? • What barriers have you or others in your cultural group faced in performing rituals relevant to care of the body following a death in the United States? • How is death valued in your culture? • What happens when someone dies? Is there a spirit that leaves the body? • Where does a person’s spirit go when he or she dies? • What obligations do the living continue to owe the deceased, or do the deceased have obligations to the living?

Questions Relevant to Grief and Mourning • How do people in your family and culture commonly express grief? • What are the cultural expectations of mourners and those who would help? • How openly and how long do people typically grieve? • What should people wear, and what colors are important? • When and with whom is it appropriate to express emotions? • Who is expected to show emotion, and who is not? • How are outsiders to express their solidarity with family members? • What barriers to grieving have you or others in your cultural or racial group experienced in the United States? • Who tends to be the support system for the grieving? Who supports you? • What is considered acceptable and unacceptable grieving in your family? • When does the mourning period end? • What periodic rituals exist, and how long do they last? • What is an outsider’s appropriate response to the periodic rituals?

Guidelines for Working with Interpreters • Use qualified trained interpreters rather than children, relatives, or friends of the interviewee. • Conduct a preinterview meeting with the interpreter to clarify goals and roles. • Establish a good working relationship with the interpreter. • Allow enough time for the interpreted session.

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• Make sure the interpreter is acceptable to the interviewee. • Address yourself to the interviewee, not to the interpreter. • Communicate only what you want all present to hear. • Use words, not gestures, to convey your meaning. • Speak clearly and in a regular tone of voice. • Avoid jargon and technical terms. • Keep utterances and questions concise, pausing to permit time for interpretation. • Ask one question at a time. • Expect the interpreter to interrupt when necessary for clarification and to take notes. • Be prepared to repeat yourself in different words if your message is not understood. • Conduct a brief postinterview meeting with the interpreter. Sources: Victor Baez and Kevin Ann Oltjenbruns, “Diversity Within Diversity: Strategies for Developing Insight Among Professionals,” The Impact of Art and Culture on Caregiving, ed. John D. Morgan (New York: Routledge, 2019), 32–50; Donald P. Irish, Kathleen F. Lundquist, and Vivian J. Nelsen, eds., Ethnic Variations in Dying, Death and Grief: Diversity in Universality (New York: Taylor & Francis, 2014); Kenneth J. Doka and Joyce D. Davidson, eds., Living with Grief: Who We Are How We Grieve (New York: Routledge, 2014); Emina Hadziabdic and Katarina Hjelm, “Working with Interpreters: Practical Advice for Use of an Interpreter in Healthcare,” International Journal of Evidence‐Based Healthcare 11, no. 1 (2013): 69–76; Refugee Health, “Refugee Health Data,” accessed September 2, 2019, http://www.refugeehealthata.org/; National Council on Interpreting in Health Care (website), accessed September 5, 2019, https:// www.ncihc.org/.

Interventions for Specific Losses Prenatal and Perinatal Death Perinatal death refers to miscarriage, abortion, stillbirth, and SUID. Domains to consider when assessing loss related to perinatal death include, but are not limited to, the following: 1. Sociocultural: communication patterns, family dynamics, beliefs about rites of passage and appropriate behavior, traditions, and rituals important to the family.

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2. Spiritual: belief in a higher being, religious needs, or spiritual distress. 3. Psychological: grief experience, cognitive understanding of what has transpired, and emotions. 4. Developmental: how the loss may affect family members’ developmental needs and tasks. 5. Physiological: medications that may dull perception of events, health problems, fatigue from difficult labor, or pain from a cesarean section. Understanding the distinctive meaning of the loss to the parents and other family members is an essential assessment component. For example, depending on the nature of the baby’s death and the family’s belief systems, they may regard the death as the loss of a possession, a dream, a symbol (e.g., of independence), a new life relationship, or a relief. One of the most significant challenges is the ambiguity associated with perinatal loss.34 This can have ramifications for relationships within the family and ripple across time, further affecting bereaved parents’ mental health and self-esteem.35

Abortion The grief and mental health challenges associated with induced abortion are well documented.36 As described in chapter 8, a young woman’s decision regarding abortion is primarily related to personal, financial, and emotional resources. After an abortion, women often experience traumatic grief, guilt, regret, emptiness, and anxiety about future pregnancies.37 In a study of traumatic grief experienced after an abortion by college-age women, the development and testing of evidence-based interventions to address such trauma was strongly encouraged. In fact, the authors labeled the lack of knowledge around this form of trauma a public health concern.38 Interventions for women before and after abortion are readily available online from blog posts, national talk lines and services, and online support groups, although caution must be exercised in determining the source and efficacy of online resources. Highly regarded organizations that provide abortions, particularly Planned Parenthood, have updated resources for therapeutic aftercare on their websites.39

Miscarriage Miscarriage is often experienced as disenfranchised grief, which limits supports available to parents. Supportive interventions include acknowledging and validating the loss because its meaning influences the bereaved’s mourning process.40 Similar to other types of death, men and women frequently

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have different grief reactions following a miscarriage and require targeted interventions. The language used around miscarriage often results in individuals feeling alone and trying to hide their pain. This can occur between parents because each person frames this loss differently. The emergency room is often a frontline service for women experiencing a miscarriage, and social workers and religious figures should be available to offer counseling.41 Interventions should focus on meaning-making through counseling, education, and honoring the loss, including addressing the ambiguity in emotions that typically accompany a miscarriage for all family members.42 Cultural distinctions as well as past experiences with health care providers should be addressed in the early intervention process in hospitals. African American women who had a miscarriage or another prenatal or postnatal loss were found to use inner resources for self-help strategies to manage their personal reactions, others’ responses, memories of the baby, and subsequent pregnancies.43 Their strategies suggest a need for an intervention framework that supports the strengths of different racial and ethnic groups and recognizes Black and Brown people’s experiences with discrimination from health care providers. When women leave a hospital after miscarriage, supports are essential as they continue to grieve and try to adjust to life without the pregnancy and anticipation of a baby’s birth. Women may turn to support groups offered through a hospital system, a local Planned Parenthood chapter, or online.44 Evaluation of the effectiveness of support groups for women following a miscarriage, particularly online groups, is essential.

Stillbirth and Neonatal Death An assessment of parental grief after a serious perinatal diagnosis or death (e.g., stillbirth) should consider risk factors such as the degree of emotional, personal, or financial investment in the pregnancy (e.g., multiple in vitro fertilizations), prolonged infertility, mother’s age, medical explanation for the death, delayed diagnosis, previous losses, and preventable nature of the death. Fathers (in heterosexual relationships) as well as mothers are greatly affected by stillbirth and neonatal death (death occurring within the first twenty-eight days of life). Fathers often feel pressured to protect their partner but find it difficult to do so when they also are distressed. Bereaved fathers need grief support immediately after a stillbirth or neonatal death and report appreciating the tokens of remembrance that they receive in the hospital (e.g., photos, hand and footprints, a lock of hair, and identification wristbands).45

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Standard protocols suggest empathic communication, understanding, and interdisciplinary team member support because these may influence the parents’ adaptation following stillbirth or neonatal deaths. A holistic approach to help families understand what is occurring is recommended, beginning with the diagnosis of a stillborn. Evidence-informed guidelines for how to address a stillbirth, starting with diagnosis and ending with after care support, are available.46 In instances of neonatal deaths, hospital staff often encourage parents to participate in the direct care of their critically ill infants until the time of death and after. Although parents are urged to bond with their deceased infant, evidence of the benefit of this practice is mixed. One study reported that women who held their stillborn infant became more depressed than did those who only saw their infant, and women who had seen their stillborn infant were more anxious and had more symptoms of PTSD than those who had not.47 It should not be assumed that failure to see and hold a deceased child can adversely affect parents’ mourning. A recent review of qualitative studies also identified mixed results regarding seeing and holding the baby. The health care provider’s role in navigating the bereaved family’s experience around seeing and holding their dead baby was critical, pointing to the need for education of hospital staff to help families during this time.48 The context and conditions under which more negative outcomes are experienced from seeing and holding an infant require further examination, with attention to the intensity and form of support, preparation, and follow-up care provided to parents along with cultural considerations. Overall, increased efforts to explore parents’ wishes and to talk to them about possible consequences would enable them to make informed choices regarding bonding with their baby. Hospital programs to help families bereaved by perinatal deaths generally draw on the skills of nurses, social workers, other medical personnel, and pastoral counselors. Social workers often offer supportive grief counseling and essential information, such as burial procedures and hospital regulations.49 Most hospitals provide information packets to families regarding autopsies, funeral or cremation options, the nature and expressions of grief, managing friends and relatives’ reactions, help for siblings, and decisions regarding another pregnancy.50 Anecdotally, parents state that bereavement support groups help them feel less alone, learn from others, and normalize their experiences.51 A grief intervention program that trained social workers and psychologists to give information and support to parents, affirm the baby’s existence, encourage parents to express their grief, and notify parents’

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social networks was found to reduce their distress, particularly for parents at high risk of complicated grief.52 Similarly, a brief internet-based cognitivebehavioral intervention with parents after prenatal loss significantly reduced symptoms of posttraumatic stress, prolonged grief, depression, and anxiety and was cost-effective.53 How well such interventions meet the needs of bereaved parents from different marginalized groups has not been tested. A better understanding of the cultural, spiritual, racial, ethnic, and sexual identity factors that influence bereavement would help promote the development of effective interventions.

Sudden Unexpected Infant Death The grief associated with SUID is often complicated by guilt and a sense of responsibility shrouding its unknown cause, and families are even more devastated when they are questioned by police, the medical examiner’s office, or the coroner who arrive at their home. SUID death investigations are legally required in all states, and often include a doll reenactment to help investigators further understand the sleeping surface and the environment of the child prior to and when the infant was found dead. This practice alone can be traumatic for families, particularly when there are questions regarding the infant’s safety through cosleeping and other care strategies that are deemed unsafe for children under age one. First Candle is an online website that helps families identify safe sleeping practices with the goal of eliminating risk factors before age one. Professionals can help parents adjust to a SUID by providing accurate medical information and empathic support. A home visit and education as early as possible can assist families to understand what possibly caused the baby’s death.54 Professionals need crisis intervention skills along with knowledge of family dynamics and the effects of trauma to respond effectively to families grieving a SUID.55 Support and validation by others appears to be key in addressing grief, particularly for families experiencing guilt about their infant’s death. Mothers describe social support, whether formal or informal, as one of the primary factors that facilitate a healthy grief process.56

Adoption The profound losses experienced by birth mothers, adoptive families, and children have been discussed in earlier chapters. Even though “open adoption” may minimize this loss through opportunities to maintain a connection between the birth mother and the adopted child, adoptive parents may experience loss when their child appears to prefer the birth parent. Moreover, there

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are challenges associated with how people distinguish their roles whether the adoption is open or closed. My (SS) daughter often tries to clarify whether she is discussing me as her mom or her biological mom in China. The ambiguity of her adoption has been something she has worked through since age two. The questions associated with why she was not “wanted” by her family, if she had siblings, or if her mother is still alive are part of her grief process.

The process leading up to open adoption is surrounded by ambiguous loss. After potential adoptive parents resolve the reasons for the adoption, they typically wait a long time for confirmation of the adoption. Adoption social workers play a critical role in helping to ease the anxiety and fear over something happening to stop an adoption. Gitterman and Knight have called upon the field of social work to develop interventions around ambiguous loss related to adoption; they recommend creating space to verbalize loss, engage in creating meaning, and remain in some way connected to one’s family of origin.57 Boss suggests several social work strategies to address ambiguity: recognizing the ambiguity and that it may not make sense, meaning-making, creating a new identity around the loss, and taking account of attachments to people and things that others may not recognize.58 These strategies can be helpful for families, both adopted and biological, in navigating their grief.

Parents of Children with Disabilities Parents of children with developmental disabilities may grieve many times beyond the initial diagnosis; these markers for grief include the age when the child should begin walking or talking; occasions when siblings surpass the child or when alternative placement is considered; entry into school; management of behavioral problems; onset of puberty; celebration of the twenty-first birthday; and when guardianship is sought.59 From the beginning of the diagnostic process through the actual diagnosis and onward, parents experience grief.60 In addition, parents may encounter barriers to obtaining help in the present and in the future.61 Supportive interventions for families should address the following basic needs: 1. Information about the child’s condition, expectations, and early referrals to developmental programs. 2. Positive feedback about the child’s development and the parents’ contributions to their child’s development.

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 Internet Resources for Parents of Children with Special Needs or Disabilities www.understanding.org https://www.smartkidswithld.org/ https://sites.ed.gov/idea/parents-families/ https://www.parentcenterhub.org/ www.pbsparents.com

Organizations That Offer Online Resources Autism Society (https://www.autism-society.org/) Council for Exceptional Children (https://exceptionalchildren.org/) Easter Seals (https://www.easterseals.com/) Family Voices (familyvoices.org) Family Hope Center (familyhopecenter.com) Family Resource Center on Disabilities (https://rarediseases.org /organizations/family-resource-center-on-disabilities/) National Association of Parents with Children in Special Education (http://www.napcse.org/) National Center for Learning Disabilities (https://www.ncld.org/) Pacer Center (https://www.pacer.org/) Parent to Parent USA (https://www.p2pusa.org/)

3. Acknowledgment and validation of the parents’ grief. 4. Sensitive and empathic counseling to address thoughts, feelings, and worries. 5. Referrals and linkages to community agencies or support programs to meet the family’s needs. Interventions for families of children with disabilities are typically focused around the core areas of offering instruction and behavioral and interaction support.62 Although these programs are not grief specific, they attend to families’ grief by providing supportive professionals to address parents’ fears and worries and help children develop skills needed for as

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productive a life as possible. Interventions are also needed to help parents express the joys of loving and raising a child with disabilities. Some of these interventions are also salient for parents caring for children with physical disabilities or life-threatening illness. For example, a family with a son born with Duchene’s muscular dystrophy is faced with the reality that this rare disease progresses throughout childhood, resulting in death in the late teens or early twenties. The professional support team assists parents in managing the extent of physical changes occurring in their son, learning how to respond to their son’s questions about “why is this happening to me,” and preparing the family system for the death that will come (SS). Online resources are another forum for information and support for parents of children with intellectual disabilities; some are listed in the text box. Cultural variability can be found in the meanings of disability, preparation for handling a disability, and family members’ capacities and competing needs. This points to the need to develop culturally appropriate assessment and interventions.

Sexual Assault With greater public discourse about violence, particularly sexual violence against women, there is increased focus on how to address the trauma experienced by women who have been sexually assaulted. This trauma is related to survivors’ underlying losses and suffering. Chanel Miller’s autobiography, Know My Name, describes her sense of loss and hopelessness after the assault; she had to relearn who she was and come to terms with what had occurred. In other accounts, losses associated with sexual assault can be exacerbated by therapists who do not understand the totality of the experience and the effects of assault can reverberate throughout the life span. Sexual assault survivors are “forever changed.”63 Prevention initiatives (e.g., institutional changes, legal action, working toward gender equality), treatment strategies (e.g., counseling and psychotherapy for people who have been assaulted), and legal action generally do not make explicit the grief experienced. The most commonly employed interventions for sexual assault in young adulthood include prolonged exposure, anxiety management training, cognitive-processing therapy, and cognitivebehavioral therapy. Regehr and colleagues contend that these interventions can reduce the negative psychological effects of rape, especially depression and PTSD.64 However, much of the intervention research is associated with trauma, not specifically with grief, even though loss and grief are critical

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subtexts. Similarly, in a review of prevention-based interventions for sexual assault, none contained explicit content regarding loss or grief even though related topics were noted.65 In her personal account, Heather Love discussed the critical role of therapists in addressing loss and grief from sexual assault.66 Therapists’ knowledge of trauma, triggering language and appropriate interventions, is essential in helping women examine how assault has affected them. The lack of interventions that take account of feelings of loss and grief can create challenges in all other aspects of the survivor’s life, including interactions in the workplace.67 An innovative, solution-focused approach to crisis intervention that emphasizes survivors’ strengths has been used for a variety of situations involving loss, including interpersonal violence. The text box lists the necessary steps and accompanying questions and techniques in solution-focused interventions. This approach is similar to the resilience model and draws on survivors’ personal and social capacities. It also is appealing given the immediate needs (e.g., crisis nature of assault) and psychological adversities (e.g., focus on solutions rather than self-blame) of young adults experiencing sexual assault. Research is needed to determine who is most likely to benefit from a solution-focused approach and how it might affect their grieving (e.g., prevent complicated grief) and critical outcomes. There is also a need to determine its effectiveness with young adults with diverse cultural, racial, ethnic, and sexual identities.

 Solution-Focused Approach to Crisis Intervention Step

Description

Techniques and Example Questions

1. Joining.

Engage the clients and establish a positive working relationship. Determine their safety needs.

Skills include actively listening, identifying, and reflecting the clients’ feelings (i.e., empathy); offering support and acceptance; and tracking, matching, and mirroring clients’ nonverbal communication.

Help clients describe 2. Defining their primary “problems” concerns. (i.e., concerns identified by client).

Use the words issues or concerns rather than problems. What kinds of concerns are you having now? Choose your words carefully to reinforce an internal locus of control (e.g., do not ask, What brings you here today, which reinforces an external locus of control). Help clients prioritize their concerns: You have mentioned several concerns you are having now. Whenever possible, I find it helpful to work on one at a time. Which of the concerns you just mentioned do you want to focus on first in our work together?

3. Setting goals.

Goals describe how clients will feel, think, or behave differently, and they should set them. Goals represent a future reality that does not contain the presenting problems.

If the client states a goal in negative terms (e.g., I want to feel less pain or I don’t want to be depressed), help him or her reframe it as a positive goal (e.g., What do you want to be feeling instead?). Encourage more detailed description. The “Miracle Question”: Suppose that after our meeting today, you go home and go to bed. While you are sleeping, a miracle happens and your issue is suddenly dealt with, like magic. The concern is gone. Because you were sleeping, you don’t know that a miracle happened, but when you wake up tomorrow morning, you will be different. How will you know a miracle has happened? What will be the first small sign that tells you that a miracle has happened and that the issue is resolved?

4. Identifying solutions.

Help clients devise strategies to reach their goals, based on their strengths and capacities.

Use exception questions about past successes to identify solutions, and scaling questions (e.g., rank this concern and goal on a 1 to 10 scale with a 1 as the worst possible outcome and 10 as the most desirable outcome), to help clients quantify and evaluate their progress.

5. Developing and implementing an action plan.

Create tasks or homework that draw on thoughts, feelings, and behavior that clients have used in the past or are using now.

Formula First Session Task: Between now and the next time we meet, we[ I] would like you to observe, so that you can describe . . . what happens . . . that you want to continue to have happen. Have clients keep track of current successes and predict behaviors that they can control. Invite clients to pretend that the miracle has happened and to do everything they would do if the miracle had happened.

6. Termination and follow-up.

Review goals, assess readiness for termination, and anticipate future setbacks.

Use scaling questions to invite clients to assess their progress and to anticipate setbacks.

Seek permission to follow up at future date to see how they are doing. Source: Gilbert J. Greene, Moe Yee Lee, Rhonda Trask, and Judith Rheinscheld, “Client Strengths and Crisis Intervention: A Solution-Focused Approach,” Crisis Intervention and Time-Limited Treatment 3, no. 1 (1996): 43–46.

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Young Widows and Widowers Widowed people of all ages usually manage their grief without professional intervention. However, as noted in chapter 8, young widows often face societal pressure to move forward with their lives quickly, thereby not allowing sufficient time to attend to their grief. Societal expectations, developmental tasks, and the off-time nature of widowhood in young adulthood may increase this sense of pressure. For example, single-parent widows may have inadequate time to grieve due to changes in their roles and responsibilities that include loneliness, parenting demands, employment, child care, dating, and remarriage.68 Inadequate time to grieve occurred during the coronavirus pandemic when formerly healthy young adult partners died alone in intensive care units and public mourning rituals were limited. Supportive community-based interventions to help widows with children through such transitions is essential. Local hospice organizations may have information about support programs for young widows and widowers. Examples of bereavement interventions for spouses or partners, including those for gay and lesbian partners, are brief dynamic psychotherapy or counseling; vocal expression sessions; mutual-aid support groups; crisis intervention at the individual, family, or group level; and peer counseling. However, most of these interventions focus on middle age or older widowed people or do not consider age in their evaluations. Another limitation is that studies of support group interventions specifically for young adults are generally descriptive rather than evaluative.

Immigration The Trump administration’s zero tolerance policies toward individuals and families immigrating to the United States increased the grief and trauma experienced by immigrants. Many social work and health care professionals and policy advocates do not link policies such as family separation to loss, but these policies cause grief for individuals, families, and communities as they attempt to create new lives in new countries. Interventions specific to young adult immigrants have been slow to develop other than culturally appropriate services through case management, counseling, school support, and family assistance. However, greater attention is being given to the role of agencies working with immigrant family systems. In a joint collaboration between Safe Start and the Office of Juvenile Justice and Delinquency Prevention,

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recommendations were given to organizations to assist them in being more responsive to immigrants’ needs.69 The following steps are suggested: 1. Screen clients for trauma and other mental health needs due to exposure to violence. 2. Refer families for mental health assessments that examine acculturation stressors. 3. Plan interventions for individuals and the entire family system that are culturally appropriate and trauma based. 4. Educate staff on immigrations laws, policies, and resources. Complex issues must be addressed when counseling immigrant individuals and families, including using professionals who are fluent in native languages and recognize the multitude of issues associated with immigration. This also requires an understanding of the multiple systems at play in individuals’ lives and how culture, race, ethnicity, socioeconomic conditions, and history interact and influence them. Similarly, professionals need to take account of individuals’ fears that providers, perhaps inadvertently, might involve legal authorities who may contact ICE or other immigration officials. Professionals must be mindful of the cultural meaning of requesting assistance and how “problems,” such as mental health, trauma, and loss, are understood within the immigrants’ culture. Finally, we encourage professionals to consider the power of storytelling within cultures, recognizing that narrative therapy or cognitive-behavior therapy may feel safer than other strategies as they allow for natural cultural patterns of sharing stories to emerge.70 It is critical that professionals maintain a solid therapeutic relationship with immigrants and their larger family systems, if applicable, because trust can sometimes wane in the face of structural and communication barriers.71

Police Brutality Police brutality toward Black and Brown communities in the United States dates back to the 1800s and is riveted in the fabric of communities who have experienced and witnessed such trauma. The deaths of Michael Brown, Freddie Gray, and countless others led to demands for change, but the deaths in 2020 of George Floyd, Amhaud Arbery, and Brianna Taylor catalyzed the Black Lives Movement and sparked weeks of protests all around the country, calling for greater accountability and expressing collective grief. Communities of

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color experience complex grief because recent events open up long-standing patterns of racial injustice and disenfranchised grief associated with deaths at the hands of law enforcement.72 A key part of assessment and treatment with young African American men who experience trauma from interactions with law enforcement is the management of symptoms related to these interactions and their triggering effects on individuals.73 Labeling these experiences “traumatic reactions” highlights the gravity of the negative interaction and the series of losses associated with identity, safety, and security in their environment. Narrative approaches, combined with psychoeducation and critical consciousness, may change perspectives around interactions with law enforcement, which can reduce individuals’ trauma and grief. Other strategies are identified as beneficial for addressing the grief and trauma following the death of sons due to police brutality. An analysis of letters written by mothers to their deceased sons revealed how mothers became engaged in community efforts to change the justice system: They found that turning to action helped them manage their grief.74 There is an emerging and critical need for professionals to design and evaluate interventions with youth experiencing racial trauma and the loss and grief associated with police brutality and other types of racial injustice.

Summary Individual, family, and community capacities, along with the extent of bereavement complications in young adulthood, are central considerations for targeting the most appropriate interventions for losses associated with perinatal and prenatal death, adoption, birth of a child with disabilities, sexual assault, widowhood, immigration, police brutality, and associated trauma Developmentally congruent interventions commonly used with bereaved young adults include various support, group, family, and online interventions, and the intentional use of therapeutic ritual. However, relatively few interventions have been systematically evaluated in treatment outcome studies, and methodological problems limit the validity of conclusions. For many of the losses of young adulthood, interventions provided are purely descriptive or have not yet been proposed. This is certainly the case in terms of interventions for young adults grieving the multitude of losses associated with the coronavirus pandemic. Investigations documenting cultural variability in loss and grief emphasize the need for culturally targeted interventions, but

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few studies have evaluated their effectiveness.75 We presented practice principles and recommended strategies for young adults with loss, but additional research is essential to test their efficacy. This is especially critical as we consider assessment of race, culture, sexual and gender identity, and disability and how such characteristics can change the course of interventions for grieving young adults.

10 Loss and Grief in Middle Adulthood

 Middle adulthood is often marked by the death of a partner, parents, sibling, or an adolescent or young adult child; divorce; and caring for elders or adult children with a chronic mental illness or disabilities. We discuss some of these losses in the context of developmental considerations and a resilience framework. A limitation of the research on midlife is that it is largely based in Western societies and on white samples. Indeed, midlife challenges may be a construct relevant only to developed societies that have increasing life expectancies.

Developmental Considerations Middle adulthood (or midlife) encompasses the ages between forty-five and sixty-five or even seventy.1 There is extensive individual variability in terms of health, well-being, and functioning in midlife, so this age range may be too wide. In addition, the beginning and later phases of middle adulthood have markedly different age-related changes. Moreover, variations by race, gender, sexual orientation, gender identity, and social class mean that the age boundaries of midlife are fluid, and middle age may be an unstable time.2 Losses in midlife may be complicated by developmental tasks typical of this time of life, and these tasks may be more important than chronological age in describing the grief processes experienced by adults in midlife. Tasks of middle adulthood include recognizing their mortality; adjusting to age-related changes such as declines in energy, vision, or hearing; redefining parenting roles with adult children; accepting that they may have reached the peak of their career; abandoning earlier dreams; coping with disruptions of partner relationships; and taking responsibility simultaneously for children, parents, and community well-being. Our discussion also considers some biological 243

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aging processes such as hormonal changes, subjective perceptions of aging, and historical, generational, and cultural changes. Erikson defined generativity—the ability to transcend personal interests and be concerned for future generations through leadership, mentoring, and creativity—as the primary midlife challenge.3 Most midlife adults want to feel a sense of efficacy and “make a difference.”4 A mainstream expectation in the United States is that midlife adults will become more engaged in responsibilities toward others, with opportunities for generative behavior varying by gender, socioeconomic class, race, ethnicity, and sexual orientation. According to Erikson, those unable to contribute to future generations or community well-being may become self-absorbed, stagnate, and out of sync with partners and peers. Levinson described a developmental challenge in middle adulthood as finding balance in one’s life.5 Midlife adults often explore previously neglected aspects of their lives through career changes, relocation, new partners and friendships, or voluntarism. For those with adequate resources, middle age can be a time of creative growth, especially if adult children become financially independent. Some theorists now characterize midlife as a pivotal period for balancing growth and decline, linking earlier and later periods of life, and integrating youth and old age for individuals and across generations.6 Midlife is a distinct period characterized by a balance between developmental gains (e.g., self-esteem, emotional maturity) and losses (e.g., reduced energy, changes in physical appearance, greater risk of illness).7 However, our current economic conditions, especially health care and housing costs, unemployment or working from home with limited social interaction and lack of routine due to COVID-19, and cuts in retirement benefits, mean that many midlife adults do not have choices that were available to more affluent baby boomers. How adults experience midlife also varies with their culture and experiences with systemic racism, although research on cultural, racial, and ethnic differences is limited. Some stresses may cluster in midlife, such as multiple role demands or financial pressures due to divorce, job loss, or health problems. Depression may be at its height for those experiencing financial strain, and the suicide rate is higher for those in midlife than for those in other life stages, especially among white middle-aged men. However, most middle-aged adults do not experience inner turmoil or angst about getting older, and for many the midlife transition is relatively calm. Contrary to misrepresentations of midlife experiences as crises, such as the empty nest syndrome, well-being often increases, although some parents experience their children leaving home as a

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loss.8 Middle-aged women may experience feelings of loss with menopause, but most women do not view it as a significant psychological or physiological life transition and cope with these changes with little difficulty.9 In summary, although some adults find midlife issues difficult, most adapt in a resilient manner. They typically draw on previously established personal, social, community, and cultural capacities as they adjust to developmental changes. They can choose to dwell on what is past and gone or renew their appreciation for life and seek new self-understanding. Although they may need to let go of some dreams related to work or family, many reassess their accomplishments, aiming for inner satisfaction, fulfillment, and meaning as they determine future directions.10 Regardless of how middle-aged adults view the past and present, most are keenly aware of their mortality and that their life is probably half over, an awareness intensified by the coronavirus pandemic. As a result, they may feel a sense of urgency about what they want to accomplish and become more selective about their relationships and how they spend their time and resources.11

Resilience Background Characteristics In midlife, individuals typically are financially able to handle loss, such as caring for older parents, although this may be shifting as a result of the coronavirus pandemic and increasing racial and economic inequality. Women who remained at home to care for children may reenter the labor market at midlife. More men and women are pursuing second and third careers in midlife, and they may face divorce, unemployment, or loss of anticipated retirement income, so middle adulthood can also be a time of reduced financial resources and delayed retirement. Women’s financial capacities will vary depending on whether their employment was interrupted by caregiving responsibilities and by the fact that women generally earn less than men and have less access to retirement benefits. The coronavirus pandemic has affected both women and men in terms of loss of jobs and income and disrupted careers, although women are disproportionately affected by unemployment and responsible for child care. People of color also face increased economic and health inequities in midlife.

Personal Capacities Declining energy is often a noticeable change in middle adulthood, even for healthy adults. In addition, some adults become less physically active, and some develop chronic or life-threatening illnesses and face increased rates

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of functional disability and death. African American males have the highest death rates at midlife, mainly attributable to accidents and homicides.12 Cognitive function typically does not decline, although some worry about longer reaction time and occasional lapses in short-term memory. Contrary to these concerns, the growth in brain connections allows middle-aged adults to make better decisions and engage in creative problem-solving, and some begin to use both the left and right side of the brain.13 Others cultivate protective factors that promote resilience, such as an engaged lifestyle, physical exercise, positive beliefs, and feeling a sense of control.14 Although individual differences in changes during midlife are salient, personality traits are generally stable. Internal locus of control and sense of mastery tend to be high and promote effective coping with negative life events, such as the death of loved ones.15 As midlife adults seek ways to enrich the personal meaning of their life, spirituality but not necessarily religious affiliation often fosters well-being.

Social Capacities Midlife is one of the most socially active stages of the life span, and multiple roles and pursuits are influenced primarily by sociocultural events rather than by biological ones. As with earlier life stages, social support is essential to well-being.16 Women have the largest and most diverse social networks at midlife. Moreover, women typically deepen their relationships, focusing on a few close friends as confidants.17 With the increase in multigenerational families, women often are “in the middle” (the “sandwich generation”), being responsible for both younger and older family members, which may strain their social capacities to deal with loss.18 Middle adulthood in most Western societies is also a time of extensive community capacities, such as participating in neighborhood activities and political and volunteer work.19 How their communities respond to losses faced by midlife adults typically affect the outcome of their grief.

Death of an Adolescent or Young Adult Child Grief reactions of parents in middle age parallel those of younger or older parents who face the unimaginable death of a child, whom they believed would outlive them. Regardless of age, race, or culture, a child’s death is the greatest loss a parent can suffer, and this loss often has traumatic and devastating life-altering effects.20 Early research suggested that a partner’s death was the most stressful event, but recent research confirms that a child’s death results in more intense and persistent grief, despair, depression, threats to identity,

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poorer health and well-being, and elevated risk of mortality, especially for mothers, than does the death of a partner, parent, or sibling. Having looked forward to their children’s accomplishments across the life course—graduations, marriages, and births of grandchildren—their child’s death destroys parents’ assumptions about themselves and the world. Bereaved parents with physical health problems are more likely to have co-occurring mental health difficulties (e.g., depression and anxiety), although some health problems may be a function of increasing age. For example, bereaved mothers score higher on depression measures than bereaved daughters or widows, reporting sadness, sense of failure, guilt, suicidal ideation, negative self-appraisal, and employment difficulties.21 An adolescent’s or young adult’s death is typically unexpected, a result of an accident, drug overdose, homicide, suicide, or even terrorism and war, and compared to a child’s death due to illness, may create a greater sense of disbelief. Bereaved parents experience a searing, wrenching, almost physical pain—as if part of them has been cut off—that is deep, pervasive, and enduring.22 Feeling vulnerable, they may be overwhelmed by a sense of dread, terror, and a loss of control or “going mad.” Feelings of chaos tend to be most intense when the death is unanticipated or carries a social stigma (homicide, suicide, or HIV/AIDS).23 A father whose eighteen-year-old son was killed in a train wreck wrote: “With reality comes pain, and the pain, when it comes, is stunning. The pain is actually physical, mostly in your stomach and chest. Your chest feels crushed and you can’t seem to catch your breath. I remember feeling pinned like a butterfly, or somehow eviscerated.”24 The intensity of pain is partly due to the unnatural order of things. Parents expect their children to outlive them, and a child’s death shakes parents’ belief in fairness and defies the expected order of life events. It challenges basic existential assumptions.25 When midlife adults confront their own mortality, they assure themselves that they will live on through their children. A young adult child represents a foundation on which parents have built their life and reflects their investment and genetic, reproductive value. Parents hope their children will live out their lives, fulfill their dreams, and, in doing so, carry on the parents’ legacy. A young adult child’s death breaks the progression of genealogical immortality.26 This sentiment is captured by the description of a father whose twenty-one-year-old daughter died in an apartment fire: “In addition to his only child, his fatherhood and all that it meant has vanished. He has no lineage going out from him into the future. He still has a lingering fatherly pride and love, but the object of it is gone, and he stands on a severed branch of the family tree.”27

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Sudden untimely death also challenges parents’ sense of competence; parents are expected to provide opportunities for their children and, most important, protect them.28 Their child is a primary object of attachment, and many parents still feel psychologically responsible for young adult children and worry about their well-being. If parents feel they failed to keep their child safe, death threatens their self-worth and their reason for living. The meaning of parenthood is derived from caring for the child, regardless of age, and parents may question the meaning of even everyday tasks.29 Past internal working models (e.g., “If we love our children enough, we can keep them safe”; “If we are good people, nothing bad will happen to us”) and worldviews that once explained what is happening within the family are no longer relevant. A wide range of emotions accompanies the parent-child attachment bond over the life span: love, cooperation, hope, disappointment, anger, and ambivalence. Although a child’s death ends the world as parents have known it, the significance of their attachment does not end.30 Attachment in parental grief may emerge as intense wishes to soothe their deceased child, accompanied by guilt and helplessness for not having kept their child safe.31 Parents insecurely attached to their deceased child tend to have higher rates of depression and complicated grief symptoms than those with strong attachments.32 A child’s death becomes the dividing point between one set of possible futures and another, one era and another. Some bereaved parents describe a sense of being “like most parents but not being like them,” drawing a line between when the family was happy and when happiness ended (although bereaved parents may eventually experience happiness). The impact of a child’s death lasts a lifetime, although its meaning alters as parents reevaluate what they have lost and how they have changed.33 These thoughts captures how a child’s death is always present, even when parents become accustomed to the child’s physical absence: A bereaved father noted: “If grief is resolved, why do we still feel a sense of loss on anniversaries and holidays, and even when we least expect it? Why do we feel a lump in our throat even six years after the loss? It is because healing does not mean forgetting and because moving on with life does not mean that we don’t take a part of our lost love with us.” A mother wrote: “Being a bereaved parent will always be a part of our lives—it just won’t be the most important or only part.”34 Nine years after her son’s death, a mother acknowledged: “These days we hardly ever cry. . . . It’s not, as I once feared, that we’ve finally damaged our

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eyes. We’ve just learned to live with the pain. That is, like a shadow, it goes where we go. Friends say they don’t know how we do it, live this way. Is there a choice? we ask.”35 My (SS) grandmother’s nineteen-year-old daughter Jean died when hit by a car. As my mom reflects on her childhood, she feels their family was never again as happy because my grandparents struggled to recover from guilt and despair at not being able to save their daughter. Jean’s birthday, holidays, and other celebrations were always clouded by pain that never subsided.

Although pain and suffering diminish, they never disappear.36 Questions about the meaning of life or feeling that life has lost all meaning are intensified with a child’s death, and parents may question their past, present, and future.37 Grieving parents face multiple ongoing losses; in addition to losing their child, they also lose their identity and traditional roles. Part of the parents’ life energy dies, shaking their personality to its very roots.38 A young adult child’s death is especially complex because parents have invested so much time, love, energy, and financial resources in this relationship. Parents may have begun to relate to their child as an adult with a unique personality, and this transforms their loss into a combination of a lost actual relationship, including with their child’s social networks (e.g., classmates or teammates), and a lost potential future relationship with their child. Parents also may feel that the part of them that was innocent and optimistic died with their child, even while, paradoxically, parents continue to live. The indifference to so much of what used to matter, the absence of positive feelings, and the continuing sense of loss make the metaphor of “part of the self dying” particularly apt.39 Some parents describe a detached sense of “going through the motions” and not being attuned to what is going on outside or inside them.40 Parents also refer to an emptiness or holes in their roles and relationships. After his sons’ deaths, a father wrote: “The hole in my life left by their death is beyond filling. It is a void stretching into whatever future I have left . . . the loss of my sons has brought me to the edge of an abyss. I stare into it and seek only darkness. I would fill it with faith, but whatever belief I had in a just universe has been undone.”41 Some parents try to cope by having another child, but this does not end grieving for the deceased child. It is the loss of a particular person, not the role occupant, that gives rise to grief.42 Many parents, particularly mothers, feel guilty because they were unable to stop this event, and they become more aware of discrepancies between

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their ideal and actual behavior as parents.43 A child’s death caused by a car accident, especially if the parents survived, is especially likely to be characterized by a pervasive and persistent sense of guilt. Shame and stigma are intensified when parents were unable to prevent a child’s death from suicide or from an opioid overdose. Friends and family may be less compassionate in their response to deaths associated with mental illness or drug use, reflecting disenfranchised grief and increasing guilt feelings.44 Guilt and blame are often heavy and enduring when a child dies, but in most instances, guilt and blame bear little connection to reality. Searching for explanations for Chris’s death, I (NH) found myself feeling responsible because we had moved to the northwest for my job; if we had stayed in the midwest, he might not have become a climber and might still be alive! Looking back, I can now see that there is no assignment of responsibility in his death.

Parents may engage in endless “what ifs,” futile conjectures of what they or someone else could have done to prevent the death. For example: What if I (NH) had insisted that Chris attend his brother’s college graduation rather than guide on Denali. What if he had returned home a week earlier when he had the opportunity after taking an ill client to base camp. What if he was not such a caring, responsive human being who rushed to help a client. What if he had not unhooked his rope. What if. . . . To some degree, the “what ifs” are a way to still care for the dead child by continuing to think about what would have been best for him or her. Parents may search for positive aspects of their child’s death (e.g., the child lived life fully, was freed from living in a coma). However, focusing on “what ifs” can stall parents’ grieving; they must stop asking why because there is no adequate explanation for their child’s death. The process of questioning is also an attempt at meaning-making on a spiritual journey. In every culture, parenting is linked with central spiritual truths, and a bond with their child symbolizes their larger bond with transcendent reality. When their child dies, they lose that sacred connection and face the spiritual task of creating new bonds. Their anchors in life—the stories and rituals by which they make sense of the world and the community in which they are embedded—must be rearranged to include their child’s death. The immortal reality that some bereaved parents may know beyond space and time does not change the awful truth that their children were all too mortal. Nonetheless, if this sense of transcendent reality occurs, it can bring solace in the face of irreparable loss.45 Consistent with the concept of posttraumatic growth discussed in chapter 1, as parents search for meaning and a sense of purpose, their internal

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capacities strengthen, and they learn to grow parts of themselves that did not die with their child.46 Although parents may feel enduring sadness and vulnerability, personal growth may emerge along with a positive reframing of their situation.47 They may live more fully in the moment, experience a heightened appreciation of what is important in life, avoid taking things for granted, and see new possibilities. Others may become more confident, recognizing that they have survived the worst possible thing that could happen, so nothing else could hurt them or be worse. As parents’ internal capacities strengthen, their physical and mental well-being may improve.48 As bereaved parents learn to live in a new world, they reassess how to be themselves in a family and community that makes life meaningful. Some report being more religious or spiritual as central to their personal growth.49 For others, meaning may derive from supporting other bereaved parents or engaging in fund-raising or forming organizations to honor their children.50 Overall, perceived support from others who have experienced a child’s death and respect the importance of their continuing bonds appears central to personal growth. Some social supports may be a hindrance, however, and parents’ perception of the quality of support is more salient than the amount.51 Some midlife adults also have to cope with a grandchild’s death, which can be devastating, especially if they played a central role in caring for their grandchild.52 Grandparents may try to be “strong” and control their grief, especially when interacting with their adult children.53 In these instances, grandparents’ pain may be overlooked by others, which is another form of disenfranchised grief.

Parental Styles of Grieving Their Child’s Death Four parental styles of grieving the death of an adolescent or a young adult child are discussed in the following sections.54 Parents may fluctuate among these styles over time or simultaneously engage in all of them as they try to re-create meaning in their lives. These different styles have no weighting, but professionals can use them as guidelines for assessments, interventions, and interactions with bereaved parents. These styles also may apply to bereaved young adult parents, although they were developed from research on middleaged parents.

exclusion from normal living Bereaved parents may fear that they can never engage in “normal” everyday tasks when nothing about life without their child is normal. They face a decision about whether and how to go on, which may be more difficult if

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they are experiencing age-associated declines in energy. Grief is emotionally and physically draining and impairs their ability to engage with normal life tasks. They may wish never to wake up because each awakening to a new day reminds them that their child is dead. As Semel observed after her sixteenyear-old son’s death, I used to wake up eager to start the day. Not anymore, not since Allie was killed. My thoughts travel to the future, which stretches ahead, a barren vista of grief. What can I do to make my life tolerable after this? Whatever I plan, whatever I do, Allie will always be dead. I will live the rest of my life looking backwards. I cannot bear to contemplate this for long. So I come back to today. How will I navigate the grief until I can return to the anesthesia of sleep? And tomorrow I’ll start all over again.55

Especially in the early phases of grief, parents often are unable to manage the concerns of everyday life and support their other children. Just getting dressed, fixing meals, and doing basic household tasks can be physically taxing and overwhelming.56 As Harriet Schiff noted, getting out of bed in the morning may be the greatest act of courage.57 Parents may cut themselves off from everyday activities that had previously brought enjoyment, such as listening to news or reading the paper. What occurs in the larger world seems inconsequential in the face of the worst loss possible when all comforting illusions are gone. Parents who have a deep urge to be with the child, combined with a strong wish to end the pain, may consider suicide.58 Suicidal thoughts are ways of saying that the loss is so vast, has laid one so low, and the accompanying feelings are so devastating that life may not be worth continuing.59 Or the grieving parent may choose a symbolic death through social and emotional isolation, feeling utterly alone. Parents’ desire to maintain social relationships other than those linked to the deceased child may wane or disappear entirely. Even when surrounded by caring others, some parents may feel more alone than ever before or may keep people at a distance, fearing that social intimacy may bring even more pain. The devastating feelings that engulf parents are so great that others who do not share them may seem to be distant and uncaring. One mother rationalized her social withdrawal by saying, “it’s easier to stay away. Sooner or later, you find the only thing you have to hold on to is yourself.”60 My (NH) older son observed that “Dad died for all us the day that Chris died,” isolating himself at our remote cabin away from dear friends and many family members. Parents may unwittingly widen the chasm with others through their discomfort at how others might react to their loss.61 In other instances, friends

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and family, sensing this chasm and picking up signs of discomfort, may drop out of their lives. Such distancing behavior represents others’ uneasiness about what to say and do, or perhaps their fear that if a friend’s child can die, then it can happen to them as well.62 As a result, encounters with familiar people and the first day returning to commonplace settings, such as one’s job or another child’s sports event, can be overwhelming to bereaved parents, intensifying their feelings of difference and isolation. After Chris died, I (NH) noticed some otherwise caring friends avoiding me in public settings, such as grocery stores or school events. Seeing me at a distance, they would suddenly turn in the other direction to avoid interacting with me or what I called “the sharp left turn” phenomenon. To some extent, I understood how the pain in my face may have been too much for others to bear. It is almost as if my grief could be catching.

Parents may feel that their child and his or her death no longer have a social reality when others stop mentioning the child’s name or imply that it is time to get over their grief. Friends who try to impose a religious explanation that does not fit the parents’ understandings may make the situation even worse.63 Bereaved parents travel on different paths and may realize that some past relationships cannot be maintained.64 Most helpful are those who accept that the pain is irreparable and choose to experience the pain of their own grief; they are able to allow the child to be part of their lives just as the child remains part of the parents’ world. These friends realize that nothing they do will take away the parents’ pain, but by being present, they are able to be part of the parents’ healing. The minister at Chris’s memorial service urged the hundreds of people there to simply “stand by” our family. I (NH) am fortunate that several parents of Chris’s high school friends recognized how important it was for me to be able to talk about Chris and to know that others remembered him. They shared their memories freely, had his pictures on their refrigerators, and indicated that they, too, thought of him and cried frequently. They would often come by our house just to sit in silence, and these individuals remain good friends more than twenty years later. In this supportive social context, parents are able to integrate their grief, even though the journey is time consuming and fluctuates between good and bad days.65 Parents who struggle with unfinished business are more likely to withdraw from normal living and social relationships, especially if they had interpersonal conflicts with their deceased child. Their loneliness may come from deep regret, frustration, or even anger. In their preoccupation with the child’s

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absence, they lose opportunities for resolving conflicts, overcoming resentments, fulfilling obligations, and strengthening relationships with surviving children and other family members.66 They also may fear that they will be unable to hold onto memories of their child unless they cling to their grief. Feeling the pain is a way to keep their child’s presence alive. Letting go of pain and starting to enjoy themselves may feel like letting go of the child. A child’s death can disrupt and destroy family relationships, routines, communication patterns, identities, and structure and call into question the reason for family activities. The extent of this disruption varies with the deceased child’s role in the family. Moreover, each member’s reaction to the death is affected by differences in their social position in the family and by their age, gender, and social networks.67 Changes to family routines precipitated by a child’s death require that new roles and relationships be shuffled around the void left by the dead child. My (NH) son Kevin wrote a song for Chris’s memorial service that captured many of his attributes that held our family together: he was the “glue,” the fun one, the one who wore “big shoes” to be filled. Over time, the three of us have found new ways to create this glue—and new memories, rituals, and stories.

Families need to construct not only new identities but also narratives that account for the death and its consequences; the story-making process is central to integrating a child’s death. Unfortunately, many families are unable to create new stories and memories that unite them. Instead, different family subcultures lead to particular expectations and beliefs about death and “appropriate” responses that can create destructive misunderstandings, particularly for teenagers. When families are unable to reconcile these differences in grieving, misunderstanding, a sense of resentment, and isolation can result.68 Parents must negotiate their loss of identity as parents to their deceased child with their identity as parents to surviving children. Parents may not recognize how their grief negatively affects their other children and, indeed, the entire family system.69 Erratic parental support characteristic of undiluted grief is hard on surviving siblings. Siblings may try to “replace” their deceased sibling as a form of survivor guilt or to comfort their parents.70 Parent-child support and communication following a child’s death is critical to family functioning and their surviving children’s capacity to integrate the loss into their lives. However, parents’ intense distress and feelings of powerlessness often impede effective communication. Preoccupied with grief, parents may become absent and indifferent to their surroundings, unable to help surviving siblings who are in pain and struggling

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with a lack of understanding, belonging, and self-worth.71 Ironically, parents may feel that emotional distance protects their surviving children by keeping them away from their own pain and sadness. Some parents may not even notice their other children’s distress, leaving surviving siblings “forgotten mourners.”72 Parents who support their surviving children may foster their own healing because they are concentrating on relationships rather than on their own sadness.73 This mother recognized the negative impact of her withdrawal from normal life, but she felt powerless to change it in the months following her son’s death: Not only has Hilary had to cope with losing her brother but also with losing her parents as she knew them. Overnight we were transformed to agonized zombies clinging to life by our fingernails. She was afraid that I would kill myself. She definitely thought that I was too distraught to drive. And I know for a fact that there were times she thought it might be better to be the one who was dead than the one who survived and had to cope with the aftermath.74

Resenting the lack of interest shown in them, siblings alternate between distancing themselves from their parents (e.g., going out with friends) and trying to protect them (e.g., staying home to ensure their parents are okay). Both behaviors may lead to siblings’ feeling isolated and unsupported and parents’ misinterpreting the surviving child’s distancing as uncaring.75 When Chris died, we (NH) relied on friends and videos to occupy our sevenyear-old daughter for more than a month—way too long to be good for her. She withdrew into the videos, watching the same ones repeatedly, while we wondered why she did not show more visible signs of grief. We knew that we should be attending to her needs more and encouraging her to express her feelings. I have learned to tell myself that “we did the best that we could do, given the enormity of the loss and our limited energy.” At that phase of my grief, I saw no way back, no way forward—only an endless stretch of days without Chris.

Some parents put their grief on hold to protect their surviving children, perhaps discouraging their independence. However, this may restrict communication and complicate parents’ and children’s grief.76 Positive family functioning is more likely to occur when information is shared openly and parents and siblings talk about and commemorate the child’s death, engaging in meaning-making as a way to maintain bonds.77 Some families attain positive functioning relatively early in the grief process, and their surviving children are resilient and experience personal growth. This resilience may be due in part to protective factors of help-seeking through counseling or

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support groups and to personal attributes such as flexibility, communication, and spirituality.78

the culture of “everyday” life Some parents react to grief by frenetically focusing on daily tasks, trying to distract themselves from sadness. Life has to go on, work has to be done, money earned, other children raised. This “keeping busy” style is congruent with the benefits from taking time off from grief in the dual-process model described in chapter 2.79 Contrary to the early grief work theories discussed in chapter 1, facing the loss and temporarily avoiding painful introspections through other activities (restoration orientation) may lead to a more successful adaptation than focusing only on distressing thoughts (loss orientation). In this dual-process model, parents have both good and bad days, moments of hope for the future along with times when nothing seems worthwhile, and they swing between the two extremes. Reinvesting in life and social relationships provides a sense of connection and validation from others. In fact, grieving parents with many social relationships are more likely to be resilient than those with only a few, perhaps because their personal identity has not relied exclusively on their parental role. Employment or volunteering are sources of connectedness, purpose for one’s days, and self-esteem. However, parents who readily return to work generally find that they must eventually deal directly with their grief. Admittedly, economic issues often necessitate an early return to work; moreover, time to return to work is typically not the employee’s choice because bereavement leaves are often short in the United States. Although employment can be a temporary refuge where parents can engage in normal tasks and relationships, their return home after work is often marked by surges of sadness. I (NH) could make it through a day at work, and even be productive, but when I walked outside into the evening darkness, I would cry all the way home. I recognized that I could only hold it together in public for just so long. And there was something about the darkness, whether walking or in the privacy of my car, that made it safe to cry.

Parents who engage in normal everyday life may find that pushing grief backstage is exhausting and isolating. Those who attempt busy lives are periodically interrupted by feelings of intense loneliness,80 which are often triggered by anniversary events, seeing a certain person, or being in a particular environment. Loneliness was often greatest for me (NH) when I was

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surrounded by married parents, cheering on my daughter’s soccer team, celebrating her eighth-grade graduation, or attending my son’s first art opening. At these times, the absence of Chris and Gene was more real than the presence of others. But this sense of feeling alone when surrounded by others gradually diminished over time. By trying to gain some control over their shattered lives, parents may engage in behaviors that seem bizarre to outsiders, such as buying unnecessary items, taking a luxury trip, or starting a major new project. These activities can provide a temporary sense of control and aid in moving forward. Several months after Chris’s death, I (NH) decided to have my kitchen remodeled, justifying it by “if I can’t accomplish anything else these days when my days were consumed by grieving (since I had taken a leave from work), at least I can handle these relatively minor decisions.” The remodel was distracting for short periods, but it brought no meaning to my life nor did it assuage my loss in any way. Looking back, this behavior now seems crazy to me—a desperate attempt to feel in charge.

Other parents may try to feel in charge by clinging to their dead child’s belongings as a reminder of the child’s physical presence. Some try to gain control by not changing anything, creating a shrine in the child’s bedroom. To friends and other family members, this seemingly irrational behavior may become a source of conflict.

new meanings and support Parents often find that past informal supports no longer work for them, and they may avoid potentially helpful social situations through a fear of losing emotional control or a sense of exasperation with what now seem to be “trivial” conversations. Alternatively, if previous supports pressure them to be “fine,” parents may feel the stigma and social difference of bereavement. As a result, they often seek out those who have “been there” and share the reality of a deceased child, comforted by knowing that the pain is not theirs alone.81 It is not surprising that support groups, such as Compassionate Friends, composed of others who endure similar pain, may become more salient to bereaved parents’ well-being than past friendships. Some parents find a way back to living through new relationships with others who have lost a child— the subculture of bereavement.82 A mom’s support group was a lifeline for me (NH), a source of healing more than grief counseling because other moms could assure me that one day my pain would be less.

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Parents who fear that attending to daily life might mean forgetting or abandoning their child may need to retell the story of their child’s death, share pictures, and participate in memorial rituals. Congruent with the resilience model, these rituals offered by support groups generally enhance their community capacities. Being able to talk about their child with empathetic others is a way to “write the last chapter” for the parent-child relationship, and this can be a source of healing. Moreover, by helping others in a group, their feelings of being alone often diminish. Other parents find support and meaning by forming or joining advocacy organizations related to the cause of their children’s death (Million Mom’s March Against Guns, Mothers Against Drunk Driving, Black Lives Matter, or Sandy Hook Promise). Joining a collective effort can impose an external “expert” validation on what parents experience, publicly acknowledge their continuing pain and bond to their child, and foster a sense of self as active rather than powerless. Others may create memorial funds in their child’s name through educational, sports, religious institutions, or community organizations related to the child’s interests or nature of the death to ensure that their child’s spirit continues to influence others.83 I (NH) honored Chris’s passion for outdoor education by establishing the Chris Hooyman Outdoor Education Fund, and it has had numerous ripple effects. It provided scholarships to hundreds of youth without financial means to participate in outdoor education; instilled his love for the outdoors in others; and provided me with a source of meaning. In a semi-annual Chris Hooyman Memorial Climb of Mt. Rainier, climbers raise dollars for the fund. I experience joy when climbers share with me how their lives were transformed by this climb and by learning about Chris.

Congruent with Worden’s task model, bereaved parents not only need to learn to live without their child but also need to internalize an inner representation of the child that brings comfort.84 For most parents, the belief that death is an end to the child’s physical existence is intolerable. Early in their grieving, parents describe feeling their child’s presence, seeing, hearing, smelling, touching, or talking to their child. They may dream intensely about their child and feel his or her continuing influence. Some parents even internalize characteristics or virtues of the deceased child.85 For a few years after his death, my (NH) connection to Chris felt strongest when I took on physical challenges, even risks (e.g., jumping off high rocks into the ocean, swimming farther, rafting the Colorado River that he so loved,

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or hiking longer). I tried to fully experience physical, creative, and inquisitive courage similar to what he had exhibited daily.

Over time, some parents transform the lost physical relationship into an abstract one that can be held onto as a source of comfort that influences their parental identity. In creating continuing bonds, inner representations are thematic memories of the child and emotional states associated with him or her: who parents were when their child was alive, who the child was when alive, and who the child continues to be now. Conversations can continue when the child remains a part of the parent.86 Similar to other spiritual experiences, these connections may encompass a sense of uncanny mystery, wonder, and awe. The interactions within such continuing bonds are not simply an objective presence since the meaning is strongly personal; nor is it only “in the head,” even though the intense meanings felt through such bonds have no rational proof.87 Contrary to early grief work’s emphasis on separation, continuing bonds are often resources that help parents build a creative, healthy life.88 Some parents are comforted by envisioning that their child is no longer suffering and is in a safe place with relatives or age peers who “have gone before them.” Believing in life beyond this physical world, they are able to contemplate their child’s life with warmth and affection rather than with an overwhelming sense of sadness.89 This may occur through a spiritual search through clairvoyants or channelers who communicate with their child’s spirit, more conventional religious movements, continuous storytelling, or personal faith in a place where their child is nurtured by others. Many affirm their prior religious beliefs even while questioning why God or a supreme being allowed their child to die. Others believe that a supreme being is communicating with them, often through signs, to help them find peace, meaning, and perspective. Through these varied spiritual processes, the deceased child comes to exist as a presence in his or her parents’ minds, lives, and conversations. Grief is not a progression from preoccupation with the dead child to reattachment to the living; it is an oscillation between the demands of living and the continuing perceptions of the deceased. Some parents may perceive their relationship with their deceased child to be closer and more accessible and real than their relationship with their other children. They may keep their child’s memory alive through writing biographies, marking anniversaries, visiting the grave, and holding memorials to transform the relationship into something more real. Birthdays and other

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holidays are no longer a reason to celebrate but to honor, commemorate, observe, or in some instances, just to get through the days. Unable to face the holidays in our home the first Christmas after Chris’s death, I (NH) booked flights to Hawai‘i. My travel agent assured me that Hawai‘i is typically full of grieving people trying to escape their pain during the holidays.

Because religious holidays are so closely identified with love, parents may feel a child’s loss most acutely then.

personal reconstruction Congruent with creating meaning through continuing bonds, bereaved parents generally cannot escape the religious and spiritual aspects of death because their child is one of the bonds they have with sacred reality. As noted earlier, a child’s death can create an existential crisis—a search for the meaning of human existence. Some parents face this crisis by retreating into solitude, which is different from isolation. Solitude can be a basis for introspection, reflection, and interaction with ideas; a self-evaluation; a way of rethinking the nature of the world; and a healthy response to those who pressure parents to get over their grief quickly. Parents’ suffering and their highly personal exploration of the significance of the death can be a catalyst for a fundamental review of life’s meaning and their purpose in it and transform their identity.90 In their journey of growth and change, some parents “take stock” of their lives, questioning their careers, their friendships, how they spend time, and who they allow to influence their lives. They may reevaluate previous social connections, retaining only those who recognize their loss, and they may develop a greater sense of compassion and wonderment at the fragile but precious nature of life.91 Able to appreciate new aspects of the world, parents may discover a personal way back and a new way forward. When I (NH) returned to work, I had much less patience for the small irritants of academic life. Yet I also became more focused and effective in many of my interactions. I feared nothing. Having experienced the worst thing that could happen, I felt that no one or anything could hurt me again. In looking back, I realize that my ability to see the big picture, my confidence, and my effectiveness as Dean became stronger after Chris’s death.

Over time, many bereaved parents feel more self-assured, emotionally mature, creative, and powerful. Their child’s life and death gives meaning to parent’s subsequent choices, ensuring that “no voice is ever wholly lost.”92

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Impact of a Child’s Death on the Marital/Partner Relationship Nearly all parents have to renegotiate their marital/partner relationship after their child’s death. Just as a child’s death alters parents’ relationships with friends and relatives, it often has a negative impact on marital functioning.93 Paradoxically, parents’ bereavement over a child’s death can drive away those who would normally be expected to provide support, isolating them from prior significant relationships. In such intimate loneliness, parents need each other’s support but find it hard to ask for and give it.94 Intimacy is not only about trust and openness but also about hearing another’s intensely held but sometimes widely differing perceptions of reality. When pain is so acute, it is often difficult to accept differences, and conflict may result. Immediately after the death, talk between parents is likely to degenerate into incoherence and tears. A source of incongruence is the belief that because both parents have suffered the same loss, they should experience the same grief. But their grief experience is inevitably dissimilar due to their different relationship with their child.95 In some instances, a partner may engage in partner-oriented self-regulation, avoiding talking about the loss and trying to remain strong to protect their partner. Rather than protecting them, however, this strategy is often associated with an increase in both parents’ grief.96 The extent to which parents support, listen to, and are sensitive to each other’s needs may reflect different perspectives on the meaning of “being there.” Intimacy in committed relationships relates to sharing another’s intensely held but sometimes conflicting worldviews. Each partner experiences loss differently, and partners may be unable to bridge their communication differences. It is unclear whether bereaved parents at midlife are at excessive risk of separation/divorce due to increased marital strain after a child’s death.97 Questions about how a couple should live their life in the future reinforce relationship uncertainties that arise from the death. Partners’ narratives about the death often move them to talk about emotional distance from each other and the possibility of separation. This talk is a way of saying how difficult things are, and it does not necessarily lead to divorce. Fear of divorce may motivate some parents to work even harder to stay together, and they may emerge as a stronger unit. Agreeing that their child’s death is the most tragic loss imaginable, they choose not to lose each other as well. Death can create a new bond between parents even while it pushes them apart. Parents may feel distance, irritation, and anger with each other, but many regain emotional intimacy or even increase it over time.98 Parents who report a high level

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of marital satisfaction before their child’s death have less conflict after the death, whereas those who experienced prior marital strains are more likely to separate.99 Because so many of our friends were professional helpers, they warned my husband and me (NH) early and repeatedly about the importance of putting energy into our marriage and the high risk of divorce if we did not do so. But when we barely had the energy to get up each morning and get through the demands of each day, working hard on our marriage seemed overwhelming.

For some, however, closeness is not about a higher level of love, communication, and understanding, but more about desperate, hurting, needy partners who would be much better off and happier if their child were still alive and they were not compelled to be as close as a couple.100 Their joint grief is a constant, unrelieved aggravation that can drive them apart or leave them clinging to each other. Another source of martial conflict may occur when a young adult child is missing in military action, kidnapped, or has run away from home. Without a body to grieve, family members experience ambiguous loss and remain in limbo, often for many years. Hope may ebb and flow, with parents continuously searching for their missing child as they try to “move on” and bring some structure into their life. When parents are out of sync with each other during this process (e.g., one parent spends every waking moment searching, and the other is resigned to the child’s permanent absence), their relationship can be severely strained.101 The strains on heterosexual relationships due to incongruent grieving can be intensified by gender differences (see chapter 3). Mothers appear to grieve more intensely and longer, cry more, and be more immersed in their grief. They may regard their partner as unfeeling when he does not cry, wants to get life back to normal, or quickly returns to work outside the home. Mothers generally engage in loss-oriented coping focused on the deceased child more than fathers.102 Women tend to value open communication and turn to others to discuss emotional issues more than men do. However, in some partnerships, the father is more expressive than the mother, who may seek distraction in employment or household responsibilities. Less is known about the grief of LGBTQ couples, although roles in these relationships tend to be less gender distinct.103 Some parents’ differences in grieving may be due to variations in roles, informal networks outside the family, and degree of social connectedness rather than gender, and variations in grieving are often intensified if parents come from different cultural backgrounds.

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Gender differences also apply to sexual intimacy, which typically declines immediately after a child’s death. The parents’ energy and motivation may be so low that they have no interest in sex. For some parents, sexuality is associated with how the child was conceived and a pleasure inconsistent with grief. When parents do touch each other or engage in sexual intercourse, it can be either a bittersweet sense of shared loss or a reaffirmation of life, which supports their need to be close to each other.104 If parents divorce after a child’s death, they lose a unique connection to their shared knowledge and memories and feelings toward their child. The additional loss of a partner is often felt to be unbearable because to lose a partner is to lose more of the child who died.105 As a widow, I (NH) long to be able to share childhood memories with my husband, the only other person who parented Chris and could talk about his life and death from that shared perspective. If the other parent dies or separates, we lose the one person who could remember details unlikely to be recalled by others.106

Divorce Regardless of the impact of losses such as a child’s death, divorce ends about 50 percent of all marriages, with midlife adults the most likely age group to get divorced. This may reflect the number of life-changing events that occur in midlife, which can create marital difficulties.107 Marital dissolution, a highly stressful life event, has far-reaching negative consequences, with 10 to 15 percent of divorced individuals struggling substantially. Indeed, separation or divorce increases risks for poor health outcomes, including a higher mortality rate from multiple disease processes.108 For many people, the pain, suffering, and sadness of divorce is often accompanied by anger. Divorce strikes at the core of an individual’s self-concept, changing relationships, living situations, family roles, and routines.109 Women initiate divorce more often than men, in part because midlife is a time when they may reappraise intimate relationships.110 For some, divorce is a time of renewal, especially for those leaving a conflictual or abusive relationship. But most midlife women experience a fracturing of social support networks and feel anxiety, loneliness, and depression along with health and financial problems, particularly if the man initiated the divorce. Women generally experience more losses from divorce than men do.111 Even though the majority of divorcees are resilient and adapt successfully over time, divorce may be more traumatic than death.112 Death represents a clear ending to a relationship, whereas divorce lacks this finality and

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universality. It is a potential end, albeit an increasingly likely one, but it is not a certainty. Rather than ending a relationship, divorce merely changes it, and volatility, anger, and resentment sometimes characterizes the new relationship.113 The ambiguous feelings of grief that accompany the death of a marriage usually are a mixture of shock, denial, hurt, abandonment, rejection, powerlessness, anger, bitterness, panic, hatred, hostility, ambivalence, and sometimes relief or excitement. Divorcing couples lose the innocence that they brought to their expectations about their relationship, and in doing so, they may lose their self-esteem, hope, sense of control, and feelings of interpersonal competence. Partners mourning the death of their relationship abandon the dreams that brought them together and must deal with a daily reality that is at odds with those dreams: relinquishing past parenting roles and accepting new ones (e.g., single mom or dad), adjusting to financial changes, and trying to preserve their sense of self. Unlike widowhood, divorce is an event tailor-made to make individuals feel bad about themselves.114 I (SS) had been grieving for so long as I watched my husband disconnect from the needs of our four children and me. His focus was on his work and sports while the children and I were slowly forming our own family system long before the divorce. Coming to awareness that the fairy-tale family life I desired was no longer possible was incredibly painful. But once that subsided, I stepped out into the world alone, left that pain behind, and experienced a sense of liberation.

Two other personal capacity factors may make divorce grief more difficult than bereavement from death: the presence of decision-making behavior and the extent of choice in divorce. One of the most significant mediating variables in terms of resilience is whether a partner was active or passive in the decision-making.115 The partner who initiated the separation is less likely to grieve because he or she anticipated, prepared for, and grieved in advance. However, a decision to separate is not necessarily the last one partners must make; they also must decide about the disposition of property and possessions, parental rights, living arrangements, and financial obligations. Throughout this process, fault is assigned and negotiated. The absence of cultural and societal rituals marking the death of a marriage is another difference. Few culturally accepted divorce rituals aid socialization into a new role, although some adults are inventing their own to help them with this transition. Other mediating variables underlying the disproportionate intensity of grief from divorce are degree of social support, presence of children, remarriage, and divorcing partners’ roles. Divorce can intensify grief on two levels: an individual’s capacities in response to the divorce itself and the family,

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community, and cultural responses to the divorced person. Both partners may be ostracized socially and lose some family and community capacities. Social networks—including those of the family of origin, the family of the former partner, friends and acquaintances, and communities such as some religious institutions—may withdraw or take sides. Widows are more likely to receive friends’ and family’s support than are divorced women.116

Caring for a Young Adult Child with Chronic or Severe Mental Illness Mental illness can develop at any age, but the average age at onset for depression, bipolar disorder, obsessive compulsive disorder, and schizophrenia is the early to middle twenties, often resulting in disability throughout adulthood.117 Midlife parents may gradually observe that something is wrong and have a sense of imminent crisis, but they may not be able to verbalize their fears. Some may hang onto the hope that worrisome symptoms will abate. The time of diagnosis is a source of marked distress, but parents’ grief generally increases in intensity with the passage of time. The symptoms of mental illness tend to intensify and diminish, often in a cyclical manner. Parents also need time to understand the magnitude of their loss and to accept its ramifications.118 Their disenfranchised grief is a psychosocial loss that is not publicly acknowledged or mourned, and friends and the community often do not provide social or religious rituals or support.119 Parents who anticipated launching their young adult child, whether through college or employment, may be faced with issues of dependence, stigma, and family disruption.120 Their grief response may initially parallel that of parents whose adult child died: avoidance and denial, resentment and anger of the unfairness, shame, blaming of self and others, and, over time, reorganization of their lives, belief systems, and self-perceptions to incorporate the loss.121 Guilt may be especially intense as parents struggle with what they might have done to prevent the onset of a disease whose cause and course are not well understood, or one parent may blame the other. In addition, parents may resent that some people wrongly hold them responsible for their child’s illness. Regardless of its cause, guilt may manifest as anger toward their child.122 Parents grieve the loss of who their child once was: their personality, health, dreams and hoped-for future, former familial relationships, and control, security, and predictability.123 They also must grapple with the loss of self-esteem and their sense of competence as parents. Their own plans for

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being freed from child-rearing responsibilities are thwarted. Milestones such as graduation or marriage of the child’s peers may trigger grief reactions.124 Despite periodic glimpses of their child’s former self, they gradually need to relinquish memories of how their child used to be.125 Not only is their child a different person after the illness, but they also may mourn the physical loss of their child if he or she joins the severely mentally ill living on the streets or in an institution. Similar to parents of a child born with physical disabilities, parents of a young adult child with mental illness experience chronic sorrow, characterized by a continuing presence of the loss. Never-ending sorrow is most likely to develop in the face of hopelessness regarding progress and when the condition is seen as permanent. Always just beneath the surface, the nonfinite loss gathers significance and intensity over time as parents are continuously confronted with reminders of the discrepancy between what they hoped their child would be and what their child has become.126 Parents’ energies are often absorbed in demanding, frustrating, frightening, and highly stressful caregiving situations for a child who is alive but different, which increases their ambivalence and interferes with mourning. They oscillate between their loss and caring for the source of their loss. Indeed, ongoing caregiving duties are often precipitants to their chronic sorrow.127 Parents also struggle with anger about their never-ending care responsibilities and the scarcity of accessible mental health services. Lacking support from friends, family, or professionals, parents often feel lonely and isolated in silence because of the stigma and shame surrounding mental illness.128 Caring for a family member with a mental illness, especially when the family member lives in the same household, puts the entire family at risk for poor physical and mental health.129 Religiosity, supportive social networks, and psychoeducational programs for families typically serve to promote parents’ resilience and positive outcomes, including creating meaning.130 Generally, those who come to terms with their responsibilities and integrate their grief can construct purpose out of the illness experience, such as involvement in education and advocacy or working to change policies related to chronic mental illness. These actions may also foster a sense of mastery and self-efficacy.

Caring for Older Relatives Increases in life expectancy and in four and five generation families have made caring for older relatives normative in midlife. Most middle-aged adults are deeply involved with their aging parents and, in some instances,

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grandparents. Although parent care has become a predictable and nearly universal experience, many midlife adults are not adequately prepared for the complex and intense nursing and medical care needs of older adults.131 Families offer emotional support, help with instrumental activities (e.g., transportation, meal preparation, shopping, locating services), and personal care. Women provide the majority of care and experience more of the losses associated with caring for older relatives. As noted in our discussion of developmental tasks, the “sandwiched generation” refers to midlife adults faced with competing responsibilities of caring for parents and children, including young adult children who may have returned home because of economic or other pressures. Middle-aged daughters are primary caregivers for older widowed women and older unmarried men and are secondary caregivers when an older parent’s partner is still able to provide care.132 As “women in the middle,” they may be juggling extensive family responsibilities along with employment and their own age-related transitions. They are more likely than men to give up employment, which results in a loss of income (both current and retirement), identity, and self-esteem. Caregivers of color with low socioeconomic status and a limited education report higher rates of distress in part due to the financial loss from caregiving.133 Caring for someone with a chronic illness involves numerous losses as their loved one’s needs increase due to declines in health, mobility, and cognitive function.134 Caregiving typically involves letting go of outmoded patterns of interaction to meet current family needs while grieving relatives as we once knew them. Caregivers often experience losses of a relationship and companionship, lifestyle and security, predictability, control and autonomy, time for oneself, social status, family cohesion, and a once imagined future. They may struggle with an “erosion of self,” with their identity completely submerged in the caregiving role that often has no boundaries.135 As one caregiver observed, “by definition, caregiving does not affect your life; it becomes your life. Outside activities disappear. In eight years, I have been to the movies three times.”136 Nor do losses associated with caregiving end at death; family differences related to the estate and appropriate memorials may exacerbate grief. Family caregivers often feel isolated and disconnected from others, overwhelmed, out of control, inadequate, and fearful of the unpredictability of the future. These stressors may have a negative effect on physical and mental health. Daughters and daughters-in-law tend to report more depression, anxiety, loss of identity, and psychiatric symptoms and less life satisfaction than their male counterparts, even when performing similar tasks.137 These

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negative impacts on health can create losses in well-being for the remainder of the caregiver’s life, and these losses are generally exacerbated by a lack of financial and social supports.138 Although most professionals now recognize the centrality of family caregivers, some may still feel invisible, intensifying their feelings of limited support and being part of a “shadow workforce.”139Perceptions of and reactions to losses associated with caregiving vary with culture. Asian cultures (Chinese, Japanese, and Native Hawaiian) value interdependence, and stressful feelings related to caregiving difficulties may not be expressed due to social pressure to provide care as an obligation. Caregivers may experience anticipatory grief long before their loved one dies, grieving the loss of the person’s “former self.”140 Grief may be manifested as guilt for not doing more, anger and resentment, self-neglect, burnout, depression, and physical health problems. Caregivers may experience shame for wishing that their caregiving was over, and their sense of subjective burden is often greater than the objective burden created by the physical demands of the job.141 A diagnosis of Alzheimer’s disease or other types of dementia can be life changing, ending the normal life the family once knew.142 Middle-aged adults caring for older relatives living with dementia or cognitive impairment due to stroke or traumatic brain injury suffer distinctive losses. They typically must tolerate an ambiguous, unpredictable situation for long periods, often perceiving no end to their pervasive care responsibilities. Caregivers may face a loved one dying twice: first, the psychological death of the person they knew, and second, the physical death.143 They experience ambiguous loss when their loved one is physically present but psychologically absent. Grief is frozen and life is put on hold because the lost person is here but not here.144 The prolonged stress of caring for a loved one living with dementia can create a sense of desperation, and this “long good-bye” can result in multiple waves of grief and imperil caregivers’ well-being. Professionals need to encourage self-care for caregivers to address losses from the long-term care of an older relative. When speaking at a caregiving conference, I (NH) was moved by a woman who was caring for her mother-in-law with Alzheimer’s disease, her eleven-year-old daughter, and her eight-year-old son. She had given up a rewarding career, and her in-laws, who had no children, only provided financial assistance, refusing to step in to give her respite or time off. Her husband worked two jobs and was rarely present. Caring for her mother-in-law dominated her life and limited her ability to attend her children’s special events. Her son had to give up his room for his grandmother, and her daughter complained that her mother had

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no time for her. In the two years of caregiving, she had not had a single day just for herself. When she learned about state-funded respite services, she started to sob, recognizing how much she had been grieving the loss of time for herself and her children.

Adult children may also gain satisfaction, a sense of positive meaning, increased patience, preservation of values, and pride from being able to give back to those who once cared for them. Some caregivers of color have a strong belief in their responsibility to care for their parents; turn to prayer, faith, and religion more readily; and feel less sense of loss than white caregivers do.145 Latinx and African Americans tend to experience more positive aspects from caregiving than white caregivers do. For some African American caregivers, the opportunity to become closer to relatives is a blessing.146 Congruent with the resilience model, positive outcomes are usually associated with adequate financial resources, strong social supports, a high communal orientation (e.g., ability to seek and receive others’ support), health promoting behaviors, close family relationships, a positive relationship with their loved one prior to caregiving, and cultural beliefs regarding filial support.147 Nevertheless, most caregivers grieve numerous losses, although they may be unaware of this grief dynamic that lies just below the surface of their sadness, anger, or exhaustion. Because their grief is disenfranchised, like that of others in relatively invisible roles in our society, just having it named and acknowledged may give them strength to keep on caring. Even though grief is a normal response to loss, not every loss gives rise to grief. After many years of a difficult parent-child relationship, some caregivers may be providing care only because no other viable options exist.148 The bonds of attachment may be weak, especially if past familial patterns were characterized by disruption, neglect, or separation. Other caregivers may suppress, compartmentalize, or refuse to acknowledge their grief.

Death of a Parent The vast majority of adults are likely to experience the death of both parents by their early sixties, making this a normative loss and the most common form of bereavement in middle age.149 A parent’s death in young adulthood has more powerful effects than a death in middle age, although adults in middle age may be managing other developmental challenges (e.g., children leaving home, declining energy) while dealing with their grief.150 If one of their parents has already died, they may find themselves in the caregiver role

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and anticipating their second parent’s death.151 Nevertheless, a parent’s death, no matter how expected, may cause intense grief, which is often underestimated by others. Adult children’s psychological and physical well-being may decrease, and bereaved adults in midlife may have difficulty with interpersonal relationships, lose interest in people or activities, feel angry or abandoned, have trouble sleeping, or be unable to maintain employment.152 No matter how well middle-aged adults may have prepared emotionally for a parent’s death, it can be a life-changing event, with adult children fluctuating between holding on and letting go of their relationship with their parent and reevaluating their lives, sensitizing them to unfinished business. A parent’s death may leave adult children feeling that they no longer have an anchor. Our beliefs about our parents’ invincibility and immortality are shattered. In addition, when both parents have died and adult children become orphans, they become aware of their own mortality and may reevaluate their priorities and responsibility to others.153 No longer somebody’s child, adult children lose their primary source of unconditional love and security and connection with the past. (This may not be the case for adults who were abused, neglected, or abandoned in their youth.) Becoming a member of the oldest generation can be life-altering, requiring the creation of a new relationship with the world and others in it.154 With the second parent’s death, grief over the loss of the first parent may resurface, and midlife adults may more fully grieve the first parent’s death.155 In general, midlife adults who had a history of conflicts, regrets, and unfinished business with a parent, especially their mother, have more difficulty grieving this loss. Findings are mixed about whether a parent’s death is harder on a son or a daughter. Because of the often close connection between mothers and daughters, particularly in childhood, early research identified middle-aged daughters as having intense grief over their mother’s death and requiring more emotional support than sons. Their mothers may have been the last connection with the family home and the focal point for siblings and other relatives. Daughters also may become aware of their own aging and the possibility of dying in a way similar to that of their mother.156 For African American daughters, their mother’s death represents a physical loss as well as their mother’s role of consistent nurturer and helper and the root of the family and sometimes of the Black community.157 Other studies found that daughters have a stronger grief reaction after their father’s death than their mother’s.158 More recent studies have found no evidence that women have greater difficulty with their mother’s death or men with their father’s. Moreover, the impact of a mother’s death was greater for both sons and daughters than a father’s death,

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in part because adult children may be closer emotionally to their mother and influenced by her in their personal values, religious beliefs, and close relationships. This intensity of grief is not surprising; as children, we believed our mother would be with us forever.159 Similar to other losses, reactions to a parent’s death vary to some extent by gender, with bereaved sons emphasizing themes characteristic of instrumental grief, such as control, action, problem-solving, and privacy, and bereaved daughters ruminating and focusing on the loss of relationship, social support, and sharing of emotions.160 A parent’s death tends to be more complex when business is left unresolved and when the parent has not lived to enjoy milestones with grandchildren. Another factor that may complicate the bereavement process is the degree of stress experienced by the adult child before the parent’s death, particularly if the adult child was a caregiver. However, a parent’s death may promote a restoration of the self, a spiritual awakening and healing, and other types of personal growth.161 If the bereaved adult child feels abandoned by their parent’s death, the adult may seek to deepen other relationships. Support from a spouse/partner can lessen the negative impact of a parent’s death, although partners at midlife may be less emotionally available and supportive than at other life stages.162 Middle-aged children may be allowed little time to grieve their parent’s death because it is an on-time event and because of ageism (e.g., an older person’s death is assumed to be less tragic than that of a younger person). Fewer funeral rituals generally mark the deaths of older people, and bereaved adult children are often expected to return to the workplace or assume other responsibilities shortly after their parent’s death.163

Summary In middle adulthood we shift away from our youth and toward old age, and this is typically a time of both gains and losses. For those with economic, social, and personal resources, it can be a period of growth, freedom, and creativity. Regardless of our own capacities, however, we are likely to face the death of adolescent and adult children, siblings or parents, marital disruption, and caregiving for young adults with severe mental illness or for older family members with chronic illness. We also begin to feel the cumulative effects of multiple losses from earlier times in life. As the resilience model suggests, the impact of these losses can be mediated by strong social supports and the ability to find personal meaning through one’s grief.

11 Interventions for Grieving Midlife Adults

 Adults in middle age commonly experience significant life transitions, including attending to aging parents; adapting to divorce, widowhood, or other marital/partner changes; and grieving the death of a child.1 Midlife adults are more likely than young adults to die from cancer or heart disease, which accounts for approximately 60 percent of all deaths in middle age and increases the likelihood of widowhood.2 As middle-aged people confront changes in their physical appearance, failing health, declining energy, and others’ deaths, they often become more aware of their mortality, reappraise their priorities, and search for meaning. If negotiated well, these events result in personal growth, an enriched spiritual life, and integration of undeveloped dimensions of personality.3 Failure to navigate these changes results in less positive outcomes, such as bitterness or depression. Social workers familiar with these midlife transitions and losses and the capacities of middle-aged adults may be able to validate and “normalize” these experiences, support midlife adults’ adaptation to new roles, and assist them in their search for meaning. Most people who confront normative losses in midlife do not require long-term professional intervention, and professional intervention has mixed results.4 Interventions for midlife adults experiencing uncomplicated grief “cannot be regarded as beneficial in terms of diminishing grief-related symptoms.”5 However, for those at risk of or experiencing complicated or traumatic grief, psychotherapeutic interventions may be beneficial.6 For most middle-aged adults, especially in the early phases of grief, professionals may be most effective by providing support to informal networks, such as family, neighbors, friends, colleagues, and members of familiar religious groups.7 For death-related losses, informal supports are generally available to help with daily tasks immediately following a death. It is after these 272

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informal networks begin to return to their normal lives and the bereaved are alone with the silence in the house that the bereaved feel the impact of their loss. Family and friends typically need to maintain contact over months or years. Phone calls, thoughtful notes or cards, and visits may lessen the bereaved’s isolation over time, especially when they feel heard.8

Assessment When professional psychotherapeutic interventions are needed, an assessment should explore the following domains: 1. Emotional (e.g., negative affect, depression) 2. Cognitive (e.g., thoughts or mindset associated with the loss) 3. Behavioral (e.g., seeking behaviors, social isolation, potential to harm self or others) 4. Physical (e.g., appetite changes, sleep disturbances, substance use) 5. Spiritual (e.g., questioning previously held beliefs, evidence of shattered assumptions) 6. Psychological (e.g., perceptions associated with the loss)9 Assessment helps determine the intensity of the intervention to best match the need or risk. High-risk factors to consider in an assessment include limited social support, history or immediate evidence of difficulty in responding to a loss, situational stressors (e.g., financial distress, compromised health, multiple losses), ambivalent or conflicted relationship with the object of the loss, major depression or personality disorder, inability to acknowledge the loss, extreme anger or anxiety, and a high degree of dependence on the loss object.10 Other high-risk mourners in midlife are socially isolated men whose wives have died, mothers whose children have died, and survivors of sudden or violent traumatizing losses (e.g., suicide, homicide, accidents, and terrorist attacks).11 A risk assessment for grief or bereavement is one way to ensure services will be offered that take account of culture as well as structural inequities. The assessment of complicated grief itself is important because midlife adults may experience a higher incidence of serious, even life-threatening physical and mental health consequences.12 People with complicated grief often have persistent symptoms of separation and traumatic distress and somatic illness. Potential indicators of complicated grief include deep unrelieved depression; intense and prolonged grief or pangs of emotion; self or other destructive behavior; excessive use of alcohol or drugs; excessive

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irritability, bitterness, and anger; distressing yearnings; a shattered worldview (e.g., lost sense of trust, control, or security); feelings of futility about the future; recurrent disturbing images; a feeling of being excessively alone and empty; and an intrusive preoccupation with thoughts of the loss experience.13 The literature does not consistently distinguish between interventions for complicated and uncomplicated grief. Nevertheless, the evidence suggests that adults with complicated grief are more likely to benefit from grief counseling or therapy that moves beyond support- or resource-based approaches.14 The intense suffering and discomfort of complicated grief often compel individuals to seek professional intervention themselves; sometimes family members or friends may seek assistance for the bereaved. For people with a low risk of complicated grief, longer-term follow-up phone calls, information and referral, and support and psychoeducational groups can be effective.

Cultural Considerations As with assessment, interventions for middle aged-adults must be tailored to individual, family, and cultural values and take account of their experiences with racism, homophobia, xenophobia, or sexism.15 Personal, cultural, social, and environmental capacities available to the bereaved should be considered when identifying sources of inner strength that may help grieving individuals integrate their loss. When the bereaved has been a caregiver to a dying family member, for example, professionals must take into account the dying person’s and family members’ beliefs regarding the causes of the illness as well as cultural rituals associated with caring for the body after death and their salience to an overall intervention. As noted in chapter 3, finding the most appropriate place to die is critical to Hmong families who believe people must not die in the home of individuals unrelated spiritually or by blood (e.g., members of another clan).16 A grief reaction considered normative in one culture may be viewed as unusual by another. Acculturative stress and historical/cultural losses and trauma also influence the grief experience and have implications for interventions. For example, bereaved Native Americans and their family members may have experienced trauma related to boarding school placement or felt the effects of cross-generational trauma, which can exacerbate the grief of current losses.17 Interpreters may be required for immigrants and refugees who have experienced violence, war, and forced removal from their countries, although interpreters may not capture the nuances of communication relevant to bereavement.

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Telling the “Story” of the Loss An effective and culturally appropriate way of beginning an assessment is to listen to the “story” of the loss; this is an important part of accepting the reality of its occurrence.18 Telling the story may offer emotional relief, promote meaning, bring people together, and become a gauge for progress as the stories are retold over time.19 The story of a death may be elicited by encouraging family members to describe how the person died, the sequence of events leading up to the death, how and when each family member learned of it, and their experiences and reactions at the time. Story telling may be particularly useful when grieving the deaths from COVID-19 that often happened quickly and away from loved ones. As noted in previous chapters, storytelling is also a useful intervention with younger populations.20 Each version of the story may add details that other family members did not know or understand, thereby enhancing their awareness and empathy. In addition, in their various explanations of the story, professionals often hear hints of anger, regret, guilt, blame, and responsibility for the death, which may suggest more complicated grief reactions, and detect differences among family members’ exposure to the death. Their story also may reveal their cultural beliefs and meaning systems. For individuals grieving particularly violent deaths, restorative retelling is a viable intervention to assist them in addressing the trauma they have experienced.21 All losses are unique; telling the story of a loss is an assessment tool that is not limited to death. For example, a relationship tree combines narrative therapy and art therapy; this intervention can be helpful for grief over numerous types of losses. The tree is used to define relationships; then a therapist guides the person through a narrative process to examine these losses and changes in the person’s relationships since the loss. The storytelling process helps individuals determine areas of misunderstanding, blind spots, and the uniqueness of their grief journey; this therapy combines a comprehensive assessment and intervention process.22

Techniques and Interventions Grief Counseling and Therapy In the introduction, we differentiated grief counseling from therapy. This distinction is particularly relevant for social workers and health care providers working with bereaved middle-aged adults. As noted earlier, losses in midlife differ in their intensity and in the need for professional interventions.

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Chapter 10 addressed the profound loss for middle-aged parents of the death of their adolescent or young adult child. It may be essential for some parents to work with a therapist, but others may find meeting with a counselor and attending a support group sufficient. The text box highlights recommendations for grief counselors gathered from an analysis of several empirical reviews of the literature on grief counseling. The goals of grief counseling vary depending on the bereaved individual; however, a person-centered approach that combines empathy, unconditional positive regard, and genuineness is recommended.23 As noted throughout this text, many different forms of loss, particularly sudden and traumatic losses, precipitate a search for meaning.

 Recommendations for Grief Counselors • Do not assume that grief counseling benefits all; adopt a critical attitude toward methods. • Make careful assessments to ensure informed judgments about the appropriate interventions. • Customize interventions to the individual mourner’s gender, race, ethnicity, sexual orientation, gender identity, personality, and resources. • Tailor the content and process to the individual’s or group’s expressed needs and problems. • Think about the appropriate timing, recognizing that most people integrate their loss without intervention. • In early contacts with newly bereaved adults, offer general support, establish relationships, and provide education, but do not push mourners into clinical treatment. • Concentrate on identifying and engaging high-risk mourners. • Recognize that counseling provided later in the bereavement trajectory may be more beneficial. • Avoid arbitrary cutoffs (e.g., one year) for programmatic bereavement care services, and consider less frequent but longer-term contacts with grief counselors. Source: John R. Jordan and Robert A. Neimeyer, “Does Grief Counseling Work?,” Death Studies 27, no. 9 (2003): 765–86.

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Counselors working with individuals to create meaning can draw upon cognitive and behavioral strategies, keeping cultural context in mind.24 Counseling can build upon common theories associated with grief, including attachment theory and the dual-process model discussed in previous chapters.25 Deriving meaning from the loss is often the focus of both grief counseling and therapy.26 Neimeyer’s work is frequently drawn upon to examine strategies for helping individuals find meaning through loss. Counselors often use three types of questions to facilitate meaning reconstruction: 1. Entry-level questions explore the experiential world of the client’s grieving. a. What experiences of death or loss would you like to explore? b. What do you remember about how you responded to the event at the time? c. How did your feelings about it change over time? d. How did others in your life respond to the loss and your reactions to it? e. What was the most painful part of the experience to you? 2. Explanation-level questions extend these preliminary questions into greater concern with meaning. a. How did you make sense of the death or loss at the time? b. How do you interpret the loss now? c. What philosophical or spiritual beliefs contributed to your adjustment to this loss? How were they affected by it? 3. Elaboration-level questions promote broader perspective-taking regarding the loss. a. How has this experience affected your sense of priorities? b. How has this experience affected your view of yourself or your world? c. What lessons about loving has this person or this loss taught you? d. How would your life be different if this person had lived or this loss had not occurred? e. Are there any steps that you could take that would be helpful or healing now?27 Few grief-counseling models have been empirically validated, but Worden’s task-based model of grief counseling has been widely adopted and is relevant at any stage of life.28 We include it in this chapter because middleaged adults often face multiple losses that can “pile up” and trigger a multitude of reactions. This task-based model was derived from the grief work model, and assessment of the individual and family, including an exploration of their needs, goals, and intervention preferences, is necessary to determine

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its usefulness. The following principles of the task-based model can assist professionals in addressing the complexity of the grief experience. 1. Help the bereaved person actualize the loss. To increase the bereaved’s awareness of loss, practitioners may invite them to “tell the story” of the death or engage in activities such as visiting the grave site. The unreality of the loss tends to be stronger if the deceased is missing in action or disappears in a natural disaster and no body is found, or if someone is murdered and the body is too mutilated to view. Finding tangible evidence to review with the bereaved (e.g., photographs kept by hospitals of stillborn babies not previously viewed by the parents) may be an important initial task. Telling one’s story helps solidify the reality of the loss. Being able to tell the circumstances of a child’s death and its effects on the family system can help grieving individuals come to terms with its broader impact on them and other family members. 2. Help the bereaved express their feelings. Anger, guilt, anxiety, helplessness, and sadness are often unexpressed. Discomfort with these feelings often prompts a referral for counseling. Middle-aged adults who have suffered multiple losses may not know which feelings to express because these emotions are so entwined. After the death of Kobe Bryant and their daughter, Vanesa Bryant wrote that her feelings ranged from anger to guilt to confusion as she tried to wrap her mind around what had occurred. Empathic listening, guided questioning, and normalization of feelings may help bereaved people identify and express these complex emotions. 3. Help the bereaved live without the deceased. Midlife adults may need assistance making decisions, solving problems, and adopting new roles. For instance, middle-aged widows may need to learn tasks previously performed by their partner, such as yard care, paying bills, and even finding a job. Exercising good judgment during acute grief is often difficult, and change may be accompanied by additional losses; the bereaved are often advised to refrain from making major life-changing decisions too soon (e.g., moving, selling property, changing careers, adopting children). Well-meaning adult children may advise their parent to move closer to them following a partner’s death, but this may create additional losses of friends and lifestyle, complicating the bereaved’s grief. 4. Help the bereaved find meaning in the loss. Creating meaning is a critical task for the bereaved, who may struggle with the “why” of what occurred. Why did my daughter get into the car when she knew not to drive with someone who had been drinking? Why did my husband not go to the

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hospital sooner if he was having chest pains? Or why didn’t my wife tell me she was in such emotional pain so her suicidal thoughts could have been addressed? Meaning may be found in an individual’s belief systems, religious or spiritual convictions, lessons learned, or activities precipitated by the loss (e.g., preventing further tragedies such as gun violence through policy advocacy or fund-raising for suicide prevention organizations). Meaning can also be derived over time as individuals wrestle with unanswerable questions surrounding death. Help with emotional relocation of the deceased. Bereaved clients need to “find a new place in their life for the lost loved one that will allow the survivor to form new relationships.”29By internalizing the relationship with the deceased, midlife adults may continue to feel connected with the deceased as they develop meaningful ties to the living. Middle-aged individuals may struggle with “when it is the right time to date” or “to change my daughter’s room.” These decisions are part of the emotional relocation process that helps individuals move forward with life. Provide time to grieve. Grief takes time; indeed, it may never end, and grief may be triggered by critical marker events (e.g., anniversaries, holidays). It is important to help individuals understand the often recurring nature of grief, to encourage them to have patience with it, and to allow for expressions of grief as they arise. Middle-aged adults may be surprised when they experience a “grief burst” years after a divorce when their ex-spouse has complex health issues or even dies. A fifty-eight-year-old woman, divorced for twenty-three years, was astonished at the sadness she experienced that lingered for many months after her ex-husband died. She wondered if it was the final “loss of dreams” that she had blocked out when the marriage ended due to his substance use years before. Interpret “normal” behavior. The emotional, physical, cognitive, behavioral, or spiritual manifestations of grief may feel overwhelming to the bereaved, who may question whether something is seriously wrong with them. Providing information about common responses to grief can help normalize their grief. Allow for individual differences. The variability in how individuals grieve may cause confusion or discomfort among family members who have different grief experiences. Counselors must respect the varied ways that grief is experienced and help families and other professionals understand, accept, and appreciate these differences. From a family systems perspective, some members may be vocal about their grief over the years, and others may choose to leave the room when a relative’s death is mentioned.

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These varied reactions can create challenges if individuals do not recognize the distinctive ways in which people grieve and are uncomfortable with their own pain. 9. Examine defenses and coping styles. Certain forms of responding to loss, such as excessive use of alcohol or drugs, may “intensify the experience of grief and depression and impair the bereavement process.”30 Exploring with the bereaved what they have found most difficult, how they have responded, and what has been most and least helpful enables them to identify strategies that they want to modify or continue. When I (BK) asked a woman how she coped with grief associated with her husband’s illness, she replied, “Oh that’s easy, whenever I give him his Haldol, I take one too.” I was then able to explore with her the extent to which this was helping her, the potential negative long-term consequences of taking his medication, and a variety of other adaptive coping strategies that might be more helpful. 10. Recognize difficult problems that require special intervention. Health and human service professionals are ethically obligated to refer people who have needs exceeding their skills, perhaps to a qualified grief therapist or to a medical professional. People who have developed phobias, selfdestructive impulses, clinical depression, or physical symptoms that parallel those of the deceased may need to be referred for therapy.

Grief Counseling Techniques Part of treating bereaved individuals is less about assessing, analyzing, fixing, or resolving grief and more about how to be present and be a “guardian of the soul.” Drawing on basic counseling strategies, the companion model of grief work encourages counselors to walk on the side of the bereaved by observing their journey and creating a safe place for their expressions of pain.31 The first tenet is being present and a witness to another person’s pain; it is not about taking away the pain. This model recognizes that grief is not about doing but being. It provides additional strategies for counselors to consider, including learning from others rather than teaching them. The text box summarizes a variety of widely adopted techniques for grief counseling, many of which are relevant to working with midlife adults. These techniques have not been evaluated extensively, and further testing is required to document their efficacy. Many of these counseling techniques alleviate a sense of regret and address “unfinished business,” such as the empty chair technique, guided imagery, role playing, and letter writing. Journals can be used to process and record thoughts and feelings and how they change over time.32

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 Counseling Intervention Techniques • Writing: Have the bereaved write a letter or a series of letters to the deceased (or lost object) expressing their thoughts and feelings. This may provide an opportunity to resolve “unfinished business” with the deceased. • Empty chair with or without a picture: Have the bereaved imagine that the deceased is sitting across from them in an empty chair, or place a picture of the deceased on the chair, and encourage the bereaved to express their feelings. • Cognitive restructuring: Help the bereaved identify their thoughts and reality-test them for overgeneralization or inaccuracy. • Role playing: Role-play various situations with the bereaved to help them build their skills, address fears, lessen uncertainty in future situations, or express feelings to the deceased or others. • Guided imagery: Help the bereaved imagine the deceased or re-create situations that they may imagine experiencing or responding to with the deceased. • Journal writing: Have the bereaved write a letter, keep a journal, or write poetry to express their emotions. • Drawing: Although more commonly used with children, facilitated expression through drawing with adults may help reflect their feelings and promote discussion. • Role change analysis: Help the bereaved identify role changes and develop skills to address secondary losses (e.g., how to balance a checkbook, cook). • Listening: Help the bereaved tell the story of their loss by listening receptively. • Memory book: Encourage individuals or families to create memory books that include stories about family events, photos, poems, drawings, or other memorabilia. This activity facilitates reminiscence and provides a concrete keepsake. • Use of symbols: Have the bereaved bring items to share that hold symbolic meaning (e.g., photos, letters, audio- or videotapes, jewelry).

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• Metaphors: Encourage the bereaved to share their own metaphors of their loss or suggest metaphors that seem appropriate to their experience. • Meaning reconstruction interview: Ask questions to elicit an understanding of the loss and the meanings of the loss from the bereaved’s perspective. Sources: Inge B. Corless, “Bereavement,” in Oxford Textbook of Palliative Nursing, 4th ed., ed. Betty R. Ferrell, Nessa Coyle, and Judith Paice (New York: Oxford University Press, 2015), 487–99; Robert A. Neimeyer, Lessons of Loss: A Guide to Coping (New York: Mercury, 1998); James W. Worden, Grief Counseling and Grief Therapy: A Handbook for Mental Health Practitioners, 5th ed. (New York: Springer, 2018).

Writing is a commonly used self-help strategy and a grief counseling technique. People who find it particularly difficult to discuss or disclose painful memories with others may use journals to process their experiences. Journaling can be used as an intervention during a counseling session or as homework.33 Keeping a journal can include daily journal entries, exploring dreams, and other forms of personal expression through writing. Many personal narratives and descriptions of how writing helps integrate grief are available, including Hannah’s Gift, which chronicles a family’s journey after their young daughter’s death from cancer, and Motherless Daughters, which provides insights into the experience of a mother’s death from women at different ages of the life span. In both instances, sharing the story had significant therapeutic value.34 Evidence suggests that writing about traumatic experiences reduces other stressors that compromise the bereaved’s well-being, and writing can help adults overcome negative thoughts, depression, and the pain of loss.35 Destroying their writing some time later can be a sign of letting go of pain, whereas others keep their writing to demonstrate personal growth. An individualized writing program, including both free and focused writing opportunities, helped some individuals understand more about their grief experience.36 Other recent evidence contradicts this assertion. An evaluation of bereaved spouses’ writing found no difference between the control and the experimental group in bereavement distress or number of doctor visits. And in another study, the researchers found no differential effect for bereaved people after an unexpected loss who previously revealed their feelings or felt

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a need to do so. The researchers concluded that writing and other forms of emotional expression may be helpful, but not enough evidence exists to suggest that it will speed up the grief process for uncomplicated bereavement.37 Evaluation studies also need to explore the benefits of journaling in various cultural contexts and in response to different losses. Answers to these questions are needed: How, in what context, and with what populations is keeping a journal likely to be most effective or beneficial? What impact does a journal have on well-being and the grief process of different populations? What kinds of loss are best suited to keeping a journal? Do writing-based interventions make a difference for people with complicated grief? General guidelines for keeping a daily journal include the following: 1. Focus on the most significant or upsetting losses because addressing these are likely to yield the greatest benefit. 2. Write about what you have not fully discussed with others to allow opportunity for expression. 3. Record your deepest thoughts and feelings, with attention to explicit accounts of the event and your reactions to allow a more balanced approach to processing the loss. 4. Abandon any concern about neatness, grammar, spelling, penmanship, and accuracy. 5. Schedule a transitional activity following the writing before jumping back into other life responsibilities. This “buffer period” provides time for you to process any emotions that surface.38 For those who find it difficult to write, use these specific writing prompts to help you start the journaling process: • • • • •

How did you make sense of the loss when it occurred? How does this experience fit with your spiritual views about life? How has this loss shaped your life? What meaning would you like this loss to have in the long run? How has this loss influenced the priorities you have for your life?39

Metaphors are images or symbolic representations of experiences or constructs that hold meaning for individuals, families, or communities. Metaphoric stories of loss express culturally relevant meaning beyond concrete descriptions.40 They can help individuals describe their grief experience in a less threatening way, which can be particularly helpful for those who struggle to express complex emotions.41 As a counseling technique, metaphors may help individuals understand variations in the grief process and

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normalize their experience. Common metaphors used to represent grief include the following: • An onion reveals a core of growth within as the layers are peeled away. • Waves that ebb and flow, whose power comes and goes, may be difficult to ride and may sometimes knock us over, but they may be ridden to shore. • Walls or hurdles are sometimes thin, sometimes thick, and may change their diameter and distancing over time and need to be scaled or jumped to get to the other side. • Canal locks that fill to the brim with emotion require that gates be opened to release feelings and facilitate movement and equilibrium, yet another lock follows and the process must be repeated. • The wound that initially is open, raw, and painful requires cleansing and care to protect it from further damage; nevertheless, it may leave a permanent scar and take longer to heal than a physical wound. • The roller coaster with its twists and turns and ups and downs makes it difficult to see what’s ahead, leaving one with a sense of danger; however, once on the ride, it is more dangerous to jump off than to ride it out.42 Counselors may develop additional metaphors through their own practice. For example, I (SS) use the image of a snow globe to help individuals understand how grief disrupts our world; part of finding a new normal is recognizing that we do not know where the snowflakes will land when the globe calms. I also discuss the image of walking through a dark cave and not knowing what we will find when the light reappears. This metaphor represent our journey through the unknown of grief; although we know the light will eventually appear, we don’t know when that time will come. Professionals may help adults articulate their sense of loss metaphorically by asking them to describe their grief as an image or an object. Individuals sometimes express that part of them is missing or that they are walking a dark road alone. These metaphors help counselors connect the bereaved’s feelings, such as emptiness or hopelessness, to the image described. Metaphors also provide a way to explore numerous meanings and implications of the bereaved’s experience. For instance, a counselor may ask what it feels like to have a hole in yourself or to feel alone in the world. Neimeyer suggested asking about changes in an individual’s metaphor; he offered an example of a woman who described her grief as a constriction around her throat and chest, experienced as an invisible boa constrictor that was suffocating her. She was encouraged to practice deep breathing and to focus on loosening the grip around her, which she found helpful.43 Metaphoric images

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may be elicited in individual or group work and may evolve into stories to document changes in the loss experience over time. Homework exercises between counseling sessions are therapeutic tasks for grieving adults to work on between and before planned counseling encounters to practice processing, problem analysis, self-management, and contemplative skills and to provide a historical documentation of their thoughts and feelings.44 Bereaved adults may work on carefully designed and agreedupon outside activities intended to lead to attitudinal, behavioral, or emotional changes.45 These must be relevant to an individual’s or family’s needs, goals, strengths, and preferences, however. Several grief counseling homework manuals are available with appropriate activities.46 For example, one manual is a practice planner with ready-to-copy homework assignments to help bereaved adults better understand their grief process, express their feelings, identify and track their behaviors, explore meaning-making, reminisce, address unfinished business, make decisions, solve problems, and recognize supports.47 It is unknown how well these assignments work for middle-aged adults from diverse cultures and racial/ethnic backgrounds. To help people understand how homework between sessions translates into positive outcomes for them, assignments should be introduced in ways that enable individuals to see the therapeutic value in the experience. Clinicians should connect the homework assignment to what is happening in sessions. Professionals should consider the following guidelines for betweensession homework assignments: 1. Assign work in collaboration with grieving adults, building on their ideas, preferences, and needs. 2. Respect resistance to homework suggestions and the challenges grieving adults may face in carrying them out. Assume that there is a good reason for hesitation and try to understand this reaction. 3. Respect the bereaved’s privacy by encouraging them to edit their work and select areas of focus. 4. Bring the discussion of homework into the session by asking how the assignment went and have individuals discuss it. 5. Recognize the therapeutic value of homework and refrain from assigning busy work.48

Cultural Considerations As described in chapter 1, traditional grief models were developed based on the experience of people in the dominant culture; these paradigms were

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then applied to culturally diverse and historically marginalized populations. Traditional counseling approaches and mental health services tend to emphasize Western values of individualism, rational and scientific thinking, self-sufficiency, personal responsibility, and an internal locus of control, which are often incongruent with the experiences and values of people of color.49 It is essential that grief research and practice evolve to fully understand how culture, race, and ethnicity as well as systemic racism not only influence traditions associated with mourning but also how loss is experienced.50 A strengths perspective, congruent with the resilience model, may address the therapeutic needs of diverse clients. It builds on personal and community assets to guide work with the bereaved.51 By being aware of and respecting individuals’ positive attributes, aspirations, and resources, the strengths perspective fosters trust, enhances motivation, and empowers people. Moreover, it can be embedded into a brief therapy approach that allows clinicians to “start where the client is” with their grief based on their personal and cultural beliefs and values. Grief strategies that build on the three areas of cultural awareness, knowledge, and skills align interventions with individual and community cultural practices.52 These strategies take account of the following cultural worldviews and constructs: 1. Collectivism refers to value orientations in which people subjugate their personal goals to the goals of the family or community, recognizing that they are interconnected with those around them. 2. A family and community-interdependent values orientation refers to the importance of family, friends, and community as sources of personal empowerment and concern for others that are typically found among racially and ethnically diverse communities. 3. When working with diverse populations, professionals need to consider their comfort in seeking professional assistance, their mistrust or view of professional intervention as stigmatizing, and language and other barriers (such as racism) to accessing services. 4. Spirituality/religion are important internal and cultural capacities that provide support, determine belief and meaning systems, enhance resilience, and help heal emotional, physical, and mental health concerns of populations of color. It is critical for professionals to engage in a process of continued learning and build awareness of how their power and privilege may affect the grief work of historically oppressed groups.53

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The following are some practice guidelines that address implementation of these values, worldviews, and constructs for intervention: 1. Place less emphasis on modifying an individual’s grief response and therapeutic goals. 2. Attend to the social network or the community’s collective goals. 3. Emphasize relational priorities and strategies. 4. Take account of acculturation stress, if any. 5. Integrate spiritual and religious beliefs and support systems and work closely with spiritual leaders to develop interventions or use religious settings as sites of intervention.

Interventions Related to Specific Losses This section examines interventions used by clinicians to address specific types of loss frequently faced by midlife adults.

Parents of Children with a Life-Threatening Illness or Disability Parents of adolescent or young adult children facing major illness or disability are walking a difficult line; they must be a calming and supportive presence for their child but also be an advocate for their child with care providers. Professionals need to communicate with parents to help them understand treatment decisions, disease progression and prognosis, and preparing for the next stage of care. However, communication challenges between professionals and parents can impede care. Challenges include difficulty in explaining aggressive treatment strategies, broaching end-of-life care planning, and discussing poor prognoses and conflicts between care philosophies.54 Clear and direct communication should occur shortly after diagnosis and explore parents’ hopes, concerns, fears, and scenarios linked to “moral distress” for the child.55 These discussions open the door to help families with anticipatory grief reactions that are likely throughout the care process. Interventions may address the following elements associated with anticipatory mourning: 1. Intellectual (e.g., stress reduction, keeping a journal/writing, reading and talk therapy, cognitive-behavioral interventions). 2. Emotional (e.g., emotional expression, interventions to address depressive symptoms).

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3. Physical (e.g., exercise, healthy eating, sleep). 4. Spiritual (e.g., searching for meaning, exploring dreams and spiritual experiences, planning memorials). 5. Social (e.g., bolstering social supports).56 Professionals should also recognize the financial burdens of families caring for a child who is severely ill or disabled and offer information about costs and resources.57 Because mothers and fathers grieve differently during their child’s illness and following the child’s death, it is useful to normalize these responses and help parents communicate, resolve conflicts, make commitments, and cooperate when needed.58

Parents of an Adolescent or Young Adult Who Dies Suddenly Since accidents and suicide are among the main causes of death for adolescents and young adults, parents in midlife may be confronted with their child’s sudden death.59 Interventions must attend to the potential grief complications resulting from a sudden loss (e.g., without time for psychological preparation for the death), the perceived prevention of the deaths (e.g., negligence caused by drunk driving), and the potential trauma caused by inappropriate death notification (e.g., an insensitive police officer telephoning the parents with the news).60 Parents’ grieving sudden and traumatic death indicated that their unanswered questions or misconceptions regarding brain death, organ donation, and their child’s medical care worsened their grief. Accurate information sensitively provided by hospital and trauma service personnel can profoundly affect the grieving process.61 A helpful structured response to families after their child’s sudden death includes thoughtful and transparent responses from agencies regarding what occurred, ongoing support, referrals for additional bereavement support, and in some cases, meeting with other professionals. Parents should be given the opportunity to be present with their child, including the option to bath their child, take photographs, or other rituals that may ease their pain in the future.62 Parents need to talk about their child’s death over and over as they process different aspects of their loss, have their personal reactions accepted, and be with others with similar experiences. Partnering with parents online or through local support groups can provide a forum for both support and education. Interventions can take the form of support groups, one-on-one sessions, family therapy, or couples therapy.63 A review of controlled studies of interventions for bereaved parents concluded that only those parents with high levels of distress, who are at higher risk of more complicated grief or prolonged

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grief disorder, and who request help are likely to benefit from professional interventions.64 This parallels the findings of empirical reviews of other grief and bereavement interventions for adults. Other studies have shown promising intervention results for bereaved mothers grieving an adult child’s death. For instance, mothers who received a minimum of six Trager therapeutic touch sessions over fourteen weeks with a therapist scored significantly lower on despair, depersonalization, and somatization than did mothers in the control group.65 A ten-week broad-spectrum intervention with problem- and emotion-focused components was offered to bereaved parents four months after the death of their children (ages twelve to twenty-eight) due to accidents, homicide, or suicide. Evaluations of this intervention revealed that mothers who were most distressed at baseline benefited the most, but fathers experienced no immediate benefits. This study found intense and prolonged trauma reactions among the majority of parents, confirmed gender differences among them, and suggested the need to develop and test alternative interventions for bereaved fathers.66 In a recent study on maternal grief following a child’s death, interventions consisted of a support package, peer support interactions, and health care professional contacts. The control group only received informational letters on grief. There were no significant differences between the intervention and the control group, but the intervention from health care professionals was associated with the mother’s greater personal growth.67 The same intervention components of a support package, peer support, and health professional support helped bereaved fathers in a variety of settings.68

Death of a Parent A parent’s death in middle adulthood marks a period of significant transition; family dynamics change and new roles and responsibilities are formed. It also brings into focus one’s mortality when becoming the “older generation” in a family.69 Research on adult siblings suggests that sharing their reminiscences about the deceased parents may “enable a family to work toward a common reality about the death, to provide mutual support, to finish unfinished business, and together to wrestle with memories and hopes that are at the heart of grief.”70 Strategies to reduce grief after a parent’s death include writing letters to them and participating in ongoing communication to maintain relationships with siblings.71 Most adults who experience a parent’s death have the capacities to make this transition without professional assistance, but those at greater risk of an adverse outcome should be identified (e.g., adults with severe mental illness

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who relied on their parents for care). In one study, none of the severely mentally ill participants who experienced prolonged grief had been prepared for a parent’s death; this suggests that mental health professionals should offer emotional and financial preparation for a parent’s death along with bereavement counseling. Pragmatic preparatory interventions would help families overcome psychological barriers (e.g., denial, worry, fear) and plan for continuing care management and residential alternatives after the caregiving parent’s death. Empirical studies have not evaluated interventions for adults with mental illness bereaved by a parent’s death.72

Survivors of a Parent Who Commits Suicide The suicide rate for adults ages forty-five to fifty-five is high, and it is important that professionals work with middle-aged adults whose lives are affected by a family member’s or a friend’s suicide.73 The person who finds the body after a suicide may be left with disturbing images and a higher risk of trauma. Professionals have treated midlife adults using interpersonal therapy for depression and cognitive-behavioral therapy for posttraumatic stress disorder with promising results.74 Strategies to address grief include imaginal exposure (e.g., reexperiencing the death scene), in vivo exposure (e.g., direct contact with previously avoided activities and situations), and interpersonal therapy. Adults who received both exposure types of treatment with interpersonal therapy had substantially lower scores for complicated grief than did people receiving interpersonal therapy alone. Although some suicide survivors can benefit from group therapy and education, others require one-on-one therapy to address their significant trauma following the event. A range of interventions after a suicide has been reviewed, including psychoeducational groups, support groups, family-based cognitivebehavioral therapy, group counseling, writing-based activities, and individual cognitive-behavioral therapy. Many intervention studies for survivors of suicide had weak designs and methods, but some studies did find decreases in grief, depression, and anxiety, and enhanced coping after interventions.75

Divorce Divorce requires a major adjustment and can be as or more distressing then a partner’s death, with some midlife adults requiring intensive support. Multiple factors predict the well-being of adults and children in the aftermath of divorce: 1. Availability of financial support. 2. Adequacy of the custodial parent’s parenting skills, nurturing, and warmth (assuming dependent children).

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The noncustodial parent’s engagement and emotional support. Availability of informal social support. Absence or containment of parents’ conflict. Minimization of additional external stressors.76

The divorce process can be divided into stages that capture decisions to be made and transitions to be negotiated, and these stages have implications for appropriate interventions. In the predivorce phase, the couple becomes aware of their discontent. Their anxiety and anticipatory grief increase as they consider separation. The during-divorce phase frequently includes challenging emotional and logistical tasks associated with legal, economic, and parentchild custody issues, spiritual and religious considerations, and the effects of divorce on their social networks. The postdivorce phase, beginning when the legal process is complete, is a time of restabilization and new challenges and opportunities. Individuals and family members experience the grief associated with these transitions differently.77 Preventive interventions often try to reduce stress through group support, enhance competencies, clarify misunderstandings, and provide skills for conflict resolution and anger management. Individual and group interventions for midlife adults address communication and parenting skills, financial planning, social support, depression, self-esteem, legal issues, and career planning. Given the pervasiveness of divorce-related losses, it is surprising that intervention studies have generally not measured grief as an outcome or tested strategies to prevent or minimize it. Here are some questions yet to be explored: Do divorcees want to reduce the grief-related distress associated with divorce? Is the grief associated with divorce amenable to intervention? What interventions for individuals and family members are most likely to help them integrate this loss? How would these interventions vary by culture, gender, sexual orientation, race, ethnicity, and age?

Caring for Adult Children with Mental Illness A family’s response to an adult child’s mental illness is characterized by symbolic loss, chronic sorrow, empathic pain, and the objective burdens of illness symptoms, caregiving demands, stigma, family disruption, and fragmented service delivery systems.78 Their responses are often complicated by disenfranchised grief and limited community supports and formal services. A three-step intervention model can meet the family’s needs: 1. Family consultation to help them determine their needs, provide information about available services, and formulate an appropriate family service plan.

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2. Information, skills, and support delivered through referral to family support and advocacy groups (e.g., National Alliance for the Mentally Ill), family education (e.g., about the illness, its treatment, caregiving and management issues, the mental health system, and community resources), and psychological education. 3. Counseling and psychotherapy for family members “who desire the privacy and intimacy of a confidential therapeutic relationship.”79 Long-term planning to ensure care for adults with mental illness is essential. Case management and assisted-housing communities that promote independence and employment can help families plan for when the caregiver, because of poor health or death, is no longer able to provide assistance.

Caring for Someone with a Chronic Life-Threatening Illness The information and support that middle-aged adults diagnosed with cancer or other life-threatening illnesses and their families need varies with the stage of their illness and their treatment.80 The text box lists the tasks confronting individuals at various stages of illness.81 At diagnosis, midlife adults and their family may need information about the pros and cons of different treatment options, insurance benefits, emotional support, and individual or family counseling. Adults receiving treatment are most often distressed by its side effects. Professionals can use cognitive and behavioral interventions to reduce stress, pain, nausea, and fatigue. New techniques such as progressive relaxation, biofeedback, and hypnosis are used to treat the stress and pain associated with chronic illness, but they have not been rigorously evaluated. Although dated, Doka’s categorization of tasks related to life-threatening illness is a useful guide see the following text box. When people no longer respond to treatment, they face tasks associated with approaching death. Ideally, health care providers ensure that the person does not die in pain, address potential conflicts and anxieties about death, and help with difficult matters such as estate planning, including provisions for child care if relevant, life support if desired, extended and hospice care, and funeral arrangements. Although family members may grieve at any phase of the disease, grief is often acute at the time of diagnosis and anticipatory near the time of death. Fortunately, more health care professionals are now trained in basic comfort measures needed for quality end-of-life care, and with the growth of palliative care, greater attention is given to pain management. The long, painful dying process associated with many chronic illnesses is often complicated by the financial stress put on families.82 With patient

 Doka’s Tasks in Life-Threatening Illness General

Acute

Responding to the Understanding the disease. physical fact of the disease. Taking steps to cope with the reality of the disease.

Maximizing health and lifestyle. Maximizing one’s coping strengths and limiting weaknesses. Developing strategies to deal with the issues created by the disease.

Preserving self-concept and relationships with others in the face of the disease.

Exploring the effect of the diagnosis on a sense of self and others.

Dealing with affective and existential/ spiritual issues created or reactivated by the disease.

Ventilating feelings and fears. Incorporating the present reality of the diagnosis into a sense of past and future.

Chronic

Terminal Phase

Dealing with symptoms, discomfort, pain, and incapacitation. Managing health Carrying out health regimens. procedures and institutional stress. Preventing and managing health Managing stress crises. Managing and examining coping. Dealing stress and examining coping. effectively with caregivers. Maximizing Preparing for social support death and saying and minimizing good-bye. isolation. Normalizing life in the face of the disease. Dealing with financial concerns. Preserving Preserving self-concept. self-concept. Preserving Redefining relationships with appropriate others throughout relationships with the course of the family and friends. disease. Ventilating feelings Ventilating feelings and fears. and fears. Finding Finding meaning meaning in life and death. in suffering, chronicity, and uncertainty. Managing symptoms and side effects.

Source: Kenneth J. Doka, Living with Life-Threatening Illness: A Guide for Patients, Their Families, & Caregivers (Lexington, MA: Lexington Books, 1993).

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empowerment approaches, patients are encouraged early in the disease process to play an active role in their decision-making about treatment, disease management, and end-of-life care.83 Early involvement enables the patient and family system to have multiple discussions that may aid overall adaptation. Communication is often the most important intervention for counselors working with caregivers of individuals with a life-threatening illness. Doka provides a series of skills to help facilitate difficult conversations in the face of life-threatening illness:84 • • • • • • • • • •

Open communication Active listening Focus on nonverbal behaviors Problem-solving Empathy Theme identification Self-disclosure Perception checks with caregivers Affirmation Seek understanding of feelings, behaviors, and attitudes85

Drawing on the classic work of Shneidman, Doka cautions counselors to be aware of how life-threatening situations can create challenges for their practice.86 It is essential to recognize the changing goals and rules of care, countertransference, the counselor’s overall role and purpose, and how work with the family may change over time. Predeath rituals and ceremonies have the advantage of including the dying person and significant others and may help families facing death.87 With social media and online platforms such as Caring Bridge, friends can play a role in the disease process in ways not available in the past. Both the person facing a life-threatening illness and caregivers have an outlet for sharing their stories and receiving support from a wide community. Unfortunately, most of the above tasks and rituals were not available to people dying from COVID-19 in intensive care units.

Spiritual Assessment and Intervention The diagnosis of a serious illness is often accompanied by shock and a lack of control; it may threaten assumptions about life and cause the person to ask “why?” Spiritual needs include attaining meaning, hope, relatedness, forgiveness, and transcendence.88 The text box provides guidelines for exploring spiritual needs that may be used throughout the active dying phase. Professionals should assess the role faith, beliefs, and religious communities play in

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how health care issues are addressed. Moreover, the health care team should understand how religious and spiritual views and practices influence health care decision-making.89 The goals of spiritual care during the active dying phase are to (1) help resolve unfinished business between the dying person and significant others (e.g., expressions of love, regret, forgiveness, and gratitude); (2) promote the dying person’s integrity by honoring his or her life (e.g., encourage reminiscences that recall the “gifts” bestowed on the family and his or her legacy of values and qualities passed on to survivors); (3) help the family and the dying person make meaning; (4) provide comfort by being present and listening; and (5) offer information about bereavement support groups or counseling if indicated.90 Additional discussions and illustrations of spirituality-related assessment and intervention are provided in chapter 13.

 Spiritual Assessment • Ask about the importance of religious or spiritual traditions and practices. • Determine an individual’s and family’s level of hopefulness about the future: “How do you see the future at this time?” “What are you hoping for?” During active phases of dying, reassure them that they can be hopeful while still acknowledging that death is imminent, moving toward a transcendent hope. • Explore prior losses and how the individual and family have dealt with crises of faith or meaning: “What helped you get through that?” • Determine their desire and comfort level in talking about spiritual matters: “Some people need or want to talk about these things, others don’t. How is it for you?” • Assess their desire to speak with a spiritual support person, and ask about people who are available to the family (e.g., rabbi, pastor, spiritual adviser, or shaman). • Explore spiritual self-care practices: “How are you taking care of yourself at this time?” “Are your prayers bringing you comfort and peace?” Offer assistance as needed in developing self-care practices (e.g., meditation, relaxation, prayer).

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• Determine primary concerns or fears. “What is concerning you the most at this time?” “What are your worries?” • Ask about dreams, visions, or unusual experiences (e.g., seeing others who have died) and their meaning. Normalize these if disclosed. • Determine the need, desire, and willingness of family members to engage in forgiveness, express feelings, and say their good-byes. • Explore the need and desire for additional comfort measures in the environment (e.g., soothing music, devotional readings, gazing out a window at nature, or increased quiet). • Inquire about anticipated needs and preferences at the time of death. Source: John D. Chovan, Douglas Cluxton, and Patrice Rancour, “Principles of Patient and Family Assessment,” in Oxford Textbook of Palliative Nursing, 4th ed., ed. Betty F. Ferrell, Nessa Coyle, and Judith Paice (New York: Oxford University Press, 2015), 58–80.

Interventions for Family Caregivers When middle-aged adults care for older parents, they often grieve their parents’ failing health, changes in personality associated with dementia, and disruptions in their daily life.91 Helping midlife adults identify those aspects of the parent-child relationship lost because of their parents’ aging and providing information about the progression and symptoms of illnesses are supportive interventions.92 Intervention research on adult children caregivers is limited, and caregiver studies often combine populations of adult children and spouses or do not report results based on adult children versus spouses. Interventions specific to adult children have demonstrated success, however. For example, the New York University caregiver intervention for adult children was adapted to determine if it could either prevent or delay placement into a long-term care facility.93 Intervention consists of three components: individual and family counseling, support group participation, and ad hoc counseling.94 Adult children in the intervention group were less likely to place their parents in a facility than those in the control group. Other research shows that adult children rely on community resources to ensure that their parent receives needed support while they maintain their other responsibilities such as work and children. Supportive services such as adult day health programs, Meals on Wheels, programs from Aging and Disability Resource

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Centers, financial support, and home health care are frequently utilized.95 Chapter 13 reviews the limitations of intervention studies on caregivers’ grief and offers recommendations for supporting family caregivers in mid- and later life.

Summary The middle adult cohort is often sandwiched between other life transitions, preventing them from fully engaging in the grief process. Although many losses of midlife adults are similar to those of young adults or even older adults, the distinctive developmental challenges of middle adulthood and grief, especially for midlife adults of color and LGBTQ adults, require additional study. A 2004 report concluded that the information that is generated by researchers and the information that shapes services to the bereaved are often inconsistent.96 This is evident by the limited empirical support for grief intervention for midlife adults with uncomplicated bereavement and the potential for harm. Given this persistent gap, we recommend the development and testing of random control trials of interventions designed to address middle-aged adults’ distinctive needs, including those that address differences in culture, race, gender, and sexual orientation, and that reflect current knowledge about trauma. This chapter presents developmental considerations for professionals working with bereaved adults in midlife along with assessment strategies, grief counseling and therapy, other types of interventions including support groups, and cultural considerations. Many of the issues and interventions discussed here are related to losses that are traumatic in nature. However, more research is needed on the various interventions to determine their long-term success for midlife adults who have experienced traumatic loss.

12 Loss and Grief in Old Age

 Of all stages of the life course addressed in this book, old age spans the most years, from age sixty-five to over one hundred twenty. Older adults experience a range of physiological, psychological, and social changes that may be perceived as losses, but most older adults adapt to age-related vicissitudes, are resilient, and find meaning, purpose, and satisfaction in their lives.1 Some losses, however, are more likely to have cumulative and negative impacts on physical and emotional well-being, and we address them in this chapter. These include the death of a partner, sibling, or friend and caring for a partner or other relative with a chronic illness, particularly dementia, or for grandchildren when their parents are unable or unwilling to care for them. Other common losses are living with chronic illness or disability, retirement, especially if involuntary or when financial and health resources are limited, and relocation to a new living situation. Older adults have also experienced multiple losses due to to the coronavirus pandemic, given their higher rates of morbidity, mortality and social isolation from COVID-19. Normal age-related changes and developmental issues do not necessarily hinder an older person’s ability to function daily but may exacerbate these losses. Grief from past losses may resurface again in old age.

Developmental Considerations Old age, the time of life when one is closest to death, was once characterized as primarily a time of loss and detachment from past roles.2 Today older adults in developed countries have more opportunities to be active and engaged, and many contribute to society and their personal growth through volunteering, second careers, part-time employment, spending time with grandchildren, or pursuing lifelong learning. There is tremendous diversity among 298

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the older population, from the young-old (age sixty-five to seventy-four), who tend to be in good health, employed, and active, to the oldest-old (over age ninety), who are more likely to face significant losses due to the highest rates of chronic illness, frailty, poverty, and isolation.3 Age-related physiological changes, such as less stamina and functional ability, may have secondary consequences that limit choices, but older adults generally are able to adapt their physical and social activities. As with every stage of the life course, aging adults can change, grow, and find meaning and satisfaction, although opportunities to do so are limited by race, ethnicity, gender, social class, and sexual orientation/gender identity inequities. Developmental tasks and losses faced by the young-old differ from the oldest-old, who are more likely to experience the losses of widowhood and may live alone and in poverty. Declines in vision or hearing, energy, stamina, mobility, and the ability to perform activities of daily living are common problems faced by older adults, and cognitive impairment or chronic illnesses may necessitate relocation to a skilled nursing or assisted-living facility. These changes have social, psychological, and spiritual consequences, such as the loss of social status, self-esteem, a home, and “productive” roles in society. Because the oldest-old are more likely to outlive family members, friends, and even pets, they may be socially isolated, lonely and have access to few social and community supports, a situation made more difficult during the coronavirus pandemic when elders have been unable to see loved ones and may battle COVID without informal support.4 Older adults may grieve as a result of experiencing many “little deaths.”5 It might be assumed that multiple and frequent death experiences enhance their capacity to grieve well, but this is typically not the case. Instead, some may feel overwhelmed by cumulative negative effects from multiple losses and bereavement experiences associated with growing old; their grief may seem never-ending and more intense than at other life stages.6 Similar to a child’s death in middle age, the death of a partner, siblings, friends, or companion animals in old age may make a person aware not only of prior losses but also of their own mortality; they lose the idea of an endless future.7 Many also have to deal with the cumulative effect of losses and grief created by lifelong structural inequities, particularly racism, sexism, and homophobia. Age-normative losses may be intensified by ageism or Western societies’ tendency to stereotype and minimize the value of older adults. Family members and professionals may assume that loss in old age is “not a big deal” and may devalue bereaved elders’ feelings. For example, after a grandchild dies, younger family members (e.g., parents or siblings of the deceased)

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are usually perceived as the primary grievers, with the grandparent’s grief considered secondary.8 According to Erikson, the primary developmental challenge of old age is the achievement of ego integrity versus despair. This task has also been conceptualized as self-actualization and reconciliation.9 More recently, Levine referred to the theme of old age as letting go of what does not really matter, experimenting with what seems to work, and getting on with whatever is next.10 All of these concepts refer to the task of attaining an inner sense of wholeness and meaning.11 Resolving earlier developmental tasks and coming to terms with one’s past help elders achieve balance and harmony, often through a process of introspection, self-reflection, and reminiscence or “life review” (see chapter 13). They review, evaluate, and reinterpret past experiences to resolve earlier conflicts, let go of regrets and use them as life lessons, and achieve a new sense of meaning, both as an accounting for one’s past life and as preparation for death.12 If older adults cannot do this, despair may result, which translates into dissatisfaction and insufficient time or energy to change direction or compensate for the ways in which they lived.13 The culture, racial, class, and gender biases implicit in Erikson’s developmental stages, which were identified in our discussion of earlier stages of the life course, also apply to older adulthood. Some cultures, particularly Native American and Asian American, accord wisdom and respect to elders, which may be more conducive to achieving ego integrity than the mainstream attitudes toward elders common in many Western cultures. In addition, Erikson formulated his tasks for the last stage of life when life expectancy was shorter and older adults were only a small proportion of the population. Now, however, older adults often have twenty to thirty years after retirement to achieve ego integrity.

Resilience Physiological and cognitive functioning and adaptive reserves, even among the healthy young-old, are reduced to some extent by the normal process of aging, and this tends to affect how older adults experience and grieve loss. Their vulnerability to chronic health problems rises, which is reflected in public health warnings for the elderly to self-isolate during the COVID-19 pandemic to reduce their risk of becoming ill, creating another pandemic of social isolation and loneliness, with many elders dying alone because of physical distancing requirements. Nevertheless, the effects of life stress on wellbeing are often moderated by their resilience, especially if their community,

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family, and cultural capacities are strong.14 Older adults who have positive interpersonal relationships, extensive intrapersonal or internal resources, strong cultural values, and a supportive community can enhance their resilience even in the face of illness, economic adversity, and discrimination. In fact, the oldest-old, especially among populations of color, are often characterized as “hardy survivors.”

Personal Capacities Many elders have an inner strength to adapt to grief and reframe their loss.15 Among intrapersonal resources, the protective effects of personality traits such as extraversion, conscientiousness, and psychological resilience have been identified in many older adults. Psychological resilience, characterized by involvement with others, influence over outcomes, and learning from experience, may be central to dealing with bereavement because it is associated with resistance to and recovery from loss-related stress. In addition, many elders have learned how to moderate their emotions effectively, reappraising negative events to find something positive in them and lowering their goals and standards to handle adversity and to achieve a continuity of self.16 Resilient older adults show more positive emotions after loss and have greater affective complexity, meaning they are able to experience both positive and negative effects even under stress.17 Paradoxically, elders generally report higher emotional well-being and have lower rates of mental disorders than other adults.18 To some extent, this may reflect their tendency to be better at finding meaning and a sense of legacy and confiding in others more than younger adults are.19 Their experiences with loss are undoubtedly influenced by their own proximity to death and their spirituality or religiosity. If older adults have achieved peace and comfort with their mortality, other losses may not be as devastating as they are for younger people for whom death seems far away.20

Social Capacities Older adult’s bereavement takes place amid socially and culturally rooted assumptions about aging. In American society, ageism tends to devalue elders’ past experiences, current competence and roles, and the significance of their life to others. Even though most older people maintain contact with some family members, their social networks often shrink as a result of poor health, deaths, and geographic distance. The absence of family support and a lack of religious beliefs may increase the risk of complicated grief, as was found in a study of caregivers of terminal cancer patients.21 Similarly, poor family

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functioning was associated with a greater risk of prolonged grief of cancer patients in palliative care.22 The risk for prolonged grief disorder is predicted to increase among older adults who lose a loved one during the coronavirus pandemic.23 In some cultures, elders are embedded in strong social networks. The respect and support given to Native American and Asian American elders by younger family members, for example, can enhance their community and cultural capacities in old age. Among LGBTQ elders who have faced a lifetime of adversity, victimization, internalized stigma, and sexual identity concealment, social support and network size are found to be protective factors, decreasing the risk of poor health, disability, and depression and, in some instances, enhancing their quality of life.24

Death of a Partner A child’s death is the most devastating loss in young and middle adulthood, but little difference in grief responses are found for older adults between losing an adult child and a partner. Moreover, some research suggests that a partner’s death in old age is the most devastating and the transition to widowhood among the most stressful changes in late life. Indeed, for older adults who have been together for decades, it is difficult to remember life without their spouse.25 A comment by one widow in a support group captured this feeling: “My husband is just the person I need to help me get through this death.” No matter when a partner dies or under what circumstances or whether the couple is straight or gay, a surviving partner is forced to shift from “we” to “I,” an “uncoupled identity.” A partner’s death brings the loss of a many-layered relationship that may encompass support, best friend, lover, companion, and confidant, as well as shared rituals and traditions, and a central part of the surviving partner’s identity. Significant losses include a future of aging together, achieving retirement dreams, and reminiscing about a shared life.26 A partner’s death can dramatically deplete capacities and reduce wellbeing. It often triggers cascading effects as grief interacts with or exacerbates other changes that may result in declines in health, cognitive function, positive affect, and life satisfaction; impaired immune function; sleep disturbances, exhaustion, and changes in appetite; disruption of social supports, lowered socioeconomic status, involuntary relocation, and other major lifestyle modifications; and even increased mortality and shortened life expectancy.27 These negative repercussions reflect a pattern for older adults who may lose a partner while simultaneously facing other losses with negative

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outcomes. Widowhood is conceptualized as a process more than a single event, particularly if the cause is a partner’s chronic illness accompanied by a lengthy period of caregiving.28 Older adults are more likely to experience a partner’s death than are other adults, and widowhood is generally viewed as a normative event for older women, who tend to be better prepared for spousal death than are older men. Anticipatory grieving may reduce the intensity of their grief,29 but some studies suggest that older widows have higher rates of complicated or prolonged grief compared to younger widows and have higher morbidity and mortality rates than their married older adult counterparts.30 Whether the grief of widowed elders is more intense and longer lasting than that of their younger counterparts is unclear. Rather than age or gender, the grief response may depend on the quality and length of the relationship (e.g., those who had happy marriages to previously healthy partners are most likely to develop chronic grief reactions); the extent of loneliness; and a lifetime of racial, socioeconomic, sexual identity, and gender inequities, which may have impeded the development of internal resources to adapt to late life loss.31 Although older widows’ initial bereavement may be less intense than that of younger widows, their emotional and physical distress is relieved more slowly. The death of a spouse of many years tends to result in a greater disorganization of roles, commitments, and patterns than the death of a younger adult’s spouse of only a few years.32 Bereaved older partners may wonder whether they are normal, especially when they contemplate ending their own lives. Higher rates of illness compared to their married counterparts may result from hormonal responses to the stress of loss, which can lead to suppression of the body’s immune system. Older widowed people tend to visit physicians and emergency rooms more often and to be hospitalized or spend time in long-term care facilities, particularly in the early bereavement period, when compared with their married counterparts.33 In fact, a “widowhood effect”— excess mortality among widows compared with those who remain married—has been identified, especially among those who are socioeconomically disadvantaged and among men whose wife’s death was unexpected. Becoming widowed is associated with an almost 50 percent increase in mortality, often within the first six months of the partner’s death, although this risk declines over time.34 The effects of widowhood on mortality risk, disability, morbidity, and functional limitations are greater for men than for women. Widowers are more likely than married men and widows to die of accidents, suicide, alcohol-related deaths, lung cancer, or chronic ischemic heart disease during the first six months after their partner’s death, but not from causes that are

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less closely linked to health behaviors. This gender difference for widowers may reflect that their late wives tended to monitor their husband’s health and encourage his healthy behaviors.35 The long-term health and mental effects of a partner’s death due to COVID-19, often without being able to be with the dying person, are of concern to health care providers. In addition to affecting elders’ health, widowhood has a negative influence on their self-efficacy, mastery, and self-esteem. Compared to their married peers, widowed people show more negative psychological effects, including depressive symptoms, fewer positive emotions, and lower life satisfaction.36 Whether widowhood is more difficult and has stronger or more prolonged effects on men or women’s psychological well-being is unclear. Psychological distress, such as depression, anxiety, mood alterations, obsessive thoughts of the deceased, disorientation, memory problems, and difficulties concentrating, is generally higher among the newly bereaved, especially men, than among married individuals.37 In fact, men are more likely to become depressed before their spouse’s death, perhaps because they are typically more dependent on their spouse for informal support during their marriage and have more difficulty expressing their feelings. However, gender differences in psychological distress may precede rather than follow widowhood, perhaps because of the burden of dealing with a spouse’s illness or extensive caregiving.38 Nevertheless, over the long term (e.g., more than two years), the negative effects on health experienced immediately after a partner’s death generally diminish, particularly for men.39 The grieving process associated with widowhood is often characterized by resilience, which allows feelings of self-confidence, self-efficacy, and personal growth to follow short-term depression and illness. A partner’s death is not universally distressing, and short-term sadness immediately after the loss may be followed by relatively few psychological distress symptoms as widowed people adapt, although some individuals take two to three years to do so.40 Older widowed people characterized as resilient showed less depression, less hopelessness, and less loneliness; higher life satisfaction; and better subjective evaluations of their health. Their resilience varies with contextual factors, such as characteristics and history of the relationship, nature and location of death, time since loss, and the co-occurrence of other stressful events. It also varies with the bereaved’s personal and social capacities (e.g., personality, social support, economic resources, culture, and prior mental health and inequities faced). Overall, widows are more likely to be resilient than widowers.41 The quality of the lost relationship affects bereavement, although findings are mixed about how.42 Grief tends to be less for those whose relationship was

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conflictual.43 In contrast, short-term grieving is often more difficult for those whose relationships were harmonious and characterized by warmth, strong connections, and emotional dependence. Those who perceive their relationship more positively may feel particularly cheated of time with their partner or that their loss was unjust.44 Over time, however, these strong emotional qualities may be protective, fostering resilience, ongoing bonds, solace, and personal growth.45 Older adults’ response to grief also varies with the timing and nature of their late partner’s death, with time to prepare (e.g., anticipated deaths) generally less distressing than an unanticipated death. Sudden deaths are assumed to result in a more difficult grief process, but time to anticipate is not always helpful. For example, if a dying partner suffered in pain, the bereaved partner tends to be more prone to depression, guilt, and feelings of helplessness; to experience negative health effects; and to recover more slowly.46 However, caregivers who provide direct care do not necessarily show more distress after their partner’s death than those who did not give such care. In fact, caregivers may even experience improved emotional well-being because they are relieved of the stress of caregiving, which may have created other losses, such as time with friends.47 Similarly, the length of an illness also affects the grief process, with some studies identifying more anxiety and feelings of isolation and alienation in those whose partners died after a prolonged illness. In instances of protracted death, extensive caregiving, and long exposure to chronic stressors, the loss may be more difficult to integrate than a sudden death.48 Others suggest that the critical variable is the bereaved person’s perceptions of their preparedness for their partner’s death, with complicated grief reactions more common in those who felt unprepared, a pattern that has characterized the relatively short dying trajectory due to COVID-19.49 If so, it is not surprising that traumatic reactions are found most often when a partner’s death is from an accident, suicide, or homicide. Some early studies found that COVID-related deaths share features with traumatic grief related to natural disasters and ICU treatment.50 The location of death is another factor that affects bereavement; the bereaved person feels less distress if a partner died at home rather than in a hospital or a long-term facility, and particularly if able to be with his or her partner at death.51 Bereaved caregivers of patients who died in a hospital or ICU, which has been the case with most COVID-related deaths, are at increased risk of anxiety, depression, posttraumatic stress, and prolonged grief.52 Dying in a familiar and comfortable setting may foster feelings of

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control and mastery and make it easier to talk about death, but some studies found that the bereaved adapted more quickly when their partner died in a long-term care facility, perhaps because they had grieved in anticipation when their partner was placed there.53 Widowhood marks the undeniable end of a partner’s intimacy, attachment, and support. As a result, both widows and widowers must engage in the process of reconstructing their identity and learning to be on their own in the face of disrupted everyday life.54 It is not surprising that loneliness is the greatest challenge because social relationships inherent in being a couple are disrupted, even though friends and family may offer support immediately after the death.55 In fact, the terms widow and alone are almost synonymous, at least during the early phases of widowhood. Loneliness is most intense among those whose relationship was harmonious and may be increased by isolation in one’s home and the absence of physical and emotional intimacy; isolation was experienced for months by widowed elders in long-term care facilities who could not have visitors during the pandemic.56 For both widows and widowers, social isolation can impede their grief process, which is often the case during the coronavirus pandemic.57 However, loneliness is subjective in nature, individualistic, and encompasses perceptions of the quality of social relationships and satisfaction with them, so it does not necessarily mean that widowed people are living alone.58 Feeling lonely is distinct from being alone, and social support from friends can mitigate loneliness, although not always. Most people adjust to being alone, and any loneliness decreases over time as they move through the grief process, redefine past couples-based social relationships and expectations of their informal networks, and garner new sources of social support.59 For widowers among the current cohort of older adults, a partner’s death is more disruptive to everyday activities than it is for widows. For many older men, their wife’s death is unexpected (“I always thought I’d be the first to go”). Describing themselves as sad and numb, men more often complain of loneliness, experience lower life satisfaction, and make slower emotional recoveries than do women. For men who focused largely on paid work, their wife’s death may raise issues of self-identity and profoundly affect their social relationships. Men tend to have larger nonkin networks, perhaps as a result of employment, but men are less resourceful in planning social get-togethers and building informal networks that substitute for the sociability they typically enjoyed in marriage.60 Given these factors, men may “need” dating more than women do, having been socialized to move more quickly into restructuring their lives through remarriage. In contrast, women are more likely than

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men to experience decades of widowhood.61 Although his wife’s death may significantly impair an older man’s well-being, it is less likely to disadvantage him economically. Some men experience pride and enhanced self-esteem from mastering new household skills. Widows are more likely than widowers to experience declines in their economic well-being after a partner’s death. For low-income women, women of color, or immigrant women, issues of financial security may be more distressing than other aspects.62 Recent research, however, suggests that widowhood may not be as devastating for older women as is commonly assumed, in part because women have stronger emotionally intimate social relationships over the life course, including more extensive friendship networks and greater social integration.63 Some widows experience gains as they renegotiate their relationship with adult children, friends, and other relatives that give them new meaning, and as they learn new skills such as financial management. However, older widows who defined themselves primarily as a married person rather than by employment or other external activities face greater disruption to their self-concept. Engagement with others, perceived control in their lives, feeling capable of a new positive self-concept, and an attitude of learning from experience appear to decrease perceived losses and increase life satisfaction.64 For some women who have been restricted or abused in their partner relationships or faced long-term care responsibilities, widowhood can bring opportunities to explore new interests and experience personal growth. Many widows do not want to remarry, continuing to feel connected with their deceased partner and discovering advantages to living alone. Overall, women living alone today, including widows, seem to feel more positive about their autonomy than women did in the past.65 Remaining socially connected and being engaged in everyday life appear to be central to resilience among bereaved older adults. Perceptions of support both before and after death may be more important to assessing support satisfaction than are objectively measured social network characteristics.66 Well-being is likely to suffer substantially, however, if the bereaved anticipate that no one will offer comfort when they are distressed. With increasing age, there may be fewer people available to provide solace, especially if they are the oldest-old who have outlived friends, colleagues, and even adult children or if their family is at a geographic distance and cannot be present because of social distancing requirements. Feeling that they are without anyone to depend on can inhibit proactive efforts to reach out to others for support.67 Another loss is feeling disconnected from couples with whom they used to socialize. The norms of reciprocity and sharing inherent in friendships may

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no longer fit when the configuration of the couple has changed.68 Friends still in couple relationships may desert widows, wanting to avoid a close connection with her emotions and their own partner’s mortality. They also may feel awkward with a widow’s altered status, especially if they were accustomed to only couple relationships. Not feeling part of a cohesive group can adversely affect well-being.69 Others may minimize the death, commenting, “He lived a long life,” or “She is free from her suffering.” Answers like these are not helpful to elders who are trying to redefine their life in the context of lifelong losses. A new friend who has recently experienced a partner’s death and can share similar feelings may be a critical source of support.70 Many widows form strong peer networks and benefit from widow-to-widow support groups. As discussed in chapter 3, gender differences have been identified in how we grieve, with older women more often expressing grief in an affective (emotional) manner and men in a physical or cognitive (instrumental) manner, although these differences are not universal nor necessarily determined by gender.71 Even though both men and women have strong grief feelings, men in this current cohort of older adults generally do not talk openly about their feelings and fear that a public display of their emotions will cause discomfort to others. Instead, they may prefer to express their grief through problemsolving actions and trying to change the future (e.g., setting up a memorial fund in their wife’s name) rather than talking about the past. As a result, older men’s grief may not be immediately evident to family or professionals because it can be a form of talking without the words and even of “crying without the tears,” but it is still emotionally powerful.72 Given the highly individualized nature of late-life bereavement and the tremendous variability in grief responses, professionals need to legitimize different ways of expressing grief and be careful not to disenfranchise older men’s instrumental pattern of limited emotionality.73 Disenfranchised grievers—lovers, former partners, LGBTQ partners, and others who are rejected by the immediate family—may mourn their loss with little family or community support. Research on older LGBTQ partners’ grief is limited.74 The relationship of some older gays and lesbians may become public only with their partner’s death, so they must deal simultaneously with both their grief and their family members’ reaction to their coming out. They may have to bury social aspects of their grief and struggle alone with ambivalence, guilt, and isolation, without support of family and colleagues. In a phenomenological analysis, older lesbians who had lost their partners described feeling alone, isolated, and excluded; navigating invisibility in the face of homophobia that impeded recognition of their

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grief; and finding new relationships in which they could be themselves.75 In another study, older lesbians believed their experiences were different from women in heterosexual relationships; they felt their loss was devalued and less respected, including by family members. They described how the emotional stress of their loss is amplified by legal battles and by the lack of same-sex support groups.76 For example, LGBTQ partners may not have sick leave, hospital visitation rights, access to their loved one in an ICU, bereavement leave, or rights to their partner’s health benefits and financial resources. With the Supreme Court ruling on marriage equality, these benefits are becoming more widely available today. In other relationships not socially sanctioned, such as that of lover, the disenfranchised bereaved partner may not be permitted to express grief or even participate in funeral arrangements. At the same time, the bereaved partner may lose access to extended family that might otherwise have been supportive. Over time, most widowed adults are able to balance the positive (e.g., involvement with grandchildren, meeting new people, dating) and negative aspects (e.g., loneliness, “feeling down”) of their lives.77 In some ways, this is similar to the dual-focus model of bereavement of both acknowledging and avoiding grief. This back-and-forth process makes it easier to integrate the loss without grieving continually and affects well-being both early and later in the bereavement process.78 Restoration-oriented coping—learning new tasks and skills that their spouse may have performed—appears to be most helpful, resulting in feelings of confidence and independence.79 Those who focus on denial/avoidance of restoration changes and distraction/avoidance of grief adapt less well than those emphasizing new roles, identities, and relationships.80 Continuing bonds with their deceased partner can allow widowed people to make meaning of their relationship, reassess regrets, and identify lessons learned.81 The widowed person’s relationship with the deceased can be transformed, enabling memories to provide a measure of strength, warmth, and solidarity. Widows, for example, may derive comfort in maintaining a loving relationship with their lost partner via seeing, hearing, or sensing their presence; through memories and dreams; and in taking on activities of the deceased.82 The ability to incorporate memory of the deceased into the bereaved’s life enables them to expand their social networks. Those who find purpose in their suffering adjust better than those who do not. For example, Chinese widows in the United Kingdom dealt with their husband’s death in terms of fate and nature, concepts central to Eastern philosophy.83 Meaningmaking encompasses reconstructing a purposeful worldview and identity and

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understanding the loss, perhaps through supporting other widowed individuals. Over time, they may be positively transformed by the death and develop optimism and compassion.84

Death of a Sibling Sibling relationships represent the one family bond that can last a lifetime, and siblings are often lifelong members of older adults’ social networks. In fact, it may be the longest family bond for adults, sharing deep roots to a past that no one else can fully comprehend. In contrast to friendships, sibling relationships are permanent. Although a sibling’s death is common in old age, it has received relatively little attention in research or practice.85 The sibling relationship in old age is characterized by a shared history, egalitarianism, and increasing feelings of closeness and affection, especially among sisters.86 Given their unique relationship and history, siblings usually have very close bonds, whether positive or negative, harmonious or conflictual. As they age, siblings often renew past ties, forgive prior conflicts, and become more emotionally committed and supportive of each other. If they have grown apart, they often come back together around significant life events, such as death, divorce, birth of grandchildren, retirement, and illness. Older adults may experience greater emotional intimacy with siblings in later life, and siblings can be vital sources of support during widowhood.87 Moreover, just knowing that a sibling is there, even if they do not turn to him or her, can be a critical source of emotional support.88 The death of a brother or sister at any age often has a profound impact on the sense of well-being, self-identity, and mortality of the surviving siblings.89 In old age, a sibling’s death is frequently accompanied by other significant losses, resulting in “bereavement overload.” It tends to affect physical and mental health, including an increased risk of depression.90 These health consequences may be due in part to an increased awareness of one’s own mortality, as well as to losses of personal identity, family history, validation of family stories, and emotional support.91 Older adults of color may be more likely than whites to report being close to siblings and being substantially affected by a sibling’s death, resulting in more intense grieving.92 Increased mortality rates due to sibling bereavement cannot be explained fully by shared genetics.93 Social supports for the siblings of a deceased brother or sister are limited, although surviving siblings may comfort one another through shared reminiscences. As is true with earlier life stages, bereaved siblings may experience disenfranchised grief because most of the attention during mourning

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goes to the immediate family (e.g., the partner and children), pushing siblings to the periphery and creating relationship challenges that may be difficult to navigate.94

Death of Friends The deaths of friends and colleagues increases as one grows older, especially for those whose social networks are composed primarily of age peers. In some instances, such as a childhood friendship, a friend may have been a closer confidant than one’s partner. Lifelong friends share a history of memories and experiences that no one else can fully understand. Their lives have been intertwined over many years, creating a sense of inseparability. With a friend’s death—similar to that of siblings—older adults lose a past that cannot be recaptured with anyone else.95 Women express more grief over a friend’s death than do their male counterparts, whose friendship networks are not as close. Elders may be less prepared emotionally for a friend’s death, especially if it is accidental, than for those of some family members. In addition, others may minimize a friend’s death. Friends are typically accorded fewer rights as mourners than perhaps even more distant members of the deceased’s family, making this another form of disenfranchised grief. Indeed, the friend “who was always there for us” is generally not recognized in obituaries or eulogies. LGBTQ older adults are especially likely to have suffered deaths of friends and to experience depression because of the historical impact of the AIDS epidemic. Relatively little is known about the cumulative effects of numerous friends’ deaths in old age, but one longitudinal study identified that a friend’s death influenced depressive symptoms more than functional health status.96

Caregiving As stated in the introduction, loss and grief are the price people pay for love and commitment to one another. Most caregivers choose to care for a loved one, sometimes for nearly a lifetime, because of love and dedication. Whether caring for a partner with a chronic illness, an adult child with disabilities, or grandchildren (or great-grandchildren), older adult caregivers experience numerous losses, which can result in predeath grief that adversely affects well-being.97 These losses can be physical (a partner to help maintain the house), psychological (family members as once known), social (leisure, social life, income and assets), or symbolic (self-esteem, self-worth, and identity subsumed by caregiving). Nearly all types of caregiving entail the loss of personal

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dreams such as travel, intimacy, and new discoveries in retirement; financial security; and a sense of justice and fairness. Regardless of the type of loss, deprivation of some kind results. If caregivers’ needs become subordinate to those of the person being cared for, caregiving may result in chronic sorrow. As is true of caregiving in middle adulthood, caregiving in old age also may provide rewards, such as chances for greater closeness, intimacy, and pride. Consistent with the resiliency model, gains can be influenced by spiritual and personal growth and the experience of mastery.98 The most common form of caregiving by elders is care for their partner. Partners are more likely than adult children to perform higher-end complex medical care tasks, spend more time and longer periods of time with their partner, and experience a greater burden of care.99 A variety of other losses— companionship, shared activities, and intimacy; feeling isolated and alone with their partner; lack of outside help from familyor home health aides; and limited financial resources compared to nonspousal caregivers—create greater stress. Partners tend to report sadness, anger, frustration, yearning for the past, social isolation, regret, and guilt more than do other adult child caregivers.100 In heterosexual relationships, husbands tend to be the first person called on to care for their wives, to be the oldest caregivers, and to spend the greatest number of hours in this role. Yet they generally report less distress than wives, perhaps because they often redefine the relationship in terms of task accomplishment and are more likely to experience instrumental problems of care, not emotional challenges. Because caregiving work is not part of their self-concept, caregiving difficulties are less likely to detract from their identity. In contrast, wives may experience greater losses in marital and family relationships and social involvement from caring than do husbands.101 Similar to middle-aged adults caring for parents living with dementia, losses tend to be intensified when caring for a partner living with Alzheimer’s or another severe cognitive impairment (those who are comatose, another neurological disorder, a brain injury, or a personality distortion caused by a stroke). Compared with other caregivers, partners of persons living with AD are at a higher risk of strain; health problems, particularly depression; and family conflicts; and they have less time for leisure and other family members. The loss of recognition by and intimacy with the care recipient are especially painful.102 The concept of “learning to bend without breaking” refers to the partner’s need to accommodate the unpredictability and continuous change inherent in living with a relative with dementia.103 When their loved one’s personality dramatically changes and new disruptive behaviors emerge (e.g.,

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emotional and verbal abuse, aggressive behavior), losses can be profound and the grief process prolonged for years. Whereas adult children typically express grief from caregiving as the loss of their relationship with their parent and of opportunities for themselves, partners express sadness for the loss of the couple’s identity and for the ensuing uncertainty and aloneness.104 High levels of stress are also often due to the ambiguity of the situation: the person is physically present but cognitively and emotionally absent. Living in a state of “quasi widowhood,” caregivers of relatives living with dementia refer to their loved one dying twice: the psychological death of their loved one, followed by the physical death. Long-term ambiguity about the care recipient’s place in the family system—whether he or she is “absent or present, dead, or alive”—can intensify caregivers grief reactions.105 With such an ambiguous loss, to grieve in socially sanctioned ways seems premature because this would remove any hope of a return to their prior life, but caregivers know that their partner will never return. This can generate ambivalent feelings and behaviors toward the person living with dementia, including alternating between wishing for this person’s death as a way to resolve ambiguity and holding onto hope and wanting to maintain a close relationship, particularly when there are occasional glimpses of the person’s former self. Families may cope in extreme ways, seeking closure and acting as if their loved one is already dead or reacting with denial and acting as if nothing is wrong. The greater their ambivalence, the higher the likelihood of caregivers’ depression, anxiety, exhaustion, and immobilization. Closure is impossible because the caregiver’s grief cannot be fully resolved while the person with dementia is alive. Moreover, the caregiver is left feeling guilty, uncertain, and confused, and his or her life seems to be on hold.106 When caregivers fluctuate between hope and disappointment, sometimes for years, these emotions can deaden feeling and make it difficult for people to move on with their lives. Unable to live normally, such long-term ambiguity can create loss of identity and mastery, leading to helplessness and hopelessness in the family system. Family members continually redefine and reinterpret their relationship. Each member’s perception of reality affects the meaning of loss and how family boundaries are defined. With no rituals for support, there is often no resolution of grief.107 Caregivers of partners living with dementia or another severe cognitive impairment may also experience chronic sorrow created by caring for a long time without a predictable ending. Their grief is also often disenfranchised because friends and family may not know what to say or do and may visit less often, increasing caregivers’ isolation.

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Primary Caregivers for Grandchildren Grandparents and other extended family members in families of color and from other cultures have traditionally cared for grandchildren, often to support young employed parents. What has changed in the past three decades is the rapid growth in the number of grandparents who are sole caregivers for grandchildren because their adult sons or daughters are unable or unwilling to provide care.108 Although some grandparents gain tremendous pride, love, and feelings of being needed from caregiving, they nevertheless face numerous losses: • • • • •

Retirement time or income. Dreams of their multigenerational family. Leisure and recreational time for themselves. Friends they no longer have time to visit. Shame over their adult children’s inability to care for their own children.

Grandparents also grieve the loss of the adult children they knew as children and young adults—in effect, their adult child’s symbolic death.109 Their losses may be further intensified if their children’s absence is due to death, incarceration, substance use, or major illness, such as HIV/AIDS.110 Regardless of the cause, most grandparents feel ambivalence, disappointment, resentment, shame, and guilt over their apparent failure as parents to raise an adult child able and willing to care for his or her own children, which necessitated that the grandparent expend extensive time and money to care for these children.111 Grandparents may experience a loss of identity and selfesteem as “good parents,” along with alienation from their children. Society may reinforce this negative self-judgment because of common misconceptions of grandmother caregivers as nondeserving (e.g., “they could not have been good parents given how their children have turned out” or “the apple never falls far from the tree”). When grandparents play a behind-the-scenes role of “taking care of everything,” they generally experience psychological distress, putting them at risk of mental health problems such as depression. They also tend to rate their health poorly, experience multiple chronic health problems, and avoid seeking care for themselves, especially for mental health conditions.112 They may experience financial decline because they reduce their work hours in order to take care of the grandchildren, and may need to use resources being saved for their retirement or health care emergencies.113 Financial stress can exacerbate other types of distress, intensify feelings of being overwhelmed by multiple roles, and compromise their health.

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The nonnormative nature of grandparent caregiving can intensify feelings of loneliness from their own age peers who do not share similar responsibilities. Giving up dreams about their family and life as an older adult, they may envy friends who are free to enjoy a child-free old age. They also may grieve the loss of a traditional grandparent role, enjoying their grandchildren without having primary responsibility for them. Grandchildren may be embarrassed having an older relative caring for them and may long for their parents, thereby intensifying grandparents’ grief. To outsiders, grandparent caregivers may be invisible, largely because of their age and gender (most are women). Service systems such as public child welfare, community mental health, and public schools are not equipped to support grandparents, to offer them legal and financial benefits, or to recognize the grandchild’s losses, which can intensify grandparents’ loneliness. In public, grandparents may try to appear to be the parents to increase the probability of others’ support, typically that of younger parents. It is especially painful when other family members and peers fail to help out, increasing their sense of isolation and feelings of anger. Their losses are exacerbated by the lack of public recognition for their hard work of caregiving. However, some grandparents may experience gains in self-worth, self-esteem, and confidence from their contributions to their grandchildren’s well-being. This sense of accomplishment is lessened, however, when grandchildren have behavioral or physical problems.114

Loss from Chronic Illness and Pain In the United States, independence is seen as the ideal way of life, and older adults typically seek ways to maintain an autonomous identity as long as possible. Some older adults resist asking for any help because dependency is viewed as a negative and as an undesired outcome. Older adults with chronic disabilities not only lose their health and possibly their autonomy but also lose their individual and social capacities. Their self-confidence, self-esteem, self-determination, and self-concept as an active person are diminished by needing help, and their informal family and community capacities may be altered through losses in interrelationships, employment, social life, and dreams of what their old age would be. When elders move from being healthy to having a chronic condition, from feeling in control to feeling powerless and uncertain, from feeling attractive and energetic to undesirable and tired, they not only lose their ability to perform daily functions but also lose much of themselves.115

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Underlying these more visible losses are those due to being treated as “other.”116 Elders with chronic illnesses or disabilities often experience labeling, exclusion, silencing, and prejudice, particularly when others imply that they are responsible for their illness. Disability or loss of function, in particular, carries a stigma and to some extent exclusion in many Western societies. In addition, elders may experience loss of body image, intimacy, and sexuality.117 Such losses are generally magnified for residents in assistedliving or skilled nursing facilities, where they experience losses of personal competence, dignity, control, and decision-making.118 Restrictions on their autonomy, inherent in many long-term care settings, can elicit powerful grief responses when others discount their pain, and may increase the risk of negative thinking, feeling misunderstood and depression. These losses are typically exacerbated for elders with a diagnosis of dementia, who may feel a sense of shame and stigma from losing their memory and sense of self.119 Given these multiple and continuous losses, it is not surprising that chronic illness can be traumatic for elders.120 Elders with debilitating illness and pain not only mourn their old self but also must reconstruct their identity in a new reality. Many bring strong personal capacities to these challenges, such as learning how to find something positive in negative events, engaging in benefit-finding, and using humor as a way to cope with indignities.121 Elders with adequate internal and social capacities are able to discard some of their prior assumptions, adopt new ones, and reconceive their identity, retaining a sense of well-being, a conviction that life has meaning, and a sense of integrity and engagement. These aging adults still feel mastery over some areas of their life but learn to let go of the need for control in areas where autonomy is more difficult.122

Retirement and Loss Even though many adults look forward to retirement, some retirees experience feelings of grief and meaninglessness. When retirement is experienced as a crisis, it may also result in depression.123 Losses may be particularly intense for retirees who feel pressured to do so because of poor health, ageism in their workplace, or where mandatory retirement rules still exist. Among the losses are the paid work role, colleague networks, reassuring routines and structure to their days, financial stability and lifestyle, interpersonal relationships and the social integration of work and, perhaps most profoundly, identity when one is no longer defined by a title, position, or status. The sense of not contributing to society can threaten an older adults’ status and feeling that they

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matter to society or to themselves.124 In fact, some retirees, particularly those in professional positions, may feel more burdened by a life without employment than enjoying their freedom and autonomy; departure from their life’s work and its titles and roles can mean losing a core and fundamental component of their personal and social identity and fulfillment.125 Being viewed by society as both retired and old can heighten retirees’ sense of vulnerability. Retirement also may change marital/partner relationships; partners suddenly have more time with each other and less autonomy, and their friendships and community relationships may be altered. A successful role transition to retirement necessitates that older adults change their definition of self in a modified social context, perhaps through adopting an active and engaged lifestyle of travel and volunteering or choosing a more disengaged way of living, such as reading and meditation.126 Retirees who lack choice about the timing of retirement may feel discontented, regretful, powerless, depressed, and anxious and their well-being may be adversely affected. These retirees tend to face a harder time determining how to reinvent themselves and how to spend their time for perhaps the next twenty or thirty years.127 If they retired because of poor health, this can be a risk factor for illness and mortality. Many retirees grapple with their mortality and sense that time is limited and they confront losses associated with their legacy.128 Although baby boomers who have sufficient financial resources are redefining retirement as a time of new beginnings, retirement can be a rudderless time and feel unsettling and disorienting because change happens on many fronts. Without customary routines, retirees may experience uncertainty and anxiety over the unknown. They have to grapple with what it means to be “productive” and redefine themselves.129 The concept of generativity is brought to the foreground as retirees begin to rethink the meaning and purpose of what they do. Many experience maturational loss—the part of identity that has given them a sense of self-worth—which may push them to seek recognition and worth in other pursuits.130 Consider how often retirees are asked questions like these: “What do you do?” “What did you use to do?” and “What are you doing now to keep busy?” Renegotiating their identity and source of meaning in retirement is an ongoing psychosocial process of identity transition rather than a discrete stage. In addition to grappling with who they are, they may struggle with maintaining structure and social connectedness.131 For some, retirement is a time of psychospiritual growth. However, low-income retirees generally have fewer opportunities to confront issues of meaning and need to find part-time work to supplement their modest Social

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Security income. Reemployment not only brings additional income but can positively affect psychological well-being. But for far too many others who have experienced gender and racial inequities across the life course, reemployment just means getting by financially.132 Many retirees need time to deal with the discomfort that often emanates from living with the unknown and to grieve, although others may not acknowledge this need. Some may undergo the yearning and searching phase of the grief process as they seek new ways to reorganize their life.133 What may be most helpful is that family, friends, and professionals acknowledge their loss and grief rather than assuming that retirement is “the best years of a person’s life.”

Relocation and Loss Retirement also may bring relocation, either voluntary (choosing to downsize) or involuntary (moving to a skilled nursing facility because of poor health). In both instances, older adults not only lose a home but also a lifetime of possessions to which powerful memories are attached along with their sense of identity and community connections. Home may represent a lifetime of continuity or the last remaining connection to a deceased family member, along with one’s sense of control, familiarity, and security.134 Their grief is often disenfranchised by family members who become irritated by their loved one’s refusal to move to a nicer or safer environment. Involuntary relocation to a long-term care setting may entail numerous losses—of independence, connections to place, and a sense of belonging. These may occur either in the time period leading up to relocation or after the placement, resulting in trauma for some elders.135 When older adults are not involved in the decision-making process, the move is particularly distressing, resulting in a prolonged adjustment period, helplessness, insecurity, vulnerability, lack of control, and dissatisfaction.136 In fact, movement into long-term care is associated with rates of posttraumatic stress disorder ranging from 9 to 22 percent.137 The extent to which trauma resulted from prolonged lockdowns in long-term care facilities because of COVID is unknown.

Summary All older adults grieve losses, but some are more resilient than others. Their resilience may be threatened by chronic illness and pain, reduced social networks, geographic distance from family, limited community participation,

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lifelong inequities resulting from race, gender, sexual orientation and gender identity, and multiple losses from the coronavirus pandemic. Losses characteristic of old age are the death of an adult child, sibling, friend, or partner, with widowhood profoundly affecting their life; caregiving for a partner or grandchildren; dealing with disability; and unwanted changes connected with retirement or relocation. Even as elders grieve losses, they often are able to reconstruct their life to create meaning and seek new ways to be involved in their communities and culture. In doing so, they strengthen their capacities, including their inner capacity to derive meaning from loss. This resilience, in turn, can enhance their well-being.

13 Interventions for Grieving Older Adults

 Older adults face losses across the life span that differ from those of younger and middle-aged adults. Ageism, physical and functional changes, accumulation of losses over time, and anticipation of death create complex loss and grief situations that tend to increase as we age. In this chapter, we identify strategies that address distinctive age-associated challenges and describe developmentally appropriate grief interventions.

Multiple Losses Accumulated losses and attendant depletion of individual and social capacities can complicate older adults’bereavement, particularly when a new loss occurs before previous ones have been resolved. For example, elders who have survived the deaths of their siblings and a partner, are frail, live in an assisted-living facility, and have few outside social contacts are at greater risk of social isolation and depression than their healthier counterparts. As losses compound for aging adults, it can feel overwhelming. During the coronavirus pandemic, elders who feared loss of health and life (their own and love ones’) became even more socially isolated in their homes or skilled nursing facilities; they were unable to plan for the future and lacked control over their daily lives (e.g., anticipatory grief). Using the resilience model, professionals tried to strengthen mutual support networks and draw upon elders’ internal personal capacities, such as spirituality, self-efficacy, and wisdom, to address their cascading losses and resultant depression, anxiety, isolation and loneliness.1 We begin with a brief review of additional challenges often encountered when working with bereaved older adults.

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Ageism The effects of ageism leave some older adults suspicious of familial and professional intervention. Elders may fear that others will take over and force them to accept changes they do not want, such as placing them in a skilled nursing facility or hiring in-home assistance. Many experience ageism when others treat them paternalistically (e.g., talk about them in the third person, pat them on the head, or call them “cutie”). Early in the coronavirus pandemic, older adults did not receive certain treatments because health care providers thought they had a lower likelihood of recovering due to their age. Professionals must recognize and oppose institutional and personal ageism, acknowledge their lifelong potential for growth, commit to alleviating laterlife suffering, and maximize the internal capacities of older adults in decisionmaking and retaining personal control. Ageism can affect communication in a variety of ways. Older people may be more anxious during their assessment because they anticipate a negative outcome. Professionals should communicate respect and reassurance during assessments, be mindful of their vocal tone and avoid condescending or childlike statements. Strategies that convey respect include these factors: 1. Use surnames and titles unless the older adult indicates otherwise. 2. Obtain an older person’s permission to include others (e.g., family members) in interviews or to ask others to provide information to the practitioner. 3. Address and include the older adult in conversations when family members are present during interviews. 4. Solicit the older person’s perspective on his or her situation prior to asking others. 5. Identify outcomes most desirable for the older adult.

Physiological Changes Affecting Communication Common age-related changes may affect sensory, cognitive, and physical functioning, and normal declines in reaction time may make communication difficult. Instead of automatically assuming sensory deficits, professionals should assess for limitations and make appropriate accommodations. For example, if an older adult reports better hearing in one ear, the practitioner should sit on that side of the person. The text box provides guidance for effective communication with older adults.

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 Guidelines for Effective Communication • Guard against invading an older adult’s privacy by ensuring that others cannot overhear the conversation and by only asking questions necessary to establish rapport or address concerns. • Allow sufficient time for interviews to accommodate changes in reaction time. • Be positioned near enough to reach out and touch an older adult if appropriate. • Speak clearly and slowly, but not so slowly as to sound patronizing. • Ensure adequate lighting so older adults can see written materials and nonverbal communication. • Use large print for written materials to accommodate visual changes. • Speak directly to the older person so lip movements can be seen. • Be comfortable with silence. • Remain alert to nonverbal communication. Sources: National Institute on Aging, “Tips for Improving Communication with Older Patients,” retrieved January 7, 2020, https://www.nia.nih.gov/health /effective-communication-caring-older-adults; Kristine Williams, “EvidenceBased Strategies for Communicating with Older Adults in Long-Term Care,” Journal of Clinical Outcomes Management 201 (2013): 507–12 https://ir.uiowa .edu/nursing_pubs/1991; Carolee J. Winstein, Joel Stein,Ross Arena, Barbara Bates, Leora R. Cherney, Steven C. Cramer, Frank Deruyter et al., “Guidelines for Adult Stroke Rehabilitation and Recovery: A Guideline for Healthcare Professionals from the American Heart Association/American Stroke Association.” Stroke 47, no. 6:e98-e169, 2016.

Cohort Experiences Cohort-specific socialization and experiences may create barriers to interactions with health care providers and service utilization, particularly for mental health care. People born between 1900 and 1940 often view professionals as experts with authority, and they may assume a passive stance in interactions. They may not be proactive in asking questions but instead wait for

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information to be provided. They may defer decision-making to individuals who are perceived to be in power positions, which may be a partner, an adult child, a health care provider, or an attorney. Older adults may not understand the roles of various members of multidisciplinary health care teams. They may associate social workers with public welfare, perceive them as less competent than other professionals, or attach a stigma to seeing them in part because of historically negative media portrayals. Some elders may fear that social workers will facilitate institutional placements. And older adults of color may not see the value of talking about their feelings, particularly with strangers, and may hold negative views of mental health professionals. Bereaved older adults, particularly Black and Brown people, typically do not seek professional help.2 But providers may receive referrals from concerned family members, neighbors, or health care providers about an older person who is neglecting personal needs, isolating him- or herself, or having mental health problems, such as hoarding. Inequities due to racism, homophobia, sexism, historical oppression, and earlier negative encounters with health and social service systems also influence older people’s helpseeking practices and service utilization and should be considered in initial contacts with bereaved elders. Older African Americans who recall the Tuskegee syphilis experiments and the use of Henrietta Lacks’ HeLa cells are particularly likely to mistrust health care providers. These structural and systemic factors should be considered not only when working with community-based medical providers but also when working with hospital and home care staff.

Resurgence of Grief Grief from earlier losses may have been buried and may resurface in later life. Research advances in neuroscience and imaging are beginning to identify the overall impact of grief on the brain across time.3 Erikson states that individuals in later life need to integrate their life experience before they die; failure to do so results in a state of despair.4 Similarly, Butler suggested that many older adults undergo a life review process, which can resurface prior losses and also be useful in addressing current grief reactions.5 When they were children, today’s elders may not have had opportunities to grieve effectively because loss was handled differently in the family system, the children lacked information, and gender norms dictated how individuals should respond to emotional pain. As earlier memories of loss resurface in their advanced years,

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older adults may struggle to reconcile these losses with their current situation and find meaning in them before they die. Several interventions reviewed in this chapter address this resurgence of grief, including reminiscence and life review, counseling and psychotherapy, writing and journaling, and group work. In addition, validation therapy may be used with people living with dementia to validate emotions from prior losses and the internal conflicts that emerge as older adults reexperience or dwell on earlier memories and previously unexpressed grief.6 When memories revive earlier traumatic experiences, older adults should be assessed for posttraumatic stress disorder and provided with appropriate interventions for traumatic grief. Historical trauma such as surviving the Holocaust, being a prisoner of war, or early childhood abuse can reemerge later in life. Sensory triggers are common for older adults who have experienced trauma, sometimes across generations. For instance, a sensory trigger could be a shower for Holocaust survivors, loud male voices and someone raising their hand aggressively may be a trigger for a woman who experienced domestic violence, and walking into a hospital may be a trigger for someone who previously witnessed a loved one’s death there.7 If older adults have kept their trauma secret for years, it can feel shocking to relatives when it appears. Families may have little or no understanding of why an older relative responds to a situation in a particular way. Health care professionals need basic training regarding trauma and effective interventions because older adults need tools to journey again through the trauma and express their pain.8 Storytelling can be a beneficial intervention for older adults moving from home into a long-term care facility.9 Older adults who have experienced trauma or other unresolved life events can be helped by sharing and processing their experiences with others who faced similar life events. Not only does this help with loss reconciliation, but it is also a valuable part of life review and personal death preparation. Narrative exposure therapy has also demonstrated positive results for addressing trauma in older adults; it incorporates a life-span perspective when reimagining past traumas.10

Assessment The assessment of bereaved elders, particularly those with cognitive changes, is more comprehensive than at other life stages. This multidimensional assessment may cover physical, functional, social, emotional, spiritual, financial,

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and environmental domains. Because of overlap among social, cultural, and financial determinants of well-being, assessment is also more complex. For example, vitamin deficiencies or changes in medications can leave older adults more susceptible to neurological and chemical imbalances, and grief may trigger changes that reverberate across these domains. Alterations in diet (e.g., resulting from a grief-related loss of appetite), living arrangements (e.g., resulting from a caregiving partner’s death), and alcohol or drug consumption may precipitate delirium, which is often mistaken for dementia. Similarly, a move to another community for medical or financial reasons may create declines in social interactions that can trigger isolation and depression. Unexpressed grief may also be evident in somatic symptoms that are typically not discovered without a careful assessment.11 For grieving older adults, strengths-based assessments should include individual, family, community, and cultural capacities associated with resilience and how they have previously handled loss. Characteristics of the particular loss and the person’s social environment can both contribute to resilience. As discussed in chapter 12, factors associated with the loss include the nature of the relationship, cause of the death/loss, and how it affects daily functioning. Environmental factors are related to informal and formal support systems, cultural and religious practices, and older adults’ ability to function physically and emotionally in their living environment.12 To determine the direction of interventions, a multidimensional assessment of grief includes attention to both strengths and risk factors: emotional and cognitive experiences, such as depression; coping; continuing relationship with the deceased; functioning; social relationships; spirituality or religious affiliation; and identity. Elders may become depressed in reaction to a loss or have a chronic history of depression, and often they experience both depression and grief simultaneously. The difference between grief and depression is difficult to assess because there are overlapping symptoms. For instance, symptoms of grief and depression both include intense sadness, fatigue, changes in sleep and appetite, and a loss of energy and concentration. Grieving individuals typically still maintain social connections, periodically experience enjoyment, and function on a daily basis, whereas people who are depressed may report feeling like they are in a “black hole” and cannot see a way out.13 Elders who are bereaved but have depressive symptoms are less likely to present with morbid feelings and preoccupations of worthlessness, which are characteristic of major depression.14 Treatment strategies for grief and depression often differ, so assessment for depression is critical.

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Widowed elders often experience major depression and may have one or more of the following risk factors: 1. Presence of a major depressive syndrome and intense symptoms of depression soon after a death. 2. Family history of major depression. 3. Increased alcohol consumption soon after a death. 4. Poor physical health around the time of a death. 5. The nature of the partner’s death (e.g., sudden and unexpected).15 The genogram and ecomap are useful tools for assessing older adults’ losses and grief, and they complement other assessments of health and mental health status. The genogram maps out family history regarding quality of relationships, significant family events, roles, communication patterns, and major losses; this map can help individuals understand their own family dynamics. Genograms may be used for a life review if they include a pictorial representation of significant life events, transitions, traumas, and other losses.16 The ecomap, a paper-and-pencil assessment tool that provides a visual representation of an older person’s social relationships and interactions, is widely used in many settings to help professionals understand changes in an older adult’s life. It may also be utilized to help elders view their situation in a broader social context and identify gaps in their social network that are affected by or resulted from recent losses and may be addressed through supportive interventions. For example, widowhood or relocation may be accompanied by changes in the frequency and nature of social interactions. Examining these declines in social capacities may help validate an older person’s multiple loss experiences and lead to discussions about possible interventions to enhance supports (e.g., structured peer support or a support group referral). Genograms: Assessment and Intervention is a useful resource on how professionals can use genograms in practice.17

General Techniques and Interventions Reminiscence and Life Review Reminiscence in later life is generally part of a naturally occurring life review, which is often initiated by an awareness of approaching death and an unconscious desire to resolve past conflicts and integrate prior experiences. Although it may occur at any age, “the intensity and emphasis on putting one’s life in order are most striking in old age.”18 Reminiscence also occurs across cultures, indicating that it is a near-universal experience as people face

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the end of their life. Reminiscence may be prompted by an elder or a practitioner to facilitate therapeutic mourning, and this technique can be used in individual or group settings.19 Professionals use life review therapy in a more structured and purposive way to facilitate the integration of losses and to preserve elders’ dignity. Systematic guided reminiscence helps elders examine aspects of themselves, resolve current or past challenges, and think about their legacy, and this approach is found to decrease depression.20 There are three life review therapy goals: 1. Address the range of life cycle events. 2. Enable elders to review, renew, and evaluate their past experiences. 3. Help elders prepare for death. The “Life Review Interview Guide” provides a structure for documenting the process.21 It examines educational experiences, family history (e.g., deaths, meaningful relationships, changes in family structure), health events (e.g., onset of illness, surgery), social activities, spiritual development, recognition from others (e.g., awards, honors), and significant economic events (e.g., loss of job). It also notes strong, conflicted, and tenuous relationships as well as themes of loss related to these issues. Photographs, personal belongings, memorabilia, audiotapes, and music may be used as props. Professionals may help elders and their family members create an extensive autobiography that includes family albums, scrapbooks, and other memorabilia. Other types of therapy—individual, group, storytelling, art, or music—all entail a supportive process of listening, showing interest, giving reassurance, and expressing feelings associated with memories; these can be aided by cognitive-behavioral techniques such as reframing one’s problems and expectations, reevaluating beliefs and thoughts, and practicing homework.22

Counseling and Psychotherapy Supportive counseling can help older adults acquire and use a greater range of social supports, learn new skills, and normalize and validate their grief process. The principal goals are to provide comfort and support, facilitate mourning and readjustment, and mitigate complicated grief. Although the majority of older adults do not require counseling, those who are socially isolated and at risk of mental health problems may benefit from professional intervention, particularly if there are concerns about trauma.23 Empirical evidence regarding psychotherapy with bereaved adults generally “argues for our selective engagement in grief therapy with those bereaved persons whose grief is traumatic or prolonged.”24 An initial step before professional

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intervention is support from laypeople, such as Stephen’s Ministry. This confidential, one-on-one support has demonstrated positive results.25 Counseling interventions are critical in addressing older adults’ grief. In reviewing interventions for bereaved older adults, Nseir and Larkey caution that determining intervention effectiveness requires data from a sample of older adults seeking support as well as a sample of those not actively seeking help.26 There is little intervention literature specifically geared toward elders from other cultures or for populations of color. Strategies that take account of these differences are often integrated into other mainstream counseling strategies, which may reduce their effectiveness. Different treatment modalities are found to be more beneficial for certain populations than others. For example, problem-focused counseling was more beneficial for widows, whereas emotion-focused counseling was more effective for widowers.27 Cognitive therapies may be most efficacious for those whose thoughts following a loss dwell on negative evaluations of themselves, the world, and the future.28 An online intervention for older adults grieving a spouse or partner had promising outcomes for participants.29 Other literature suggests that behavioral interventions, such as guided mourning therapy, can help adults of all ages overcome severe and complicated grief reactions. Guided mourning assumes that prolonged and consistent exposure to anxiety-provoking stimuli associated with grief (as opposed to avoiding these stimuli) elicits increasingly weaker grief responses. This approach may be particularly helpful for older adults with complicated grief who have avoided reminders of the loss and associated grief.30 Guided mourning is effective, but clinicians need to understand not only the mourning process in individuals seeking treatment but also factors that had previously prevented mourning from occurring.31 Consider the following case example. Mr. Roberts, an eighty-two-year-old African American man, had been happily married for fifty-four years when he found his wife dead one morning. She had COPD that had been accelerating, but her death was still a shock. Three years after her death, Mr. Roberts’s grief was still affecting his sleep and eating, and he had become increasingly isolated from his church community and neighborhood friends. He was overwhelmed with grief, but he did not feel safe sharing his pain with his four adult children, his minister, or those who inquired. Although he was prescribed medication to help him sleep, he was reluctant to take it. However, he did agree to see a therapist at his physician’s suggestion.

Mr. Roberts’s avoidance of grief combined with traditional gender roles about accessing help produced a complicated grief reaction that required

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professional intervention. In the presence of a supportive, nonjudgmental, and skilled practitioner, he might be able to mourn and integrate his losses so that he could move on with his life. Guided mourning with Mr. Roberts would require an assessment of the domains described earlier in this chapter, with special attention to depression. He would be given information about grief (the process, indicators of complicated grief), major depression, and the rationale and process for guided mourning therapy. The therapist would create a supportive trusting relationship with Mr. Roberts. He would then be guided to revisit painful events and memories associated with his wife’s death (such as finding his wife dead), which would enable him to evoke grief responses in a supportive environment.32 He might be encouraged to do homework assignments, reflect on life experiences influencing his grief response, visit his wife’s grave, and start to participate in new activities. Similar to its use in earlier stages of the life span, an integrated, dual-process grief model of avoidance/ restoration can be effective with bereaved older adults such as Mr. Roberts.

Group Work Group work is used extensively with older adults and their family members in a wide variety of community and institutional settings. Group work benefits bereaved older adults by: • • • •

Enhancing their sense of belonging and affiliation. Legitimizing and normalizing their grief emotions. Providing options to express and integrate their experiences. Offering opportunities to learn new coping skills from others with similar losses. • Creating a forum for learning and receiving information relevant to the loss and to living beyond it. • Developing social relationships and supports. • Allowing people to solve their problems with others’ help. Support groups are not considered group therapy. These groups focus less on psychological growth and more on providing individuals with a supportive environment in which to examine their loss, particularly with people grieving similar types of loss such as a partner’s death.33 Support groups are widely available after the death of an older person’s partner, a child, a suicide, or relocation to a long-term care facility: During a support group that I facilitated at a nursing home, the main loss identified by residents was not associated with relocation or their declining health,

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but rather with the loss of a pet when they moved to a facility that did not allow animals; this reflects how elders may be more emotionally attached to their pets as family members than to humans.34

Informal assistance that may develop within structured support groups is vital to well-being in later life and is a powerful predictor of postbereavement psychological adjustment. The mutuality created in support groups can lead to friendships that continue outside the group setting. Support from friends is beneficial, particularly when it provides bereaved individuals with a safe space to share their feelings.35 Support group models vary in accordance with the group’s objectives, settings, participants’ needs, and sponsors. Some groups focus on expression of feelings, whereas others provide content or skills training. Groups have different delivery methods. Some are on a “drop-in basis” and people can simply show up and participate, others are more structured. A self-help model in which leaders, as facilitators, used Worden’s tasks of mourning as the group’s objectives had several benefits: it helped participants recognize the commonality of their experiences and learn skills from one another that they needed to integrate their grief.36 Other models involve a four- to six-week psychoeducational format that blends education on grief with emotional support in a traditional support group format. For instance, Hospice of Lancaster County’s Pathway Center for Grief and Loss runs a six-week psychoeducational group. It is designed for individuals who are advanced in their grief journey and ready not only to share but also to learn about their grieving process. Worden’s tasks of mourning are used weekly to guide individuals through grief, and the leader suggests strategies for integrating loss into their lives. Group members receive homework and participate in activities to share memories of their loved one. Findings are mixed regarding timing for the optimal therapeutic value of support groups. Because most bereaved elders require a private period during the acute phases of their grief, support groups may not be as helpful immediately following a death. One study found that support groups are typically most beneficial when there is time between the loss and the initiation of the group, but a recent exploratory study of participants’ experiences in bereavement support groups found that most benefited within the first three months following a death.37 The timing and extent to which bereaved elders benefit most from a group support requires further research. Moreover, the degree of the positive effects may vary as people choose to opt in and then out of a group depending on where they are in the grief process.38

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Some elders raised to “keep family business within the family” may be uncomfortable in a support group. The idea of sharing feelings and information about family with strangers would violate long-held norms. Although research suggests that social support is critical during grief, the degree of comfort individuals have with receiving support varies a great deal. Some individuals have a desire to share and discuss their experience, and others find this to be difficult if not impossible.39 Men, particularly in this older cohort, may be more reluctant than women to share personal matters, and they may respond to grief differently in themselves and in others.40 Gender biases inherent in the support group model can help explain why research has failed to find a treatment effective for bereaved widowers participating in mutual help groups. For example, a professional who facilitates a grief support group for men states that she never asks men how they feel but instead asks what they do when grief becomes overwhelming.41 Moreover, elders from cultures that place a high value on family privacy are less likely to participate in support groups. Another barrier to participation is transportation, especially if an elder no longer drives or lives in a rural area that has few public options.

Grief and Bereavement in Older Men Grief responses are strongly influenced by a person’s social and cultural background, especially gender-based norms and expectations. Socialization and others’ expectations may hinder or facilitate older men’s personal style of grieving. Men often guard their feelings, remain silent, mourn by themselves, or keep their grief “secret,” and some men even engage in risk-taking behaviors.42 There is wide variation in how men experience and process losses, but grieving men are at greater risk of death than nonbereaved men due to their coping strategies, limited support systems, and overall ineffective management of stress and self-care.43 The tendency to promote emotional expression as the basis for most bereavement interventions suggests a potential gender, cultural, and racial bias toward women and whites and a class bias toward those with higher education and higher income. Identifying and treating psychological distress among older males is challenging, and some men resist using mental health and other services. Useful guidelines for assessment and clinical applications for working with men coping with loss are identified by Campbell, Doka and Martin.44 The text box45 provides practice guidelines for developing and modifying interventions for older men.

 Practice Guidelines for Addressing Grief in Older Men • Reflect on your own expectations of male expressions of grief, and remain open to their distinctive experiences. • Demonstrate understanding, compassion, and acceptance. • Assess loss history and prior and current coping responses. • Individually tailor your approach with consideration of their type of loss, needs, and cultural beliefs, customs, rituals, and values. • Provide education about grief symptoms and processes. Use metaphors and analogies that provide nonthreatening symbolic representations of the grief experience such as likening grief to battle fatigue, amputation, or internal wounds that require hospitalization. • Aid expression of thoughts and feelings using open-ended inquiries with language that is compatible with their perception of the male role; inquire about “thoughts,” “reactions,” or “responses” as opposed to “feelings,” unless the man uses “feeling” words. • Understand and work with the grieving process: recognize the protective functions of shock and numbness, help explore strategies for venting anger, help men adjust to the changed environment by teaching new skills following a partner’s death, and help them find new meaningful activities. • Facilitate action: take an active, problem-solving approach in individual and group sessions; recommend self-help or other pertinent literature; look through photo albums; keep a journal; put together a memory book; build a coffin or construct an urn; adopt advocacy roles; provide testimonies. • Bolster social support, contact, and activity: suggest one-to-one support from other widowers, and educate family members about the importance of social support. • Attend to practical needs including concerns about finances, funeral arrangements, unfinished business, or legal planning. • Encourage continuity to prevent any other major changes that may introduce new losses (e.g., relocation). • Inquire about substances used to mask grief, and discuss the potentially damaging effects of alcohol and drugs. • Encourage physical activity such as aerobic exercise as an outlet for anger and aggression and for treatment of depression, and suggest organized sports to enhance companionship and support. Source: Betty J. Kramer, “Grief and Bereavement in Older Men,” Journal of Geriatric Care Management 10 (2000): 17–23.

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Spiritually Attentive Interventions Older people facing their own or another’s death generally try to understand the meaning of life and wonder what will happen after death. They may seek answers to these questions in their religious beliefs or spirituality, which can provide “a source of great comfort and encouragement when elders are faced with overwhelming challenges” and “offer a cognitive framework for elders to accept painful events as part of the rhythm of life.”46 The importance of spirituality and religion varies widely among racial, ethnic, and cultural groups. The African American community has a long history of strong religious traditions, with the church often central to both religious and secular social supports.47 Spirituality or religious beliefs should be considered when assessing and treating elders to whom spirituality or religion is important regardless of their culture.48 Spiritual beliefs underlie some bereaved elders’ search for meaning and determine how they view their relationship with the deceased, explain death, and experience hope for the future.49 The documented relationships between spirituality and well-being suggest that professionals ask older adults about their beliefs and consider the use of spiritual supports when counseling them after obtaining permission to do so. Assessment is critical to understanding the role religion or spirituality plays in elders’ lives.50 One form of assessment is a spiritual genogram, which is an adaptation of the family genogram; it can be used to map the evolution of a person’s familial, cultural, religious, or spiritual identification, which may affect current belief systems and experiences. The spiritual time line, which is a linear depiction of a person’s spiritual development, may help elders ponder spiritual and religious beliefs that inform their current experience with loss or thoughts about facing their own mortality. Puchalski’s FICA assessment tool is useful when determining an elder’s spiritual history and is recommended by the Hartford Institute for Geriatric Nursing.51 The questions used to guide the interview using the FICA acronym are as follows: F: Faith or beliefs: Do you consider yourself a religious or spiritual person? What is your faith? Which of your activities give meaning to your life? I: Importance and influence: How does your faith influence how you take care of yourself? How do your beliefs influence your current experience? Are your faith and beliefs important to your life?

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C: Community: Do you belong to a religious or spiritual community? Does it support you? How? Is there a person or group of people who are really important to you? A: Address: How would you like other care providers and me to address these issues in working with you? These tools may lead to discussions that help older people identify unfinished business and explore their thoughts, expectations, and beliefs about grief, death, dying, and afterlife. This information helps professionals understand older adults’ needs and identify potential interventions. Service professionals may want to work closely with religious and spiritual leaders who may refer bereaved elders, particularly those with complicated grief, and provide additional support and resources. The Consensus Conference on Palliative Care identified a variety of spiritual health interventions as appropriate to grief, including those related to spiritual communication, spiritual therapy, and self-care.52

Interventions for Specific Losses Spousal/Partner Bereavement Individuals adapt differently to a spouse’s/partner’s death, and three profiles of adaptation have been identified: vulnerables, copers, and resilients. Using these profiles, it was determined that women struggled more to be resilient after a spouse dies.53 Interventions to promote resilience for widows and widowers need to be targeted to take account of these variations. Interventions with widows and widowers include brief dynamic psychotherapy or counseling; mutual-aid support groups; crisis intervention at the individual, family, or group level; and peer-counseling programs, as well as support through internet-based self-help programs and networks.54 As noted earlier, most interventions for bereaved partners include reminiscence, which is consistent with Worden’s tasks of mourning to accept the reality of the loss but also to face the associated emotional pain. In addition, interventions can address loneliness experienced by widowed elders. Loneliness is an inherent part of grief and one of the most difficult aspects of integrating the deaths of loved ones.55 Support group interventions build a community for older adults to explore their grief while also combating loneliness. For example, internet support groups such as Grief in Common connect individuals who understand the pain of loss, provide live chat services with professionals, and link users to resources for elders who are comfortable with online support.56

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Suicide The suicide rate among men age eighty-five and older is higher than for any other age group, making suicidal ideation in older adults a public health concern.57 Elders who attempt suicide are usually experiencing hopelessness, despair, and suffering from multiple losses. As with suicide at earlier life

 Suicide Assessment Risk Factors 1. Demographic Factors a. Gender. Widowed men are more than three times as likely to attempt suicide as women. b. Race and age. Suicide rates are highest among white men over age eighty-five. 2. Physical or mental health complications: elders with physical illness, pain, functional changes, depression, anxiety, or dementia are at greater risk. 3. Social Factors a. Isolation (e.g., limited contacts, living alone). b. Alienation (e.g., few or no friends). 4. Dynamic Factors a. Loss, bereavement, and complicated grief. b. Substance abuse, including prescription drugs. c. History of suicidal behavior in elder and in family members. 5. Clinical Factors and Communication a. Giving away prized possessions. b. Verbal and nonverbal expressions of hopelessness, despair, and suicidal intent. c. Hints of a plan (e.g., storing up medications or buying a gun, verbal statements that others will not have to worry about them for long). 6. Family Factors a. Family conflict. b. Severe disturbances in response to separation and loss. c. Role and behavior disturbances.

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stages, their suicide makes survivors’ bereavement even more difficult. The preceding text box lists key risk factors for suicide in older adults that should be assessed in efforts to prevent suicide among elders.58

collaboration with primary care physicians The majority of older adults who commit suicide routinely interact with a primary care physician. This suggests the need for physicians and their teams to be educated about suicidal ideation in older adults. In addition, greater attention is required to developing treatment plans and follow-up procedures.59 Social service professionals should collaborate with physicians and other health care providers to ensure adequate assessment, referral, prevention, and treatment of depression. Another need is to restrict the availability to lethal means. Professionals should ask about an older person’s access to weapons and try to negotiate ways to limit their access. The quantities and potential toxicities of prescribed medications, other drugs, and alcohol that may be used in an overdose should also be determined.

identification, assessment, and treatment of depression The assessment and treatment of depression is critical, given its high incidence in elders who attempt suicide.60 Chapter 7 lists the criteria for a major depressive episode, but a growing body of research points to differences in older adults’ presentation of symptoms of depression. These include more prominent somatic symptoms, fewer ideational symptoms (e.g., guilt), and a lower prevalence of dysphoria.61 The most promising approach in working with suicidal older individuals with depressive disorders is to treat it aggressively.62 In contrast to uncomplicated grief, major depression is a serious disorder that warrants clinical attention. When untreated, individuals may experience unnecessarily prolonged suffering, dysfunction, and despair.63 Unfortunately, many depressions are never detected and treated. In a study of older adults who sought treatment in emergency departments, less than half of those with a positive suicide screen who were discharged home received a mental health evaluation during their visit.64 A review and critique of interventions for treating major depression associated with bereavement identified the best validated approaches as mutual support, group work, psychotherapy, and cognitive-behavioral approaches.65 They found evidence that pharmacological interventions combined with other interventions are beneficial in some instances of grief, and they challenged the field to further develop a strong evidence base regarding interventions,

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including those that take account of cultural norms and stigma related to suicidal ideation.

supportive services Support services for older adults who are experiencing suicidal ideation are shown to have positive outcomes. For example, the users of a telephone help line and emergency response service had lower rates of suicide deaths than nonusers did.66 In a review of suicide prevention programs for older adults, interventions included case management, individual therapy, group work, psychotropic interventions, telephone support through individual therapy or hotlines, and engagement with primary care. Most addressed risk factors associated with suicide and had positive results.67 However, less attention was given to individual or social capacities as protective factors for older adults.

Dementia Elders living with dementia have multiple losses that affect all domains of their life. There is a growing body of research on the impacts of dementia on family caregivers and some research on grief of the person in the early stages of dementia. However, less attention has been given to the grief of individuals living with dementia over the course of the disease and how they communicate feelings of loss throughout. Support groups for people newly diagnosed with Alzheimer’s are one way of addressing their grief, and these groups are widely available through the Alzheimer’s Association and hospital-based memory care centers.68 But further attention should be given to address grief when other losses occur that are difficult for the person living with dementia to fully understand. During the coronavirus pandemic, people living with dementia struggling to understand the changes in their lives, particularly the lack of routines and increased social isolation, have declined in functionality and suffered depression.69 Individual and group validation therapy may help them resolve earlier conflicts before their death. Validation principles indicate that adults late in life “return to the past to heal themselves” and that the bottled-up and painful feelings that surface during this process are relieved when validated by compassionate others. Feil provides a full description of validation techniques for four phases of grief resolution and for group validation that may be salient to older adults living with dementia.70

Family Caregiving The losses of family members caring for elders with chronic impairments and the fluctuations in their grief over time are discussed in chapters 10 and

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12. The Caregiver Grief Inventory is an assessment tool that categorizes caregiver grief in three domains: heartfelt sadness and longing, personal sacrifice and burden, and worry and felt isolation.71 It also provides a total score for caregiver grief. One of the first and only assessment tools of caregiver grief, professionals can use the inventory to determine caregivers at risk for high levels or more complex grief reactions and develop targeted interventions for them.72 Other research has noted that caregivers’ anticipatory grief affects their problem-solving and decision-making abilities.73 Caregivers who experience greater anticipatory grief are more effective at problem-solving and decisionmaking than those without anticipatory or preloss grief. This can have significant implications for medical decision-making as well as creating a safe living environment and suggests the need for early stage grief interventions for caregivers. Practical recommendations for work with grieving caregivers include providing information (e.g., about the disease, community resources, and grief process), supporting expression of feelings, encouraging communication with other family members and the person living with dementia, and conveying the value of seeking support.74 These strategies help caregivers navigate the ambiguity inherent in such losses. Questions such as “am I still his wife” or “my mom no longer acts like my mom” are at the heart of the ambiguous loss that is experienced by caregivers.75 Caregiver interventions are typically oriented toward reducing stress, burden, and depression and increasing self-efficacy, often through support groups. Some groups are disease-specific such as ALS or dementia, but others address a wider range of illnesses and disabilities. Many are peer led, offer online or in-person support, and divide individuals by age.76 Some groups are educationally oriented and may have a speaker present relevant resources or services, or groups may combine emotional support and education, including a skills building component to enhance caregiver effectiveness.77 During the coronavirus pandemic, virtual support groups for caregivers unable to visit their relatives living with dementia have focused on empowering caregivers with strategies to be with their loved ones. Other interventions that have shown promise involve some form of writing or journaling. Poetry is found to be effective for caregivers of individuals with dementia in enhancing coping with loss and highlighting the positives or silver linings of this role.78 As mentioned earlier in this chapter, support groups also provide a forum for individuals to share their experiences, find commonality, and reduce isolation. The extent to which support groups directly address grief is unclear, however.

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One study found that accessing support for family caregivers across populations of color does not differ, but types of support caregivers were willing to access does vary by race.79 Ensuring culturally appropriate support groups for caregivers is essential because differences in responses to grief vary culturally and may be affected by racism and other inequities.

Life Transitions: Retirement Greater attention is being given today to the impact of retirement on older adults and how to address retirement-related grief. Many adults regard retirement as an exciting and eagerly anticipated transition, but for others retirement may precipitate losses. Involuntary retirements are particularly difficult because older adults have no control over a decision that directly affects their income and lifestyle. If forced to retire from a job they enjoy or need for income, older adults lose social connections, and if their sense of self is closely tied to their employment, they may experience a loss of identity as well. Retirement planning interventions cannot be “one size fits all” but instead need to be adapted to the varied needs of different populations.80 Retirement planning is one way to consider in advance how to minimize issues of loss that may emerge. Planning workshops and books often recommend developing interest areas such as volunteering while still employed and participating in leisure activities and continuing education during retirement.81 Both solitary and group-based activities can keep older adults socially engaged with friends and promote overall generativity, which can help combat grief from this life change.82 Although these activities do not directly address loss, they can enhance social and cultural capacities that may protect older adults from grief due to retirement-associated changes. In addition, retirement counseling can help with adapting successfully.83 Overall, the literature tends to emphasize planning and counseling to smooth this transition, but it does not describe or evaluate specific interventions for postretirement losses.84

Relocation The prospect of moving can create grief as older adults consider never returning to what had been their “home.” Most resist moving to a skilled nursing facility, and it is not surprising to find that depression in these facilities is widespread and inadequately treated.85 Institutionalization also creates grief for family members, perhaps because they recognize that death is approaching for their beloved relative. Feelings of separation and yearning for the older adult they once knew were prominent in caregivers of relatives in nursing

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homes.86 To address losses inherent with relocation, greater attention should be given to helping the entire family system adapt. Strategies include staff learning about the new residents, being aware of factors that precipitated the move, individualizing the admission process, allowing for incremental moves, encouraging personalization of space (e.g., furniture, pictures), and respecting privacy. As noted earlier, storytelling can be an effective intervention for older adults grieving a move into long-term care.87 Although support groups offered through skilled nursing and assistedliving facilities may provide education on grief, grief and death are often considered just “part of the job” in long-term care. Nevertheless, long-term care facilities could provide more resources about grief; change policies and procedures to ensure issues of loss and grief are recognized and appropriately communicated to residents, staff, and families; have rituals following a resident’s death; and encourage community support programs.88 Counseling groups and reminiscence therapy interventions should be evaluated to determine whether they minimize the grief and distress associated with residential relocation as well as their congruence with different races and ethnicities.

Grief and Approaching Death Anticipatory mourning and grief are fundamental to the end of life.89 Personal capacities (e.g., gender, mental health, fears of death), social capacities (e.g., quality of interpersonal communication and relationships, financial resources, access to medical care), cultural capacities, and specific illness characteristics all influence how an older person responds to approaching death. The social distancing and isolation required during the coronavirus pandemic, uncertainty and self-blame related to the infection, and the inability to implement traditional burials and funerals have negatively affected the personal, social, and cultural capacities of older adults as well as those of their families, impeding professionals’ use of anticipatory grief work.90 The primary needs of older adults are preserving a sense of self (e.g., affirming one’s identity and value), participating in decisions, being reassured that one’s life has value (e.g., demonstrating respect, maximizing quality of life), and receiving appropriate and adequate care. Many deaths in later life result from acute, unpredictable, and sudden crises associated with advanced chronic diseases that give older adults little time to say good-bye to their families. Deaths that occur in ways incongruent with individual or family desires and idealized views of death (e.g., use of complex technological interventions and life-sustaining treatment, dying alone) are considered bad deaths and can lead to more intense grief reactions, prolonged grief disorder and complicated

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grief, which have characterized many deaths due to COVID.91 After the federal government relaxed regulations to allow increased use of telehealth, internetbased cognitive behavioral therapies delivered by providers were found to be effective in addressing these types of grief during the pandemic. Elders with chronic illnesses who enroll in hospice or other palliative care programs receive interdisciplinary care that attends to their psychological, emotional, spiritual, and physical needs; minimizes suffering; and addresses bereavement. Hospice’s bereavement services, such as grief education, support groups, and individual counseling, are offered to family members as well. In addition to these more traditional forms of intervention, social media contacts as well as music therapy may help older hospice patients and families cope with grief, pain and anxiety, disorientation, lack of meaning, and hopelessness. The most common interventions that social workers and other human service professionals use to support elders and their family members at the end of life are referrals for resources and planning for care needs; family conferencing, and other team interventions to prepare families for care responsibilities; and family counseling and therapy to provide support when adapting to their changing roles.92 Discussions of advance care plans can sometimes open up family communications regarding other aspects of care during the dying process. Since social workers are prominently involved in these discussions, their ability to use this intervention for additional family assessment is critical.93 During the coronavirus pandemic, telehealth became a primary means of extending end-of-life and caregiver support services to elders and their families. More research on the efficacy of remotely delivered versus inperson mental health interventions is needed.94Communication often centers on important decisions regarding the elder’s care, which may be influenced by the family members’ anticipatory mourning. For example, those involved in care may already have grieved and may be more prepared for death than those geographically far away who arrive only when the older adult is close to death. Long-term or current family conflicts make communication more difficult.95 Families facing difficult decisions regarding the withdrawal of life supports, especially after a prolonged period, may feel guilty and need support. They should be encouraged to talk about an elder’s preferences and types of decisions to be made and understand the pros and cons of different choices and likely outcomes of these decisions. Social workers can help resolve conflicts and provide emotional support and comfort. Surveys after the withdrawal of life support found family satisfaction linked to communication with families who are transitioning from periods of hope to considering end-of-life care after a long period of caregiving.96

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Anticipatory and current losses should be discussed with both the elder and his or her family members. Clinical approaches to the anticipatory mourning of family members of people near the end of life are detailed extensively by Rando.97 Social workers can provide appropriate information, help families achieve homeostatic balance following changes in roles and normalize grief responses, engage the family in life review, help families plan for the future, and facilitate communication among family members. If anticipatory grief is not assessed, this grief may influence medical decision-making regarding death or other major life events.98Guided imagery is another method for addressing anticipatory grief. Although its effectiveness with the bereaved has not been evaluated, it may help dying elders and their families work through their grief; stimulate communication; envision future events that might trigger pleasant memories; reduce stress, pain, and depression; and increase the elder’s and the family’s sense of control. Guided imagery should be used carefully and with training in assessment and implementation methods.99

Summary This chapter presents developmentally congruent interventions used with bereaved elders, such as reminiscence, life review, group work, counseling, support groups, and spiritually attentive interventions. Few of these interventions have been systematically evaluated in treatment outcome studies. Guided mourning counseling approaches and mutual support programs (e.g., Widow-to-Widow programs) have the most extensive empirical support for older adults with high distress and complicated grief. Interventions for bereaved spouses or partners have received the most empirical attention. We present practice principles and recommend strategies for people with grief associated with dementia, family caregiving, major life transitions (e.g., retirement, relocation), long-term care, and grief resurgence, but research is needed to build a base of evidence-informed interventions that take account of cultural and racial differences as well as the effects of racism on the bereaved. Interventions for other forms of grief and loss reported in later life are strikingly absent. How should we help elders with grief associated with divorce and family discord or conflict? What innovative strategies are effective for older grandparent caregivers who are simultaneously coping with their own health and care of their grandchildren? What interventions would be most effective for older immigrants grieving their lost home and country? And what interventions can address multiple losses faced by socially isolated elders, such as those confined to long-term care facilities, facing death in an

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ICU or living with dementia who lost daily routines during the coronavirus pandemic? Elders with strong attachments to their companion animals may be forced to have their pet euthanized, and they may grieve more deeply for this loss than for the deaths of friends or relatives.100 A pet bereavement questionnaire is available to help determine the impact of a pet’s death on an individual’s well-being.101 Yet there is little guidance in the literature regarding optimal strategies to address elders’ pet bereavement, which is often disenfranchised. As with all interventions, taking account of cultural differences and lifetime inequities is essential. Given the heterogeneity of the aging population, professionals must consider how race, ethnicity, sexual orientation, and gender identity influence the expression of grief and provide congruent assessment and interventions for these populations. Although gains have been made in access to end-of-life services such as hospice care, more work is needed to develop, provide, and evaluate culturally specific loss and grief services for older adults of color.

14 Professional Self-Awareness and Self-Care

 Grief provokes deep meaning for all of us about our own loss history. Professionals are moved by the pain of those they serve and may experience a reemergence of their past losses or fear future losses.1 Professionals are often caught between their own response to future losses and the organizational policies and legal procedures that surround deaths, such as protocols after death or responses to suicide.2 In this chapter, we describe some of the joys and challenges of working with the bereaved and suggest organizational and professional self-care strategies. We also point to the importance of professional and personal development to address one’s racism and implicit biases so we can work effectively with grieving individuals in communities of color.

Gifts and Challenges of Working with the Bereaved Professionals who work with the bereaved report feeling privileged and finding satisfaction in their work.3 Consistent with the concept of posttraumatic growth, they learn about the inescapable reality of loss and grapple with questions of meaning as they accompany the bereaved through this process.4 Here is how one counselor summarized this growth: We have the satisfaction of doing meaningful work; we see clients reclaim themselves and their lives; we gain wisdom; and we have endless opportunities to learn about the deeper recesses of the human heart, our own included. Many of us become especially sensitive to the fleeting nature and preciousness of life, and of how things are always in transition. The insight that change is the norm, that nothing ever stays the same, can enhance our ability to savor the sweet moments in our own lives (“This is wonderful, and it is temporary”) as well as to withstand the periods of loss and inner desolation that we inevitably encounter (“This is 344

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horrible, and it is also temporary”). This heightened awareness and enlarged perspective accompany one’s ongoing development as a psychotherapist.5

The potential gifts inherent in working with those enduring profound or traumatic losses are nonetheless accompanied by challenges, including the high risk of burnout and compassion fatigue. Furthermore, the multiple losses practitioners encounter, particularly if traumatic or sudden, may profoundly influence their beliefs, assumptions, and ability to practice effectively.6 Professionals in health and long-term care settings where grief is normative often experience loss as ongoing and pervasive. While meeting the emotionally intense needs of the dying and their families, professionals often develop personally meaningful relationships, which result in incontrovertible losses following the person’s death.7 This pattern occurs in other settings as well when intense professional relationships exacerbate past and feared future losses for professionals. These feelings are even more common when work environments fail to recognize, normalize, accept, or acknowledge professionals’ loss and grief. When confronted with many losses in a short period of time, practitioners may not have opportunities to adequately process their own grief. If this is combined with an organization’s and a practitioner’s lack of awareness of grief, it may be impossible to continue in this line of work. Professionals need to know when to seek education, supervision, therapy, or other self-care strategies to address their grief.8 Maintaining professional boundaries and navigating their own grief and reactions to others’ pain while providing clinical support is challenging. Because grief work entails shared meaning, professionals may unintentionally entwine their own stories and confuse their boundaries with the grief journey of the individuals and families they serve.9 The following text box describes frequent challenges for professionals and areas where professional boundaries may be blurred. For example, practitioners working with families of someone who has committed suicide may experience traumatic and complicated grief. This may emerge as self-doubt, anxiety, uncertainty, and avoidance of other individuals perceived as being at risk of suicide.10 Professionals need to be aware of the potential for over identifying with the client system and engaging in “over and beyond” behavior. Providers should seek education on boundaries for the entire team and use supervision when situations arise that create challenges in maintaining boundaries.11 Boundary education is essential not only to protect providers but also to protect the individuals receiving their services. Other related challenges associated with bereavement care are compassion fatigue, vicarious traumatization, and burnout.12

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 Challenges for Professionals Working with the Bereaved • Experiencing overload from exposure to multiple losses when working continually with those who have experienced traumatic events or with those who die. • Helping someone integrate a loss that resembles a personal or dreaded experience of our own. • Addressing difficult processes of transference and countertransference such as when a client reacts unexpectedly toward us or we react unexpectedly to the client because of unacknowledged emotions. • Helping someone with a grief that is so far outside our own experience that it seems incomprehensible to us or is emotionally difficult to bear. • Addressing ethical dilemmas that surface in care of the bereaved. • Addressing family conflicts related to differential grief responses. • Experiencing feelings of inadequacy when we cannot help alleviate suffering.

Compassion fatigue describes the convergence of secondary traumatic stress with cumulative stress, which occurs most frequently among professionals working with trauma survivors. This is a state of physical and mental exhaustion that can be recognized by a depleted ability to cope with one’s everyday environment; it is different from countertransference and burnout.13 Compassion fatigue has garnered growing attention with episodes of increased police brutality, school shootings, opioid overdoses, and other violent crimes.14 Some symptoms of compassion fatigue are similar to those of primary traumatic stress disorder, but the traumatizing event is not experienced directly by those emotionally affected by the trauma.15 Symptoms of compassion fatigue may be recognized in various domains: 1. Cognitive: lack of concentration, apathy, disorientation, preoccupation with trauma. 2. Emotional: powerlessness, anxiety, guilt, anger, numbness, fear, sadness.

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3. Behavioral: impatience, irritability, withdrawal, sleep disturbance, nightmares, hypervigilance. 4. Spiritual: questioning the meaning of life, loss of purpose, pervasive hopelessness, loss of faith. 5. Personal relations: mistrust, decreased intimacy, overprotection, intolerance, increased interpersonal conflicts. 6. Somatic: shock, sweating, rapid heartbeat, breathing difficulties, dizziness, greater number and intensity of medical maladies. 7. Work performance: low morale, low motivation, avoidance of tasks, staff conflicts, irritability, obsession about details.16 Programs to promote empowerment in professionals’ work and personal lives can help minimize the deleterious effects of compassion fatigue. In a systematic review of interventions to address compassion fatigue, those focused on teaching or bolstering resilience were most effective. The accelerated recovery program is an evidence-informed approach that promotes resilience and self-efficacy; it is designed to reduce the intensity, frequency, and duration of symptoms in professionals who encounter trauma in their work. In addition to fostering self-compassion and sharing of stories, resiliency skills include self-care, connection and support, intentionality rather than reactivity to stress, self-regulation, and a cognitive skill of perceptual maturation. Participants in the accelerated recovery program experience reduced symptoms, increased energy, and a stronger sense of self-worth.17 Others suggest that effective grief counselors develop a style of compassionate detachment, balancing their emotional engagement with cognitive detachment from the trauma associated with the death. Death competence, a specialized skill in working with the bereaved, is recommended as a way to avoid empathic failure and enhance effective and ethical practice.18 Vicarious traumatization is the negative transformation in a helper’s inner experience that occurs as a result of deep empathic engagement with traumatized people coupled with a sense of professional responsibility to help.19 Vicarious trauma presents with a host of symptoms, including intrusive imagery, arousal, avoidant behavior, and cognitive changes.20 Many losses commonly confronted by social workers and other professionals (e.g., child abuse, homicide, assault, suicide, gun violence) put them at risk for vicarious trauma. The text box lists professional self-care considerations related to awareness, balance, and connection to others to protect against vicarious trauma.

 Self-Care Approaches That Guard Against Vicarious Trauma Awareness Recognize signs of vicarious traumatization. Cultivate mindfulness in daily activities, thoughts, and feelings rather than distracting yourself or tuning out. Discuss changes noticed by others. Avoid substances that numb or alter awareness. Make efforts to slow the pace of your activities. Consider meditation or other forms of contemplation.

Balance Modify work experiences to reduce exposure to trauma in your caseload. Develop a greater variety in clinical roles. Be more aware of restoration and growth themes in clients’ experiences. Set limits on availability and create realistic boundaries for therapeutic work (e.g., be alert to rescue tendencies). Set realistic expectations and develop priorities for balancing your personal and professional lives.

Connection Identify and cultivate a relationship with a confidant to address your work experiences. Consider holding weekly workplace meetings to discuss experiences of vicarious trauma and countertransference. Consider joining a peer support group outside work. Implement agency policies to support peer consultation. Source: Based on Sarah J. Gamble, “Self-Care for Bereavement Counselors,” in Helping Bereaved Children: A Handbook for Practitioners, 2nd ed., ed. Nancy Boyd Webb (New York: Guilford Press, 2002), 355–57.

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Burnout occurs when individuals cannot accomplish their goals in high-stress environments, resulting in frustration, depersonalization of clients, feelings of loss of control, and diminished morale.21 Burnout is a strong predictor of ineffectiveness and turnover for professionals working with grieving individuals, families, and communities.22 Influenced by personal, organizational, and client factors, burnout can vary greatly within and across a range of professionals in high loss and stress situations. Strategies to reduce the risk of burnout are knowing one’s limits, practicing active grieving, and reaching out for support.23 Self-awareness strategies are congruent with these recommendations.

Self-Awareness Self-awareness and self-reflection, central components of ethical practice, influence the likelihood of participation in self-care activities that enhance well-being. Self-awareness encompasses mindfulness of one’s thoughts, emotions, and behaviors.24 It manifests as frequent reflection on how your work affects your ability to engage professionally, objectively, and empathically with others’ grief. Early in my (SS) career, a mentor told me that at the end of each day three questions should be answered: What went well today, what did not go well, and what must be fixed tomorrow? From her lens, this was at the heart of self-aware practice in a setting in which grief was the norm. Most professional codes of ethics require practitioners to recognize personal conflicts, problems, and emotional needs and how they may influence their work. Self-awareness is essential to ensure that personal issues are not interfering in professional engagement.25 The social work profession has long acknowledged the need for disciplined awareness in the “conscious use of self” and personal qualities as potential resources in helping relationships.26 Mindfulness practices can promote self-awareness through one’s experience in the present moment.27 Central to professional self-awareness is the need to assess and address our own racism, privilege, biases, and assumptions about the loss and grief experiences of people of color. Most professional codes of ethics now recognize the centrality of equity-driven practice.

Personal Loss, Beliefs, and Experience with Grief Professionals bring their own history of loss and personal way of grieving to their work, and this history can either enhance the therapeutic process or impede it. Personal experiences with loss also may influence where professionals direct their attention and how they intervene. For example, professionals

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bereaved by homicide focus more on their clients’ emotional pain and offer more time to them than do those who have not had this experience.28 The bereaved’s grief often stimulates strong feelings about the practitioner’s previous or feared losses (e.g., anxiety regarding one’s own death or that of family members). Examining their own history with loss gives professionals a better understanding of the grief process, things to say or not to say and resources available to the bereaved, remaining conflicts or difficulties from earlier losses, and an appraisal of the kinds of situations that professionals can address adequately. Professionals should determine how they first experienced and handled loss and grief in their personal lives, what messages they were taught about grief as a child, and whether they were included in grief rituals.29 Other questions professionals might ask themselves include the following: • To what extent was my grief acknowledged, accepted, and expressed in my family of origin? • Were certain responses not allowed, discouraged, or even punished? • To what extent did my family acknowledge and allow themselves to grieve? • How willing were they to use self-care strategies for their grief? Answering these questions will enable practitioners to help others address their feelings without becoming entangled in this process. Self-awareness is an ongoing process of monitoring personal reactions to the bereaved’s grief responses. Practitioners should answer these questions about their own grief process: • How comfortable am I in the presence of intense emotion, such as anger or profound despair? • Which losses are most difficult for me to hear about? • How do I feel when others describe the circumstances of their loss, especially if it contains elements of trauma or violence? • In what ways do my clients’ losses remind me of my own, and what do I do with these feelings? • To what extent am I grieving my own losses, and how am I processing my own grief? • How much have I thought about my own mortality and that of those I care about?

Self-Care Strategies Personal and professional self-care are interconnected, but our focus here is on professional self-care or purposeful engagement in practices that promote

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effective and appropriate use of self in a professional role within the context of sustaining holistic health and well-being.30 Practicing self-care strategies that reduce stress and burnout and promote wellness are essential, and support from colleagues and supervisors is central to professional well-being.31 Because self-care is an individualized process tailored to our needs, beliefs, lifestyle, and spirituality, what works for one of us may not work for others. In a systematic review of evidence-informed interventions to improve self-care of social work students, mindfulness practice was the only empirically evaluated self-care strategy, and it showed mixed results.32 Practitioners are encouraged to use self-care strategies on their own and to consult with coworkers, supervisors, or personal therapists to review the adequacy of their self-care plan. We next describe personal and organizational self-care strategies, but further research is needed regarding their effectiveness.

Physical Self-Care Aerobic and weight-bearing exercise, a healthy diet, adequate sleep, taking time off, and wellness checkups are effective in promoting well-being. There is strong evidence that physical activity decreases depression, anxiety, stress, tension, and fatigue.33 Professionals balancing multiple care roles may greatly benefit from the therapeutic effects of massage or other healing modalities. Other self-care techniques that affect the physical body and may also benefit psychological and emotional well-being are stress reduction strategies such as mindfulness, diaphragmatic or deep breathing, progressive muscle relaxation, autogenic relaxation (e.g., repeating scripted phrases to reflect the sensations of a relaxed body), and yoga.

Psychological and Emotional Self-Care Central to self-care is nourishing the body-mind-spirit. The link among perceptions, cognition, and well-being is well established and is the basis for efficacious cognitive therapies. Practitioners should take time to gain perspective on the bigger picture of their lives as well as reflect on their thoughts, beliefs, and experiences to protect their psychological well-being. Keeping a journal; meeting with a personal therapist; reflection and practicing meditation, mindfulness, and breathing exercises; minimizing stressors, expanding our interests, and having realistic expectations of ourselves; and approaching life openly and with curiosity are psychological self-care strategies.34 Closely related are emotional self-care strategies. These include cultivating a sense of self-compassion, expressing one’s emotional responses to

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grief associated with this work, forming relationships with those who provide nourishment and support, engaging in activities to replenish one’s sense of humor, and affirming one’s contributions. Activities and experiences such as meaningful time with close friends, being out in nature, playing with children, or rereading favorite books that elicit pleasurable emotions such as love, gratitude, happiness, laughter, and joy enrich us and bring balance to life.35 A number of online and mobile apps (e.g., Headspace) promote psychological and emotional well-being, and guided meditation audios, cognitive-behavioral therapy (MoodGYM, Stress Gym), and breathing exercises (Breath2Relax) can be accessed online as well.36

Spiritual Self-Care When confronting grief in our professional and personal lives, we can find meaning in the conditions that give rise to suffering. But internalizing clients’ suffering from trauma can interfere with the ability of professionals to find such purpose. Spiritual self-care practices can enhance professionals’ ability to engage with the meaning and satisfaction of their work as well as their quality of life and positive mental health.37 The relationship between selfawareness and self-care is stronger for psychological and spiritual aspects of self-care than for physical components.38 Seeing our work from a spiritual perspective does not mean trying to convert our clients to any belief system. Rather, it is about tuning in to what is universal about a client’s experience, continually developing our compassion and self-compassion, working with issues of forgiveness as they arise, staying open to influences that are not “scientific” and rational, and being grateful for signs of hope and healing, even when they are small. To honor the spiritual depth of our work, we can arrange our offices to be sacred spaces that contain artifacts and pictures of nature, reminders of people who have given us wise counsel, objects that connect us to thoughts of healing, and books that inspire us. Other spiritual self-care strategies include spending time in nature, learning to meditate, creating a peaceful home environment (e.g., using nature, music, or sounds, such as a bubbling rock fountain), formally associating with a religious or spiritual group, reading literature that teaches spiritual practices or inspiring biographies of spiritual leaders, allotting time to engage in our chosen spiritual practices, joining a choir, sharing our experiences with others, and keeping a spiritual journal or diary.39

Workplace or Professional Self-Care Consistent with the organizational support component of self-care, consultation and supervision from colleagues and supervisors and the availability

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of supportive workplace policies affect workers’ stress and satisfaction.40 Strategies that administrators may use to promote self-care are providing places for private meetings, empathic supervision, time to attend funerals and memorials to facilitate grieving, staff retreats, flexibility in schedules, and time management skills. Encouraging staff to care for themselves sends a powerful message that in itself may ease stress. Social workers can benefit by using supervision time wisely (e.g., sharing the burden of cases in supervisory sessions), seeking backup and relief from colleagues for emotionally difficult cases, taking breaks when needed, and balancing their exposure to grief in regard to caseload and other work responsibilities. Some agency policies, procedures, and practices promote self-care, including personal days, ample vacation time, and celebrations away from the workplace. Educational and training strategies related to self-care are needed within both professional degree programs and the workplace.41 Efforts to create supportive workplaces must take account of discriminatory policies, practices, and procedures that can lead to unequal health and mental health outcomes for people of color who are grieving individual and collective multiple losses created by systemic inequities. Social work, along with many other professions, has an ethical mandate to eradicate racism and all forms of injustice.42 This ethical mandate is central to working with bereaved individuals, families, and communities of color who may mistrust professionals and resist services because of previous experiences of racism within social and health care systems.43

Summary Professionals frequently confront grief and suffering in their practice, and this may stimulate their own fears, memories, and emotions. The tremendous suffering associated with varied and multiple forms of loss encountered by professionals puts them at risk for chronic distress, compassion fatigue, vicarious traumatization, and burnout. Fundamental to helping relationships, empathy may enlarge the practitioner’s own grief response. Disciplined self-awareness, compassion, and the conscious use of self are essential to ensure that the bereaved’s needs are being addressed and that practitioners are getting the necessary support to process their own experiences. Self-care practices, which include physical, psychological, emotional, spiritual, and workplace strategies, including antiracism work, provide the foundation for confronting the challenges of effective grief work, enhance professionals’ satisfaction in their practice, improve their practice effectiveness, and enable sustained work with the bereaved.

NOTES Introduction 1. Elaine Pagels, Why Religion? A Personal Story (New York: Harper Collins, 2018). 2. Robert A. Neimeyer, “The Changing Face of Grief: Contemporary Directions in Theory, Research, and Practice,” Progress in Palliative Care 22, no. 3 (2014): 125–30. 3. Therese A. Rando, “Anticipatory Grief: The Term Is a Misnomer but the Phenomenon Exists,” Journal of Palliative Care 4, no. 1–2 (1991): 70–73. 4. Elizabeth Kubler-Ross and David Kessler, Life’s Lessons: Two Experts on Death and Dying Tell Us About the Mysteries of Life and Living (New York: Scribner, 2001). 5. Nate Rattner, “U.S. Surpasses 500,000 Covid Deaths After Yearlong Battle with Pandemic,” CNBC, February 22, 2021, https://www.cnbc.com/2021/02/22/the -us-covid-19-death-toll-has-surpassed-500000.html. 6. Chad A. Leaver, Jacques Perreault, and Anna Demetrakopoulos & AIDS Bereavement Project of Ontario’s Survive & Thrive Working Group, “Understanding AIDS-Related Bereavement and Multiple Loss Among Long-Term Survivors of HIV in Ontario,” Canadian Journal of Human Sexuality 17, nos. 1–2 (2008): 37–52; Liesbeth Van Humbeeck, Let Dillen, Ruth Piers, and Nele Van den Noortgate, “Grief and Loss in Older People Residing in Nursing Homes: (Un)Detected by Nurses and Care‐Assistants?,” Journal of Advanced Nursing 72, no. 12 (2016): 3125–36; James William Worden, Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner (New York: Springer, 2018). 7. Annie Cantwell-Bartl, “Grief and Coping of Parents Whose Child Has a Constant Life-Threatening Disability, Hypoplastic Left Heart Syndrome with Reference to the Dual-Process Model,” Death Studies 42, no. 9 (2018): 569–78. 8. Dorothy Stroh Becvar, In the Presence of Grief: Helping Family Members Resolve Death, Dying, and Bereavement Issues (New York: Guilford Press, 2001). 9. Worden, Grief Counseling and Grief Therapy. 10. Charles A. Corr, Donna M. Corr, and Kenneth J. Doka, Death & Dying, Life & Living (Independence, KY: Cengage Learning, 2018). 11. Judy Tatelbaum, The Courage to Grieve: Creative Living, Recovery and Growth Through Grief (New York: Harper and Row, 1980), 8; Isabelle Sherrard, “The Decisions of Ageing,” Self & Society 45, no. 2 (2017): 205–12. 12. Corr, Corr, and Doka, Death & Dying, Life & Living. 13. Pagels, Why Religion? 355

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5. Interventions for Grieving Children 1. Julie B. Kaplow, Jessica Saunders, Adrian Angold, and E. Jane Costello, “Psychiatric Symptoms in Bereaved Versus Nonbereaved Youth and Young Adults: A Longitudinal Epidemiological Study,” Journal of the American Academy of Child and Adolescent Psychiatry 49, no. 11 (2010): 1145–54; Alan M. Steinberg, Robert S. Pynoos, Ernestine C. Briggs, Ellen T. Gerrity, Christopher M. Layne, Rebecca L. Vivrette, Brittany Beyerlein, and John A. Fairbank, “The National Child Traumatic Stress Network Core Data Set: Emerging Findings, Future Directions, and Implications for Theory, Research, Practice, and Policy,” Psychological Trauma: Theory, Research, Practice, and Policy 6, no. S1 (2014): S50–70. 2. Gregory K. Fritz, “The National Child Traumatic Stress Network,” Brown University Child and Adolescent Behavior Letter 33, no. 9 (2017): 8.

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3. National Alliance for Grieving Children, “Children Grieve,” accessed June 7, 2019, https://childrengrieve.org. 4. Nancy Boyd Webb, “Assessment of the Bereaved Child,” in Helping Bereaved Children: A Handbook for Practitioners, ed. Nancy Boyd Webb (New York: Guildford Press, 2002), 19–42. 5. Judith A. Cohen, Anthony P. Mannarino, Tamra Greenberg, Susan Padlo, and Carrie Shipley, “Childhood Traumatic Grief: Concepts and Controversies,” Trauma, Violence, & Abuse 3, no. 4 (2002): 307–27. 6. Webb, “Assessment of the Bereaved Child.” 7. Lisa Berg, Mikael Rostila, and Anders Hjern, “Parental Death During Childhood and Depression in Young Adults—A National Cohort Study,” Journal of Child Psychology and Psychiatry 57, no. 9 (2016): 1092–98; Kaplow, Saunders, Angold, and Costello, “Psychiatric Symptoms in Bereaved Versus Nonbereaved Youth and Young Adults.” 8. Julie B. Kaplow, Kathryn H. Howell, and Christopher M. Layne, “Do Circumstances of the Death Matter? Identifying Socioenvironmental Risks for Grief‐ Related Psychopathology in Bereaved Youth,” Journal of Traumatic Stress 27, no. 1 (2014): 42–49. 9. Kari E. Bugge, Philip Darbyshire, Eline Grelland Røkholt, Karen Therese Sulheim Haugstvedt, and Solvi Helseth, “Young Children’s Grief: Parents’ Understanding and Coping,” Death Studies 38, no. 1 (2014): 36–43. 10. Bugge, Darbyshire, Røkholt, Haugstvedt, and Helseth, “Young Children’s Grief”; Heather L. Servaty-Seib, Jean Peterson, and Dawn Spang, “Notifying Individual Students of a Death Loss: Practical Recommendations for Schools and School Counselors,” Death Studies 27, no. 2 (2003): 167–86. 11. Robin Fiorelli, Rex Allen, Patti Anewalt, Diane S. Cowen, Brenda Kenyon, and Terri Ray, “Helping Children Grieve,” NewsLine, November 2013, 14–22, http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.571.6569&rep=rep1 &type=pdf. 12. Gunn Helen Søfting, Atle Dyregrov, and Kari Dyregrov, “Because I’m Also Part of the Family. Children’s Participation in Rituals After the Loss of a Parent or Sibling: A Qualitative Study from the Children’s Perspective,” OMEGA—Journal of Death and Dying 73, no. 2 (2016): 141–58; Mary A. Fristad, Julie Cerel, Maria Goldman, Elizabeth B. Weller, and Ronald A. Weller, “The Role of Ritual in Children’s Bereavement,” OMEGA—Journal of Death and Dying 42, no. 4 (2001): 321–39. 13. Charles A. Corr, Donna M. Corr, and Kenneth J. Doka, Death & Dying, Life & Living, 8th ed. (Boston: Cengage Learning, 2018); Fristad, Cerel, Goldman, Weller, and Weller, “The Role of Ritual in Children’s Bereavement”; James William Worden, Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 5th ed. (New York: Springer, 2018). 14. Kenneth J. Doka, “Using Ritual with Children and Adolescents,” in Living with Grief: Children, Adolescents and Loss (New York: Taylor & Francis, 2000), 153–60.

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15. Diane M. Stutey, Heather M. Helm, Heather LoSasso, and Hannah D. Kreider, “Play Therapy and Photo-Elicitation: A Narrative Examination of Children’s Grief,” International Journal of Play Therapy 25, no. 3 (2016): 154–65. 16. Mister Rogers’ Neighborhood, “Death of Gold Fish” (video), episode 36, March 23, 1970, https://vimeo.com/153417661. 17. The National Alliance for Grieving Children, “Children Grieve.” 18. The National Alliance for Grieving Children, “Children Grieve.” 19. Nancy Boyd Webb, “Grief Counseling with Child and Adolescent Survivors of Parental Suicidal Deaths,” in Grief After Suicide: Understanding the Consequences and Caring for the Survivors, ed. John R. Jordan and John L. McIntosh (New York: Routledge, 2011), 225–48. 20. Nancy Boyd Webb, “Play Therapy to Help Bereaved Children,” in Children, Adolescents and Loss: Living with Grief, ed. Kenneth K. Doka (Washington, DC: Hospice Foundation of America, 2000), 139–52, at 148. 21. Association for Play Therapy (website), accessed July 8, 2020, https://www.a4pt .org. 22. Cathy A. Malchiodi, “Creative Arts Therapy Approaches to Attachment Issues,” in Creative Arts and Play Therapy for Attachment Problems, ed. Cathy A. Malchiodi and David A. Crenshaw (New York: Guilford Press, 2014), 3–18. 23. Kelley Gallagher interview by Sara Sanders, July 8, 2019. 24. Terry Kottman, “The King of Rock and Roll: An Application of Adlerian Play Therapy,” in Play Therapy in Action: A Casebook for Practitioners, ed. Terry Kottman and Charles Schaefer (Lanham, MD: Rowman & Littlefield, 1993), 133–67; Terry Kottman and Kristin Meany-Walen, Partners in Play: An Adlerian Approach to Play Therapy, 3rd ed. (Alexandria, VA: American Counseling Association, 2016); Terry Kottman and Charles Schaefer, eds., Play Therapy in Action: A Casebook for Practitioners (Lanham, MD: Rowman & Littlefield, 1993). 25. Kathleen Muleady Seager and Susan C. Spencer, “Meeting the Bereavement Needs of Kids in Patient/Families—Not Just Playing Around,” Hospice Journal 11, no. 4 (1996): 41–66. 26. Masoumeh Farokhi and Masoud Hashemi, “The Analysis of Children’s Drawings: Social, Emotional, Physical, and Psychological Aspects,” Procedia—Social and Behavioral Sciences 30 (2011): 2219–24. 27. Paul T. Clements, Kathleen M. Benasutti, and Gloria C. Henry, “Drawing from Experience: Using Drawings to Facilitate Communication and Understanding with Children Exposed to Sudden Traumatic Deaths,” Journal of Psychosocial Nursing and Mental Health Services 39, no. 12 (2001): 12–20. 28. National Association of Social Workers (website), accessed June 3, 2015, https:// www.socialworkers.org. 29. Jennifer Baggerly and Salma Elkadi Abugideiri, “Grief Counseling for Muslim Preschool and Elementary School Children,” Journal of Multicultural Counseling and Development 38, no. 2 (2010): 112–24.

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30. Judith L. McCoyd and Carolyn Ambler Walter, Grief and Loss Across the Lifespan: A Biopsychosocial Perspective (New York: Springer, 2016). 31. Dena M. Register and Russell E. Hilliard, “Using Orff-Based Techniques in Children’s Bereavement Groups: A Cognitive-Behavioral Music Therapy Approach,” Arts in Psychotherapy 35, no. 2 (2008): 162–70. 32. Register and Hilliard, “Using Orff-Based Techniques in Children’s Bereavement Groups.” 33. J. B. Bacon, Charles A. Corr, and Donna M. Corr, “Support Groups for Bereaved Children,” in Handbook of Childhood Death and Bereavement, ed. Charles A. Corr and Donna M. Corr (New York: Springer, 1996), 285–304; Sue Anne Morrison Tonkins and Michael J. Lambert, “A Treatment Outcome Study of Bereavement Groups for Children,” Child and Adolescent Social Work Journal 13, no. 1 (1996): 3–21. 34. Worden, Grief Counseling and Grief Therapy. 35. Bacon, Corr, and Corr, “Support Groups for Bereaved Children.” 36. Kathleen S. Tillman, Michael Prazak, and Megan L. Obert, “Understanding the Experiences of Middle School Girls Who Have Received Help for Non-suicidal Self-Injury,” Clinical Child Psychology and Psychiatry 23, no. 4 (2018): 514–27. 37. Andy P. Siddaway, Alex M. Wood, Joerg Schulz, and David Trickey, “Evaluation of the CHUMS Child Bereavement Group: A Pilot Study Examining Statistical and Clinical Change,” Death Studies 39, no. 2 (2015): 99–110. 38. Rita Rosner, Joachim Kruse, and Maria Hagl, “A Meta-Analysis of Interventions for Bereaved Children and Adolescents,” Death Studies 34, no. 2 (2010): 99–136. 39. Elliot J. Rosen, “The Family as Healing Resource,” in Handbook of Childhood Death and Bereavement, ed. Charles A. Corr and Donna M. Corr (New York: Springer, 1996), 223–43. 40. Phyllis Silverman, “When Parents Die,” in Living with Grief: Children, Adolescents and Loss, ed. Kenneth Doka (Washington, DC: Hospice Foundation of America, 2000), 215–28 at 221. 41. David J. Schonfeld, Thomas Demaria, Disaster Preparedness Advisory Council, and Committee on Psychosocial Aspects of Child and Family Health, “Supporting the Grieving Child and Family,” Pediatrics 138, no. 3 (2016): e20162147. 42. Grace Hyslop Christ, Healing Children’s Grief: Surviving a Parent’s Death from Cancer (New York: Oxford University Press, 2000). 43. Worden, Grief Counseling and Grief Therapy. 44. John E. Baker, “Minimizing the Impact of Parental Grief on Children: Parent and Family Interventions,” in Death and Trauma: The Traumatology of Grieving, ed. Charles R. Figley, Brian E. Bride, and Nicholas Mazza (New York: Routledge, 1997). 45. Abraham P. Greeff and Berquin Human, “Family Resilience Relative to Parental Death,” in Handbook of Family Resilience, ed. Dorothy Becvar (New York: Springer, 2013), 321–37.

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46. Alan Carr, “Evidence‐Based Practice in Family Therapy and Systemic Consultation: Child‐Focused Problems,” Journal of Family Therapy 22, no. 1 (2000): 29–60; Irwin N. Sandler, Stephen G. West, Louise Baca, David R. Pillow, Joanne C. Gersten, Fred Rogosch, Lynn Virdin, et al., “Linking Empirically Based Theory and Evaluation: The Family Bereavement Program,” American Journal of Community Psychology 20, no. 4 (1992): 491–521. 47. Lisa Quinn-Lee, “School Social Work with Grieving Children,” Children and Schools 36, no. 2 (2014): 93–103. 48. Donna M. Burns, When Kids Are Grieving: Addressing Grief and Loss in School (Thousand Oaks, CA: Corwin Press, 2010). 49. Sara Sanders and Patti Anewalt, “Grief, Self-Care, and Staff Care,” Transforming Palliative Care in Nursing Homes, ed. Mercedes Bern Klug (New York: Columbia University Press, 2010), 281–308. 50. Dougy Center, “Covid-19 Resources,” https://www.dougy.org/resources/cause -of-death/covid-19; D. Fassler, “Talking to Children about Coronavirus (Covid-19)”, American Academy of Child and Adolescent Psychiatry, www.aacap.org, accessed February 28, 2021. 51. American Society for the Prevention of Cruelty to Animals (website), accessed July 8, 2018, https://www.aspca.org/news/aspca-helped-animals-win-big-2018. 52. Atle Dyregrov, Alison Salloum, Pål Kristensen, and Kari Dyregrov, “Grief and Traumatic Grief in Children in the Context of Mass Trauma,” Current Psychiatry Reports 17, no. 6 (2015): 48. 53. Cohen, Mannarino, Greenberg, Padlo, and Shipley, “Childhood Traumatic Grief,” 307. 54. Webb, “Play Therapy to Help Bereaved Children.” 55. Dyregrov, Salloum, Kristensen, and Dyregrov, “Grief and Traumatic Grief in Children in the Context of Mass Trauma.” 56. Edward K. Rynearson, Manual for Restorative Retelling in a Correctional Setting (Seattle, WA: Virginia Mason Medical Center, August 2001), http://www.vdbs .org/docs/Correctional-Manual.pdf. 57. Judith A. Cohen, Anthony P. Mannarino, and Satish Iyengar, “Community Treatment of Posttraumatic Stress Disorder for Children Exposed to Intimate Partner Violence: A Randomized Controlled Trial,” Archives of Pediatrics & Adolescent Medicine 165, no. 1 (2011): 16–21. 58. Robert S. Pynoos, Armen K. Goenjian, and Alan M. Steinberg, “A Public Mental Health Approach to the Postdisaster Treatment of Children and Adolescents,” Child and Adolescent Psychiatric Clinics 7, no. 1 (1998): 195–210. 59. Esther J. Jenkins, Edward Wang, and Larry Turner, “Beyond Community Violence: Loss and Traumatic Grief in African American Elementary School Children,” Journal of Child and Adolescent Trauma 7, no. 1 (2014): 27–36. 60. Abbey R. Masonbrink and Emily Hurley, “Advocating for Children During the COVID-19 School Closures,” Pediatrics 146, no. 3 (2020): 1–5.

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61. Sandra Bloom, “Beyond the Beveled Mirror: Mourning and Recovery from Childhood Maltreatment,” in Loss of the Assumptive World: A Theory of Traumatic Loss, ed. Jeffrey Kauffman (New York: Brunner-Routledge, 2002), 139–70. 62. Sigrid James and Ferol Mennen, “Treatment Outcome Research: How Effective Are Treatments for Abused Children?,” Child and Adolescent Social Work Journal 18, no. 2 (2001): 73–95. 63. Eliana Gil, “Play Therapy for Severe Psychological Trauma” (videotape) (New York: Guilford Press, 1998). 64. Association for Play Therapy. 65. Diana Coholic, Mark Fraser, Brenda Robinson, and Sean Lougheed, “Promoting Resilience Within Child Protection: The Suitability of Arts-Based and Experiential Group Programs for Children in Care,” Social Work with Groups 35, no. 4 (2012): 345–61. 66. Child Advocate, “Children’s Advocate,” accessed June 8, 2019, http://www.child advocate.net/. 67. Kerrie R. Fineran, “Helping Foster and Adopted Children to Grieve the Loss of Birthparents: A Case Study Example,” Family Journal 20, no. 4 (2012): 369–75; Yvonne A. Unrau, John R. Seita, and Kristin S. Putney, “Former Foster Youth Remember Multiple Placement Moves: A Journey of Loss and Hope,” Children and Youth Services Review 30, no. 11 (2008): 1256–66. 68. Monique B. Mitchell, “ ‘No One Acknowledged My Loss and Hurt’: Non-death Loss, Grief, and Trauma in Foster Care,” Child and Adolescent Social Work Journal 35, no. 1 (2018): 1–9. 69. Fostering Perspectives, “Fostering Perspectives,” accessed June 8, 2019, http:// fosteringperspectives.org/; Verywellfamily, “Very Well Family,” accessed June 8, 2019, http://verywellfamily.com/; Youth Dynamics, “Youth Dynamics,” accessed June 8, 2019, http://youthdynamics.org/. 70. Sarah C. Williams, Verba Fanolis, and Gerald Schamess, “Adapting the Pynoos School-Based Group Therapy Model for Use with Foster Children: Theoretical and Process Considerations,” Journal of Child and Adolescent Group Therapy 11, no. 2–3 (2001): 57–76. 71. Sophie Boswell and Lynne Cudmore, “ ‘The Children Were Fine’: Acknowledging Complex Feelings in the Move from Foster Care Into Adoption,” Adoption & Fostering 38, no. 1 (2014): 5–21; Leslie A. Baxter, Kristina M. Scharp, Bryan Asbury, Amber Jannusch, and Kristen M. Norwood, “  ‘Birth Mothers Are Not Bad People’: A Dialogic Analysis of Online Birth Mother Stories,” Departures in Critical Qualitative Research 1, no. 1 (2012): 53–82; Fineran, “Helping Foster and Adopted Children to Grieve the Loss of Birthparents”; Lorraine Sherr, Kathryn J. Roberts, and Natasha Croome, “Emotional Distress, Resilience and Adaptability: A Qualitative Study of Adults Who Experienced Infant Abandonment,” Health Psychology and Behavioral Medicine 5, no. 1 (2017): 197–213.

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6. Loss and Grief in Adolescence 1. David E. Balk, Dealing with Dying, Death, and Grief During Adolescence (New York: Routledge, 2014); Charles A. Corr and Donna M Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning,” in Handbook of Thanatology, 2nd ed., ed. David K. Meagher and David E. Balk (New York: Routledge, 2013), 135–39. 2. Carolyn Ambler Walter and Judith L. McCoyd, Grief and Loss Across the Lifespan: A Biopsychosocial Perspective (New York: Springer, 2016). 3. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.” 4. Taiza Ramos de Souza Costa Ferreira and Suely Ferreira Deslandes, “Cyberbullying: Concepts, Dynamics, Characters and Health Implications,” Ciencia & Saude Coletiva 23 (2018): 3369–79. 5. James William Worden, Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 5th ed. (New York: Springer, 2018). 6. Ferreira and Deslandes, “Cyberbullying”; Hannah Gaffney, David P. Farrington, Dorothy L. Espelage, and Maria M. Ttofi, “Are Cyberbullying Intervention and Prevention Programs Effective? A Systematic and Meta-Analytical Review,” Aggression and Violent Behavior 45 (2019): 134–53. 7. Erik H. Erikson, Youth: Change and Challenge (New York: Basic Books, 1963). 8. Deborah Rivas‐Drake, Eleanor K. Seaton, Carol Markstrom, Stephen Quintana, Moin Syed, Richard M. Lee, Seth J. Schwartz, et al., “Ethnic and Racial Identity in Adolescence: Implications for Psychosocial, Academic, and Health Outcomes,” Child Development 85, no. 1 (2014): 40–57. 9. Worden, Grief Counseling and Grief Therapy. 10. David E. Balk, “The Adolescent’s Encounter with Death,” in Living with Grief: Children and Adolescents, ed. Kenneth J. Doka and Amy S. Tucci (Washington, DC: Hospice Foundation of America, 2008), 25–42. 11. Walter and McCoyd, Grief and Loss Across the Lifespan. 12. Dannette M. Muselman and Marsha I. Wiggins, “Spirituality and Loss: Approaches for Counseling Grieving Adolescents,” Counseling and Values 57, no. 2 (2012): 229–40. 13. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.” 14. Balk, Dealing with Dying, Death, and Grief During Adolescence; Walter and McCoyd, Grief and Loss Across the Lifespan. 15. Walter and McCoyd, Grief and Loss Across the Lifespan; David Balk and Charles A. Corr, eds., Adolescent Encounters with Death, Bereavement, and Coping (New York: Springer, 2009). 16. Grace H. Christ, Karolynn Siegel, and Adolph E. Christ, “Adolescent Grief: It Never Really Hit Me . . . Until It Actually Happened,” JAMA 288, no. 10 (2002): 1269–78.

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17. David E. Balk, Donna Zaengle, and Charles A. Corr, “Strengthening Grief Support for Adolescents Coping with a Peer’s Death,” School Psychology International 32, no. 2 (2011): 144–62. 18. Balk, Dealing with Dying, Death, and Grief During Adolescence; Walter and McCoyd, Grief and Loss Across the Lifespan. 19. Daniel Romer, Angela L. Duckworth, Sharon Sznitman, and Sunhee Park, “Can Adolescents Learn Self-Control? Delay of Gratification in the Development of Control over Risk Taking,” Prevention Science 11, no. 3 (2010): 319–30; Daniel J. Siegel, Brainstorm: The Power and Purpose of the Teenage Brain (New York: Penguin, 2015). 20. Walter and McCoyd, Grief and Loss Across the Lifespan; Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.” 21. Balk, Dealing with Dying, Death, and Grief During Adolescence.; Walter and McCoyd, Grief and Loss Across the Lifespan; Balk and Corr, Adolescent Encounters with Death, Bereavement, and Coping. 22. Balk, Dealing with Dying, Death, and Grief During Adolescence; Walter and McCoyd, Grief and Loss Across the Lifespan; Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.” 23. Balk and Corr, Adolescent Encounters with Death. 24. David E. Balk and Charles A. Corr, “Bereavement During Adolescence: A Review of Research,” in Handbook of Bereavement Research: Consequences, Coping, and Care, ed. Margaret S. Stroebe, Robert O. Hansson, Wolfgang Stroebe, and Henk Schut (Washington, DC: American Psychological Association, 2001),199–218. 25. Walter and McCoyd, Grief and Loss Across the Lifespan. 26. Balk, Dealing with Dying, Death, and Grief During Adolescence; Balk and Corr, “Bereavement During Adolescence.” 27. Balk, Zaengle, and Corr, “Strengthening Grief Support for Adolescents Coping with a Peer’s Death.” 28. Christ, Siegel, and Christ, “Adolescent Grief”; Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.” 29. Nancy S. Hogan and David E. Balk, “Adolescent Reactions to Sibling Death: Perceptions of Mothers, Fathers, and Teenagers,” Nursing Research 39, no. 2 (March–April 1990): 103–6. 30. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning”; Heather L. Servaty-Seib, “Death of a Friend During Adolescence,” in Adolescent Encounters with Death, Bereavement, and Coping, ed. David E. Balk and Charles A. Corr (New York: Springer, 2009), 217–35. 31. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.” 32. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.”

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33. Julie Stokes, Catriona Reid, and Vanessa Cook, “Life as an Adolescent When a Parent Has Died,” in Adolescent Encounters with Death, Bereavement, and Coping, ed. David E. Balk and Charles A. Corr (New York: Springer, 2009), 177–97. 34. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning”; Balk, Dealing with Dying, Death, and Grief During Adolescence. 35. Marie Good and Teena Willoughby, “Adolescence as a Sensitive Period for Spiritual Development,” Child Development Perspectives 2, no. 1 (2008): 32–37; Danah Zohar and Ian Marshall, Spiritual Intelligence: The Ultimate Intelligence (New York: Bloomsbury, 2000). 36. Muselman and Wiggins, “Spirituality and Loss.” 37. David R. Hodge, “Constructing Spiritually Modified Interventions: Cognitive Therapy with Diverse Populations,” International Social Work 51, no. 2 (2008): 178–92. 38. Balk and Corr, Adolescent Encounters with Death, Bereavement, and Coping; Thema Bryant-Davis, Monica U. Ellis, Elizabeth Burke-Maynard, Nathan Moon, Pamela A. Counts, and Gera Anderson, “Religiosity, Spirituality, and Trauma Recovery in the Lives of Children and Adolescents,” Professional Psychology: Research and Practice 43, no. 4 (2012): 306–14; Sian Cotton, Kathy Zebracki, Susan L. Rosenthal, Joel Tsevat, and Dennis Drotar, “Religion/Spirituality and Adolescent Health Outcomes: A Review,” Journal of Adolescent Health 38, no. 4 (2006): 472–80; Alyssa S. Milot and Alison Bryant Ludden, “The Effects of Religion and Gender on Well-Being, Substance Use, and Academic Engagement Among Rural Adolescents,” Youth & Society 40, no. 3 (2009): 403–25. 39. Bryant-Davis, Ellis, Burke-Maynard, Moon, Counts, and Anderson, “Religiosity, Spirituality, and Trauma Recovery in the Lives of Children and Adolescents”; Good and Willoughby, “Adolescence as a Sensitive Period for Spiritual Development”; Mark D. Holder, Ben Coleman, and Judi M. Wallace, “Spirituality, Religiousness, and Happiness in Children Aged 8–12 Years,” Journal of Happiness Studies 11, no. 2 (2010): 131–50; Muselman and Wiggins, “Spirituality and Loss.” 40. Ida Skytte Jakobsen and Erik Christiansen, “Young People’s Risk of Suicide Attempts in Relation to Parental Death: A Population‐Based Register Study,” Journal of Child Psychology and Psychiatry 52, no. 2 (2011): 176–83; Stokes, Reid, and Cook, “Life as an Adolescent When a Parent Has Died.” 41. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning”; Walter and McCoyd, Grief and Loss Across the Lifespan. 42. Punziano Antonella Cinzia, Licia Montagna, Chiara Mastroianni, Casale Giuseppe, Michela Piredda, and Maria Grazia de Marinis, “Losing a Parent: Analysis of the Literature on the Experiences and Needs of Adolescents Dealing with Grief,” Journal of Hospice & Palliative Nursing 16, no. 6 (2014): 362–73. 43. Balk and Corr, Adolescent Encounters with Death, Bereavement, and Coping. 44. Walter and McCoyd, Grief and Loss Across the Lifespan.

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45. Elodie Charbonnier and Pierluigi Graziani, “The Stress Associated with the Coming Out Process in the Young Adult Population,” Journal of Gay & Lesbian Mental Health 20, no. 4 (2016): 319–28. 46. Linda Goldman and Vincent M. Livoti, “Grief in GLBT Populations: Focus on Gay and Lesbian Youth,” in Grief and Bereavement in Contemporary Society: Bridging Research and Practice, ed. Robert A. Neimeyer, Darcy L. Harris, Howard R. Winokuer, and Gordon F. Thornton (New York: Routledge, 2011), 249–59. 47. Evan Mitchell Schares, “The Suicide of Leelah Alcorn: Whiteness in the Cultural Wake of Dying Queers,” QED: A Journal in GLBTQ Worldmaking 6, no. 1 (2019): 1–25. 48. Movement Advancement Project, “Talking About Suicide & LGBT Populations,” 2nd ed., August 2017, https://www.lgbtmap.org/talking-about-suicide-and-lgbt -populations. 49. Goldman and Livoti, “Grief in GLBT Populations”; Rachel M. Schmitz and Kimberly A. Tyler, “ ‘Life Has Actually Become More Clear’: An Examination of Resilience Among LGBTQ Young Adults,” Sexualities 22, no. 4 (2019): 710–33. 50. Karl Andriessen, Jane Mowll, Elizabeth Lobb, Brian Draper, Michael Dudley, and Philip B. Mitchell, “ ‘Don’t Bother About Me.’ The Grief and Mental Health of Bereaved Adolescents,” Death Studies 42, no. 10 (2018): 607–15; Lisa Berg, Mikael Rostila, and Anders Hjern, “Parental Death During Childhood and Depression in Young Adults—A National Cohort Study,” Journal of Child Psychology and Psychiatry 57, no. 9 (2016): 1092–98. 51. Balk, Dealing with Dying, Death, and Grief During Adolescence; Nadine M. Melhem, Giovanna Porta, Wael Shamseddeen, Monica Walker Payne, and David A. Brent, “Grief in Children and Adolescents Bereaved by Sudden Parental Death,” Archives of General Psychiatry 68, no. 9 (2011): 911–19; Michael S. Hollingshaus and Ken R. Smith, “Life and Death in the Family: Early Parental Death, Parental Remarriage, and Offspring Suicide Risk in Adulthood,” Social Science & Medicine 131 (2015): 181–89. 52. Balk, Dealing with Dying, Death, and Grief During Adolescence. 53. Jakobsen and Christiansen, “Young People’s Risk of Suicide Attempts in Relation to Parental Death”; Yvonne Stikkelbroek, Denise Bodden, Ellen Reitz, Wilma Vollebergh, and Anneloes L. van Baar, “Mental Health of Adolescents Before and After the Death of a Parent or Sibling,” European Child & Adolescent Psychiatry 25, no. 1 (2016): 49–59. 54. Cinzia, Montagna, Mastroianni, Giuseppe, Piredda, and de Marinis, “Losing a Parent.” 55. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning.” 56. Stikkelbroek, Bodden, Reitz, Vollebergh, and van Baar, “Mental Health of Adolescents Before and After the Death of a Parent or Sibling”; Walter and McCoyd, Grief and Loss Across the Lifespan.

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106. Trisha Leahy, Grace Pretty, and Gershon Tenenbaum, “Childhood Sexual Abuse Narratives in Clinically and Nonclinically Distressed Adult Survivors,” Professional Psychology: Research and Practice 34, no. 6 (2003): 657–65. 107. Tashel C. Bordere, “Social Justice Conceptualizations in Grief and Loss,” in Handbook of Social Justice in Loss and Grief, ed. Darcy Harris and Tashel Bordere (New York: Routledge, 2016), 29–40. 108. Schultz and Harris, “Giving Voice to Nonfinite Loss and Grief in Bereavement”; Jaane Shakespeare-Finch and Deanne Armstrong, “Trauma Type and Posttrauma Outcomes: Differences Between Survivors of Motor Vehicle Accidents, Sexual Assault, and Bereavement,” Journal of Loss and Trauma 15, no. 2 (2010): 69–82. 109. Thema Bryant-Davis, Sarah E. Ullman, Yuying Tsong, and Robyn Gobin, “Surviving the Storm: The Role of Social Support and Religious Coping in Sexual Assault Recovery of African American Women,” Violence Against Women 17, no. 12 (2011): 1601–18; Bordere, “Disenfranchisement and Ambiguity in the Face of Loss”; Vania Ranjbar and Susan A. Speer, “Revictimization and Recovery from Sexual Assault: Implications for Health Professionals,” Violence and Victims 28, no. 2 (2013): 274–87. 110. Boss, Roos, and Harris, “Grief in the Midst of Ambiguity and Uncertainty”; Audrey K. Miller, Erika J. Canales, Amanda M. Amacker, Tamika L. Backstrom, and Christine A. Gidycz, “Stigma-Threat Motivated Nondisclosure of Sexual Assault and Sexual Revictimization: A Prospective Analysis,” Psychology of Women Quarterly 35, no. 1 (2011): 119–28. 111. Bordere, “Disenfranchisement and Ambiguity in the Face of Loss”; Susan E. Borja, Jennifer L. Callahan, and Patricia J. Long, “Positive and Negative Adjustment and Social Support of Sexual Assault Survivors,” Journal of Traumatic Stress 19, no. 6 (2006): 905–14. 112. Louise M. Rosenblatt, Literature as Exploration (New York: Modern Language Association, 2016). 113. Bordere, “Disenfranchisement and Ambiguity in the Face of Loss.” 114. Alex Gitterman and Carolyn Knight, “Non-death Loss: Grieving for the Loss of Familiar Place and for Precious Time and Associated Opportunities,” Clinical Social Work Journal 47, no. 2 (2019): 147–55. 115. Manuel M. FernaĔdez-Alcántara, Manuel, Mª Paz García-Caro, Mª Nieves Pérez-Marfil, Cesar Hueso-Montoro, Carolina Laynez-Rubio, and Francisco Cruz-Quintana, “Feelings of Loss and Grief in Parents of Children Diagnosed with Autism Spectrum Disorder (ASD),” Research in Developmental Disabilities 55 (2016): 312–21. 116. Wanda Sawicki, “We Are Not Like Other People: Identity Loss and Reconstruction Following Migration,” in Counting Our Losses: Reflecting on Change, Loss, and Transition in Everyday Life, ed. Darcey L. Harris (New York: Routledge, 2011), 151–61.

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9. Interventions for Grieving Young Adults 1. Margaret Stroebe and Henk Schut, “To Continue or Relinquish Bonds: A Review of Consequences for the Bereaved,” Death Studies 29, no. 6 (2005): 477– 94; James William Worden, Grief Counseling and Grief Therapy: A Handbook for the Mental Health Practitioner, 5th ed. (New York: Springer, 2018). 2. Robert J. Haggerty and Patricia J. Mrazek, eds., Reducing Risks for Mental Disorders: Frontiers for Preventive Intervention Research (Washington, DC: National Academies Press, 1994).

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13. Trena M. Paulus and Mary Alice Varga, “ ‘Please Know That You Are Not Alone with Your Pain’: Responses to Newcomer Posts in an Online Grief Support Forum,” Death Studies 39, no. 10 (2015): 633–40. 14. Neeraj K. Arora, Pauley Johnson, David H. Gustafson, Fiona Mctavish, Robert P. Hawkins, and Suzanne Pingree, “Barriers to Information Access, Perceived Health Competence, and Psychosocial Health Outcomes: Test of a Mediation Model in a Breast Cancer Sample,” Patient Education and Counseling 47, no. 1 (2002): 37–46; David H. Gustafson, Robert Hawkins, Suzanne Pingree, Fiona McTavish, Neeraj K. Arora, John Mendenhall, David F. Cella, et al., “Effect of Computer Support on Younger Women with Breast Cancer,” Journal of General Internal Medicine 16, no. 7 (2001): 435–45. 15. S. Anne Moorhead, Diane E. Hazlett, Laura Harrison, Jennifer K. Carroll, Anthea Irwin, and Ciska Hoving, “A New Dimension of Health Care: Systematic Review of the Uses, Benefits, and Limitations of Social Media for Health Communication,” Journal of Medical Internet Research 15, no. 4 (2013): e85. 16. Elder and Burke, “Parental Grief Expression in Online Cancer Support Groups”; Margaret S. Stroebe, Karolijne van der Houwen, and Henk Schut, “Bereavement Support, Intervention, and Research on the Internet: A Critical Review,” in Handbook of Bereavement Research and Practice: Advances in Theory and Intervention, ed. Margaret S. Stroebe, Robert O. Hansson, Henk Schut, and Wolfgang Stroebe (Washington, DC: American Psychological Association, 2008), 551–74. 17. Worden, Grief Counseling and Grief Therapy. 18. Vincent R. Waldron, Melissa Lavitt, and Douglas Kelley, “The Nature and Prevention of Harm in Technology-Mediated Self-Help Settings: Three Exemplars,” Journal of Technology in Human Services 17, no. 2–3 (2000): 267–93. 19. Davis and Lewis, “Impassioned Communication and Virtual Support Roles of Online Postings”; Natalène Séjourné, J. Fagny, F. Got, P. Lacroix, C. Pauchet, and L. Combalbert, “Internet Forums Following a Miscarriage: A Place for Women in Particular Pain?,” Journal of Reproductive and Infant Psychology 34, no. 1 (2016): 28–34. 20. Rose E. L. Constantino, Kathleen Sekula, and Elaine N. Rubinstein, “Group Intervention for Widowed Survivors of Suicide,” Suicide and Life-Threatening Behavior 31, no. 4 (2001): 428–41. 21. John Archer, “Grief from an Evolutionary Perspective,” in Handbook of Bereavement Research: Consequences, Coping, and Care, ed. Margaret S. Stroebe, Robert O. Hansson, Wolfgang Stroebe, and Henk Schut (Washington, DC: American Psychological Association, 2001), 263–83. 22. Kristen E. Lamp, Kimberly M. Avallone, Kelly P. Maieritsch, Katherine R. Buchholz, and Sheila A. M. Rauch, “Individual and Group Cognitive Processing Therapy: Effectiveness Across Two Veterans Affairs Posttraumatic Stress

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49. Palmer and Murphy-Oikonen, “Social Work Intervention for Women Experiencing Early Pregnancy Loss in the Emergency Department.” 50. Katherine J. Gold, Vanessa K. Dalton, and Thomas L. Schwenk, “Hospital Care for Parents After Perinatal Death,” Obstetrics & Gynecology 109, no. 5 (2007): 1156–66. 51. Bernadette Reilly-Smorawski, Anne V. Armstrong, and Elizabeth A. Catlin, “Bereavement Support for Couples Following Death of a Baby: Program Development and 14-Year Exit Analysis,” Death Studies 26, no. 1 (2002): 21–37. 52. Judith A. Murray, Deborah J. Terry, John C. Vance, D. Battistutta, and Y. Connolly, “Effects of a Program of Intervention on Parental Distress Following Infant Death,” Death Studies 24, no. 4 (2000): 275–305. 53. Anette Kersting, Ruth Dolemeyer, Jana Steinig, Franziska Walter, Kristin Kroker, Katja Baust, and Birgit Wagner, “Brief Internet-Based Intervention Reduces Posttraumatic Stress and Prolonged Grief in Parents After the Loss of a Child During Pregnancy: A Randomized Controlled Trial,” Psychotherapy and Psychosomatics 82 (2013): 372–81. 54. Penny F. Stastny, Thomas G. Keens, and Abbey Alkon, “Supporting SIDS Families: The Public Health Nurse SIDS Home Visit,” Public Health Nursing 33, no. 3 (2016): 242–48. 55. Atle Dyregrov, “Early Intervention–A Family Perspective,” Advances in MindBody Medicine 17, no. 3 (2001): 168–74. 56. Cacciatore, “The Unique Experiences of Women and Their Families After the Death of a Baby.” 57. Alex Gitterman and Carolyn Knight, “Non-death Loss: Grieving for the Loss of Familiar Place and for Precious Time and Associated Opportunities,” Clinical Social Work Journal 47, no. 2 (2019): 147–55. 58. Pauline Boss, “The Trauma and Complicated Grief of Ambiguous Loss,” Pastoral Psychology 59, no. 2 (2010): 137–45. 59. Bogdanna Andreyko, “The Emotional State of Parents in the Structure of the Stages of the Experience of Having a Child with Developmental Disabilities,” Journal of Education, Culture, and Society 7, no. 2 (2016): 150–57. 60. Joanne Cantwell, Orla Muldoon, and Stephen Gallagher, “The Influence of Self‐Esteem and Social Support on the Relationship Between Stigma and Depressive Symptomology in Parents Caring for Children with Intellectual Disabilities,” Journal of Intellectual Disability Research 59, no. 10 (2015): 948–57; Kiri A. Patton, Robert Ware, Lyn McPherson, Eric Emerson, and Nicholas Lennox, “Parent‐Related Stress of Male and Female Carers of Adolescents with Intellectual Disabilities and Carers of Children Within the General Population: A Cross‐Sectional Comparison,” Journal of Applied Research in Intellectual Disabilities 31, no. 1 (2018): 51–61. 61. Heather Williamson, Elizabeth A. Perkins, Oliver T. Massey, Julie A. Baldwin, Amie Lulinski, Mary I. Armstrong, and Bruce L. Levins, “Family Caregivers as

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Needed Partners: Recognizing Their Role in Medicaid Managed Long‐Term Services and Supports,” Journal of Policy and Practice in Intellectual Disabilities 15, no. 3 (2018): 214–25. Vivian L. Gadsden, Morgan Ford, and Heather Breiner, eds., Parenting Matters: Supporting Parents of Children Ages 0–8 (Washington, DC: National Academies Press, 2016). Heather A. Love, “Sexual Assault: The Therapist, Supervisor, and Self,” Journal of Feminist Family Therapy 31, no. 2–3 (2019): 66–77. Cheryl Regehr, Ramona Alaggia, Jane Dennis, Annabel Pitts, and Michael Saini, “Interventions to Reduce Distress in Adult Victims of Rape and Sexual Violence: A Systematic Review,” Research on Social Work Practice 23, no. 3 (2013): 257–65. Sarah DeGue, Linda Anne Valle, Melissa K. Holt, Greta M. Massetti, Jennifer L. Matjasko, and Andra Teten Tharp, “A Systematic Review of Primary Prevention Strategies for Sexual Violence Perpetration,” Aggression and Violent Behavior 19, no. 4 (2014): 346–62. Love, “Sexual Assault.” Katherine E. Stewart, Janice Du Mont, and Helene J. Polatajko, “Applying an Occupational Perspective to Women’s Experiences of Life After Sexual Assault: A Narrative Review,” Journal of Occupational Science 26, no. 4 (2019): 546–58; Rebecca Twinley, “The Perceived Impacts of Woman-to-Woman Rape and Sexual Assault, and the Subsequent Experience of Disclosure, Reaction, and Support on Victim/Survivors’ Subjective Experience of Occupation” (thesis, University of Plymouth, 2016). Alexis Tomarken, Andrew Roth, Jimmie Holland, Ollie Ganz, Sherry Schachter, Gary Kose, Paul Michael Ramirez, Rhiannon Allen, and Christian J. Nelson, “Examining the Role of Trauma, Personality, and Meaning in Young Prolonged Grievers,” Psycho‐Oncology 21, no. 7 (2012): 771–77. Safe Start, “Promising Approaches Communities: Improving Outcomes for Children Exposed to Violence,” accessed March 10, 2020, https://ojjdp.ojp.gov /sites/g/files/xyckuh176/files/programs/safestart/ImprovingOutcomesfor ChildrenExposedtoViolence.pdf/. Shabman Etemadi, “Multicultural Counseling with the Immigrant and Refugee Community,” Counseling Today, December 4, 2013. Florence W. Kaslow, “Intervening with Immigrant Families: An Integrative Systems Perspective,” Journal of Family Psychotherapy 25, no. 2 (2014): 177–91. David Baker, Danna Norris, and Veroniki Cherneva, “Disenfranchised Grief and Families’ Experiences of Death After Police Contact in the United States,” OMEGA—Journal of Death and Dying (May 2019): 1–18. Samuel R. Aymer, “I Can’t Breathe: A Case Study—Helping Black Men Cope with Race-Related Trauma Stemming from Police Killing and Brutality,” Journal of Human Behavior in the Social Environment 26, no. 3–4 (2016): 367–76.

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10. Loss and Grief in Middle Adulthood 1. Charles A. Corr and Donna M. Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning,” in Handbook of Thanatology, 2nd ed., ed. David K. Meagher and David E. Balk (New York: Routledge, 2013),135–39; Carolyn Ambler Walter and Judith L. M. McCoyd, Grief and Loss Across the Lifespan: A Biopsychosocial Perspective (New York: Springer, 2016). 2. Corr and Corr, “Historical and Contemporary Perspectives on Loss, Grief, and Mourning”; Margie E. Lachman, Salom Teshale, and Stefan Agrigoroaei, “Midlife as a Pivotal Period in the Life Course: Balancing Growth and Decline at the Crossroads of Youth and Old Age,” International Journal of Behavioral Development 39, no. 1 (2015): 20–31. 3. Erik H. Erikson, Growth and Crises of the Healthy Personality (New York: Josiah Macy Jr. Foundation, 1950). 4. Barbara M. Newman and Philip R. Newman, Development Through Life: A Psychosocial Approach (Boston: Cengage Learning, 2017); Walter and McCoyd, Grief and Loss Across the Lifespan. 5. Daniel J. Levinson, “The Mid-Life Transition: A Period in Adult Psychosocial Development,” Psychiatry 40, no. 2 (1977): 99–112. 6. Lachman, Teshale, and Agrigoroaei, “Midlife as a Pivotal Period in the Life Course.” 7. Sherri L. Willis, Mike Martin, and Christina Röcke, “Longitudinal Perspectives on Midlife Development: Stability and Change,” European Journal of Ageing 7 no. 3 (2010): 131–34. 8. Laura L. Carstensen, “The New Age of Much Older Age,” Time, February 12, 2015, 68–70; Lachman, Teshale, and Agrigoroaei, “Midlife as a Pivotal Period in the Life Course”; Walter and McCoyd, Grief and Loss Across the Lifespan. 9. Julie S. Dare, “Transitions in Midlife Women’s Lives: Contemporary Experiences,” Health Care for Women International 32, no. 2 (2011): 111–33; Betty Vicki Kafanelis, Marion Kostanski, Paul A. Komesaroff, and Lily Stojanovska, “Being in the Script of Menopause: Mapping the Complexities of Coping Strategies,”

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11. Interventions for Grieving Midlife Adults 1. Margie E. Lachman, Salom Teshale, and Stefan Agrigoroaei, “Midlife as a Pivotal Period in the Life Course: Balancing Growth and Decline at the Crossroads of Youth and Old Age,” International Journal of Behavioral Development 39, no. 1 (2015): 20–31. 2. Janet Currie and Hannes Schwandt, “Inequality in Mortality Decreased Among the Young While Increasing for Older Adults, 1990–2010,” Science 352, no. 6286 (2016): 708–12. 3. Carl G. Jung, “The Stages of Life,” in The Portable Jung, ed. Joseph Campbell (New York: Viking Penguin,1971), 3–22. 4. Amy Waller, Heidi Turon, Elise Mansfield, Katherine Clark, Bree Hobden, and Rob Sanson-Fisher, “Assisting the Bereaved: A Systematic Review of the Evidence for Grief Counselling,” Palliative Medicine 30, no. 2 (2016): 132–48. 5. Robert O. Hansson and Margaret S. Stroebe, “Grief, Older Adulthood,” in Encyclopedia of Primary Prevention and Health Promotion, ed. Thomas P. Gullotta and Martin Bloom (New York: Springer, 2003), 515–21; John R. Jordan and Robert A. Neimeyer, “Does Grief Counseling Work?,” Death Studies 27, no. 9 (2003): 765–86; Margaret S. Stroebe, Robert O. Hansson, Wolfgang Stroebe, and Henk Schut, eds., Handbook of Bereavement Research: Consequences, Coping, and Care (Washington, DC: American Psychological Association, 2001). 6. M. Katherine Shear, Naomi Simon, Melanie Wall, Sidney Zisook, Robert Neimeyer, Naihua Duan, Charles Reynolds, et al., “Complicated Grief and Related Bereavement Issues for DSM‐5,” Depression and Anxiety 28, no. 2 (2011): 103–17. 7. Hansson and Stroebe, “Grief, Older Adulthood”; Amy Waller, Heidi Turon, Elise Mansfield, Katherine Clark, Bree Hobden, and Rob Sanson-Fisher, “Assisting the Bereaved: A Systematic Review of the Evidence for Grief Counselling,” Palliative Medicine 30, no. 2 (2016): 132–48. 8. Shear, Simon, Wall, Zisook, Neimeyer, Duan, Reynolds, et al., “Complicated Grief and Related Bereavement Issues for DSM‐5.” 9. Therese A. Rando, Treatment of Complicated Mourning (Champaign, IL: Research Press, 1993). 10. Elaine Glass, Douglas Cluxton, and Patrice Rancour, “Principles of Patient and Family Assessment,” in Textbook of Palliative Nursing, ed. Betty R. Ferrel, Nessa Coyle and Judith Paice (New York: Oxford University Press, 2001), 37–50; Katherine Walsh-Burke, “Matching Bereavement Services to Level of Need,” Hospice Journal 15, no. 1 (2000): 77–86.

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INDEX

Page numbers in italics indicate figures or tables. abortion. See perinatal and prenatal death and loss abuse: child, grief interventions for, 137–38; complicated grief for survivors of, 210; guilt and self-blame for survivors of, 211; young adult loss and grief around, 209–11, 234–36. See also substance abuse accidents: adolescent death by, statistics, 158; ambiguous loss with unresolved grief, 54; child’s death by, xii–xiii, 47, 48, 60, 62–63, 101, 204, 250, 253–54, 255, 258–59, 288–89; life-threatening, loss of self with, 9; resilience factors around, 75, 84; sibling death from, xi. See also catastrophes/natural disasters; traumatic loss and grief accumulation of loss, 13, 72, 73 adolescent grief interventions: anger navigation and, 165–67; arts and creativity based, 167, 184; assessments for, 167, 177; community violence/homicide and, 186–87; cultural norms and variations awareness in, 167, 170, 176, 187, 188; death education role in, 168; divorce or separation of parents and, 176–77; emotional expression focus for, 165–67, 169–70, 171, 172–73, 174–75, 184; family system and, 173–76; gender factors in, 172–73, 174; group-based, 169–70, 176, 184, 186–87; male-specific, 172–73; media/films aiding, 181; music and

music therapy in, 170–71; narrative and storytelling in, 175, 177; online, 142, 176, 187, 218–19, 229; overview and goals of, 165–67, 187–88; parental death and, 172–76; physical outlet/exercise impacts in, 166, 167; racial/ethnic identity considerations in, 186–87; religion and spirituality role in, 187; school-based, 168–69, 181; school shootings and, 168, 184–85; sibling death and, 172–76; suicide and, 167, 168, 177–83; for teen pregnancy and perinatal death, 177; for traumatic and unexpected loss, 183–86 adolescent loss and grief: anger and rage with, 89, 146, 165–67; background characteristics relation to, 147; brain physiology and, 144; capacities, 147–49, 155, 164, 174, 178; characteristics and factors overview, 141–42, 146; child’s death for adolescent parents and, 162–64, 177; complicated grief and, 146, 159–60, 163; COVID pandemic and, 145, 152, 161, 169; cultural norms and variations in, 144, 159, 167, 170, 176, 187, 188; cyberbullying role in, 142, 161, 181–82; death discussions and openness impacts for, 154–55; developmental stages and considerations in, 142–46; divorce or separation factors and impacts with, 156–57; friends death and, 147, 157–62, 170, 177, 186; identity

559

560

Index

adolescent loss and grief (continued ) construction and, 142, 143, 144–45, 147–48, 151, 155; independence obstacles and, 145–46; internet use and, 142, 155, 159–61, 176, 187; overview of factors and impacts, 141–42, 164; parental death factors and impacts for, 150–52; parent/family grief impacting, 148–49, 173–76; peer relationships importance relation to, 143, 149, 152, 155, 157, 161; racial/ethnic identity relation to, 142–43, 144, 147, 159, 162, 170, 186–87; resilience factors and components, 147–49, 155; school shootings and, 158, 159–60, 168, 184–85; sexual orientation/ gender identity and, 74–75, 143, 149–50; sibling death factors and impacts for, 148, 152–55; substance abuse and, 146, 148, 156, 160, 179; suicide and, 74–75, 150, 158, 160–62; unexpected/off-time loss role in, 143, 150, 152, 159, 168, 183–86 adoption: ambiguous loss with, 108, 139, 233; birthparents, grief of, 105–7, 197–98, 202; childhood grief interventions around, 138–39; childhood loss and grief around, 105–8, 139; of children with disabilities, 198, 202–3; developmental stage relation to impacts of, 106–7, 108; honesty and communication about, 105, 106–7; open or closed, grief factors around, 105, 106, 197, 232–33; regret with, 196–98, 229; self-blame around, 107, 197; stigma around, 198; young adult grief interventions around, 232–33; young adult loss and grief around relinquishing child to, 196–99, 202–3 African Americans: adolescent grief interventions and, 186, 187; adolescent loss and grief factors for, 159, 162, 170, 177; caregiving older adults approach for, 269; childhood

grief intervention considerations for, 126, 128, 136; continuing bonds with deceased for, 63; death rates for males midlife adults, 246; foster care impacts for, 110; friends death by homicide for adolescent, 159, 170; older adult grief interventions considerations for, 323, 333; play therapy considerations for, 126, 128; police brutality and grief for, 3, 6, 7, 73–74, 77, 240–41; prenatal and perinatal death for, 162, 177, 230; rituals role in grief process for, 35, 74; sibling death in childhood and spiritual beliefs, 103. See also racism and racial inequalities after-death contact, xvi, 34–35, 62–63 age. See life stage, developmental; specific life stages AIDS/HIV death, 204, 207, 247, 311, 314 alcohol abuse. See substance abuse Alzheimer’s disease. See dementia/ Alzheimer’s disease ambiguous loss: with adoption, 108, 139, 233; characteristics and examples of, 54–55; childhood, 92, 108, 109–10, 138–39; children with disabilities and parental, 3–4, 201; dementia/ Alzheimer’s and, 54–55, 268, 312; disenfranchised grief relation to, 54–55; family members addressing, 83; for foster children, 109–10, 138; immigrants experiences of, 54, 212; with prenatal and perinatal death, 229; sexual assault survivors and, 211; sexual orientation/gender identity factors in, 54, 75, 83; with unresolved accidents and death, 54 anger and rage: with adolescent loss and grief, 89, 146, 165–67; child’s death and, xii–xiii, 45; cultural norms around, 5, 17, 33; with disenfranchised grief, 53; in grief process models, 38, 41–42, 45; grief work theories and, 23, 25;

Index middle childhood grief expression through, 88, 97; obsessive rumination increasing, 45; outlets for, xi, 42, 49; around physical disabilities, 9; secondary emotions impeding expressions of, 19, 91 animals. See pets/animals anticipated losses: childhood grief with unexpected compared with, 99, 113, 114; meaning-making with unexpected compared to, 75; older adults grief relation to, 71, 303, 305, 311, 340–42; parental death for midlife adult and, 269, 271; parental death in childhood relation to, 99 anticipatory grief, xiii; for caregivers, 55, 268, 287, 292, 311, 338, 340–42; characteristics and examples of, 55; guided imagery methods for, 342; interventions around, 287–88; older adult grief interventions around, 340–42; for parents of children with life-threatening illness or disability, 287; spouse/life partner death for older adult and, 303, 305, 311 art and drawing: in adolescent grief interventions, 167, 184; in childhood grief interventions, 125–26, 127, 133, 138; in midlife adult grief interventions, 281 Asian cultures, 7; adolescent developmental considerations in, 144; collectivistic nature of, 79–80, 144; elder care in, 268, 300; elders resilience in, 302; rituals and memorials around death for, 35, 222, 224; variation within, awareness of, 12, 36. See also Chinese culture; Japanese culture; Korean culture attachment bond: in childhood loss and grief, 90, 91; parent-child, about, 23–24, 248; in positive and negative relationships alike, 23–24; postmodern social constructionist view of, 28; redefining, with deceased, 30–31, 61–62; stories and memories

561

aiding in continuing, 62. See also deceased, continuing bond with attachment theory, 23–24, 91, 277 avoidance/denial, xv; childhood loss and grief, 92, 93; grieving and theories on, 25, 28, 32, 39, 41, 43–46, 44; midlife adults loss and grief, 265; older adults loss and grief, 309, 328–29; young adults loss and grief, 197, 209 Balinese, mourning 33, 34 bereavement, definition of, 20 bereavement leave, ix, 33, 53, 256, 309 bereavement overload, 44, 310 Black and Brown populations: caregiving older relatives in, 269; childhood loss and grief factors for, 90; COVID impacts for, 2, 3, 12–13, 136; foster care prevalence in, 110; health risks for, 13; historical context for grief and trauma of, 7, 13, 36, 84–85, 274; multigenerational legacies of loss for, 7; police brutality and grief for, 3, 6, 7, 73–74, 77, 85, 90, 213, 240–41. See also racism and racial inequalities; specific populations Black Lives Matter movement, 6, 12, 187, 240–41 blame, self. See guilt and self-blame body, deceased. See deceased, body of Boss, Pauline, 4, 54, 233 Bowlby, John, 23–25, 39, 91 brain injury/brain-dead, 53, 54–55, 203–4 Buddhists, mourning 34, 63, 163, 222, 224 capacities: adolescent loss and grief, 147–49, 155, 164, 174, 178; childhood loss and grief, 89–91, 99, 113, 114, 116, 131; community, about, 75, 80, 84–85, 91; concept and measurement of, 76; cultural, about, 79–81, 84, 90; family system, 82–83, 90, 111; midlife adult loss and grief, 245–46, 251, 258, 264–65, 272, 274,

562

Index

capacities (continued ) 286, 289–90; older adults loss and grief, 301–2, 304, 315, 316, 319, 320, 321, 325, 326, 339, 340; personal, about, 76–79, 90; social and environmental, about, 81–82, 90; spiritual/religious, about, 76–77, 286; young adult loss and grief, 191, 192–93, 198, 211, 213, 216, 224–25, 241 caregiving/caregivers, xviii; of adult child with mental illness, 265–66, 291–92; anticipatory grief for, 55, 268, 287, 292, 311, 338, 340–42; cultural norms and variations around, 269, 314; disenfranchised grief with, 269, 313; of grandchildren as older adult, 314–15; grief interventions/ support groups, 338–39; grief inventory, 337–38; life-threatening illness and, 292–94; midlife adult loss and grief around, 265–69, 287–88, 292–94, 296–97; by older adults, loss and grief around, 311–15; of older adults, loss and grief around, 266–69, 296–97, 340–42; of parents, 296–97; of partner as older adult, 312–13 catastrophes/natural disasters: airplane crashes, 6, 54, 84; best practices for responding to, 185–86; childhood grief interventions around, 135, 136–37; community role in resilience after, 84, 136; hurricanes and tsunamis loss and grief, 6, 7, 54, 72, 77; society as whole impacted by, 6, 7; types of grief around, 54, 56. See also traumatic loss and grief childbirth, death before/after. See perinatal and prenatal death and loss childhood grief interventions: for abuse, 137–38; adoption and foster care, 138–39; animals as therapy in, 129; assessments for, 113, 114, 115–16, 131; books about death for, 117–20; capacities, 113, 114, 116, 131; catastrophes/ natural disasters and, 135, 136–37;

communication and therapeutic goals in, 125; community-level, 136–37; complicated and traumatic grief factors in, 112–13, 115, 120, 125, 130, 135, 136; for COVID losses, 134, 136–37, 140; cultural norms and variations considerations in, 113, 114, 115, 126, 128, 130, 131, 133, 136, 140; death incident told to child and, 120–21; deathrelated factors in assessment of, 113, 114, 115; developmental stage considerations in, 114, 115, 117, 123, 125, 127; for divorce or separation, 113, 124, 129, 130, 133; drawing and art activities in, 125–26, 127, 133, 138; family-based, 121–23, 131–33; group-based, 128–31, 136–37, 138; homicide and, 126, 135–36; music and music therapy in, 124, 128, 129, 131; overview and factors of, 112–13, 140; parents grief consideration in, 128–29, 131–32; pets/animal death and, 116, 117, 118–19, 125, 134–35; play and play therapy in, 125–28, 137–38, 139; racial/ethnic identity considerations in, 126, 128, 130, 133, 136; rituals as, 121–24, 125, 129, 134– 35; school-based, 133–34; storytelling in, 123, 129, 136; support groups for, 113, 128–31, 136–37; symptoms for initiating, 112–13; triggers of grief awareness role in, 124–25 childhood loss and grief: adoption and, 105–8, 139; ambiguous loss factor in, 92, 108, 109–10, 138–39; attachment bonds and, 90, 91; avoidance in, 92, 93; background characteristics relation to, 90, 99; books about death for, 117–20; capacities around, 89–91, 99, 113, 114, 116, 131; community factors in, 91, 100, 111; COVID pandemic and, 92, 95, 101, 111, 134, 136–37, 140; death discussions and education importance for, xv, xvi–xvii, 100, 116–21, 122–23; developmental stages

Index and experience in, 24–25, 86–89, 95–98, 125; with divorce or separation, 103–5; family system factors and considerations in, 99–100, 113, 114, 115, 128–29, 131–34; foster care and, 108–10, 111, 138–39; friend’s death and, 117–18, 119, 135; grandparent’s death and, xi, 118, 119, 121, 123; grief unresolved relation to developmental stage and, 24–25, 87; homicide and, 126, 135–36; for immigrants and refugees, 54, 90, 92, 110–11; infants experience of, 87, 96; late childhood experience of, 89, 97–98; metaphors, inappropriate use of, 120; middle childhood experience of, 88, 96–97; mother separation and, 91; Piaget final stage experience of, 89; preschoolers experience of, 88, 96; PTSD and, 91–92, 93, 113, 115; regrieving factor in, 87, 90, 102, 125; religion and spirituality impact for, 103, 128; reminiscing and, 92, 98; resilience and, 89–91, 94–95, 98–101; rituals role in, 98, 100–101, 102, 115, 121–24, 125; secure attachments to parents relation to, 24; separation anxiety with, 23, 87, 91, 96, 97, 135; sibling death and, 88, 102–3, 117–18, 119; traumatic, 91–93, 135; triggers awareness around, 124–25; unexpected/off-time loss role in, 92, 99, 113, 114. See also parental death (in childhood) children with disabilities. See disabilities, parents of children with child’s death: from accidents, xii–xiii, 47, 48, 60, 62–63, 101, 204, 250, 253–54, 255, 258–59, 288–89; activism or advocacy focus after, 258; adolescent parent’s loss and grief around, 162–64, 177; anger around, xii–xiii, 45; complicated grief around, 56, 59; cultural norms and variations around, 34, 195; “death of self” feeling with, 249; DPM applied with, 44; exclusion

563

from normal living response to, 251–56; family system impacts and differences around, 83, 221, 254–56, 261; gender differences in grief about, xv, 70–71, 247, 262–63, 289; grief interventions for, 288–89; grief ongoing after, 248–49; grieving styles around, 251–60; guilt after, 19, 48, 221, 249–50; health issues around, 47, 247; internalization of deceased after, 258–59; “keeping busy” focus as response to, 256–57; lives shattered by, xi–xiii, 254, 257; meaning-making after, xii–xiii, 250–51, 255, 257–60; for midlife adults, 246–63, 288–89; off-time nature of, impacts, 247–48; older adult as caregivers after, 314– 15; parents continuing bond with deceased after, 23–24, 62–63, 258–60; personal reconstruction response to, 260; posttraumatic growth after, 250–51, 260; preoccupation with, 253–55, 257; religion and spirituality and, 251, 253, 259, 260; reminiscing about, 49; silence after, xv, 252; social distancing after, 252–53; spouse/ partner death compared with, 246–47; spouse/partner relationship impacted by, xv, 71, 261–63; support groups for grief around, 28, 42, 218, 257–60, 288, 289; surviving children grief disregard after, 254–55. See also perinatal and prenatal death and loss Chinese culture, mourning, 35, 60, 63, 195, 309 Christian rituals, mourning, 222, 225 chronic sorrow: in adoption, 202; characteristics and examples, 55–56; of caregivers of persons with dementia, 313; of foster children, 109; of immigrants, 212; of older caregivers, 312; of parents of adult child with mental illness, 55, 265–66; of parents of children with disabilities, 9, 55, 200–201, 202–3; of young adults with disabilities, 203–4.

564

Index

collectivism, 77, 79–80, 144, 286–87 community factors: childhood grief interventions and, 136–37; in childhood grief process, 91, 100, 111; disenfranchised grief and, 53; grief counseling consideration of, 286, 287; homicide/police brutality and, 85, 187; LGBTQ resilience and, 75; in multigenerational trauma resilience, 84–85; in resilience, 75, 80, 84–85, 91, 136; sexual assault survivor grief and, 211; for young adult widows/widowers, 239 community violence, 68, 74, 111, 159, 186–87 Compassionate Friends, 28, 42, 218, 257 compassion fatigue, 346–47 complicated grief: abuse survivors and, 210; adolescent loss and, 146, 159–60, 163; childhood interventions and, 112–13, 115, 120, 125, 130, 135, 136; with child’s death, 56, 59; with COVID pandemic loss, 56, 57, 61, 340–41; gender differences around, 69; guided mourning therapy for, 328–29, 342; health issues and risks, 58, 59; loss types precipitating, 56; midlife adult grief interventions and, 273–74; for older adults, 301–2, 328–29, 340–41, 342; pathological grief term replaced by, 12, 20; PCBD and, 56, 57–59; PTSD relation to, 56; substance abuse as symptom of, 58, 59, 273; suicide survivor’s risk for, 177, 183; symptoms and factors of, 56, 57–59, 58, 273–74; young adult grief interventions and, 216 Corr, Charles, 4, 26, 39, 149 Corr, Donna, 4, 26 counselors. See grief counseling; health and human service professionals COVID pandemic, 294; adolescent loss and grief during, 145, 152, 161, 169; adolescent suicide and, 161; ambiguous loss and, 54; anticipatory grief during, 55; for Black and

Brown populations, 2, 3, 12–13, 136; childhood loss and grief around, 92, 95, 101, 111, 134, 136–37, 140; complicated grief around loss in, 56, 57, 61, 340–41; disenfranchised grief and, 53; grief interventions during, 82, 134, 136–37, 140, 169, 321, 337, 338, 340–41; guilt and self-blame around deaths during, 340; midlife adult loss and grief during, 244, 275; multiple losses for children in, 134, 136–37, 140; older adults loss and grief during, 72, 298, 299, 300, 302, 304, 305–6, 318, 320, 321, 337, 338, 340–41; online resources during, 82, 136–37, 241; social distancing impact on loss and grief in, 2, 101, 169, 193, 307, 340–41; support groups during, 82, 136–37; traumatic loss and grief around, 61, 305; unexpected/off-time losses with, 57, 61, 92; young adult loss and grief and, 192, 193, 213–14 crying, 5, 33–36, 46–47, 69–70 cultural competency, critique of, 12 cultural norms and variations: adolescent developmental stages relation to, 142–44; adolescent grief interventions awareness of, 167, 170, 176, 187, 188; in adolescent loss and grief, 144, 159, 167, 170, 176, 187, 188; anger/ rage and, 5, 17, 33; with caregiving/ caregivers, 269, 314; childhood grief intervention considerations of, 113, 114, 115, 126, 128, 130, 131, 133, 136, 140; childhood parental loss and, 100–101; child’s death and, 34, 195; of collectivism and grief experience, 77, 79–80, 144, 286–87; continuing bonds with deceased and, 34–35, 63–64, 81, 309; crosscultural assessment format for understanding, 224–28; deceased body beliefs and treatment relation to, 35, 47, 81, 122–23, 220, 226–27, 274; dying process, 274; elders’

Index developmental considerations and, 300; on emotional expression, 5, 17, 33, 34, 35–36, 46, 47; family therapy considerations of, 132, 133; grief counseling consideration of, 285–87; grief expression relation to, 5, 12, 17, 25–26, 30, 31, 32–37, 46, 47, 60, 79–80; grief-related language and, 33; grief theories and, 17, 32–37; of individualism and grief experience, 66, 77–78, 79–80, 84; intragroup differences relation to, 12, 36–37; meaning-making impacted by, 33; midlife adult grief intervention assessments relation to, 274; older adult grief interventions consideration of, 325, 331, 333, 337, 339, 342, 343; older adults loss and grief relation to, 268, 300, 302; pain and suffering beliefs and, 33, 80–81; parents of children with disabilities and, 234; perinatal and prenatal loss relation to, 162, 163, 177, 195, 230; play therapy consideration of, 126; postmodern social constructionism on “normal/abnormal” grief relation to, 19, 20, 27; resilience relation to, 73–74, 79–81, 84, 192, 302; rituals/ memorials relation to, 34–35, 80, 81, 222, 224, 225–28; stage-based models bias and, 39; tasks model disregard for, 41; young adult grief interventions considerations of, 220, 222, 224, 225–28; young adult loss and grief relation to, 193, 220, 222, 224, 225–28. See also immigrants and refugees; racial/ethnic identity; religion and spirituality; specific cultures cyberbullying, 142, 161, 181–82 death. See specific topics death discussions and education: adolescent loss and grief impacted by, 154–55; books for children and parents on, 117–20; for children,

565

xv, xvi–xvii, 100, 116–21, 122–23; in hospice or end-of-life care, xviii, 11; pets death aiding, for children, 116, 117, 118–19, 125; school-based, in adolescent grief interventions, 168; storytelling role in, 83 death of self, 4, 16, 58, 249 deceased, body of: cultural beliefs and rituals around, 35, 47, 81, 122–23, 220, 226–27, 274; discovery/ nonrecovery of, grief relation to, 40, 47, 60, 101, 262, 278, 290; stillbirth, viewing, 231 deceased, continuing bond with: balanced approach to, 32, 49, 50; child’s death and parents, 23–24, 62–63, 258–60; cultural variations around, 30–31, 34–35, 63–64, 81, 309; grief process and, about, 61–64; midlife adult grief interventions and, 279; “moving on” conflict with “not forgetting” and, 8; balancing past and present relationships, 24, 50; older adult spouse/partner loss and, 309; parental loss in childhood and, 98, 101–2; religion/spirituality factors in, 34–35, 63–64, 81; sibling death in adolescence and, 155; storytelling and memories role in, 62; tasksbased model on, 40, 279 deceased, prior relationship with: Bowlby on attachment to, 23; negative, grief factors in, 4–5, 68, 73, 91, 95, 270; parental death in childhood grief relation to, 91, 95; resilience relation to, 68, 73 deceased persons: after-death contact with, xvi, 34–35, 62–63; attachment bonds to, Bowlby on, 23–24; detaching from, Freud on, 20–21; detaching from, Lindemann on, 22; Parkes on withdrawing focus on, 40–41; preoccupation with, 21, 25, 40–41, 45, 56, 57, 58, 58, 59, 253–55, 257, 325, 346

566

Index

dementia/Alzheimer’s disease: ambiguous loss around, 54–55, 268, 312; chronic sorrow, 313; disenfranchised grief and, 54–55; midlife adult caregivers of relatives with, 268–69, 296; multiple losses with, 337; older adult caring for partner with, 312–13; older adults diagnosis of, grief around, 316 denial. See avoidance/denial deportation. See immigrants and refugees depression: childhood interventions need with prolonged, 112; differentiating grief and depression, 25–26; identification and treatment of, 167, 336–37; with nonnormative compared with expected losses, 26; older adult grief interventions assessment of, 325–26; older adult spouse/partner death and, 304, 305; regret associated with grief relation to, 26; rumination relation to, 25 developmental stage of life. See life stage, developmental Diagnostic and Statistical Manual of Mental Disorders (DSM), 56–57, 116, 167 disabilities, parents of children with: adoption of, 198, 202–3; ambiguous loss for, 3–4, 201; anticipatory grief for, 287; chronic sorrow for, 9, 55, 200–201, 202–3; cultural norms and variations around, 234; midlife adult grief interventions for, 287–88; online resources for, 234, 235; posttraumatic growth for, 9, 201–2; unexpected/off-time loss associated with, 8–9; young adult, 8–9, 199–203, 233–34, 235 disabilities and chronic illness: 9; anticipatory grief around, 55; brain injury/brain-dead loss and grief around, 53, 54–55, 203–4; grief interventions around caregiving for life-threatening, 292–94; midlife

adult caregiver of relatives with, 267–68, 292–94; older adults loss and grief around, 315–16, 341; racial identity relation to grief and, 74; spouse/partner death from, for young adult, 205; young adult-onset, loss and grief around, 203–4 disenfranchised grief: ambiguous loss relation to, 54–55; brain injury/ brain-dead losses and, 53, 54–55; with caregiving, 269, 313; for older adults losses and, 311, 318; for parents of adult child with mental illness, 265; with perinatal and prenatal death, 217–18; police brutality and, 213, 241; sexual assault survivors and, 210, 211; sexual orientation/gender identity and, 53, 207, 222, 308–9; with sibling death for older adults, 310–11; social exclusion of bereaved persons and, 53–54; support groups enfranchising, 217–18; young adult, 217–18 divorce or separation (for midlife adult): after child’s death, 261–62, 263; death of partner compared with, 73gender factors in, 263; grief interventions for, 290–91; loss and grief factors with, 263–65; statistics, 263 divorce or separation (for young adults): parental, navigation of, 191–92; personal, loss and grief factors with, 208 divorce or separation (in adolescence): grief interventions around, 176–77; loss and grief factors, 156–57 divorce or separation (in childhood): developmental stage relation to impacts of, 103; family capacities, importance of, 104; grief interventions around, 113, 124, 129, 130, 133; loyalties and division impacts with, 104–5; rituals around, 124; self-blame for, 104 Doka, Kenneth, 19, 292–93, 294, 331–32 Dougy Center, 134, 169, 170

Index DPM. See dual process model drawing. See art and drawing dreams (in sleep): deceased or dying contact during, xvi, 62–63; about deceased persons, 49–50 dreams (life goals): caregiving by older adults and loss of, 311–12, 314; nondeath-related loss of, 8–9 drug abuse. See substance abuse DSM. See Diagnostic and Statistical Manual of Mental Disorders dual process model (DPM), benefits of 32, 43–44,69, 98, 206, 256; gender differences 44, 69 dying process: cultural norms and variations around, 274; discomfort with, xviii; five stages of dying model and, 38; life-threatening illness and caregiver grief around, 292–94; traumatic loss with experiencing, 59 economic inequalities. See socioeconomic status Egyptians, mourning, 34 elders. See older adults emotional expression: adolescent brain physiology role in, 144; adolescent grief interventions focus around, 165–67, 169–70, 171, 172–73, 174–75, 184; with adolescent loss and grief, 144, 146, 165–66; childhood grief interventions around, 121, 124–26, 129–30, 133, 135; crying/ weeping as, 5, 33–36, 46–47, 69–70; cultural norms and variations on, 5, 17, 33, 34, 35–36, 46, 47; gender differences in, 69–70, 262, 308, 331–32; grief counseling techniques for facilitating, 280–85; grief resolution relation to, 28; older adults in group work and, 331; pain of separation experience and, 46–49; parental loss in adolescence and, 151; secondary, with grief, 19, 91; social functional approach to, 27–28; stigma with, 5, 46; suppression, grief theories on, 19,

567

39; unexpected/off-time losses and, 282–83. See also specific emotions empowerment strategies, 44, 74, 187, 293–94, 347 end-of-life care, xvii, 218; education for workers in, xviii, 11; hospice bereavement services, 341; midlife adult caregiver grief interventions for, 287–88, 292–94; older adult grief interventions considerations of, 340–42; play therapy and, 126; telehealth during COVID for, 241 Erikson, Erik, 142–43, 191, 244, 300, 323 evidence-informed/based interventions: accelerated recovery program, 347; in adolescence, 181, 184; with children, 140; for depression, 167, 336; of grief work, 17–18, 37; limitations of, 14, 140, 181; with midlife adults, 274; with older adults, 327; for professional self-care, 347, 351; as theme of book, 11, 14; for trauma, 229; for writing/journaling, 282-283; with young adults, still birth, 231 family system: adolescent loss and grief relation to, 148–49, 173–76; ambiguous loss negotiation within, 83; capacities and resilience, about, 82–83, 90, 111; caregivers of partners with dementia impact on, 313; childhood loss and grief relation to, 99–100, 113, 114, 115, 128–29, 131, 133–34; child’s death impacts to, 83, 221, 254–56, 261; foster youth ambiguous relationship within, 109; genogram tool for understanding, 220, 326, 333; roles impacted by loss, 83 family therapy and family-based interventions: adolescent grief and, 174; childhood grief intervention and, 121–23, 131–33; cultural considerations in, 132, 133; for suicide survivors, 290; young adult grief and, 215, 220–21

568

Index

Filipino culture, mourning 33, 34, 47, 195 foster care: childhood grief interventions around, 138–39; childhood loss and grief around, 108–10, 111, 138–39; foster parents grief around, 198–99; racial/ethnic identity relation to impacts of, 110, 111; saying goodbye and trauma around, 108–9 Freud, Sigmund, 20–21, 22, 25, 65, 87 friends death (for older adults), 311 friends death (in adolescence): gender factors around, 159; guilt and selfblame with, 160, 161–62; homiciderelated, 158–59, 170; police brutality role in, 158, 159, 186; PTSD around, 159, 170; racial/ethnic identity and likelihood of, 147, 159; rituals around, 160; school shootings and, 158, 159–60; statistics around, 157; by substance abuse, 160; by suicide, 161–62, 177 friends death (in childhood): books about, 117–18, 119; homicide and, 135 funerals. See rituals and memorials gender: adolescent grief interventions relation to, 172–73, 174; adolescent loss and grief relation to, 147–48, 159; child’s death grief relation to, xv, 70–71, 247, 262–63, 289; complicated grief relation to, 69; developmental stages relation to, 142; DPM on grief differences relation to, 44, 69; emotional expression variations across, 69–70, 262, 308, 331–32; friends death in adolescence relation to, 159; grieving and coping styles relation to, 70–71; midlife adult loss and grief relation to, 245, 246, 262, 270–71, 289; older adult friends death impacts relation to, 311; older adult grief relation to, 72, 303–4, 306–7, 308, 311, 331–32; older

relative care by midlife adults and, 267; parental death in childhood and, 99; parental loss for midlife adults relation to, 270–71; posttraumatic growth differences around, 70, 71, 72; resilience relation to, 69–73, 74–75; spouse/life partner death impacts relation to, 70, 72–73, 206, 303–4, 306–7, 308; support groups and, 218, 331; task-based models relation to, 69, 70, 71. See also sexual orientation/gender identity genograms, 220, 326, 333 goodbye, saying: ambiguous loss with lack of, 54; chronic sorrow and, 55–56; foster care grief around lack of, 108–9; rituals/funerals role in, 101, 123; traumatic loss and lack of, 60, 61, 108–9 grandparent caregivers, 311–15; loss of dreams, 314; nonnormative nature, 315 grandparents death; books for children about, 118, 119; communication clarity around, 121; rituals around, 123 grief: bereavement contrasted with, 20; complexity of, 11, 17; cultural norms and variations relation to, 17, 32–37; defining, 4, 18–19, 20; delayed, 21–22, 25, 42, 47, 122, 163, 209; distress levels in response to, 25–26; exhausting nature of, 23; healthy, variations in opinions on, 11–12; impacts of, overview, 18–19; individual/unique nature of, 5, 11, 12, 17, 19, 20, 28, 31, 275, 279–80; intragroup differences around, 36–37; language around, cultural variations of, 33; loss not preceding, 19; loss preceding, 2; magnitude of, factors in, 5–6; mourning definition relation to, 20; pervasiveness and nature of, 4–7; universality of, 17; unresolved grief, definition, 24, with traumatized child, 91, with

Index foster youth, 109. See also specific topics grief work theories: on anger and rage expressions, 23, 25; attachment theory and, 23–24, 91, 277; on avoidance/denial, 25, 28, 32, 39, 41, 43–46, 44; Bowlby, 23–25, 39, 91; classical psychoanalytic, 20–25; compulsive and confrontational strategies of, 25, 26–27, 28, 31; emotional suppression and, 19, 39; evidence-informed interventions and, 14, 17–18, 37; Freud, 20–21, 22, 25, 65, 87; limitations with terms/definitions in, 20; Lindemann on, 21–22, 24–25, 65; overview, 17–18, 37; Parkes, 17, 22, 40–41; on pathological grief, 20, 22, 24–25, 30; postmodern critiques of, 25–27; postmodern social constructionist view of, 19, 20, 27, 28–37, 68; preoccupation with deceased persons as criticism of, 25; reconciliation of conflicting, 31–32; social functional approach in, 21, 27–28; stage-based models, 38–39; support groups and, 28, 30. See also task-based models grief counseling: adolescent grief interventions with, 165, 172; cultural considerations with, 285–87; grief therapy contrasted with, 14, 275; homework assignments in, 285; meaning-making for midlife adults in, 277, 278–79, 282; metaphor use in, for older men, 332; metaphor use in, for midlife adult, 282–84; midlife adult grief interventions with, 275–87; narratives and storytelling for midlife, 281, 282–83; in older adult grief interventions, 327–29, 332; recommendations and goals for counselors in, 276–77; religion and spirituality considerations in, 286, 287; task-based model of, 277–80; techniques, 280–85; young adult grief interventions with, 216, 230,

569

234, 239. See also health and human service professionals grief resolution or recovery: childhood development relation to, 24–25, 87; emotional sharing role in, x, 28; meaning-making role in, 27–28, 29–30; social functional approach to, 21, 27–28; terminology around, 42 grief therapy, definition, 14, 327 grief types. See ambiguous loss; anticipatory grief; chronic sorrow; complicated grief; disenfranchised grief grieving and mourning process: accommodation in, 25, 42, 50; active, 20, 21, 31, 33, 39–40, 41, 50–51, 349; activism and advocacy role taken during, 42, 241, 258, 266; anger and rage in models of, 38, 41–42, 45; avoidance/denial in, 25, 28, 32, 39, 41, 43–46, 44; breath holding and, 46–47; of children, dismissing, 87; with child’s death, different styles/forms of, 251–60; collectivism and, 77, 79–80, 144, 286–87; confrontation phase in, 41–42; continuing and cyclical nature, 22–23, 27, 41, 42, 46, 248–49, 259–60; “crazy” feeling or acting with, xiii, 41, 45, 170, 257; cultural norms and variations of, 5, 12, 17, 25–26, 30, 31, 32–37, 46, 47, 60, 79–80; definitions of, 20; as disabling condition, theories on, 21–22; DPM of, 32, 43, 44; in dreams (sleeping), 49–50; duration, theories and debates on, 5, 20–21, 22, 27, 37; future loss impacted by handling of, 6; gender differences in, overview, 70–71; generational and multigenerational factors in, 7, 36, 67–68, 80, 82–85; “get over it” and “be strong” advice around, xi, 5, 27, 33; guided mourning therapy for older adults, 328–29, 342; individualism and, 66, 77–78, 79–80, 84; individual/unique

570

Index

grieving and mourning process (continued ) nature of, 5, 11, 12, 17, 19, 20, 27, 28, 31, 275, 279–80; integration in, xi, 42–44, 44, 50–51; internal nature of, 5, 20, 21, 24, 33; Lewis on, 38, 45, 46; linear approach to, criticisms of, 39, 41; Rando phases and steps of, 41–42, 44, 222–24, 342; reacting/ experiencing/expressing pain of separation in, 46–49; readjusting and reinvesting phase in, 50–51; recognizing and accepting reality of loss in, 45–46; religion and spirituality relation to, 17, 30, 31, 32–37; relinquishing old attachments role in, 50; reminiscing role in, overview, 49–50; restoration and loss orientation balance for, 32, 43–44, 44, 256, 309; six Rs of, 44–51; stagebased models of, 38–41; terminology around, 42; time not allowed/ taken for, xii, xvi, 7, 279; variation across types of loss, 3; well-being components in, 85. See also deceased, continuing bond with; rituals and memorials; task-based models; specific topics growth, posttraumatic. See posttraumatic growth guided mourning therapy, 328–29, 342 guilt and self-blame: with abuse and sexual assault survivors, 211; with adolescent friends death, 160, 161– 62; adoption and child, 107; adoption and parental, 197; for caregivers of partners with dementia, 313; with childhood parental loss, 95; with child’s death, 19, 48, 221, 249–50; COVID deaths and, 340; for divorce or separation of parents in childhood, 104; HIV/AIDS deaths and survivor, 207; illegitimate, 48–49; moral, 48; regret relation to, 48, 160; around suicide, 47, 250; SUID and parental, 196, 232; survivor, 48–49, 76, 174, 207, 254; with unexpected and

traumatic loss, 47, 60; unexpected/ off-time losses and, 47; with young adult prenatal and perinatal loss, 194 health and human service professionals: boundary setting and keeping for, 345, 348; burnout for, 349; compassion fatigue for, 346–47; gifts and challenges of working with bereaved for, 344–49; griefrelated beliefs impacting support of bereaved, 28; personal stories and experience of loss and grief for, ix– xiv, 1–2, 15, 349–50; posttraumatic growth-type benefits of, 344–45; preparation for working with bereaved, importance, ix, xi, xiv–xv, xviii, 10–11; racism and implicit biases assessed and addressed by, 13, 344, 349, 353; rituals for bereaved children initiated by, 123–24; self-awareness and self-reflection importance for, 10–11, 349, 350; selfcare types and strategies for, 350–53; vicarious traumatization experience and protections for, 347–48 health issues and risks: Black and Brown populations, 13; child’s death and grief-related, 47, 247; complicated grief, 58, 59;grandparent caregivers, health outcomes, 31; older adults loss age-associated changes, 298, 299, 315–16; preoccupation with deceased and, 40–41; prolonged grief and, 21–22; after sibling death for adolescents, 153, 155; after spouse/ life partner death of older adult, 302, 303–4; summary of grief-related, 18; telehealth during COVID for, 241; widowhood, 72, 302, 303–4; with young adult loss and grief, 72. See also disabilities and chronic illness; mental illness; somatic/ psychosomatic problems historical context, 11, 18; for Black and Brown populations grief, 7,

Index 13, 36, 84–85, 274; for older adult loss and grief, 72–73, 322–23, 324; widowhood grief experience and, 72 HIV/AIDS death, 204, 207, 247, 311, 314 Hmong, mourning, 12, 34, 274. Holocaust survivors, trauma 80, 82, 324 home loss, 15; ambiguous loss with, 54; interventions with older adults, 330, 340; older adults relocation and, 318, 339–40; with retirement, 318; secondary losses with, 9. See also immigrants and refugees homicide, 278; adolescent grief interventions and, 186–87; adolescents experience of, statistics, 158, 186–87; childhood loss and grief around, 126, 135–36; community resilience around, 85; complicated grief around, 59; depression around loss from, 26; gender differences in grieving, 70–71; parental, in childhood, 135–36; professionals personal experience of, impacting care given, 349–50; traumatic loss and grief around, 60; youth, rates, 158–59 homophobia, 16, 32, 82, 207–8, 274, 299, 308–9, 323 hospice. See end-of-life care human service professionals. See health and human service professionals identity. See self-identity; sexual orientation/gender identity illness. See disabilities and chronic illness; health issues and risks; mental illness; somatic/psychosomatic problems immigrants and refugees: ambiguous losses for, 54, 212; childhood loss and grief experience for, 54, 90, 92, 110– 11; chronic sorrow, 212; community factor for resilience of, 84; grief interventions for, 239–40, 274; parents death in country of origin and grief for, 212; prolonged grief

571

for, 36; young adult intervention considerations, 240; young adult loss and grief for, 211–12, 239–40 individualism, 66, 77–78, 79–80, 84, 286 Indonesian culture, mourning 33, 63 integration (in grief process), xi, 42–44, 44, 50–51 internet-based support. See online grief support and interventions internet use (by adolescents), 142, 155, 159–61, 176, 187. See also cyberbullying internet use (by young adults), 235. interpreters, 220, 225, 227–28, 274 interventions. See specific life stages and loss types Japanese culture, mourning 35, 80, 163 Jewish culture, mourning 63–64, 81, 128, 222 journaling, 49, 281, 282–83, 338 Klass, Dennis, 22, 26, 61 Korean culture, mourning 35 Kübler-Ross, Elisabeth, 38–39 Latinx: adolescent loss and grief factors for, 144, 159, 170, 187; caregiving of elders for, 269; Day of the Dead, The, 35, 80; intragroup variations, 36; rituals and memorials, 34–35, 80 Levinson, Daniel, 191, 206, 244 Lewis, C. S., 38, 45, 46 LGBTQ. See sexual orientation/gender identity life course, difference from life span, 13; grief across, xiv, 13–14, 73 life partner. See divorce or separation; spouse/life partner death life significance. See meaning-making life stage, developmental: overview of loss and grief relation to, 13–14, 73; posttraumatic growth relation to, 61, 72; racism and racial inequalities impacts relation to, 14. See also specific life stages

572

Index

Lindbergh, Anne Morrow, 70–71 Lindemann, Erich, 21–22, 24–25, 65 Lindstrom, Torill, 31–32 loss: accepting reality of, 45–46; forever change with, xix, 2, 4, 6; grief not preceded by, 19; grief preceded by, 2; grief process aiding handling future, 6; grief variation across types of, 3; hierarchy of, fallacy, 5–6; impacts across all forms of, ix, xiv, xix, 2, 6, 7–9; life course perspective of, xiv, 13–14; multigenerational legacies of, 7, 36, 82–83; pervasiveness of, 2–4; relief with, 19; strengths gained through, xiv, 8; symbolic compared with physical, 3; universality of, ix, 1. See also specific topics loss/restoration orientations (DPM), 32, 43–44, 44, 256, 309 meaning-making: after child’s death, xii–xiii, 250–51, 255, 257–60; cultural values impact process of, 33; definitions of, 29; grief and loss as opportunity for deeper, 31–32; grief counseling facilitating midlife loss, 277, 278–79, 282; grief resolution and, 27–28, 29–30; Kessler on role of, 39; life-changing impacts of, 6, 8; narratives and storytelling role in, 6, 24, 30, 49, 282; for older adults loss and grief, 309–10, 317; older adult spouse/partner death and, 309–10; others role in, 6; PGD impacted by, 30; principles of, Neimeyer on, 29–30, 49; reminiscing role in, 49; Roethke on, after death, 8; stagebased models of grief process and, 39; spirituality/religion, 78–79, 99, 148, 193, 246; support groups aiding, 82, 257–60 medical examiner, xviii, 161–62, 232 memorials. See rituals and memorials men. See gender mental illness: chronic sorrow of parents of children with, 55, 265; grief

interventions for midlife parents of children with, 291–92; grief relation to, mixed evidence, 56–57; midlife adult parents grief around adult child with, 265–66, 291–92; parental death impact for midlife adults with, 290; stigma impacting caregivers grief, 266 midlife adult grief interventions: adult child with mental illness and, 291–92; assessment factors and tools, 273–75, 294–96; capacities factors for, 272, 274, 286, 289–90; for caregivers of loved ones with life-threatening illness, 287–88, 292–94; child’s sudden death and, 288–89; complicated grief and, 273–74; continuing bond with deceased in, 279; cultural norms and variations consideration in, 274; for divorce or separation, 290–91; drawing and art activities in, 281; for family caregivers of older parents, 296–97; grief counseling and therapy, 275–87; informal support networks role in, 272–73; narratives and storytelling role in, 274, 281, 282–83; overview and factors of, 272–73, 297; for parental death, 289–90; for parents of children with disabilities/ life-threatening illness, 287–88; reminiscing role in, 281, 285, 289, 295; rituals and memorials in, 271; spiritual assessment and, 294–96; for suicide survivors, 290; task-based grief model role in, 277–80 midlife adult loss and grief: adult child with mental illness impact for parents, 265–66, 291–92; capacities, 245–46, 251, 258, 264–65, 272, 274, 286, 289–90; caregivingrelated, 265–69, 292–94, 296–97; child’s death and, 246–63, 288–89; during COVID pandemic, 244, 275; developmental considerations around, 243–45; with divorce or

Index separation, 2, 9, 73, 263–65; friends death and, xii; gender and, 245, 246, 262, 270–71, 289; menopause and, 245; older relatives care and, 266–69, 296–97; overview and factors of, 243, 297; parental death and, xvi, 4, 269–71, 289–90; resilience factors, 245–46, 255–56, 286; substance abuse with, 273, 280; suicide rates and, 244, 290; traumatic, 246–51, 272–73, 276, 288, 297; with unexpected/off-time losses, xiii, xvi, 247–48, 264; widowhood and, 263, 265, 272, 278 mindfulness practices, 44, 128, 349, 351 miscarriage. See perinatal and prenatal death and loss mourning. See grieving and mourning murder. See homicide music and music therapy: in adolescent grief interventions, 170–71; in childhood grief interventions, 124, 128, 129, 131 Muslim culture, mourning, 35, 79, 128, 195, 222 narratives and storytelling: in adolescent grief interventions, 175, 177; in caregiver grief interventions, 338–39; in childhood grief interventions, 123, 129, 136; child’s death grief process and, 253; continuing bond with deceased and, 62; dreaming as form of grief, 49–50; family communication around death through, 83; journaling role and guidelines for grief, 49, 281, 282–83, 338; in meaning-making around loss, 6, 24, 30, 49, 282; in midlife adult grief interventions and, 274, 281, 282–83; older adult grief interventions and, 324, 327; police brutality loss and grief interventions role of, 241 Native Americans: community role in resilience of, 80; elders resilience,

573

302; elders treatment for, 300; emotional expression around grief for, 35, 36; historical trauma and loss for, 7, 36, 84–85, 274 natural disasters. See catastrophes/ natural disasters Neimeyer, Robert A., 29–30, 44, 49, 277 off-time loss. See unexpected/off-time loss older adult, caring for: anticipatory grief around, 55, 268, 340–42; Black and Brown populations response to, 269; midlife adult loss and grief around, 266–69, 296–97; self-care needs in, 268–69 older adult grief interventions: ageism challenges and approach in, 321; assessments for, 324–26; capacities factors for, 320, 321, 325, 326, 339, 340; cohort-specific challenges and considerations in, 322–23; communication challenges and guidelines for, 321–22; counseling and psychotherapy, 327–29, 332; during COVID pandemic, 321, 337, 338, 340–41; cultural norms and variations factors for, 325, 331, 333, 337, 339, 342, 343; depression assessment in, 325–26; end-of-life and anticipatory grief, 340–42; genograms tool for, 326, 333; grief resurgence awareness in, 323–24; guided mourning therapy, 328–29, 342; for men, considerations and guidelines, 331–32; narratives and storytelling in, 324, 327; overview and factors of, 320, 342–43; racial/ ethnic identity considerations in, 323, 333; religion and spirituality awareness and tools (FICA Assessment Tool) in, 333–34; relocation losses and, 339–40; reminiscence and life review in, 323, 326–27, 334, 340; resilience factors focus in, 320; retirement

574

Index

and, 339; for spouse/partner death, 326, 328–29, 334; substance abuse considerations in, 325–26, 332, 336; suicide assessment and prevention, 335–37; support groups and group work in, 328, 329–31, 334 older adults loss and grief: accumulation of loss, 72; anticipated loss factors for, 71, 303, 305, 311, 340–42; assumptions/misassumptions about, 72, 299–300; avoidance/denial role in, 309, 328–29; capacities, 301–2, 304, 315, 316, 319, 320, 321, 325, 326, 339, 340; caregiver role impact for, 311–15; chronic illness and pain factors in, 315–16, 341; complicated grief and, 301–2, 328–29, 340–41, 342; during COVID pandemic, 72, 298, 299, 300, 302, 304, 305–6, 318, 320, 321, 337, 338, 340–41; cultural norms and variations around, 268, 300, 302; cumulative loss role and impacts on, 10, 13, 298, 299, 311, 320; dating in widowhood and, 43–44, 306–7; dementia/Alzheimer’s disease factor in, 312–13, 316, 337; developmental considerations with, 298–300, 323; disenfranchised grief for, 311, 318; friends death factors and impacts, 311; gender differences around, 72, 303–4, 306–7, 308, 311, 331–32; for grandparent caregivers, 314; grief resurgence role in, 323–24; historical context factors in, 72–73, 322–23, 324; meaning-making for, 309–10, 317; online support groups, 328, 334; overview and factors of, 298, 318–19; physical ability decline role in, 298, 299, 315–16; relocation and, 318, 329–30, 339–40; resilience factors, 71–73, 300–302, 307, 312, 316, 320; retirement-related, 316–18, 339; sibling death and, 310–11; social relationships role in, 307–8, 326; spouse/partner death and, 72, 302–11, 326, 328–29, 334; stigma

factors in, 316, 323, 337; suicide rates and, 335 online grief support and interventions: adolescent grief and, 142, 218–19, 229; COVID pandemic and, 82, 136–37, 241; for older adults, 328, 334; for parents of children with disabilities, 234, 235; for perinatal and prenatal loss, 232; with rituals and memorials, 160; for young adults, 206, 215, 218–19, 229, 232 Pagels, Elaine, 2, 4, 5, 6, 19 parental death (for midlife adult): gender and grief around, 270–71; grief interventions for, 289–90; loss and grief factors around, 4, 269–71; negative parental relationship impacting grief around, 4, 270; self-care lacking after, xvi; sibling relationship factor in grieving, 289 parental death (for young adult), xi–xii, 73, 212; grief interventions for, 219 parental death (for adolescents): grief interventions around, 172–76; loss and grief factors and impacts of, 150–52 parental death (in childhood): abusive prior relationship and experience around, 91, 95; anticipated compared with unexpected loss for grief around, 99; background characteristics impacting grief around, 99; blunt trauma model on grief around, 94; books for children about, 118, 119; Bowlby on impacts of, 23; cascade of events model on grief around, 94; childhood developmental stages relation to, 95–98; continuing bond with deceased and, 98, 101–2; cultural context and, 100–101; family system integration and support for, 99–100; fears about surviving parent after, 97, 98; grief experience of, overview, 93–95; grief tasks for, 101–2; by

Index homicide, interventions for, 135–36; honesty with children about, 100; individual capacities impacting grief around, 99; of mother compared with father, impacts of, 99; overview of loss and grief relation to, 93–95; positive growth after, 95; regrieving and, 90, 102; resilience factors for, 94–95, 98–101; rituals and, 98, 100–101, 102; shock–aftershock wave model on grief around, 94; sibling differences in experiencing, 60; social context and, 99; stigma experience around, 98; surviving parent impact for child grief around, 100, 102 Parkes, Colin Murray, 17, 22, 40–41 partner. See divorce or separation; spouse/life partner death pathological grief, 20, 22, 24–25, 30 PCBD. See persistent complex bereavement disorder perinatal and prenatal death and loss: abortion and interventions around, 229; for adolescents, 162–64, 177; ambiguous grief around, 229; cultural norms and variations around, 162, 163, 177, 195, 230; deceased body viewing in stillbirth, 231; fathers grief around, 230; guilt and self-blame with, 194; misassumptions and discounting of grief around, 194, 195; miscarriage and interventions around, 229–30; regret with, 196–98, 229; religion and spirituality factors around, 163, 195; rituals around, 222; SUID factors and grief, xv, 196, 215, 217, 228, 232; support groups for, 218, 230, 231–32; young adult, 193–99, 217–18, 228–32; young adult grief interventions for, 228–32 persistent complex bereavement disorder (PCBD), 56, 57–59 pets/animals, xix; childhood grief interventions around death of, 116, 117, 118–19, 125, 134–35; as

575

childhood grief support, 129; older adult relocation and loss of, 329–30 PGD. See prolonged grief and prolonged grief disorder photographs: difficulty looking at, 49; rituals and interventions using, 98, 124, 135, 160, 222, 281, 288, 327 Piaget, Jean, 87–89 play and play therapy: in childhood grief interventions, 125–28, 137–38, 139; racial/ethnic identity considerations in, 126, 128; toys appropriate for abused children in, 138 police brutality, 128; Black and Brown populations loss and grief with, 3, 6, 7, 73–74, 77, 85, 90, 213, 240–41; community resilience around, 85; compassion fatigue for professionals and, 346; disenfranchised grief around, 213, 241; friends death in adolescence due to, 158, 159, 186; history and patterns of, 240–41; racism, 73–74, 240–41; resilience with grief around, 73–74, 85; young adult loss and grief around, 213 postmodern social constructionism, 19, 20, 27, 28–37, 68 posttraumatic growth, xiv; characteristics of, 67; after child’s death, 250–51, 260; gender differences in experience of, 70, 71, 72; as grief benefit, 29–30, 38, 40, 51, 64; after parental death in childhood, 95; for parents of children with disabilities, 9, 201–2; professionals work with bereaved and, 344–45; reconstruction of meaning role in, 29–30; regrieving and, 7; research on factors leading to, 51; resilience framework and, 67; support groups opportunities for, 28; traumatic loss and, 60–61 posttraumatic stress disorder (PTSD): abuse survivors and, 210; childhood, 91–92, 93, 113, 115; complicated grief relation to, 56; foster children

576

Index

posttraumatic stress disorder (PTSD) (continued ) and, 110; friends death in adolescence and, 159, 170; gender differences around, 69; grief outcomes relation to history of, 26; group-based interventions impact on adolescent, 170, 186–87; older adults grief interventions assessment for, 324; older adults relocation into care facility and, 318; traumatic grief and loss relation to, 61, 93, 135; young adult grief interventions and, 216 pregnancy loss. See perinatal and prenatal death and loss preoccupation: with child’s death, 253–55, 257; as complicated grief factor, 56, 57, 58, 58–59, 273; with death of self, 58; as grief stage, 40–41, 45; older adults grief intervention assessment of, 325 professionals. See health and human service professionals prolonged grief and prolonged grief disorder (PGD), 11; childhood interventions needed for, 112; excessive rumination and, 52; health issues and risks with, 21–22; for immigrants and refugees, 36; meaning-making role in reducing, 30; pathological grief term replaced by, 20; risk factors for, 57, 340–41. See also complicated grief; persistent complex bereavement disorder (PCBD) psychosomatic problems. See somatic/ psychosomatic problems psychotherapeutic bereavement groups: childhood grief intervention with, 130–31; young adult grief intervention with, 219–20 PTSD. See posttraumatic stress disorder racial/ethnic identity: adolescent grief interventions relation to, 186–87; adolescent loss and grief relation to, 142–43, 144, 147, 159,

162, 170, 186–87; childhood grief interventions considerations of, 126, 128, 130, 133, 136; foster care and, 110, 111; friends death in adolescence likelihood and, 147, 159; grandparent caregiving relation to, 314; older adult grief interventions considerations of, 323, 333; perinatal loss in adolescence relation to, 162; play therapy considerations of, 126, 128; resilience relation to, 73–74, 79–81, 192; sexual assault survivor loss relation to, 211; sibling death for elders relation to, 310; young adult resilience and factors of, 192. See also Black and Brown populations; immigrants and refugees; specific racial/ethnic identities racism and racial inequalities: adolescent grief interventions consideration of, 187; Black Lives Matter movement and, 6, 12, 187, 240–41; COVID impacts and, 2, 3, 12–13; cultural competency limitations in light of, 12; life stage factors around, 14; multigenerational impacts of, 7, 80, 82; older adult grief interventions impacted by, 323, 333; play therapy and factors of, 128; police brutality relation to, 3, 6, 7, 73–74, 77, 85, 90, 213, 240–41; professionals assessing and addressing, 13, 344, 349, 353; society as whole impacted by, 6; young adult loss and grief around, 213 rage. See anger and rage Rando, Therese, 41–42, 44, 222–24, 342 refugees. See immigrants and refugees regret: with abortion or adoption, 196–98, 229; depression relation to grief-related, 26; grief counseling impact on feelings of, 280; guilt relation to, 48, 160; older adults letting go of, 300, 309; with parents death for midlife adults, 270; rumination relation to, 52; suicide grief and, 161. See also “what ifs”

Index regrieving: childhood loss and, 87, 90, 102, 125; growth through, 7 religion and spirituality: adolescent grief interventions and, 187; adolescent loss and grief relation to, 147–48, 160; capacities around, 76–77, 286; childhood loss and grief and, 103, 128; child’s death and, 251, 253, 259, 260; continuing bonds with deceased relation to, 34–35, 63–64, 81; family therapy considerations of, 132; grief counseling consideration of, 286, 287; grief expression relation to, 17, 30, 31, 32–37; intragroup differences around grief and, 36–37; midlife adult grief intervention assessment of, 294–96; moral guilt and, 48; in older adult grief interventions, 333–34; perinatal and prenatal loss relation to, 163, 195; resilience relation to, 76–78, 79, 80, 286; self-care strategies relation to, 352; sibling death and, 103, 148; wellbeing relationship to, 333 reminiscing: childhood loss and grief and, 92, 98; grief process role of, overview, 49–50; midlife adults grief interventions and, 281, 285, 289, 295; older adults loss and grief role of, 300, 302, 310, 323, 326–27, 334, 340 resilience: accident-related deaths and, 75, 84; adolescent loss and grief, 147–49, 155; adversity type as predictor for, 75–76; background characteristics as predictor for, 68–75, 90, 99; capacities as predictor for, 76–85; after catastrophes/natural disasters, 84, 136; in childhood loss and grief, 89–91, 94–95, 98–101; child’s death for midlife adults and, 255–56; community factors for, 75, 80, 84–85, 91, 136; cultural capacities and, 79–81, 84, 90; cultural norms and variations impact on, 73–74, 79–81, 84, 192, 302; defining, xv, 67; ecological model of person and

577

environment and, 15; family systems and capacities around, 82–83, 90, 111; framework, characteristics and components, 28, 66–68; gender differences around, 69–73, 74–75; life stage and, developmental, 73; loss/adversity type role in, 75–76; midlife adult loss and grief, 245–46, 255–56, 286; multigenerational variability with, 67–68; older adults loss and grief, 71–73, 300–302, 307, 312, 316, 320; personal capacities and, 76–79, 90; police brutality and, 73–74, 85; prior relationship with deceased role in, 68, 73; racial/ethnic identity relation to, 73–74, 79–81, 192; religion and spirituality impact on, 76–78, 79, 80, 286; rituals role in, 74, 80, 90; sexual orientation/ gender identity relation to, 74–75, 208, 302; social and environmental capacities for, 81–82, 90; solutionfocused approach relevance to model of, 236; suicide and, 75–76; support groups and, 81–82; unexpected/offtime losses and, 73, 75–76, 84, 136; young adult loss and grief, 71–72, 73, 192–93 restoration/loss orientations (DPM), 32, 43–44, 44, 256, 309 rituals and memorials: adolescent grief interventions role of, 187; adolescent loss and grief, 155, 160, 170; for African Americans around death, 35, 74; body of deceased treatment, cultural variations on, 35, 47, 81, 122–23, 220, 226–27, 274; childhood grief interventions, 121–24, 125, 129, 134–35; childhood loss and grief role of, 98, 100–101, 102, 115, 121–24, 125; around child’s death, 258, 259–60, 288; cultural norms and variations around, 34–35, 80, 81, 222, 224, 225–28; Everplans website for cultural context around, 222; familyinitiated, for bereaved children,

578

Index

rituals and memorials (continued ) 121–23; friends death in adolescence and, 160; function of funeral and, 101, 122, 206, 221, 222; Latinx, 34–35, 80; non-death-related loss, for children, 124; online, 160; parental death for midlife adults, 271; perinatal and prenatal death, 195, 230; pet death, for children, 134–35; photographs used in, 98, 124, 135, 160, 222, 281, 288, 327; predeath, 294; professional-initiated, for bereaved children, 123–24; resilience and, 74, 80, 90; therapeutic bereavement, creating, 222–24; young adult grief interventions and, 221–28 rumination, 25, 31–32, 45–46, 52 school shootings, 6, 7; adolescent grief interventions and, 168, 184–85; community capacities role in resilience around, 84; compassion fatigue for professionals and, 346; friends death in adolescence related to, 158, 159–60; media coverage of, 159 secondary losses: with adolescent loss and grief, 146, 160; with childhood loss and grief, 86, 91, 131–32; with divorce/separation for young adult, 208; grief process models and, 43; with home loss, 9; for parents of child with disabilities, 9; with spouse/ life partner death, 24, 204–5; with traumatic losses, 6, 60 self-care: in caring for older adults, needs for, 268–69; excessive rumination impacting ability for, 45–46, 52; parental death for midlife adults and lack of, xvi; physical, 351; psychological and emotional, 351–52; spiritual, 352; strategies, 350–53; workplace/professional, 352–53 self-identity: adolescent loss and grief relation to development of, 142, 143, 144–45, 147–48, 151, 155; childhood

loss and grief resilience relation to, 90; disabilities and chronic illness impacting, 9; grief impacts on, overview, 18–19; grief tasks model on, 40; older adult retirement impact on, 317; older adult sibling death impacts on, 310; older adult spouse/ partner death impacts on, 302, 306, 307; restoration tasks around, 43, 44; young adult developmental tasks and, 190, 191; young adult spouse/partner death impact on, 205–6 sexism, 32, 128, 274, 299, 323 sexual assault: ambiguous loss for survivors of, 211; disenfranchised grief, 210; prevention initiatives, 235–36; solution-focused approach to interventions around, 236–38; young adult grief interventions around, 234–36; young adult loss and grief around, 209–11, 234–36 sexual orientation/gender identity, 12, 15; adolescent loss and grief around, 74–75, 143, 149–50; ambiguous loss and, 54, 75, 83; child’s death grief relation to mourners, 262; disenfranchised grief and, 53, 207, 222, 308–9; HIV/AIDS death and, 204, 207, 247, 311, 314; older adult resilience relation to, 302; resilience relation to, 74–75, 208, 302; spouse/ partner loss impacts relation to, 207–8, 308–9; young adult life partner loss and, 207–8; young adult loss and grief relation to, 74–75, 191, 207–8 sibling death: for older adults, 310–11; for young adults, xi, 48, 255 sibling death (in adolescence): death discussions and openness role in handling, 154–55; grief interventions around, 172–76; health problems after, 153, 155; impact underestimation, 152; parents grief/ withdrawal as double loss around, 153–54; religion and spirituality impact around, 148

Index sibling death (in childhood): books for children about, 117–18, 119; response to and impacts of, 88, 102–3 SIDS. See sudden unexpected infant death Silver, Roxane, 25–27, 39 social constructionism, 19, 20, 27, 28–37, 68 social functional approach, 21, 27–28 social media. See internet use; online grief support and interventions social workers. See health and human service professionals societal factors and support: adolescent grief with sexual orientation and, 149–50; COVID pandemic and, x, 3; denial of death relation to, xv; disenfranchised grief and, 53–54; losses impacting whole of society and, 6, 7; mourning ability impacted by, 5; rituals lack and, ix; with widowhood compared with divorce, 265. See also community factors; cultural norms and variations socioeconomic status: adolescent loss and grief relation to, 147; childhood loss and grief relation to, 90; COVID pandemic impacts relation to, 12–13, 136; grief variations relation to, 36–37; loss differences relation to, 2, 14; parental death impact by and on, 99–100; play therapy considerations of, 128; resilience relation to, 69, 74 Somalians, mourning 12, 33 somatic/psychosomatic problems: abuse survivors and, 210; childhood grief interventions and, 112–13; compassion fatigue and, 347; as complicated grief factor, 58, 59, 273; depression and, 167, 336; Lindemann on prolonged grief and, 21–22; after sibling death in adolescence, 153, 155 spiritual beliefs. See religion and spirituality spouse/life partner death: child’s death compared with, 246–47; divorce or

579

separation loss and grief compared with, 73; DPM creation around, 44; gender differences around, 70, 72–73, 206, 303–4, 306–7, 308; long-term changes after, 2; secondary losses with, 24, 204–5; sexual orientation/gender identity role in impacts of, 207–8, 308–9; terminology around, 12 spouse/life partner death (for older adult): anticipatory grief and, 303, 305, 311; continuing bonds with deceased with, 309; form and location of, grief impacted by, 305–6; gender variation in grief around, 72, 303–4, 306–7, 308; grief interventions around, 326, 328–29, 334; health issues and mortality risk after, 302, 303–4; loss and grief impacts and factors, 302–10; meaning-making and, 309–10; sexual orientation/ gender identity and, 308–9; social relationships impacted after, 307–8 spouse/life partner death (for young adult): gender and, 206; grief interventions for, 239;LGBTQ legal issues, 207; loss and grief factors and impacts with, 204–8; off-time nature of, impacts, 204–5, 239; sexual orientation and, 207–8 spouse/life partner relationship: abusive, loss and grief experience with, 56, 73, 263; child’s death impact on, xv, 71, 261–63; life-threatening illness impact on, xiii stage-based models (of grieving), 38–41 stage of life. See life stage, developmental; specific life stages stigma: adoption-related, 198; around after-death contact, 63; with emotional expression, 5, 46; of mental illness impact on caregivers grief, 266; older adults loss and grief impacted by, 316, 323, 337; parental death in childhood and, 98; with sexual abuse loss and grief, 210;

580

Index

stigma (continued ) suicide, 161, 337; type of death and, 53, 160–61, 207 still births. See perinatal and prenatal death and loss storytelling. See narratives and storytelling stress and coping models, 65–66. See also resilience substance abuse, 28; adolescent loss and grief relation to, 146, 148, 156, 160, 179; as adolescent suicide risk indicator, 179; ambiguous loss and, 54; as complicated grief symptom, 58, 59, 273; with midlife adult loss and grief, 273, 280; older adult grief interventions assessment for, 325–26, 332, 336; parental death in childhood relation to later life, 94; stigma, grief impacted by, 160 sudden unexpected infant death (SUID), xv, 196, 215, 217, 228, 232 suicide: community-wide impact of, 182–83; cyberbullying and, 181–82; depression around loss from, 26; guilt for bereaved around, 47, 250; midlife adult grief interventions for survivors of, 290; midlife adult rates of, 244, 290; older adult, rate of, 335; older adult assessment and prevention for, 335–37; parental death in childhood relation to later life, 94; resilience and, 75–76; sexual orientation/gender identity and, 74–75, 150, 161; stigma around, 161, 337; survivors, risk of complicated grief and suicide, 177, 183; traumatic loss and grief around, 60, 61 suicide (in adolescence): friends death by, 161–62, 177; grief interventions around, 167, 168, 177–83; internet usage and, 161; intervention, 182; loss and grief around, 74–75, 150, 158, 160– 62; postvention, 182–83; prevention, 178–82; risk indicators and assessment, 178–81; statistics, 158, 160–61

SUID. See sudden unexpected infant death support groups: adolescent grief interventions and, 142, 169–70, 175–76, 230, 231, 239; for caregivers, 338–39; in childhood grief interventions, 113, 128–31, 136–37; around child’s death, 28, 42, 218, 257–60, 288, 289; in COVID pandemic, 82, 136–37; disenfranchised grief enfranchised by, 217–18; gender and, 218, 331; grief and grief work theories on, 28, 30; meaning-making aided with, 82, 257–60; older adult grief interventions and, 328, 329–31, 334; for perinatal and prenatal loss, 218, 230, 231–32; posttraumatic growth opportunities in, 28; resilience aided with, 81–82; same-sex, 309; suicide prevention, for older adults, 337; task-based model for childhood grief, 129–30; for widow/widower, 28, 239, 308, 342; young adult grief interventions, 196, 201, 206, 217–20, 231–32; for young adults grief around partner death, 206. See also online grief support and interventions survivor guilt, 48–49, 76, 174, 207, 254 task-based models: about, 39–41; child’s death and, 258; continuing bond with deceased in, 40, 279; cultural variability, disregard of, 41; for foster and adopted children grief interventions, 138–39; grief counseling for midlife adults based on, 277–80; life-threatening illness and, 292–93, 294; men and, 69, 70, 71; older adult interventions using, 330, 334; for parental death grief in childhood, 101–2; support groups for childhood grief applying, 129–30; Worden and, 40, 138–39, 258, 277, 330, 334 therapeutic bereavement group. See psychotherapeutic bereavement groups

Index therapists. See health and human service professionals traumatic loss and grief: adolescent, 153, 159, 183–86; adolescent grief interventions for, 183–86; American Red Cross best practices for, 185–86; assessment tools for, 59; characteristics and events associated with, 59–61, 135; childhood, 91–93, 135; childhood grief interventions and, 112–13, 115, 120, 125, 130, 135–37; COVID and, 61, 305; with dying process witnessing, 59; guilt and self-blame around, 47, 60; hallucinations and, 31; midlife adult, 246–51, 272–73, 276, 288, 297; older adult grief interventions addressing, 324; PTSD relation to, 61, 93, 135; saying goodbye lack role in, 60, 61, 108–9; secondary losses around, 6, 60; around sibling death in adolescence, 153; unresolved death as factor in, 60; vicarious traumatization for professionals around, 347–48. See also catastrophes/natural disasters; complicated grief; unexpected/offtime losses unexpected/off-time losses: adolescent grief relation to, 143, 150, 152, 159, 168, 183–86; childhood grief relation to, 92, 99, 113, 114; children born with disability and grief around, 8–9; child’s death for midlife parents and, 247–48; COVID pandemic and, 57, 61, 92; depression with expected loss compared with, 26; 264; emotional expression and dealing with, 282–83; grandparent caregiving and, 315; grief process and intensity impacted by, 55, 61, 75; guilt around, 47, 60; meaning-making impacted by, 29, 75; midlife adult grief relation to, xiii, xvi, 247–48, 264; resilience impacted by, 73, 75–76, 84, 136; rumination tendency around, 52; SUID grief

581 and, xv, 196, 215, 217, 228, 232; young adult grief relation to, xi–xii, 71, 204–5, 206, 208, 213, 215, 239. See also accidents; catastrophes/ natural disasters

weeping, 5, 33–36, 46–47, 69–70 “what ifs”: for adopted children, 139; for birth mother, around adoption, 197; around child’s death, 250; perinatal and prenatal loss and, 163, 195; as ruminative thinking, 52; traumatic loss and, 60 widowhood, 12; child’s death and, 263; cultural norms and variations around, 79, 84; dating in, 43–44, 306–7; divorcees social support compared with, 265; gender differences in grief experience, 72–73, 303–4, 306–7; health issues and risks, 72, 302, 303–4; historical context role in grief experience in, 72; for midlife adults, 263, 265, 272, 278; for older adults, 43–44, 302–10; older compared with younger, grief, 303; social isolation for, 306; support groups, 28, 239, 308, 342; for young adults, 204–8, 239. See also spouse/life partner death women. See gender Worden, James William: on adolescent grief and positive use of internet, 142; on assisting clients grief, 10; on family therapy goals, 132; on grief counseling vs. grief therapy, 14; on grief differences from depression, 26; mourning defined by, 20; on relationship with deceased, 40; taskbased grief model of, 40, 138–39, 258, 277, 330, 334 Wortman, Camille, 25–27, 39 writing. See journaling; narratives and storytelling young adult grief interventions: adoption and, 232–33; capacities factors for, 216, 224–25, 241;

582

Index

complicated grief and, 216; cultural norms and variations considerations in, 220, 222, 224, 225–28; familybased, 215, 220–21; for immigrants, 239–40; models and techniques overview, 216; off-time nature of loss considerations in, 215; online, 206, 215, 218–19, 229, 232; for perinatal and prenatal death and loss, 228–32; preventive, 216; PTSD and, 216; rituals role and considerations in, 221–28; sexual assault and, 234–36; social and support group-based, 196, 201, 206, 217–20, 231–32; solutionfocused approach to, 236–38; spectrum of interventions model, 216; for spouse/life partner death, 239; for widow/widowers, 239 young adult loss and grief: around abuse and sexual assault, 209–11, 234–36; adoption and, relinquishing child to, 196–99, 202–3; avoidance/ denial role in, 197, 209; capacities, 191, 192–93, 198, 211, 213, 216, 224–25, 241; children born with disabilities and, 8–9, 199–203, 233–34, 235; COVID pandemic and,

192, 193, 213–14; cultural norms and variations relation to, 193, 220, 222, 224, 225–28; developmental theories and considerations relation to, 189–92; disenfranchised grief with, 217–18; divorce or separation and, 208; health issues with, 72; with illness and disability onset for self, 203–4; for immigrants and refugees, 211–12, 239–40; overview and factors of, 189–90, 213–14; parental divorce or separation and, 191–92; parents death in, xi–xii, 73, 212; around perinatal and prenatal death, 193–99, 217–18, 228–32; quarter life crisis and, 190; around racism and police brutality, 213; resilience factors around, 71–72, 73, 192–93; sexual orientation and suicide relation to, 74–75; sexual orientation/gender identity relation to, 74–75, 191, 207–8; sibling death and, xi, 48, 255; social alienation with, 217; spouse/life partner death and, 204–8, 239; unexpected/off-time losses impacting, xi–xii, 71, 204–5, 206, 208, 213, 215, 239