Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury [1 ed.] 1462553583, 9781462553587

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HOLISTIC NEUROREHABILITATION

Also Available Psychotherapy after Brain Injury: Principles and Techniques Pamela S. Klonoff

Holistic Neurorehabilitation

Interventions to Support Functional Skills after Acquired Brain Injury

Pamela S. Klonoff

THE GUILFORD PRESS New York  London

Copyright © 2024 The Guilford Press A Division of Guilford Publications, Inc. 370 Seventh Avenue, Suite 1200, New York, NY 10001 www.guilford.com All rights reserved Except as noted, no part of this book may be reproduced, translated, stored in a retrieval system, or transmitted, in any form or by any means, electronic, mechanical, photocopying, microfilming, recording, or otherwise, without written permission from the publisher. Printed in the United States of America This book is printed on acid-free paper. Last digit is print number: 9 8 7 6 5 4 3 2 1 LIMITED DUPLICATION LICENSE These materials are intended for use only by qualified professionals. The publisher grants to individual purchasers of this book nonassignable permission to reproduce all materials for which photocopying permission is specifically granted in a footnote. This license is limited to you, the individual purchaser, for personal use or use with clients. This license does not grant the right to reproduce these materials for resale, redistribution, electronic display, or any other purposes (including but not limited to books, pamphlets, articles, video or audio recordings, blogs, file-sharing sites, internet or intranet sites, and handouts or slides for lectures, workshops, or webinars, whether or not a fee is charged). Permission to reproduce these materials for these and any other purposes must be obtained in writing from the Permissions Department of Guilford Publications. The author has checked with sources believed to be reliable in her efforts to provide information that is complete and generally in accord with the standards of practice that are accepted at the time of publication. However, in view of the possibility of human error or changes in behavioral, mental health, or medical sciences, neither the author, nor the editors and publisher, nor any other party who has been involved in the preparation or publication of this work warrants that the information contained herein is in every respect accurate or complete, and they are not responsible for any errors or omissions or the results obtained from the use of such information. Readers are encouraged to confirm the information contained in this book with other sources. Library of Congress Cataloging-in-Publication Data Names: Klonoff, Pamela S., author. Title: Holistic neurorehabilitation : interventions to support functional   skills after acquired brain injury / Pamela S. Klonoff. Description: New York : The Guilford Press, [2024] | Includes   bibliographical references. | Identifiers: LCCN 2023028114 | ISBN 9781462553587 (cloth) |   ISBN 9781462553570 (paperback) Subjects: LCSH: Brain damage—Patients—Rehabilitation. | Holistic medicine. | Brain—Wounds and injuries—Patients—Rehabilitation. | Brain—Wounds and injuries—Alternative treatment. | BISAC: PSYCHOLOGY / Neuropsychology | MEDICAL / Allied Health Services / Occupational  Therapy Classification: LCC RC387.5 .K558 2024 | DDC 616.8/043—dc23/eng/20231023 LC record available at https://lccn.loc.gov/2023028114 Guilford Press is a registered trademark of Guilford Publications, Inc.

About the Author

Pamela S. Klonoff, PhD, ABPP-CN, has been a faculty neuropsychologist at the Center for Transitional Neuro-Rehabilitation at Barrow Neurological Institute, Dignity Health, ­Phoenix, Arizona, since 1986, and became the Center’s Clinical Director in 1993. Her passion and primary clinical endeavors are in holistic milieu neurorehabilitation, with an emphasis on psychotherapy for patients and families, group interventions, cognitive retraining, and mentoring therapists. Dr. Klonoff has participated in over 55 publications, and has completed two previous books. She has presented widely in the areas of acquired brain injuries, holistic milieu-oriented treatment, individual and group psychotherapy, family interventions, and cognitive retraining so as to maximize patients’ community reintegration.

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Contributors From the Center for Transitional Neuro-Rehabilitation: Alicia Blank, MS, CCC-SLP Padmaja Bollam, MD Patricia Briody, PT, DPT Heather Caples, PhD Erika E. Ehlert, MS, CCC-SLP Amy Helmuth, BS, CTRS Jennifer Joy Hunsaker, MS, CCC-SLP Edward Koberstein, MSC, CC-MH Lori Lindman, MS, OTR/L Sarah Rajda, MOT, OTR/L, AOTA, CBIS, NBCOT Maura Eileen Rhodes, MS, CCC-SLP Samuel Schaffer, PT, DPT

From the Barrow Neurological Institute: Thomas Bour, MHA Robert Spetzler, MD Christopher St. Clair, MOT, OTR/L, MBA

From the Community: Meghan Grange, MS, CCC-SLP Rivian Lewin, MS Kavitha Perumparaichallai, PhD Susan Rumble, PsyD

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Preface Therapy—The Relational Healing Force of Mind and Heart Within and Between

W

elcome to the culmination of a 38-year epic journey of holistic neurorehabilitation! This book is meant to guide you through post-acute holistic rehabilitation for patients with acquired brain injuries (ABIs). Holistic milieu neurorehabilitation is defined as an interactive approach to treat the “whole person” using multimodal, individual, and group therapies in the fields of neuropsychology/rehabilitation psychology, speech therapy, occupational therapy, physical therapy, recreational therapy, vocational counseling, nutrition, social work, and psychiatry, with physiatry oversight. The patient and his or her support network actively collaborate with the treatment team to ascertain and attain functional goals in the home and community, including productive school and work. Cognitive, language, communication, physical, emotional, functional, interpersonal, spiritual, and quality-of-life aspects are addressed using restorative and compensatory interdisciplinary approaches. Superseding goals are enhanced fundamental life skills, well-being, and societal participation. The Center for Transitional Neuro-Rehabilitation (CTN) is used as the case example of post-acute holistic milieu neurorehabilitation. Like the clinic atmosphere, this manual aims to be a rich juxtaposition and amalgamation of specialized vantage points, innovations, and collaborative, united teamwork, also with external physicians and administrators. The Gestalt principle of the whole is greater than the sum of the parts is interwoven throughout and hopefully tangible to the reader, exemplified by colleagues in multiple disciplines contributing to this endeavor. In writing this, I’m struck by the content versus the spirit of this work. I’m hoping the depictions bring to life the experiential essence of a nurturing, “luvfesty” atmosphere, as without that, the best therapeutic methodologies languish. This hands-on manual is divided into three subunits: Part I, “Introduction to Neurorehabilitation,” containing Chapters 1 and 2, sets a backdrop by delineating fundamental neurorehabilitation concepts and techniques essential ix

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Preface

for constructing quality neurorehabilitation, especially in post-acute settings interested in holistic milieu programs. Preeminent characteristics of holistic milieu therapy are defined, including awareness, acceptance, realism, sense of self, and the working alliance. Forces of unity and diversity are evidenced in a nonjudgmental milieu. The viability, history, philosophical basis, and evolution of the CTN are explained, and then entwined throughout the rest of the book to embody the theoretical and operational aspects of our program. Part II, “Clinical Approaches and Techniques” (Chapters 3–6), describes clinical approaches and clinic-oriented holistic individual and group therapies that enhance and round out functional skills. Specifically, Chapters 3 and 4 present individual and group methodologies for treating cognitive, communication pragmatic, and emotional/­psychiatric sequelae after ABI. Out-of-the-box group interventions addressed in Chapter 5 include aquatic therapy, adaptive tai chi and yoga, a cooking group, event planning, a news­letter group, community outings, and a vocational group. Besides the evolution of hands-on therapist–­patient/family “talk therapy and traditional interventions,” Chapter 6 describes the advancement and utilization of state-of-the art equipment, modalities, and technology in holistic milieu therapy. Part III, “Transfer of Skills” (Chapters 7–9), focuses on the generalization of honed skills and compensations to the “real world.” Chapters 7 and 8 pertain to the patients’ roles as parents, and the re-establishment of driving, social life, leisure, work, and school. Family treatment and training are embedded in Chapter 9, given the vital role the tiers of support play in the recovery and neurorehabilitation of their loved ones. Chapter 9 also addresses aftercare opportunities for patients and families. Chapter 10, a supplemental chapter that can be found on this book’s companion website, reviews the role of evidence-based historical and efficacy research emanating from our center. Recent research is presented from a 30-year prospective outcome study of the role of process variables in community reintegration, and caregiver experiences of postinjury grief. Chapters 1, 2, and 6 are conceptual, theoretical, and evidence-based. The structure of the “hands-on” technique chapters (Chapters 3, 4, 5, 7, 8, and 9) follows the sequence of the general overview and goals that are the overall purpose and “why” of various interventions. We then move to the structure and process or the “when and what.” This section also delineates the session length, the overall duration of the treatment, who co-leads the group, and the ratio of patients to therapists. The final portion is protocol, which defines the “how” of therapeutic interventions, namely, exactly how the intervention unfolds step-by-step. Throughout the book, we interweave clinical vignettes, as well as user-friendly materials, such as checklists, rating scales, and handouts, to enable clinicians in any setting (hospital, community, individual and group practices) to easily access effective treatment tools. Extra but integral subject matter arranged in appendices, adjunct material, colorized figures and forms, and a resource list are available on the book’s companion website. This volume is designed to be relevant to independent practitioners, traditional outpatient environments, or holistic milieu settings. Importantly, we will illuminate how team members in multidisciplinary, interdisciplinary, and transdisciplinary settings can utilize therapeutic interventions to assist patients in enhancing their independence in the home and community. The book will be of interest to the following practitioners and professionals: neuropsychologists, rehabilitation psychologists, speech therapists, occupational therapists,



Preface xi

physical therapists, vocational specialists, social workers, recreational therapists, and dietitians. Physicians interested in the field of neurorehabilitation will also find the contents worthwhile, including physiatrists, psychiatrists, neurologists, and neurosurgeons. This book can be used in a training capacity for undergraduate and graduate students in all of the above fields. Clinicians can adopt any or all treatment segments based on their interests, models, and/or resources. As a bonus, under the guidance of knowledgeable clinicians, contents of this book can be shared with survivors of diverse ABIs and their support networks (e.g., families). The central tenet of empowering the survivor of a brain injury and his or her family together with community supports means providing therapist-guided access to this book for anyone committed to compassionate care. We then collectively assist patients who tenaciously envision and realize a meaningful, fulfilled, and productive lifestyle, though somehow altered from preinjury trajectories. Like any major life journey and in tandem with our admirable patients/families, this project has had its moments of exhilaration but also occasional pitfalls and even dead ends. It mirrors any spectacular life-altering undertaking that relies on knowledge, curiosity, introspection, respect, empathy, and kindness toward oneself and others, core values, and interrelatedness. Like all things worthwhile, it strives to connect with others, promote transcendence, and better our collective human condition. At the time of writing this book, our society has battled the effects of COVID-19 for several years. In parallel to the plights of our patients and their families, the expected became the historical, the taken-for-granted became our true gratefulness, and the woes of some became the suffering of many. Health, financial, psychological, and practical consequences of the contagion affected every victim and their societal cohort. When COVID-19 first descended, many of our patients said, “Welcome to our world,” where everything we know and do crumbles in an instant. In-person milieu therapy for many transitioned to teletherapy for at least some period of time. The inherent sense of community based on personto-person interactions in therapy groups, breaks, and lunchtime evaporated. Group psychotherapy and family group temporarily moved to a distant second choice of teletherapy. However, our patients and families had the experience and resiliency to combat the downturns better than the rest of us and we learned from their insights and resolve. I am humbled by their courage and perseverance. Emulating them, we stayed the course and reconstituted carefully the in-person milieu when and how we could. It was a strong reaffirmation of how fortunate we are to have human connectedness as the foundation of effective holistic milieu neurorehabilitation and recovery, and how to find the silver linings, joy, beauty, miracles, and gratefulness in life’s vicissitudes.

Acknowledgments

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his book is built on a community—I want to express my deepest gratitude to my Center for Transitional Neuro-Rehabilitation (CTN) family of colleagues who show never-­ending dedication, ingenuity, and compassion for their work. Their steadfast belief in our holistic milieu mission creates the requisite nurturance and interrelatedness that typify the power of therapy. Thank you to the Barrow Neurological Institute administration, especially Mr. Thomas Bour, whose commitment to exemplary patient care is fundamental to the holistic milieu model of care at the CTN. A special thank you to Dr. Christina Kwasnica, physiatrist and CTN Medical Director, for your expertise and responsiveness to our holistic milieu programs. I want to especially thank my immediate and extended family, especially my husband, Irwin, and our three sons, Zachary, Aharon Tzvi, and Aaron, who have endured absences and preoccupations during this lengthy writing venture. Their love and voiced faith in the merit of this project was a sustaining and galvanizing force. I greatly appreciate Rochelle Serwator, Katherine Sommer, and Laura Specht ­Patchkofsky and the team at The Guilford Press for their expertise and guidance. An immense thank-you goes to Edward Koberstein, who for the past 18 years has painstakingly supported my writing travails. His work ethic and attention to detail are second to none, and this project could not have been possible without his unflagging dedication and technical expertise. Thank you to my coauthors who partnered with me on this journey— your thoughtful and robust input elevated the content and messages of this book. I want to acknowledge a number of therapists who took the time and energy to read portions of this project during its evolution. Thank you to Michelle Sladek, OTR/L; Pamela McNamara, OTR/L; Alice Anderson, OTR/L; Franne Kaplan, RD; Jordan Schaffer, PT, DPT; Kristina Millhouse, CCC-SLP; Suzanne O’Connor, PsyD; Joseph Murthy, PsyD; and Spring Johnson, xiii

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Acknowledgments

PhD. Thank you to Jon “Brooks” Van Doren and Scott Janetsky for your proofreading eyes. A special thank-you to Maura Rhodes, whose artistry so colorfully vitalized the constructs. Thank you to community members who believe in the second chance for our patients; your kindness propels survivors to a revitalized life in society where they feel renewed belongingness and worthwhileness. You opened doors for others to walk through! I dedicate this book to all who stumble but refuse to capitulate and instead strive for wholeness and goodness. Your grace, grit, and ability to hold on to the roller coaster of life, marked by the lows of vulnerability, desperation, and angst—yet the highs of self-discovery, transcendence, and reinvention—uplift us all. Your tales invited others to a seat at a table imbued with collegiality and inspiration, against a backdrop of unity and diversity. In memory of the legacies of Yehuda Ben Yishay, Gustavo Lage, and Ruth Kraus, whose beliefs and actions epitomized the carrot seed (Krauss, 1990), which took root, sprouted, bloomed, and ultimately thrived against the forces of nature.

Contents

I.  INTRODUCTION TO NEUROREHABILITATION 1. The Evolution of Fundamental Concepts of Post-Acute Neurorehabilitation: Historical and Current Considerations 2. How to Construct Quality Neurorehabilitation in Hospital and Community Settings

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with Christopher St. Clair, Robert Spetzler, and Thomas Bour

II.  CLINICAL APPROACHES AND TECHNIQUES 3. Techniques to Address Cognitive Skills

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with Heather Caples

4. Techniques to Address Communication Pragmatics Skills and Emotions

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with Erika E. Ehlert and Padmaja Bollam

5. Treatment Groups for Functional Skills

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with Jennifer Joy Hunsaker, Patricia Briody, and Erika E. Ehlert

6. Technological Advances in Post-Acute Neurorehabilitation with Maura Eileen Rhodes and Samuel Schaffer xv

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Contents

III.  TRANSFER OF SKILLS 7. Transfer of Skills to the Home, Community, and Work

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with Heather Caples, Lori Lindman, Maura Eileen Rhodes, Jennifer Joy Hunsaker, and Erika E. Ehlert

8. Post-Acute Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry

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with Alicia Blank, Meghan Grange, and Amy Helmuth

9. Holistic Interventions for Families and Tiers of Support and Aftercare

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with Edward Koberstein and Sarah Rajda



References

Index

Purchasers of this book can access forms from the book as well as online-only supplemental materials (including Chapter 10, “Holistic Neurorehabilitation Efficacy and Outcomes Research,” with Kavitha Perumparaichallai, Rivian Lewin, Susan Rumble, and Edward Koberstein) at www.guilford.com/klonoff2-materials. Forms may be downloaded and printed for personal use or use with clients (see copyright page for details).

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I

INTRODUCTION TO NEUROREHABILITATION

1 The Evolution of Fundamental Concepts of Post-Acute Neurorehabilitation Historical and Current Considerations

C LI N I C A L V I G N E T TE Henry was age 19 when he sustained a severe traumatic brain injury (TBI) as a result of a motorcycle accident where he was not helmeted. There was an immediate loss of consciousness, and he was unresponsive at the scene. Henry was intubated and taken to a Trauma 1 center. He had a blown left pupil and multiple internal and orthopedic injuries. Computed tomography (CT) imaging in the emergency room documented diffuse cerebral edema, and magnetic resonance imaging (MRI) indicated diffuse axonal injury as well as multifocal damage to the cerebral cortex bilaterally, bilateral basal ganglia, the cerebral peduncles, and the pons. After prolonged hospitalization including transfer to a subacute unit for ventilator weaning, he was transferred to an inpatient neurorehabilitation setting, where he spent 1 month, followed by outpatient therapies for 7 months. Residua included dysphagia, impaired cognition, and abnormalities of gait and mobility. Upon referral from his physiatrist, 9 months post TBI, Henry was interviewed for the Work Re-Entry Program at the Center for Transitional Neuro-­Rehabilitation (CTN) with its holistic milieu orientation. During the preadmission consultation, he evidenced reasonably good awareness of his physical difficulties, as he was confined to a wheelchair or a walking crutch. He minimized any cognitive difficulties, only acknowledging small memory problems that he believed were on the mend; organic and psychogenic unawareness abounded. His parents, however, itemized multiple cognitive, emotional, and functional sequelae, which rankled Henry. Henry’s intake multidisciplinary evaluations indicated double vision, bilateral hand ataxia, and significant deficits in left-sided strength, functional mobility, balance, and coordination. He demonstrated salient self-­relative and normative challenges with memory, speed of information processing, attention, as well as written and auditory comprehension. He also manifested a host of executive function difficulties affecting judgment, critical thinking, planning, problem solving, and impulse control. Throughout this 3

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Introduction to Neurorehabilitation

phase of neurorehabilitation, it was evident that Henry had very supportive and loving parents, who were also emotionally devastated by the TBI aftereffects. Henry somewhat reluctantly agreed to enter the treatment phase at CTN, as he felt the intensity and emphasis on his cognition were not warranted. In contrast, his parents were delighted and highly relieved that he would be receiving holistic interventions, especially individual and family psychotherapy. Throughout the first portion of Henry’s program participation, his struggles with awareness, acceptance, and realism in combination with a preinjury history of rule breaking created havoc with the working alliance and impeded progress in his individual and group therapies. Henry also combated depression (including feeling helpless and worthless) and anxiety. There was lots of frustration, punctuated by Henry’s periodic rants toward his therapists and parents, indicative of catastrophic reactions (CRs) and narcissistic rage. His sense of self was shattered as preinjury, he was a marathon runner and avid skier, enjoying local races. Eventually, Henry forged ahead and prematurely, in the opinion of his physiatrist, parents, and therapists, accepted a job working in a large department store necessitating heavy physical demands, such as lifting large objects, using a stepladder, and extensive walking. In team meetings, therapists were of two minds: some urging immediate intercession with Henry and the employer to remove him from the job for fear of negative repercussions, and others adopting a “wait and see” but cautious approach of constant monitoring at work and close liaison with the employer. Using an ambidextrous leadership style that encouraged constructive disagreements and creative resolution, the clinical director and team agreed to the latter game plan. Fortunately, the employer and Henry agreed to expand on-site job coaching by his physical and speech therapists. After only a few more shifts, Henry almost fell at work trying to move a large television, despite warnings by his physiatrist and team not to. Henry’s resistance persisted by disregarding therapist, physician, and family input and refusing to use his cane, abide by medical restrictions, and take notes to compensate for his profound memory problems while working. He therefore was placed on temporary probation. Soon thereafter, Henry was contacted by the company’s Human Resources Department, as the supervisor had observed him exhibiting multiple instances of unsafe practices at work and significant forgetfulness. Henry was given a written warning at work, foreshadowing termination pending any other glitches with his work performance. This action greatly took Henry aback. However, it was the “wake-up” call he needed as he was catapulted into improved awareness, acceptance, and realism and an openness to putting “life on hold” and the collaborative creation of feasible steppingstones to enable greater recovery. Henry appreciated the empathic and “planned action” approach of his therapists during this tumultuous phase. After some intense “heart-to-heart” discussions with his psychotherapist and parents, using the patient and family experiential models of recovery (PEM; FEM) (Klonoff, 2010; Klonoff, Koberstein, Talley, & Dawson, 2008), Henry realized he was in way over his head at work and needed to resign. He did so and reengaged his therapies with a zest not previously seen. Personalized mantras reminded him that the process of neurorehabilitation was a marathon, not a sprint and that he needed to navigate life’s prolific moguls to win the race. The robust, person-­first working alliance fortified Henry’s trust in the process and catalyzed the development of assimilative and accommodative coping skills and movement away from a transcrisis state. His parents continued their close alliance with the CTN team and physiatrist, and the relationship with their son blossomed. A few months later, Henry secured a job at the front desk of a gym, which was the right fit for him and was



Concepts of Post-Acute Neurorehabilitation 5

a position that he loved. He also began volunteering for the Special Olympics for children. His mood, adjustment, and sense of self were reconstituting, with a renewed self-­identity, realistic optimism, and a joyful, purpose-­laden existence. This chapter delineates fundamental concepts critical to post-acute neurorehabilitation. Awareness, acceptance, realism, and sense of self are defined based on current and historical ideologies, following which assessment and treatment approaches are proffered to enhance these areas based on interventions at the CTN, a holistic milieu program. The definition and application of a positive working alliance to optimize patient outcomes are provided based on multimodal interventions with the survivor and his or her support network, healthy leadership, and sophisticated team roles and dynamics.

Working Definitions of Psychotherapy, Awareness, Acceptance, Realism, and Sense of Self A working definition of “psychotherapy after brain injury” is the collaborative working relationship between a psychotherapist and a patient who has suffered a brain injury, with the goals of raising awareness, acceptance, and realism about his or her circumstances in order to restore a cohesive sense of self, well-being, productivity, meaning, hope, and quality of life embedded in family and social relationships and society (Klonoff, 2010). It can be considered a metaphysical healing process. Likewise, “psychotherapy with the family/support network” of a survivor of a brain injury can be defined as “three-­tiered, multi-­person, collaborative, and dynamic working relationships between the psychotherapist, the primary caregiver(s), and other committed relatives and community individuals (including and on behalf of their loved one with the brain injury) to increase the whole support network’s internal awareness, acceptance, and realism about their own as well as the loved one’s postinjury experience, while at the same time creating renewed personal adjustment, meaning, and quality of life, within an external nourishing community” (Klonoff, 2014, pp. 15–16). Regardless of the setting, format, size, and population of patients with acquired brain injuries (ABIs), the all-­encompassing philosophical basis for post-acute neurorehabilitation can focus on improving “self-­awareness” (the understanding and acknowledgment of post­ injury strengths and difficulties, as well as their functional implications); “acceptance” (the injured individual’s ability and willingness to cope with his or her new reality and identity through embracing and using compensatory strategies); and “realism” (the integration of accumulated internal perceptions and external life experiences to produce healthy judgments and attainable objectives for the future) (Klonoff, 1997, 2010). A “sense of self” is the essence of one’s being, based on an amalgamation of inherited and environmental factors (Klonoff, 2010). Sense of self contains foundational personality attributes and a sense of who one is (Lewis & Rosenberg, 1990). Inherent in this are recognition and integration of “personhood,” which incorporates the personal and social/public/cultural aspects of self (Gelech & Desjardins, 2011). Elements of the self are identity, a person’s subjective characterization of individuality in a social context, and social roles, which are his or her societal position and responsibilities (Klonoff, 2010). Reconstruction of sense of self requires exploration of

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Introduction to Neurorehabilitation

loss experiences intermingled with postinjury stability, recovery, transcendence, and posttraumatic growth (Gelech & Desjardins, 2011; see Klonoff, 2010, for a review).

Current Considerations and Applications of the Awareness, Acceptance, Realism, and Sense of Self Constructs in Post‑Acute Neurorehabilitation Depending on the post-acute site, clinicians have a multitude of ways to assess and remediate challenges with awareness, acceptance, and realism. Based on the venue, patient population, clinical preferences, and team composition, specific interventions can be culled and applied. As with all constructs, starting with the “foot in the door” orientation gets the process underway for the participant and his or her support network. To the extent that the clinician can select from this smorgasbord of possibilities, the foundational ideas can begin to be constructed within any post-acute environment.

Awareness The construct of awareness is complex, multifaceted, and incorporates the capabilities for objectivity and subjectivity, integration of external information and internal experiences, executive functions, error analysis, and metacognition (Belchev et al., 2017; Dockree, ­Tarleton, Carton, & FitzGerald, 2015; O’Keeffe, Dockree, Moloney, Carton, & Robertson, 2007; Prigatano & Schacter, 1991b; see Medley & Powell, 2010, for a review). Some have conceptualized “neurogenic unawareness” or anosognosia versus “psychogenic unawareness” or denial (O’Callaghan, Powell, & Oyebode, 2006). Although research is murky, impaired self-­awareness is impacted by neurological or organic factors, such as the nature and extent of the brain damage; psychological elements, for instance, coping strategies, emotional adjustment, defense mechanisms such as denial, and pre- and postinjury personality attributes; social considerations, including self-­identity and interpersonal behaviors; and cultural factors (Shapiro-­Rosenbaum et al., 2022; for reviews, see Belchev et al., 2017; Klonoff, 2010; O’Callaghan et al., 2006). Investigation of the neural basis of impaired self-­awareness after TBI has implicated network disruptions, such as the frontoparietal control network, including the anterior insulae and dorsal anterior cingulate cortex and diffuse damage to cortical–­subcortical systems (Dockree et al., 2015; Ham et al., 2014; see Ownsworth, 2017, for a review). Brain activation and connectivity in the right frontal lobe, white matter, and default mode network vary depending on the level of awareness (Terneusen et al., 2022). Self-­awareness is also influenced by the survivor’s affect and demeanor, attending to and recalling experiences; the susceptibility for CRs and/or narcissistic injury (see below); and the capacity and opportunities for generalization of insights into the “real world” (Goldstein, 1952; Klonoff, Lage, & Chiapello, 1993; O’Callaghan et al., 2006; Ownsworth, 2017; see Klonoff, 2010, for a review). Overall, a biopsychosocial model has been proposed, incorporating the dynamic interplay of preinjury attributes, neurocognitive factors, personal appraisals and reactions, and the postinjury social environment (see Ownsworth, 2017, for a review).



Concepts of Post-Acute Neurorehabilitation 7

Methods to assess self-­awareness include interviews, questionnaires, checklists, or rating scales; and comparison of patients’ responses with collateral input, such as from family members or clinicians; neuropsychological performance; and clinical observations (Dockree et al., 2015; Geytenbeek, Fleming, Doig, & Ownsworth, 2017; Klonoff, 2010; Vanderploeg, Belanger, Duchnick, & Curtiss, 2007). Resources include the Self-­Awareness of Deficits Interview (SADI; Fleming, Strong, & Ashton, 1996), the Patient Competency Rating Scale (PCRS; Kolakowsky-­Hayner, 2010), the Awareness Questionnaire (AQ; Sherer, 2004), the Mayo–­Portland Adaptability Index (MPAI; Malec, 2005), and the Dysexecutive Questionnaire (DEX; Wilson et al., 1996; see Ownsworth, 2017, for a review). Awareness is not universal across domains; often, survivors better recognize physical challenges compared with cognitive or emotional sequelae (Klonoff, 2010). Also, in general, self-­awareness improves over time, with exposure to real-life experiences (Geytenbeek et al., 2017; Rubin, Klonoff, & Perumparaichallai, 2020; Vanderploeg et al., 2007). Self-­awareness can be viewed as operating on a fluid continuum, from relative unawareness to burgeoning awareness, to fuller insight characterized by intellectual awareness (understanding of a decline from premorbid levels); metacognitive awareness (attention to behavior, knowledge, and beliefs); emergent awareness (seeing the issue in “real time,” in-the-­moment error awareness, and successful performance of everyday activities); and anticipatory awareness (planning and projecting the implications of potential shortcomings) (Barco, Crosson, Bolesta, Werts, & Stout, 1991; FitzGerald et al., 2019; Klonoff, 2010). Empirical evidence indicates that improved self-­awareness is linked to better recoveries after ABIs, including employment; it also reduces caregiver burden (Kelley et al., 2014; Rubin et al., 2020; see Geytenbeek et al., 2017, for a review). Conversely, research has demonstrated that impaired self-­awareness is correlated with decreased motivation for neurorehabilitation, suboptimal use of compensations, reduced independence and overreliance on caregivers, problematic social and behavioral skills, meager relationships, worse psychosocial functioning and community reintegration, and compromised long-term outcomes (see Geytenbeek et al., 2017, for a review). Although controversial, a number of studies have identified greater prevalence of impaired self-­awareness with more severe brain injuries (see Geytenbeek et al., 2017, for a review). Mixed conclusions have been reported regarding emotional distress, with some studies finding greater upset and anxiety associated with poor self-­awareness due to unrealistic goals and lifestyle expectations, and others implicating greater emotional disturbances with heightened awareness of deficits (Ownsworth, 2017; see Geytenbeek et al., 2017, for a review). Intensified distress is also linked to patients’ experience of CRs or the “threat to self-­realization” when they experience a strong emotional reaction to current difficulties that were accomplished with ease before the brain injury (Goldstein, 1952; Klonoff, 2010; Klonoff et al., 1993).

Acceptance Rehabilitation does not guarantee restoration of normal function (Evans, 2020). Thus, acceptance phenomena after brain injury necessitate coping mechanisms and rely on sufficient cognitive and emotional energies (Klonoff, 2010). Some differentiated between

8

Introduction to Neurorehabilitation

“assimilative” coping or the attempt to reduce or eliminate obstacles versus “accommodative” coping, which necessitates engaging in new or reset objectives (see Van Bost, Van Damme, & ­Crombez, 2017, for a review). A hallmark of acceptance is embracement of compensations, which are tools, strategies, and techniques to “get around” problems (Klonoff, 2010). Accepting the aftermath of the brain injury is not synonymous with “giving up” or “resignation”; in fact, it constitutes bearing the limitations “without resentment” and with grace and a futuristic outlook (Fadyl, Theadom, Channon, & McPherson, 2019; Goldstein, 1939; Wright, 1983; see Van Bost et al., 2017, for a review). This entails putting “life on hold” and relinquishing certain aspirations and coping with lost opportunities and the anticipated future self (Fadyl et al., 2019). Hence, by putting in the time for recovery, focusing on assets, reforming normal activities and life processes, and seeking attainable goals, the survivor can choose to live by his or her value system and achieve quality of life (Fadyl et al., 2019; Van Bost et al., 2017; Wright, 1983). With respect to the acceptance process, coping theories have identified a problem-­ focused style whereby strategies are employed to actively confront and alter a situation, or an emotion-­focused approach based on emotional responses, expression, and reappraisal, or some combination of both (Klonoff, 2014; see Shotton, Simpson, & Smith, 2007, for a review). It is also useful to remember that patients with poorer preinjury coping tactics tend to incorporate inferior postinjury coping approaches, resulting in worse outcomes (Gregório, Gould, Spitz, van Heugten, & Ponsford, 2014). Others have highlighted the importance of psychological flexibility (such as in acceptance and commitment therapy and mindfulness therapies) as a precursor for coping and adjustment (Whiting, Deane, Simpson, McLeod, & Ciarrochi, 2017). Central are accepting challenging internal and external experiences and limitations, overcoming periodic “transcrisis” states, staying present in one’s existence yet recognizing there is no endpoint to the acceptance process, not engaging in avoidance, and demonstrating committed action (Davis, Gemeinhardt, Gan, Anstey, & Gargaro, 2003; Klonoff, 2010; Whiting et al., 2017). Theory and research have identified that coping and adjustment fluctuate and are enriched when patients follow professional advice; realize that recovery will be incomplete but are still motivated and hopeful (exhibiting “realistic optimism”); use compensations; develop resiliency and well-being; receive external family support; perceive their situation as a combination of “luck and control”; and accept their circumstances, recognizing life’s changeability and positive aspects, such as their values (Klonoff, 2010; Shotton et al., 2007; Wright, 1983).

Realism Realism after ABI is grounded in “adjustment,” which is an evolutionary process of transformation and transcendence (Klonoff, 2010). Key subcomponents of adjustment have been articulated previously as “adaptation,” which pertains to the external activities associated with community integration; “intrapsychic assimilation,” defined as inner being and identity through reacquisition of self-­esteem, self-­efficacy, mastery, and happiness; and “existential assimilation,” or one’s life philosophy related to meaning in life, quality of life,



Concepts of Post-Acute Neurorehabilitation 9

self-­actualization, and hope (Klonoff, 2010). An extension of realism is a positive disability identity, whereby the individual feels communal attachment, societal affirmation of the incapacity, pride in claiming (vs. masking) disabilities, and searches for meaning and “silver linings” (Dunn & Burcaw, 2013). Meta-­analytic/synthesis qualitative research and clinical practice indicate that realism involves proper goal setting. This pertains to patient-­tailored yet collaborative, attainable, measurable short-term action plans or “steppingstones”; an orientation toward functional activity-­based objectives where he or she feels empowered and has choices and a sense of hope; education of survivors and families with “user-­friendly” tools like worksheets, diagrams, and action plans; personal significance or “the things that make me, me”; and regular reappraisal and adjustments, as necessary, to avoid undue failures and disappointments (Evans & Krasny-­Pacini, 2017; Hunt, Le Dorze, Trentham, Polatajko, & Dawson, 2015; Plant, Tyson, Kirk, & Parsons, 2016). One method is goal attainment scaling, which measures goal achievement on meaningful daily activities based on collaboration (Ashford & Turner-­Stokes, 2015; Grant & ­Ponsford, 2014). Another more recent goal-­striving system follows the acronym ­MEANING: Meaning, Engage, Anchor, Negotiate, Intention–­Implementation Gap, New Goals, and Goals as Behavior Change (McPherson, Kayes, & Kersten, 2015). Of note, practitioners often must contend with organizational characterizations of goals that may be disparate from the patients’ (Hunt et al., 2015). Nevertheless, clinical practice and research predict that the future of accurate goal setting will rely on greater “diversity,” a pluralistic array of techniques applicable at different points in neurorehabilitation and life situations, in antithesis to a cookbook approach; “specificity” that is personalized and based on unique attitudes, orientations, life experiences, interests, and willingness; and “sophistication” or a sound theoretical basis and systems approach with contemplation about the person’s social system (Siegert & Levack, 2015).

Sense of Self Techniques to explore survivors’ definitions of and alterations in sense of self include interviews, narrative explorations, and questionnaire content, such as from the Sense of Self Sentence-­Completion Task (Gelech & Desjardins, 2011; Klonoff, 2010). After brain injury, sense of self can be disrupted by alienation from the patient’s body and its operative intentionality (the “minimal self”) and altered self-image, based on stories about the past and future (the “narrative self”) (Sivertsen & Normann, 2015). Sense of self also contains private or the inner self, based on uniqueness and individuality; and public aspects such as relationships and links to society, which can also be interrupted after a brain injury (Gelech & Desjardins, 2011; Klonoff, 2010). Narcissistic injury and rage represent psychic wounds and can be precipitated by the injury’s assault on the sense of inner being, which shatters a person’s core essence and self-­defining capabilities (Klonoff, 2010; Klonoff & Lage, 1991; see O’Gorman, 2006, for a review). Personal construct and qualitative research have found that the construction of self after brain injury depends on “feeling part of things” in so far as (re-)discovering meaning in social and practical activities (Gracey et al., 2008).

10

Introduction to Neurorehabilitation

Assessment and Treatment Planning at the CTN for Awareness, Acceptance, Realism, and Reconstruction of Sense of Self Historically, holistic milieu neurorehabilitation has encompassed these constructs, in the context of a neuropsychological orientation addressing the cognitive, behavioral, psychosocial, and affective components of recovery; group interventions that also address communication pragmatics; dedicated space and teammates; an integrated treatment plan including goal formulation in the realms of level of productivity, psychosocial, and emotional adjustment; regular formal staff meetings; transdisciplinary roles; an independent living and/ or vocational experience; and chances for systematic participation of family members (see Klonoff, 1997, for a review). Enhancing awareness, acceptance, realism, and sense of self in the patient and the support network at CTN relies on the complex interplay between the initial consultation, intake evaluations by all disciplines, family sessions to review results and obtain collaborative objectives, and monthly updates and revisions regarding their goal status. The first step in preparing the holistic team for a potential admission is to circulate a report with the conclusions of the intake consultation (see Chapter 2) and to initiate a general discussion during the daily staff meeting regarding the psychological and functional condition of the participant and his or her family. At the time of admission, survivors, family members, and the therapists are aware of the general aims of treatment and the program in which he or she will be enrolled (see Chapter 2). This sets the overall gauge for how the evaluation will unfold. Each patient is assigned a core team; comprehensive assessments are conducted in neuropsychology, physical therapy, speech therapy, and occupational therapy. Appendix 1.1 on the book’s companion website provides a detailed compilation of domains, protocols, and tests from which multidisciplinary therapists can construct their preferred battery based on patient factors and the referral questions. Preferably, this inclusive evaluation is spread over a 2- to 3-week time frame, so as to conserve physical, mental, and emotional energies while going through testing. This approach also enables the opportunity for the patient to begin to amalgamate into the holistic milieu environment to see how he or she fares. On the first day, the patient and the support network meet with a neuropsychologist or rehabilitation psychologist in order to begin an orientation. A “welcome letter” is reviewed during that session which encompasses information about the holistic milieu process; evaluation and treatment considerations; the emphasis on the Karate Kid (Weintraub, Louis, Smith, & Avildsen, 1984) functional approach; compensation training; application of interventions to the home and community; working alliance factors with patients and their support networks; confidentiality parameters; and practical matters related to attendance, best modes of communication, and portable health profiles. New participants are also assisted in preparing a scripted introduction for the milieu session (daily business meeting) containing their name, type of brain injury, program they are being admitted to, and what work/­academic activities they were engaged in prior to their brain injuries (see Chapter 8). Normative and self-­relative performances are computed for the neuropsychological and speech and language testing; the latter captures the patient’s true proficiencies and challenges based on their preinjury functioning, academic, and vocational accomplishments (Klonoff & Piper, 2020). Following the full evaluation, a family meeting is held to review



Concepts of Post-Acute Neurorehabilitation 11

the findings from all disciplines with the survivor and his or her family with the core team, clinical director, and often the department manager and external case managers. Bell curve or gradient diagrams are distributed (based on self-­relative performance, where pertinent) by the core therapists, so as to give an overview of strengths and difficulties in a “user-­ friendly” and manageable format; even mild deficits are validated as meaningful to patients’ self-image (Klonoff, 2014). (See Form 1.1 for a generic document that can be used for this kind of assessment and Figure 1.1 as it was customized for Henry; colorized versions of both appear at this book’s companion website.) Modifications of these diagrams can also be utilized to capture main findings from the occupational and physical therapy evaluations. Monthly and programmatic objectives are discussed and provided in a succinct summary, and the estimated length of stay is reviewed, as well as the proposed schedule and combination of one-on-one and group therapies. Once all parties agree, including the referring physician/source, there is a natural shift from assessment to intervention. Determining baseline awareness, acceptance, and realism in the patient (in tandem with the caregiver’s) is essential for treatment planning, and has been delineated previously (Klonoff, 2010, 2014). Generally, the neuropsychologist or rehabilitation psychologist providing psychotherapy will gather preliminary observations and responses and then share potential facilitators and impediments with the treating team. However, a wealth of therapeutic information is unearthed as part of the holistic measurements, based on patients’ and their family members’ verbalizations and behaviors. Therefore, the multidisciplinary team is ensconced in recognizing how these overarching principles will affect treatment. For survivors and families grappling with the regimen and philosophy of the holistic milieu environment, several options are available. This includes a partial program targeting psychotherapy and psychiatric services in instances where the person’s mood (e.g., anxiety, depression, mood instability) threatens a smooth adaptation, and extending the “evaluation process” by approximately 1 month before formal admission. This enables fortification of the working alliance to maximize the survivor’s (and relatives’) readiness and embracement. In our holistic milieu environment, an array of methods are implemented to enhance awareness, acceptance, and realism in patients and their support networks, all of which are explored in more detail in subsequent chapters (Klonoff, 2010, 2014; Klonoff & Piper, 2020; Winson, Wilson, & Bateman, 2017; see Barco et al., 1991, for a review): • Analysis of thorough assessments • Cognitive retraining exercises • Psychoeducation • Cogent note-­taking in all sessions incorporating structured, organized, and personalized systems for easy readability, comprehension, and big picture integrative thinking • Compensation coaching to develop a personalized, sophisticated “toolkit,” such as checklists and various datebook systems • Task analysis • Problem solving • Exploration and treatment for denial, disavowal, resistance, procrastination, and abdication of personal responsibility

Introduction to Neurorehabilitation

Slight

* Degree of self-relative impairment

Within normal limits

%iles

98

Verbal skills Mechanical skills Visual memory Verbal learning/Recall Processing speed Basic attention/Working memory Executive functioning

WITHIN NORMAL LIMITS • Hearing

MILD IMPAIRMENT • Communication pragmatics

• Swallowing • Basic attention

• Basic written and auditory comprehension

MODERATE IMPAIRMENT

SEVERE IMPAIRMENT

• Complex attention

• Memory

• Fine-motor skills

• Speed of thinking

• Ataxia

• Reading

• Mobility and balance

• Writing

• Double vision

• Word finding

• Visuoperception

FIGURE 1.1.  Henry’s Multidisciplinary Evaluation Representations.



Concepts of Post-Acute Neurorehabilitation 13

• In-the-­moment cueing and feedback using professional behavior logs, verbal input, audio recording and videotaping, and error corrections • Learning to anticipate possible limitations and consequences • Sometimes planned failures whereby the patient is allowed to try an activity deemed unrealistic by those around him or her in order to learn firsthand from experience • Self- versus other rating scales • Role-play and role reversal exercises • Pretask performance predictions and posttask analyses • Practicing new behaviors using errorless learning and graduating exposure • Naturalistic tasks such as training opportunities in the clinic and for everyday activities like school and work Concepts of awareness, acceptance, realism, and sense of self are interwoven into every aspect of groups so as to advance survivors’ physical, cognitive, language, emotional, interpersonal, and functional status. Redefinition of the sense of self is also facilitated by the group experience based on contributions from a team of therapists, family, and other tiers of support, along with the patients’ peers, embedded in an atmosphere of nurturance and collective purpose (Klonoff, 2010). Figure 1.2 contains a brief description of available group therapies. Later chapters will delineate specific tasks and procedures for most groups and their relationship to enhancing awareness, acceptance, and realism. Irrespective of the specific intervention, it must be embedded in a “safe haven” environment in order for the patient and his or her support network to truly embrace the process (Ben-­Yishay & Diller, 2011; Klonoff, 2010, 2014). Which groups the patient will participate in during the course of neurorehabilitation and when to start the group depend on several factors. Most important is the overall emotional, cognitive, and physical readiness for the content and conduct of the group and that participation is considered medically necessary. Also important is the “fit” for the intent of the group based on the members’ strengths, challenges, and identified treatment goals. The availability and timing of the group must be considered, as some groups rotate over the course of the year (e.g., a psychoeducation group) and others are time-­specific (e.g., event planning group and newsletter group). Also, unfortunately, funding restrictions must be taken into account whereby a therapeutic entity is not covered by insurance. All groups begin with a review of the purpose. Participants ascertain their specific objectives for each therapy and often review these for their peers. The application of all in-­clinic activities to the “real world” is repeatedly referenced. Concomitantly, family members are expected to attend the weekly family group unless alternative arrangements are addressed prior to the loved one’s admission given that research and extensive clinical experience accentuate the importance of regular attendance for the good of both the survivor and caregivers (Klonoff, 2014; Klonoff, Lamb, & Henderson, 2001; Klonoff, Lamb, Henderson, & Shepherd, 1998; Klonoff, Stang, & Perumparaichallai, 2017). (See Chapter 9 for more information on the role of family.) Acceptance and realism interventions are augmented by the group experience because of the patients’ and families’ connectedness and joint undertakings to make sense of their predicaments (Fadyl et al., 2019; Klonoff, 2010). Invaluable tools are testimonials from

14

Introduction to Neurorehabilitation

Activities Group: Promotes the return to physical community activities that benefit physical recovery, greater independence, functional skills in the community, and emotional well-being. Adaptive Yoga Group: Improves balance, coordination, core strength, and flexibility; does deep breathing and relaxation; addresses weight bearing; reduces spasticity and tone; improves body awareness, postural stability, motor planning, endurance, and auditory processing; follows directions; and practices social interactions in a peer-supported exercise group. Aphasia Group: Improves patients’ expressive and receptive language skills (e.g., deficits in verbal expression, auditory comprehension, reading comprehension, and written expression) through social interactions and functional activities; uses compensations to effectively communicate needs, ideas, and opinions; follows directions and understands conversations; and practices functional writing. Aquatic Therapy Group: Addresses skills specific for swimming (e.g., water safety, various strokes); and physical skills (e.g., strengthening, coordination, speed of movement, balance, range of motion, and weight bearing). Cognitive Retraining: Facilitates restoration of cognitive skills, such as speed of information processing, visual scanning, language, working memory, new learning, attention, visuoconstruction, and executive functions using a series of predetermined exercises that are administered using a strict procedural protocol. Neurobehavioral challenges are also addressed, such as communication pragmatics, openness to feedback, impulse control, flexible thinking, distractibility, and cognitive endurance. Patients learn about their strengths, difficulties, and compensations in preparation for reintegration into the home, community, school, and work. Community Outings Group: Increases independence in the community through structured interdisciplinary group activities outside of the clinic. This enables the functional application of skills learned in therapies to relationships with others and community reintegration. Cooking Group: Prepares patients for greater self-sufficiency and teamwork in the home by planning a meal, grocery shopping using a budget, and cooking as a group using compensations and adaptive equipment. Current Events Group: Improves patients’ communication and cognitive skills (e.g., planning and organization) and the use of compensations to facilitate social reintegration using in-session and homework activities that focus on reading and understanding current events articles; writing a summary and opinion of an article; explaining the article to the group; and discussing opinions of the group members using appropriate communication pragmatic skills. Event Planning Group: Improves group members’ executive functioning skills (e.g., planning, organization, decision making, judgment, and problem solving); memory; language; communication pragmatics; creative thinking; time management; and the ability to work as a team and use compensatory strategies (e.g., datebook systems and checklists) to plan a departmental social event. Family Group: Provides family members and the support system with psychoeducation, emotional support, and round-robin updates about the recovery and neurorehabilitation process for their loved ones. Group Psychotherapy: Discusses patients’ emotional reactions to their brain injuries in a group environment to assist with the coping and adaptation process and practice higher-order cognitive, language (e.g., abstract reasoning, oral expression, verbal comprehension, and divided attention), and communication pragmatics skills. (continued)

FIGURE 1.2.  CTN groups and purposes.



Concepts of Post-Acute Neurorehabilitation 15

Memory Compensations Group: Improves patients’ awareness of memory functions and common deficits after brain injury; learns about memory compensation options (e.g., paper and electronic datebooks) and strategies to compensate for memory deficits (e.g., internal and external tools). Milieu: Where all patients and therapists meet as a community to discuss business, progress, and concerns to allow the smooth operation of the program; also a bonding forum for patients to practice cognitive, language, communication pragmatic, and interpersonal skills in a group setting. Mindfulness Group: A recently added group that teaches the principles and practice of personal mindfulness with peers so as to learn from and connect with one another in a nonjudgmental atmosphere. This facilitates the ability to stay present in the moment, regulate emotions, manage stress, and improve attention, concentration, and mental clarity, while enhancing the development of selfcompassion, awareness, acceptance, and realism. Motor Group: Improves the patient’s cardiovascular status; provides education about vital signs, body mechanics, and subjective signs of fatigue, pain, and safety. Introduces patients to various forms of cardiovascular exercise and equipment and helps them develop an individualized cardiovascular program, also employing cognitive remediation activities to improve attention span, memory, reaction time, executive functions, communication, and social judgment. Newsletter Group: Works on a variety of language and cognitive skills (e.g., writing, reading, verbal expression, planning, organization, time management, research, communication pragmatics, judgment, prioritization, and decision making) in a group setting in order to produce the semiannual CTN newsletter. Psychoeducation Group: (1) Increases awareness, acceptance, and realism; (2) improves learning and language skills; (3) understands the brain injury; (4) improves communication pragmatics; (5) incorporates strategies to live a healthy lifestyle; (6) works on note-taking, memory, executive functions, and verbal expression; and (7) understands how this information applies to everyday life and the return to independent functioning in the home, community, school, or work. Socialization Group: Provides education, training, and experience on topics relevant to cultivating and maintaining relationships, including peer friendships and dating in structured and unstructured settings. Didactics and exercises target role playing, listening skills, perspective taking, and initiative; and reviews how social media impact communication, social interactions, and friendships. Therapeutic Balance Group: Improves body awareness, higher-level balance and coordination, posture, and flexibility activities using adaptive tai chi exercises. Therapeutic Reading Group (Book Club): Improves reading comprehension, vocabulary, communication, planning, organization, and memory skills; and enhances quality of life by facilitating the return to reading for pleasure. Upper Extremity Group: Incorporates upper extremity exercises to address upper extremity strength, range of motion, and gross- and fine-motor coordination to improve functional mobility and activities of daily living; addresses cognitive skills during physical exercise. Vocational Group: • Education Modules: Prepares patients for the process of seeking, obtaining, and sustaining employment through: education and training about résumé writing; interviewing skills; the job application process; appropriate workplace behaviors; the Americans with Disabilities Act (ADA); personal finances; planning and organization skills for work; and use of compensations. • Work Modules: Improves cognitive, language, motor, and behavioral skills and communication pragmatics for work through planning, organizing, and carrying out simulated work projects as members of a team.

FIGURE 1.2.  (continued)

16

Introduction to Neurorehabilitation

graduates and/or family members who return to group psychotherapy, milieu sessions, and family group to update those presently “in the trenches” about their victories, emotional well-being, and reciprocal relationships. Employment of positive psychology tenets and multimedia in individual and group psychotherapy and family group; asset discovery when constructing strengths lists in psychoeducation group; community reintegration activities through community outings group and recreational therapy; and the emphasis on social appropriateness and realistic occupational aims during vocational group boosts acceptance, empowerment, personal value, posttraumatic growth, social self-­efficacy, optimism, resolve, resiliency, and life satisfaction (Ditchman, Sung, Easton, Johnson, & Batchos, 2017; Klonoff, 2010; Klonoff & Piper, 2020). Later chapters explore this subject in detail. Restoration of a cohesive sense of self is a combination of preinjury and postinjury components, predicated on continuity/retained versus discontinuity/loss factors (Gelech & Desjardin, 2011; Gracey et al., 2008; Klonoff, 2010). Mastery of the survivor’s “physical being,” practical everyday tasks, as well as integration into the social, existential, and spiritual realms are paramount (Gelech & Desjardins, 2011; Gracey et al., 2008; Klonoff, 2010; Sivertsen & Normann, 2015). Crucial are physical and occupational therapies that enable an understanding of bodily capabilities and improvements in body schema, body image, control of movement, a sense of ownership and agency, and meaningful physical pursuits, especially community sports and exercise (Sivertsen & Normann, 2015). CRs, narcissistic injury, grief and loss, suicidality, self-­identity, social roles, adaptation, resiliency, posttraumatic growth, spirituality, and existential transformations are tackled in individual psychotherapy, psychiatry sessions, psychoeducation group, group psychotherapy, mindfulness group, family group, and family meetings (Evans et al., 2020; Klonoff, 2010, 2014; Thomas, Levack, & Taylor, 2014). Narratives or life stories and multimedia are incorporated as much as possible, including autobiographies, children’s stories, websites, patient and family testimonials, YouTube videos, movies, songs, and art therapy (Dawson, Hargreaves, Sheikh, Summerill, & Archer, 2021; Klonoff, 2010, 2014; Thomas et al., 2014). Working together in the service of others adds purpose and self-­reflective meaning to patients’ existence and a renewed sense of self (Fadyl et al., 2019; Klonoff, 2010; Thomas et al., 2014). Survivors’ core stability and uniqueness are reclaimed through purposeful community reintegration activities, for example, community outings group, vocational group, milieu sessions (which spearhead group projects for underprivileged parties), and various types of therapist-­supported school and work experiences (Klonoff, 2010). (See later chapters.) The priority is self-­discovery, updating and consolidating a new identity, redefinition, self-­determination, and value-based living (Glintborg, 2019; Klonoff, 2010; see Ownsworth & Haslam, 2016, for a review).

The Working Alliance Concept: Historical and New Considerations Preeminent for any movement toward optimal awareness, acceptance, and realism is establishing a working (or therapeutic) alliance with the patient and his or her support network. Starting with Freud, the working alliance concept has been characterized and explored in a multiplicity of ways and is the nucleus of many bodies of psychotherapeutic practices (Ardito



Concepts of Post-Acute Neurorehabilitation 17

& Rabellino, 2011; Bordin, 1979; Horvath & Luborsky, 1993; Sandler, Dare, & Holder, 1973). Although research is limited, a strong working alliance is vital for holistic milieu neurorehabilitation and successful outcomes (Horvath & Luborsky, 1993; Klonoff et al., 2001, 2007; see Stagg, Douglas, & Iacono, 2019, for a review). It has also been considered “pan-­theoretical” as it is therapeutic in and of itself regardless of the therapy orientation (Ackerman & Hilsenroth, 2003; for reviews, see Ardito & Rabellino, 2011; Zilcha-­Mano, 2017). It is the active ingredient for emotional healing and inner conflict resolution against the foes of pain, suffering, and self-­defeating behavior (Horvath & Luborsky, 1993; Weiner, 1997; see Ardito & Rabellino, 2011, for a review). Fundamental to building a positive working alliance is “interpersonal trust,” defined as the patient’s readiness to accept vulnerability with the expectation that the behavior of another party will produce an eventual positive outcome (Krueger & Meyer-­Lindenberg, 2018). Goldstein (1939) identified the implicit role of trust in therapeutic effectiveness. Recent research and conceptualizations about trust have combined methodologies from neuroscience (e.g., brain circuits, hormones, transmitters, and genes); psychology (e.g., motivation, affect, and cognition); and economics (e.g., reciprocal exchange) (Krueger & Meyer-­ Lindenberg, 2018). Similarly, “empathy” or the understanding of what another person is experiencing, or attempting to express, has been identified as critical for outcome (Elliott, Bohart, Watson, & Murphy, 2018). It is a prosocial umbrella trait to decrease division and cultivate the virtues of other-­mindedness, kindness, forgiveness, tolerance, and generosity (see Abramson, 2021, for a review). Empathic responsiveness has also been referred to as subjective listening, vicarious introspection, and affect attunement (Kohut, 1984; Wolf, 1988). Empathy has been subdivided into “cognitive empathy” or the ability to adopt another person’s perspective and “emotional empathy” or the capacity to share and react affectively to another person’s emotional experience (Oliver, Vieira, Neufeld, Dziobek, & Mitchell, 2018). Therapist mediators of empathy include similar values, and nonlinguistic and paralinguistic behavior characterized by posture, vocal quality, facility for promoting exploration, as well as avoidance of talking excessively, giving advice, and interrupting (see Elliott et al., 2018, for a review). Being nonjudgmental, attentive, open to all topics, and attention to detail are perceived as being empathic (see Elliott et al., 2018, for a review). Worth remembering is that empathy is interactional with patient characteristics and preferences, also necessitating multicultural competence (Elliott et al., 2018). Cultural sensitivity translates to understanding cultural biases in practitioners and their interventions; suspension of unhealthy assumptions, opinions, and expectations; and solicitation of input from survivors and their support networks (Perumparaichallai & Klonoff, 2015). Based on empirical research, empathy is fostered by (Elliott et al., 2018): • Understanding the patient’s tasks and overarching goals, moment-­to-­moment experiences, and unspoken nuances • Ongoing adjustment of assumptions with attention to the leading edge of experiences to facilitate awareness • Regular assessment and discussion regarding the survivor’s perception of empathic responsiveness

18

Introduction to Neurorehabilitation

• Emphasis on receiving, listening, and respecting as opposed to doing and saying • Realization that empathy is not synonymous with mind reading and should be offered with humility • Focus on the co-­created experience between the therapist and patient • Recognition of a personalized attitude to patient care • A grounding in positive regard and authenticity Other primary features of a positive working alliance, also integral after ABI, are the rapport or “fit” between the patient and practitioner; a potential to develop strong emotional bonds; a reality-­ based collaboration (or solidarity) that is practical, purposeful, patient-­relevant, and dynamic; attention to “nuts and bolts” tasks; progression toward identified treatment objectives; and mutual respect, investment, and hopefulness (Bordin, 1979; ­Goldstein, 1939; Sandler et al., 1973; Shapiro-­Rosenbaum et al., 2022; Weiner, 1997; for review, see Klonoff, 2010; Stagg et al., 2019). Typical therapist qualities to sustain a strong working alliance require a competent skill set, humaneness, warmth, sincerity, unconditional positive regard, flexibility, availability, consistency, and creativity (­Ackerman & Hilsenroth, 2003; Ben-­Yishay & Diller, 2011; Greenson, 1965; Klonoff, 1997, 2013; ­McPherson et al., 2018; see Ardito & Rabellino, 2011, for a review). Per the seminal work of Beatrice Wright, practitioners should take a “person-­first” approach (Wright, 1983). They should be mindful not to “essentialize” disability, which is its stereotypical overemphasis to the exclusion of other aspects of the individual (Dunn, Ehde, & Wegener, 2016). Negative bias, ableism, and spreading or overgeneralization of one incapacity to other areas should be monitored (Andrews et al., 2019; Cummins, 2023; Dunn et al., 2016; Dunn & Elliot, 2005; Wright, 1983). Team members should also be sensitive to racial and ethnic microaggressions, microinsults, and microinvalidations (Cummins, 2023; Loya & Uomoto, 2015). These emanate from intentional or unintentional prejudices that mirror broader negative societal attitudes, thereby communicating lower expectations, negative messages, and degradations to marginalized groups (for reviews, see Loya & Uomoto, 2015; see Olkin, 2017). These concepts can also apply to negative stereotyped responses based on the effects in and of themselves of ABIs in an “able-­centric” society (see Loya & Uomoto, 2015, for a review). Paramount are language preferences and sensitivity, honoring the dignity of the person, prioritizing cultural competency, and advocating for systemic advances (Andrews et al., 2019; Cummins, 2023; Davis, 2023; Dunn et al., 2016; Wright, 1983; for reviews, see Dunn & Elliot, 2005, and Loya & Uomoto, 2015; also www.apa.org/ about/policy/guidelines-­assessment-­intervention-­disabilities.pdf; www.apa.org/about/apa/ equity-­diversity-­inclusion/language-­guidelines.pdf). Neurorehabilitation efforts must also include assessment and treatment of factors related to sexual orientation and gender identity and/or expression (American Psychological Association [APA], 2015; Moreno, Laoch, & Zasler, 2017). Transaffirmative psychological practice with transgender and gender-­nonconforming (TGNC) people necessitates understanding that gender is a nonbinary construct, that gender identity or expression may not align with sex assigned at birth, the interrelationships between gender identity and other cultural identities, and how gender identity and expression affect romantic and sexual relationships (APA, 2015). TGNC individuals with acquired brain injury may experience the



Concepts of Post-Acute Neurorehabilitation 19

effects of compound stigmatization and marginalization (Moreno et al., 2017). Hence, the culture of neurodisability must also be cognizant and sensitive to sexual and gender diversity in patients and their caregivers by validating their needs, respecting their rights, and taking an interdisciplinary approach with specialists in both brain injury and the TGNC population (APA, 2015; Moreno et al., 2017). Ideal patient characteristics include the capacity for attachment; psychological mindedness; inner drive for change and an eagerness to remain in psychotherapy; and prior experiences of mastery (Bordin, 1979; Greenson, 1965; Lewis & Rosenberg, 1990; Zilcha-­ Mano, 2017; for reviews, see Horvath & Luborsky, 1993; Kissinger, 2008). More recently, empirical findings have recommended distinguishing between the individual’s relative contribution of traitlike elements, such as the general ability to form satisfactory relationships with others, internal representations of self and others, and expectations of interpersonal relationships; and statelike components or time-­specific strengthening during treatment when predicting better outcome (Zilcha-­Mano, 2017). Noteworthy is that the person’s view of collaboration should consider his or her situational pressures and predisposition to be an “active type” or the change agent; a “mutual type” with the sharing of responsibility for progress between the patient and therapist; and the “dependent type,” where the efforts are more regularly ceded to the practitioner (Bachelor, Laverdière, Gamache, & Bordeleau, 2007; Bordin, 1979). Research indicates that the working alliance phenomenon is not a linear evolution (see Ardito & Rabellino, 2011, for a review). It will ebb and flow in conjunction with resistance and other natural factors (Sandler et al., 1973). Positive outcomes are more closely associated with effective repairs of the inevitable alliance breaches or ruptures (Ackerman & ­Hilsenroth, 2003; see Ardito & Rabellino, 2011, for a review). These are also referred to as “optimal failures” or a disruption/reestablishment cycle in the self-­object relationship between the therapist and patient that enables, through transmuting internalization, a strengthening of the intrapsychic structures and regulated self-­esteem (Baker & Baker, 1987; Wolf, 1988). Ultimately, he or she will hopefully accept, follow, and believe in the therapy (Ardito & Rabellino, 2011).

Application of the Working Alliance Construct in Post‑Acute Neurorehabilitation Within any form of post-acute neurorehabilitation, but especially for holistic milieu settings, the working alliance is multifaceted and multidirectional. It embodies the patient, treatment team and atmosphere, primary caregiver(s), broader family unit, and ideally the global support network (Klonoff, 2014). Through a dynamic, interactive, and cyclical process of understanding founded on attunement and acumen, and an educational/interpretation conceptualization predicated on the “whys” and self-­insight, the clinician can facilitate the survivor’s quest toward productive change, adjustment, personal growth, and goal attainment (Klonoff, 2010, 2014). Post-acute neurorehabilitation is team-based, yet “a team of experts does not necessarily make an expert team” (Salas, Reyes, & McDaniel, 2018, p. 596). With this in mind,

20

Introduction to Neurorehabilitation

comprehending the generalities and nuances of team construction and dynamics is critical for a harmonious climate in which positive working alliances can spawn and develop between the team, leadership, the participant, and the support network. For an in-depth exploration of many indispensable aspects of teamwork, see the 2019 Special Edition of the American Psychologist. This includes evidence-­based research to enhance team (and leadership) competencies, related to their attitudes, skills, and knowledge (Lacerenza, Marlow, Tannenbaum, & Salas, 2018). Previous publications and post-acute neurorehabilitation models have articulated how team behaviors also thwart or enrich the working alliance between one another, patients, and their support networks (Klonoff, 2013). Dynamics between therapists have been categorized according to their cognitive capabilities (e.g., analytical, flexibility, creativity); interpersonal and communication skills (e.g., empathy, collegiality, investment, and resiliency); and existential qualities (e.g., resolved, passionate, and hopeful) (Klonoff, 2013). Similarly, cultivating positive supervisor–­therapist dynamics is preeminent for an ambience of trust, respect, loyalty, and advocacy for one another (Klonoff, 2013). A team leader should foster a vibrant team of members who can be thoughtful, inspired to be creative, and feel interconnected and collaborative (Klonoff, 2015; Thayer, Petruzzelli, & McClurg, 2018). All of this directly translates to a positive working alliance with survivors and their families. Irrespective of the school of thought, the creation, cultivation, and sustenance of a positive working alliance in any post-acute neurorehabilitation site necessitate extra know­ ledge and psychotherapeutic finesse in accordance with patients’ cognitive and language challenges. This includes a sophisticated understanding of differential diagnoses such as between brain injury and other psychiatric and characterological factors; recognition of an evolving and nonlinear neuro-­recovery process; and a sophisticated understanding of individualized postinjury emotional and functional sequelae. The therapist requires strong executive functions such as critical thinking, organization, the capacity for translatable communications, and consideration of other versus self through perspective taking. Using “planned action,” he or she is an agent for generalization of constructs to everyday life (Klonoff, 1997, 2010). The therapist may often find him- or herself in the role of the “auxiliary ego” or “alter ego” so as to guide the survivor in acting in his or her own best interest (see Klonoff, 2010, for a review). Likewise, his or her technical and attunement techniques of underscoring patience, trust, and collaboration; juggling psychoeducation with outlets for affective release; proper timing and pacing of feedback; and integration of collateral inputs from tiers of support in real-life environments are vital for the working alliance to fortify and for the unfurling of awareness (Klonoff, 2010; O’Callaghan et al., 2006). Furthermore, researchers and clinicians have identified both patients’ personality attributes and the aftereffects of their ABIs that potentially facilitate or impede development and maintenance of the working alliance, especially for insight-­oriented therapy. Positive indicators include some capacity for self-­introspection and adaptability, dawning self-­ awareness, coachability, an “onboard” attitude by families, and the potential to return to a basic level of independence in the home and community, including staying unsupervised for a minimum of 2 hours and engaging in volunteer or competitive employment (Block & West, 2013; Klonoff, 1997, 2010; Klonoff et al., 2001; Lewis & Rosenberg, 1990). Possible impediments include various types of cognitive deficits, including severe disorientation, confusion,



Concepts of Post-Acute Neurorehabilitation 21

executive dysfunction, memory, and attention; behavioral problems requiring behavior modification plans; entrenched denial, guardedness and emotional brittleness, paranoia, agitation, violent behavior, and high suicidal risk; and suboptimal motivation related to secondary gain (Block & West, 2013; Klonoff, 2010). The importance of the working alliance with the primary caregivers and other tiers of support cannot be underestimated. Although not the identified patient per se (see Klonoff, 2014; Klonoff et al., 2017), establishing a positive therapeutic alliance with the support network is mostly the precursor (and usually the only hope) for developing and maintaining a sturdy working alliance with the survivor (see Klonoff, 2010, for a review). A multimodal treatment approach is best with the tiers of support with frequent individual and groupbased psychoeducation, and peer support and coping mechanisms in the clinic and home environments so as to foster a parallel process of improved awareness, acceptance, and realism regarding their loved one’s plight and prospects (Klonoff, 2010, 2014; Klonoff et al., 2017). See Chapter 9 for more details in this regard. In this context, “part and parcel” in post-acute neurorehabilitation is the phenomenon of resistance. This has been characterized as behavior that temporarily or continually detracts or distracts from healing and reaching therapeutic objectives (Newman, 2002). The therapist’s job is to unearth the possible underlying dynamics of resistance, such as denial, fear, avoidance, irritability, distrust, misperception, intolerance for imperfection, trouble with self-­regulation, and a propensity for rule-­breaking and/or risk-­taking behavior accentuated by potential cognitive impairments including memory, attention, and executive functions (Newman, 2002; Prigatano & Klonoff, 1998; see Klonoff, 2010, for a review). Resistance reactions also need to be placed in the context of the patient’s, family’s, and therapist’s developmental, characterological, experiential, psychosocial, and cultural backgrounds; hence, the psychotherapist can be a “cultural broker” to foster cross-­cultural communication and mediate conflicts (Klonoff, 2010; Newman, 2002; Perumparaichallai & Klonoff, 2015). See Chapter 4 for more description of this phenomenon. Attunement to alliance deterioration is necessary so as not to jeopardize patients’ optimum outcomes (Zilcha-­Mano et al., 2015). To this end, clinicians need to be attentive to potential precipitants and markers of fatal ruptures in the working alliance due to the therapist’s problematic personal attributes (e.g., aloofness, self-­focused); behavioral ineptitudes (e.g., violation of personal space, inattention to respectful communication, nonverbal blunders); and/or misapplication of technique (e.g., inappropriate use of self-­disclosure, dogmatic use of interventions) (Ackerman & Hilsenroth, 2001; Block & West, 2013). There should be a “velvet glove” versus an “iron fist” style. The practitioner needs to take his or her degree of responsibilities for impasses, with a normative, not pejorative, viewpoint of resistance (Medley & Powell, 2010). Self-­evaluation of contributions to poor working alliances is mandatory; helpful tools include peer and supervisor feedback and various conceptualizations, for example, the therapist experiential model of treatment (TEMT) (Block & West, 2013; Klonoff, 2011). The working alliance construct can be operationalized and quantified in any neurorehabilitation environment. Patients and their families should be introduced to this notion early on, with emphasis on the saliency of this for neurorehabilitation gains and recovery. The Bordin (1979) model of the three variables of bonds, tasks, and goal identification is a

22

Introduction to Neurorehabilitation

user-­friendly approach. Likewise, therapists can include their own view of the working alliance with the survivor and support network and solicit regular reverse input. This catalyzes honest and free dialogue insofar as how the therapeutic relationship is or is not unfolding; issues can be proactively addressed, rather than allowing a slowly deteriorating process that may be overlooked.

Operationalizing the Working Alliance Concept at the CTN In holistic milieu neurorehabilitation settings, like the CTN, the working alliance is embedded in overlapping layers of culture, including the culture of origin, the brain injury culture, the neurorehabilitation/milieu culture, the treating therapists’ personal and professional culture, and mainstream culture (Perumparaichallai & Klonoff, 2015). In essence, the holistic milieu environment promotes a “melting pot” cultural environment amalgamating a myriad of patient, family, and the staff’s backgrounds and global “community” features. Characteristics may vary between centers but can be differentiated according to “what” is done in therapy versus “how” it is accomplished. The “what” is the participant’s exposure to individualized multidisciplinary (e.g., independent discipline-­specific decision making) treatment as well as interdisciplinary (e.g., collaborative interfacing for formulating objectives) and transdisciplinary (e.g., overarching synthesis of theories, concepts, and methods transcending specific disciplines) groups all based on medical necessity and realistic goal setting (Butt & Caplan, 2010; Karol, 2014; see Klonoff, 2015, for a review). The “how” in our holistic milieu environment is the intermingling of the overarching elements of orchestration and continuity of care, nurturance, camaraderie, a “two-way street” collaboration, cultural sensitivity and sharing, and emotional expression and adaptation, as well as in-house common lingo and jargon. Hallmarks are structure, accountability, and professionalism, prioritizing functional applications of skills, synchrony, and interconnectedness. There are outward manifestations of community positivity and hopefulness such as celebration of achievements; “cake days”/graduations and birthdays; a circle of positives; the quote, color, and song of the week; and monthly contributions to program therapies during milieu sessions (Klonoff, 2010; Perumparaichallai & Klonoff, 2015). See Figure 1.3 (a colorized version appears at the book’s companion website) for an artistic rendition of the power of the working alliance that illuminates intercommunication, self-­discovery, and a path to renewal. This process is propagated through the caring milieu, surrounded by coping zones of the PEM (see Chapter 3 for more details; Klonoff, 2010). At CTN, we have collected working alliance data using this conceptualization for the past 20+ years for every participant and his or her primary caregiver at the time of program admission, on a monthly basis, and at the time of discharge. A quartile scale is used by the therapists: excellent (76–100); good (51–75); fair (26–50); and needs work (1–25). Then an average score is computed based on the input of all team members treating the participant either one-on-one or in groups. This consensus rating is reviewed with the survivor and primary caregiver in advance of finalizing reports (Klonoff, 2014; Klonoff et al., 2010). Conversely, the patient and family’s categorical ratings of the therapists are obtained based on the same four-point scale and included in the report.

Concepts of Post-Acute Neurorehabilitation

23

FIGURE 1.3. Artistic rendition of the power of the working alliance. Artwork by Maura Rhodes. Used with permission.

The working alliance concept is also regularly discussed as part of individual sessions (especially psychotherapy) as well as in group psychotherapy and family group. Research findings that highlight the correlation of working alliance with patients’ optimal outcomes for work and driving are explicitly reviewed by studying research abstracts (Klonoff et al., 1998, 2001; Prigatano et al., 1994). Maintaining a positive working alliance with the tiers of support when the patient is not “buying into” his or her therapy is accentuated during individual and group sessions with family members. This material is closely linked to both the PEM (Klonoff, 2010) and FEM (Klonoff, 2014; Klonoff et al., 2008), particularly how the healthy, warning, and crisis coping zones influence recovery and neurorehabilitation. Threats to a positive working alliance are explained, including “the honeymoon is over,” “kill the messenger,” and power struggles. (See Chapters 3, 4, and 9 for more information.) Parenthetically, one way to either strengthen or authenticate the working alliance is to recognize when the neurorehabilitation process is collapsing. This is characterized by failure to accomplish objectives, a breakdown in rapport and embracement of the treatment philosophy, and often all-out refusal to comply with program expectations. Multiple interventions are utilized in a nonpunitive manner, such as behavior logs, family meetings, conferring with the clinical director, and regular feedback regarding concerns in all sessions,

24

Introduction to Neurorehabilitation

with in-depth exploration and problem solving in individual psychotherapy. One useful tool is to place the patient on “probation.” This is employed sparingly to remedy noncompliance when usually the root cause is characterological, for example, antisocial, borderline, and narcissistic personality disorders, with a contributory role of preinjury psychological factors, for instance, bipolar disorder, acting-­out/violent behavior, and poor motivation (Klonoff, 2010). Organic factors typically exacerbate these deficits that then interfere with goal acquisition, creating a disruptive and contaminated milieu atmosphere (Klonoff, 2010). Substance abuse will result in probationary status. Probation can also be utilized for family members due to entrenched resistance and continuing interference with the patient’s progress. Probationary status typically is a successful method to reorient the survivor (and family) toward a positive working alliance and goal attainment. For example, over the past 7.8 years, 17 patients and one participant and his spouse (only 4.8% of the total enrollment) were placed on program probation. The median length of time was 2.3 months, with a range of 1 week to 7 months. Of this group, 70.5% successfully completed the program. Figure 1.4 summarizes key components and the protocol to follow when patients struggle in the holistic milieu venue, including probation and discharge.

CTN Staff Meetings as a Mechanism to Optimize Team Dynamics and Foster Positive Working Alliances with Patients and Families The theoretical and operational aspects of CTN staff meetings have been articulated extensively elsewhere (Klonoff, 2015). These are the prototype and microcosm of the milieu climate, as well as genuine and healthy team relationships, that flow directly to the working alliance and treatment ambience with survivors and their families. CTN team members meet up to five times per week: Monday through Thursday from 8:00 to 8:55 A.M and again on Wednesday from 3:30 to 4:15 P.M. The medical director performs patient rounds with the team on a monthly basis and is easily accessible in the interlude. Staff meetings are devoted to continuity of patient care, review of administrative, “housekeeping,” and programmatic considerations; and unequivocally to nourish the therapists to sustain their creative and dedicated energies and circumvent “compassion fatigue” and problematic countertransference reactions, namely, the feelings evoked by the patient in the therapist (Klonoff, 2015; Sandler et al., 1973). A “Balint-­type” approach is taken to explore therapist–­patient dynamics and transference reactions, as well as to metabolize and comprehend unconscious and conscious emotional states triggered by our participants so as to maximally assist them (Mills & Smith, 2015). The aim is to realize that “it is better to have knowledge of ourselves and feel pain, than to be blind to ourselves and cause harm” (Mills & Smith, 2015, p. 399). This author chairs the meetings and strives to apply “ambidextrous leadership” principles with “opening behaviors,” such as encouraging the team to think differently and break away from the norm, counterbalanced with “closed behaviors” whereby the team is sensitized to clinical drift by prompts to follow established and proven routines, methodologies, and protocols (Klonoff, 2015; see Thayer et al., 2018, for a review). Propagating a transformational leadership style assumes the team is expressive, purposeful, and feels it is part



Concepts of Post-Acute Neurorehabilitation 25 1. Behavioral difficulties may arise after acquired brain injury and during the neurorehabilitation process. There is close liaison with the program psychiatrist in this regard. Attempts are made to manage these challenges with intensive psychological and psychiatric care in combination with close communication with the medical director, referring doctor, and/or the neurologist and physiatrist. 2. Patients may not be considered a “good fit” if over time (e.g., 1–3 months) the patient is not benefiting from the neurorehabilitation process and/or if behavioral problems are disruptive to the neurorehabilitation of others. A poor working alliance with the family, which is jeopardizing the patient’s progress, is also grounds for probation or discharge. Two consecutive months of therapists’ ratings of a patient’s and/or family’s working alliance of “needs work” in monthly reports are grounds for probation or discharge. Often patients will be placed on probation for 4 weeks or longer, if deemed appropriate. Should this be the case, challenges are discussed with the patient and the family and are well documented before any discussion of probation or discharge emerges. Therefore, a patient is not discharged from the program because of problematic behavior without fair warning and discussion. 3. Examples of reasons for discharge from the program are: a. Uncooperative or consistently resistant behavior; this can take the form of overt belligerence or regular refusal to comply with treatment recommendations. b. Failure to comply with the basic rules of the program, for example, inconsistent attendance over time, unwillingness to participate in a situational assessment or work activity as part of the Work Re-Entry Program, or violence toward patients or staff. c. A significant lack of progress as documented by failure to attain agreed-upon goals. d. A clear realization on the part of the treatment team, clinical director, medical director, psychiatrist, and other relevant providers that the holistic milieu setting is not meeting the needs of the patient or impeding the overall recovery (e.g., requires more individual therapy, cannot tolerate group therapies). e. Evidence of substance abuse based on positive drug and/or alcohol screens. f. Ongoing problems in the working alliance with family members, resulting in fragmented communication or disruptive behavior by family members. 4. Upon discharge from the program, specific recommendations for appropriate resources are provided to the patient and family in order to provide continuity of care and meet the patient’s ongoing neurorehabilitation needs. If appropriate for the program in the future, readmission is possible.

FIGURE 1.4.  Probation and unsuccessful completion of CTN.

of a “family”; each member has unique contributions to the common vision of superlative patient care (Bass & Avolio, 1993). Given the unity, talent, energy, and expertise in the team, the intent is to proliferate distributed leadership (Balkundi & Kilduff, 2006). Examples are proactive case management oversight and care coordination with internal and external providers by the neuropsychologists/rehabilitation psychologists so that survivors’ intermediate steps toward subgoals are accomplished efficiently and effectively. Figure 1.5 depicts as a funnel how the leader can guide proactive and fruitful case management throughout the entire team by following a revolving and evolving analytical protocol that starts with holistic clinical observations, moving to conceptualizing and strategizing

26

Introduction to Neurorehabilitation

Holistic Clinical Observations

Conceptualize Collateral Input Strategize

Efficient and Time-Limited

Operationalize

Implementation

Data Measurement

Generalization

Proficiency

FIGURE 1.5.  Analytical protocol for case management.

next steps, then operationalizing and implementing concrete therapeutic measurable goals, followed by generalizing insights and techniques to the “real world,” and finally arriving at proficiency, all in the context of collateral input from family and community partners, efficiency, and designated time limits. Inculcating these skills enables the team members to reduce overreliance on the leadership and bolster their self-­efficacy and self-­governance on behalf of their patients and families. Articulating this process with the patients and caregivers using diagrams and one-page synopses keeps the treatment momentum focalized and vibrant for everyone. Practically speaking, CTN therapists are invited to prioritize who is discussed; however, the condition of everyone is reviewed at least weekly. A dashboard system is used with rotating updates by all disciplines for each survivor. Topics are the progress and hindrances to goal achievement, including the division of labor within the team and applicable time lines; the patients’ level of independence in the clinic and surrounding environs as well as the home and community; working alliance considerations; medication alterations; and



Concepts of Post-Acute Neurorehabilitation 27

work and school updates. A problem identification/solving stance is taken, with an eye on the relative weighting of developmental, neurological, preexisting, psychodynamic, familial, psychosocial, and cultural factors as well as gender identity/expression influences on integrated treatment objectives (Klonoff, 2015). Psychotherapists are viewed as the engine oil that dampens the shock, reduces friction, cools heated interchanges, and forms the seal of the working alliance involving the rest of the team, the patient, and his or her support network (Wen-Yu Cheng, personal communication, February 11, 2022). There is a welcoming manner toward an amalgamation of ideas and approaches based on (Klonoff, 2015; Perumparaichallai & Klonoff, 2015; Thayer et al., 2018): • Diverse multidisciplinary, interdisciplinary, and transdisciplinary roles • Creativity, innovation, and divergent thinking • Round-robin discussions, healthy banter, constructive disputes, and conflict resolution • Unique inputs of the team members based on their own age and stage in life, personal and professional experiences, viewpoints and perceptions, and cultural factors and gender identity backgrounds The CTN team’s emotional health and group cohesiveness are addressed in assorted ways; however, personalized “survival kits” are encouraged for each team member based on their needs and preferences (Klonoff, 2010, 2011). Team building and sustenance activities include a designated therapist in all staff meetings reading a spiritually uplifting quote chosen from a “treasure box” of contributions by various team members, a weekly psychotherapist-­led meditation, or “patient win” anecdotes about fresh triumphs. “Verbal presents” or “attaboy” recognition of team members’ efforts to promote patients’ recoveries, and tokens of appreciation through weekly disbursement of small coins to one another for embodying leadership, teamwork, and going the extra mile also symbolize the program’s core values, mission, passion, and hopeful perspectives. Other “professional greenhouse” team-­building activities are periodic social events and retreats (Klonoff, 2010; Skovholt, Grier, & Hanson, 2001). A team-based care team network has also been established to provide funds and gifts for team members experiencing health and other hardships. Natural discouragement and frustrations are validated and aired within a safe space in team meetings, counterbalanced with beneficial reframing and replenishing activities such as sharing vignettes and “lessons learned” about patient graduates, restatement of stabilizing adages; articles and retreats regarding team dynamics; retrospective analyses to cultivate growth and avoid preventable errors and pitfalls; and “Schwartz Round” debriefings and guest speakers during times of strain and crisis, for instance, chaplaincy services when someone dies (Klonoff, 2011, 2015; Lacerenz et al., 2018; Pepper, Jaggar, Mason, Finney, & Dusmet, 2012; Salas et al., 2018). Maintaining good team relationships through self-­compassion, self-­reflection, and ownership is at the forefront, as this sets the tone and pace for kindhearted care in the program milieu as well as how clinicians model their own behavior when they encounter inevitable frustrations, obstacles, and triumphs (Klonoff, 2015; Pepper et al., 2012).

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Introduction to Neurorehabilitation

LE S SO N S LE A R N E D 1. Foundational concepts of post-acute neurorehabilitation, including holistic milieu interventions, begin with working definitions of psychotherapy (for the patient and support network), awareness, acceptance, realism, and sense of self. 2. Impaired self-­awareness is the understanding and acknowledgment of postinjury strengths and difficulties and their functional implications. It is impacted by neurological, psychological, social, and cultural factors and operates on a fluid continuum. Better awareness bodes well for optimized outcomes. Acceptance necessitates coping mechanisms and embracement of compensations. It is not synonymous with giving up or resignation, but rather bearing the limitations without resentment, and with grace and a futuristic outlook. 3. Realism is grounded in adjustment, which is subdivided into adaptation, intrapsychic assimilation, and existential assimilation. Realism requires a positive disability identity and proper goal setting. Sense of self is the essence of one’s being. Ameliorating narcissistic injury and reconstructing a cohesive sense of self after brain injury require exploration of loss experiences intermingled with postinjury recovery, transcendence, redefinition, and posttraumatic growth. 4. The psychotherapist takes the lead in determining the patient’s and support network’s baseline awareness, acceptance, and realism so as to facilitate cogent goal setting. Comprehensive evaluations with user-­friendly bell curves and gradient diagrams are presented to the patient and family by the core team. Multiple medically necessary holistic treatment approaches and modalities are utilized, along with a myriad of group therapy possibilities. The application to the “real world” enables better self-­esteem, quality of life, and a purposeful, valuebased existence. 5. Preeminent for any movement toward optimal awareness, acceptance, and realism is establishing a working alliance with the survivor and his or her support network. Key components are interpersonal trust, empathy, a person-­first approach, and sensitivity to negative societal attitudes and stereotypical responses. Emphasis should be placed on practitioner traits, team dynamics, overlapping layers of culture, and potential resistance factors (occasionally necessitating probationary status). The working alliance should be operationalized and regularly processed in a bidirectional manner. 6. Frequent staff meetings employing ambidextrous leadership should address survivors’ and families’ needs but must also replenish the team’s energies and emotional health critical for maximizing patients’ recovery and program sustainability.

FORM 1.1

Multidisciplinary Evaluation Representations Slight

* Degree of self-relative impairment

Within normal limits

%iles

98

SEVERE IMPAIRMENT

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

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2 How to Construct Quality Neurorehabilitation in Hospital and Community Settings with Christopher St. Clair, Robert Spetzler, and Thomas Bour

This chapter describes techniques for constructing quality neurorehabilitation in the hospi-

tal and community, with an emphasis on post-acute settings. Administrative, financial, and clinical building blocks are delineated, also utilizing the CTN as a holistic milieu model.

Choosing a Model for Your Neurorehabilitation Center The rehabilitation care continuum has multiple phases, including inpatient (acute) rehabilitation facilities, long-term acute care, subacute or skilled nursing facilities, and home health services (American Medical Rehabilitation Providers Association [AMRPA; amrpa. org]; Center for Medicare and Medicaid Services [CMS; cms.gov]; Vogl, 2011). Modern-­day community-­integrated, post-acute, outpatient neurorehabilitation programs take several formats: 1. Neurobehavioral programs in residential settings for patients needing intense behavioral management 2. Residential community programs for patients requiring full supervision and emphasizing community integration 3. Outpatient neurorehabilitation programs for patients living in the community 4. Home-based programs that may also have supplemental outpatient interventions 5. Comprehensive holistic programs for outpatient integrated multimodal neurorehabilitation (Malec & Basford, 1996; Trudel, Nidiffer, & Barth, 2007; see Braunling-­ McMorrow, Malec, Groff, & Salisbury, 2022, for a review) 30



Constructing Quality Neurorehabilitation in Hospital and Community Settings 31

Early initiation of high-­intensity treatment with a coordinated, multimodal approach promotes both physiological and functional recovery (Albert & Kesselring, 2012). The underlying component of the recovery process is “neural plasticity,” which refers to plastic changes or regeneration of tissue in the nervous system, such as regenerative sprouting or axonal regrowth and creation of new anatomical connections (Horwitz & Horwitz, 2013). This is also known as structural compensation or dynamic reorganization (Horwitz & Horwitz, 2013). Moreover, functional compensation or “vicarious functioning” structurally reroutes connections to alternative functional zones that now take over the affected ability (Horwitz & Horwitz, 2013). Second, neurorehabilitation efforts heavily rely on compensatory techniques, which are tools and strategies designed to “get around” problem areas, including adaptive devices and environmental modifications (Klonoff, 2010; Lin & Hawes, 2015). The crux is the ecological validity and generalization of skills from the clinic to real life (Braunling-­McMorrow et al., 2022; Klonoff, 2010). What follows is a brief overview of various modes of post-acute neurorehabilitation. A comprehensive outpatient rehabilitation facility (CORF) is a medical entity that provides outpatient diagnostic, therapeutic, and restorative interventions. Comprehensive outpatient services house a variety of disciplines in a common location for individualized speech and language, physical and occupational therapies and contracted neuropsychological therapy, physician services, respiratory therapy, prosthetic and orthotic devices, social and psychological services, nursing care, and supplies and durable medical equipment (CMS [cms.gov]; Klonoff et al., 2003; Medicare Rights Center, 2018). These circumscribed therapies advance neurological patients’ functionality in the home and community such as mobility, communication, and cognitive abilities (Klonoff et al., 2003). Practice, skill applications (e.g., reduced supervision in the home, resumption of chores and duties, and increased safety awareness), and implementation of compensatory tools are paramount (Coetzer, 2008; Klonoff et al., 2003). Research confirms that standard multidisciplinary neurorehabilitation with specific individual therapies that remediate cognitive deficits and functional impairments is efficacious for neuropsychological functioning as well as community integration and productivity (Cicerone et al., 2008). Community residential as well as home- and community-­based neurorehabilitation models provides treatment in natural environments where the patient resides. Complex cognitive, social, and behavioral challenges are addressed using therapeutic supports to reintegrate patients into their homes and communities. Home- and community-­based neurological programs provide various forms and frequencies of therapies, and also rely on family members for day-to-day care and carryover of instruction (Klonoff et al., 2003). Various community-­based permutations that are client-­centered and pragmatic are possible, including low-­intensity (i.e., two sessions per week), long-term programs with a tapering schedule, so as to better address chronic emotional adjustment (Coetzer, 2008). Clinical research findings support gains in instrumental activities of daily living (IADLs), functionality, independence, productivity, community participation, and social integration for both residential as well as home and community models (Hopman, Tate, & McCluskey, 2012). Supported employment constitutes work placement for those who need intensive and ongoing support. As a “place then train” tactic, the job is matched to the patient’s attributes and abilities, job demands, and work interests. Interventions focus on social and work skills

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Introduction to Neurorehabilitation

training, job adaptation and modification, and counseling (Texas Health and Human Services, 2019; Wall, Rosenthal, & Niemczura, 1998; see Klonoff et al., 2003, for a review). Extended services are available in the form of work supports, psychotherapy, and family education so as to keep the individual competitively employed for the foreseeable future (see Klonoff et al., 2003, for a review). The choice of neurorehabilitation model should rely on evidence-­based practice predicated on clinical expertise, robust program evaluation systems, systematic research, and analysis of the cost-­effectiveness (Braunling-­McMorrow et al., 2022; Sackett, Rosenberg, Gray, Haynes, & Richardson, 1996; van Heugten, 2017). Considerations are effectiveness (i.e., if, how, and for whom the treatment works); efficacy (i.e., does it help?); and efficiency (i.e., the cost–­benefit ratio) (van Heugten, 2017). Multimodal assessments to monitor progress and evaluate treatment, as well as eclectic interventions, are the backbone (­Winegardner, van Heugten, Ownsworth, & Wilson, 2017). Efficacy is evaluated using meta-­analyses and systematic reviews based on randomized controlled trials, single-­case experimental designs, and economic evaluations defined as comparative analyses of alternative interventions based on costs or resource use, and consequences or outcomes (van Heugten, 2017). Once underway, new rehabilitation programs require informative internal evaluation systems. A valuable outcome measures information system allows for sound management decision making, defines quality improvement, and propagates valid and reliable data for strategic planning (Swan et al., 2022; Vogl, 2011). Stakeholder input from patients, their support network, referral sources, payers, workers, and leadership is crucial. Irrespective of whether the evaluation system is already established or custom-­built, it should be cost-­ effective and standardized, prioritize goal attainment, enable measurements over time, focus on the patient and program levels, be reliable and valid, and allow comparison with similar facilities (Braunling-­McMorrow et al., 2022; Evans, 2020; Vogl, 2011). Outside accreditation agencies (e.g., The Joint Commission and the Commission on Accreditation of Rehabilitation Facilities [CARF]) can aid programs in maintaining best practice and quality improvement through reflective learning and feedback (AMRPA [amrpa.org]; CARF [www. carf.org/home]; Greenfield, Kellner, Townsend, Wilkinson, & Lawrence, 2014; Hinchcliff et al., 2012; The Joint Commission [ jointcommission.org]). Providers need to share understandable outcome data to inform prospective patients and other relevant parties about programs’ approaches, efficacy, and right-fit characteristics, which also supports funding advocacy (Braunling-­McMorrow et al., 2022). Overall, the cost-­effectiveness of neuropsychological rehabilitation presupposes benefits that are direct (i.e., freedom from illness, suffering, and distress) and indirect (e.g., income generation and occupational possibilities); however, more analysis is warranted in these areas (Worthington, Ramos, & Oddy, 2017). This will necessitate better homogeneity in models and patient characteristics; double-­blind randomized controlled studies; standardized measures of psychosocial functioning and outcomes; research funding; and larger multicenter studies (Ford et al., 2016; Malec & Basford, 1996; Trudel et al., 2007; van ­Heugten, 2017). Forerunners of the holistic milieu approach (Ben-­Yishay, 1996; Caetano & Christensen, 2000; Prigatano et al., 1986; Wilson, 2017a) proffered the commonalities of individual and



Constructing Quality Neurorehabilitation in Hospital and Community Settings 33

group interventions for cognitive, behavioral, emotional, and psychosocial difficulties; building self-­awareness (objectively perceiving the “self” while maintaining a sense of subjectivity); and resuming a work life (Coetzer, 2008; Prigatano & Schacter, 1991a). Our current definition of holistic neurorehabilitation is an interactive approach to treat the “whole person” using multimodal individual and group therapies in the fields of neuropsychology/ rehabilitation psychology, physical therapy, occupational therapy, speech therapy, vocational counseling, recreational therapy, psychiatry, social work, and nutrition, with physiatry oversight. The patient and his or her support network actively collaborate to ascertain and attain functional goals in the home and community, including productive school and work outcomes. In holistic milieu settings, cognitive, language, communication, physical, emotional, functional, interpersonal, spiritual, and quality-­of-life aspects are addressed using restorative and compensatory multidisciplinary, interdisciplinary, and transdisciplinary approaches whereby the collective community’s observations, feedback, camaraderie, nurturance, and empathy are healing entities for the patient, his or her family, and a wider support system (Klonoff, 2010; Klonoff et al., 2003). Clinical research has identified positive outcomes after holistic neurorehabilitation with better neuropsychological functioning, community integration, psychosocial functioning, and a meaningful and satisfactory life both with acute and more chronic injuries (Ben-­Yishay & Diller, 2011; Cicerone, Mott, Azulay, & Friel, 2004; Klonoff et al., 2006; Langenbahn et al., 2022; Malec, Smigielski, DePompolo, & Thompson, 1993). Key elements are a “safe” environment with a structured daily schedule; metacognitive processes of self-­appraisal and self-­monitoring; and an emphasis on building awareness, acceptance, self-­regulation, and self-­efficacy (Cicerone et al., 2008; Langenbahn et al., 2022; Malec & Basford, 1996). Increasing coping mechanisms, including compensation-­training and problem-­solving strategies; group participation fostering peer support and cohesion; and a strong therapeutic alliance with patients and families, are also paramount (Ben-­Yishay & Diller, 2011; Cicerone et al., 2008; Klonoff et al., 2001; Langenbahn et al., 2022; Malec & Basford, 1996; Prigatano et al., 1994). In an updated, systematic, evidenced-­based literature review, Cicerone and his colleagues (2019) reconfirmed that post-acute comprehensive holistic neurorehabilitation should be provided to ameliorate functional, cognitive, and psychosocial challenges after various etiologies regardless of the injury’s severity or chronicity. Interventions should be client-­centered and goal-­directed, and include group therapies and computerized cognitive retraining activities (Cicerone et al., 2019).

Implementing and Managing a Post‑Acute Neurorehabilitation Program Creation of any new health-­care venture in the form of post-acute neurorehabilitation takes administrative and clinical buy-in and ingenuity (Swan et al., 2022). Sensitivity to the continuum of care needs through an inclusive array of health services that span the levels and intensity of care is required (Zangwill, 1947; see Zusman & Benzil, 2017, for a review). Ideally, neurorehabilitation plots a pathway of care with smooth transitions between acute-care services, inpatient neurorehabilitation, and various levels of outpatient interventions, all

34

Introduction to Neurorehabilitation

of which are client-­focused and family-­centered (Rumble, 2013; Winegardner et al., 2017). Informational continuity (i.e., knowledge regarding the patient that bridges care); management continuity (i.e., shared-­care protocols that are consistent, flexible, and delivered in a complementary and timely manner); and relational continuity (i.e., defined as consistent contact with the patient throughout the neurorehabilitation process) all enable treatment connectedness and coherence (Haggerty et al., 2003).

Staffing Your Program Administratively and Clinically In an ideal hospital environment, a chief operating officer and a director of rehabilitation services would provide finances, administration, and program development know-how. Similarly, clinical and business input from big picture thinkers is obligatory, such as from a neurosurgeon, neurologist, and physiatrist. Physicians who provide medical oversight often take the form of an employed or contract-­based medical directorship (Zusman & Benzil, 2017). Attunement to best practice clinical pathways necessitates discharge planning in each phase of care (Zusman & Benzil, 2017). Practically speaking, a checkbox system on the hospital discharge papers prompts neurosurgeons, neurologists, and other physicians or health-­care providers to refer patients for post-acute neurorehabilitation. The Lean Six Sigma is a scientific evidence-­based methodology for improving operational effectiveness (www.goskills.com/Lean-Six-Sigma) and is applicable to creating and sustaining post-acute neurorehabilitation ventures. Using DMAIC (define, measure, analyze, improve, and control), it counterbalances reduction of waste (“lean principles”) and efficient process improvements (Almorsy & Khalifa, 2016; Wackerbarth, Strawser-­Srinath, & ­Conigliaro, 2015). Alternatively, “value-based models” link provider reimbursement to quality and safety measures, provision of suggested care, and avoidance of wastefulness (Zusman & Benzil, 2017). The current market has utilized accountable care organizations (ACOs) or other hybrid financial relationships so that independent practitioners can partner in program development to optimize care coordination and patient outcomes (Zusman & Benzil, 2017). Although theoretical paradigms are sometimes useful, often business training in academic settings does not translate well to the everyday challenges and choices when creating a new neurorehabilitation program. A conceptualization that equally weights the biological/ physical, psychological, and social needs of patients and caregivers is important (Glintborg & Hansen, 2016). Essential to successful implementation and expansion is to “keep what is important, important” with an eye on the optimal model and the right individuals to drive it (Chris St. Clair, personal communication, February 1, 2019). Despite the formidable administrative and financial complexities, health-­care professionals should have the ethical obligation of fostering the “return on investment” by maximizing care across the continuum of care for the good of patients and their support network, the welfare and ultimate cost savings to society, and the best image and reputation of health-­care entities (Diller, 1990; Ma, Chan, & Carruthers, 2014; Prigatano, 1999). Ultimately, a pragmatic and fluid approach is most desirable for launching such a project. A guiding principle is “moral courage,” whereby collective growth and dynamism are fostered by developing a system that is more complex, nuanced, and vital (Simola, 2018).



Constructing Quality Neurorehabilitation in Hospital and Community Settings 35

Foundational factors for creating any type of post-acute neurorehabilitation program include (1) conducting a needs analysis based on patients’ progression from survival of trauma through to reintegration into society, (2) deciding what the neurorehabilitation program needs to offer toward patient care objectives, (3) exploration of reimbursement opportunities, and (4) identifying ways to map and grow the program. Administrators need to steadfastly prioritize patient care (vs. financial remuneration) and take a perspective of availability and helpfulness to advance this mission. Service demand and vision are the seedlings for a new endeavor. For example, one stepwise option is a “bridge” program between comprehensive outpatient services and a fuller-­scale holistic milieu program that incorporates some beginning aspects of holistic milieu neurorehabilitation, such as two to three group treatment options. This enables a “something is better than nothing” enterprise, from which a larger holistic milieu atmosphere can germinate and grow. An overriding interest in realizing a full continuum of care in the disease process beyond acute interventions as well as a responsiveness mentality is crucial, with a stance of “saving a life” to “living a life” (Klonoff, 2016). Remember, it will take considerable time and effort to build relationships with consumers and stakeholders, with an eye toward “patience and patients” (Tom Bour, personal communication, December 5, 2018). Figure 2.1 contains a sample market analysis, business proposal, and budgetary guidelines for a start-up postacute program with holistic features. The involvement of multiple physician specializations is also imperative for recognizing patients’ neurorehabilitation needs. These professionals can facilitate transfer of care throughout the continuum in acute settings (e.g., intensive care units) through to inpatient neurorehabilitation settings, traditional outpatient services, and then possibly (and hopefully) to the last step of a continuum to holistic milieu settings. Specifically, it is the knowledge of mechanism of injury, time course of recovery, and understanding of neuroanatomy and neurophysiology, on the part of the neurosurgeon, neurologist, physiatrist, psychiatrist, and family physician, that paves the way for recognizing patients’ post-acute needs and making sure the necessary services and pathways are available (Bagherpour, Dykstra, ­Barrett, Luft, & Divani, 2014; Klonoff, 2010; Lin & Hawes, 2015). Steady referral streams spearheaded by the physicians and their “buy-in” to the necessity of various neurorehabilitation pathways are therefore pivotal for patient care and the sustainability of these subprograms (Prigatano, 1999). Showcasing how post-acute services maximize their own patients’ functionality, family dynamics, and societal reintegration using clinical dialogue, as well as in-­services, conferences, and evidence-­based publications (especially in neurology and neurosurgery journals), can “win over” uninformed or skeptical physicians. Otherwise, the often neglected and devastating higher-­order cognitive, emotional, psychosocial, and functional sequelae culminate in joblessness, marital dissolutions, family discord, social isolation, and psychiatric decompensation. “Shoes on the ground” clinical leadership is also mandatory. The administrator/clinical leadership interrelationship necessitates a delicate balance of collaboration and deference to relative areas of specialization, rather than the “control and command” tactic. In our realm, clinical leadership has taken the form of a neuropsychologist, who understands programmatic and importantly the psychological aspects of the patient population and, vitally, the treating team. Preferably, there are continuity and cohesiveness within the matrix of

36

Introduction to Neurorehabilitation

Market Analysis Compare and contrast the proposed program with existing treatment options within the existing continuum of care and in the community according to: • Diagnostic eligibility • Payers • Waitlist • Average patient length of stay • Program services • Payer contracts • Admission specialist’s credentials • Designated facility/area • Other considerations (e.g., special services available such as robotics) • Costs for services • Adjunct staff (e.g., psychiatry, recreational therapy, dietitian) • Community involvements (e.g., community outings, volunteer placements) Business Proposal Needs Statement (Possible Options): a. There is a gap in the continuum of patient care in the form of . . . b. There is a need for a more intensive level of care offered by a neurorehabilitation program of X type (e.g., holistic milieu). c. The waitlist for patient care is excessive, necessitating . . . d. Patient care would be enhanced by . . . e. There is leakage of patients into the community without services or referrals to other settings. Program Description (Possible Options): a. There would be a customized plan of care with X number of therapy sessions provided by X type and X number of therapists. b. Therapies would be individual- and group-oriented, and facilitated by X types of therapists. c. Adjunct services would include . . . (e.g., neuropsychological testing and therapy, volunteer placements in the community). Patient Experience (Possible Options): a. An evaluation clinic will occur X times (e.g., twice monthly) to establish patients’ treatment plans. b. Based on the evaluation, patients will be assigned to X days per week (e.g., 3). c. Daily sessions include . . . (e.g., physical, speech, and occupational therapies). d. Weekly involvement in X group therapies (e.g., an adjustment group, pool therapy). e. All individual and group sessions are goal-based relative to an established comprehensive team plan of care under the direction of a physiatrist. Team Configuration (Possible Options): a. X (e.g., five) initial full-time employees (FTEs) increasing to X (e.g., nine) with growth to volume: • Sample: one physical therapist; one occupational therapist; one speech therapist; half neuropsychologist; half social worker; one customer service representative Financials (Possible Options): a. Anticipated insurance mix (e.g., third-party payers, state contracts, workers’ compensation, catastrophic case managers) (continued)

FIGURE 2.1.  Sample start-up considerations for a post-acute neurorehabilitation program.



Constructing Quality Neurorehabilitation in Hospital and Community Settings 37 b. Rehabilitation evaluation clinic units of service (UOS)/visit financials calculated for each discipline (e.g., physical therapist, occupational therapist, speech therapist): • Total charges per month for the evaluations c. Neurorehabilitation treatment UOS/visit financials calculated for each discipline (e.g., individual and group physical, occupational, and speech therapies): • Total weekly therapy charges d. Neuropsychology financials based on X evaluations per week, X individual psychotherapy sessions, and X groups per week: • Total weekly neuropsychology charges e. Space plan and start-up budget: • Space remodel (e.g., reception area, X private offices, treatment gym, group treatment room, clinical and office furniture) • Initial equipment • Supplies f. Next steps: • Approve business plan. • Approve start-up budget. • Identify and renovate space. • Recruit and onboard initial FTEs. Budget Factors: Projected Profit and Loss/Cash Flow Across an X-Year (5-Year) Period Constructed on the Basis of a. Revenue: • Gross (based on volume projections) • Adjustments • Net patient revenue • Ancillary service net revenue • Other operating revenue b. Expenses: • Salaries • Benefits • Supplies • Building rental/lease • Depreciation c. Total fixed expenses d. Net income (deficit) e. Annual cash flow: • Net income • Up-front capital expenditures • Depreciation • Annual cash flow • Cumulative cash flow f. Discount rate (percentage) g. Net present value h. Internal rate of return (IRR)

FIGURE 2.1.  (continued)

38

Introduction to Neurorehabilitation

administrative reporting relationships and the clinical “in the trenches” leadership; otherwise, disconnects and fragmentation occur between the business, program development, and clinical service delivery practicalities. Clinical leadership qualities deserve careful consideration; inferior choices can spell the demise of well-­meaning undertakings. Sophisticated tactical and strategic thinking, emotional intelligence, and metacognition capabilities are critical (Bass & Avolio, 1993; Klonoff, 2015). A transformational leadership culture is best for unveiling new ideas, as it cultivates innovative change and experimentation, growth, risk taking, persistence, intuition, and sensitivity to others rather than adherence to the status quo typified by transactional governance (Bass & Avolio, 1993). Programmatic “hands-on” clinical and administrative roles for the clinical leader are innovator, interpreter, mentor, advocate, mediator, orchestrater, and unifier (Klonoff, 2013, 2015; Prigatano, 1999). Attributes are vigilance, psychological mindedness, trustworthiness, proactivity, doggedness, realism, resiliency, and optimism (Klonoff, 2013, 2015). Interpersonal qualities are reflective listening skills, approachability, communicativeness, and relational caring (Klonoff, 2013, 2015; Turkel, 2014). Facilitating professional agency in decision making and a voice in self-­expression and feeling heard bodes well for the team’s fruitful collaboration (Hart, 2015). When clinical leaders display authenticity, vision, and proactivity, an “authentizoic” climate emerges; there is enhanced trust and greater constructive dialogue with individuals involved in a healthy work culture of shared values and meaningful joint accomplishments (De Vries & Balazs, 2005; Minister for Health of Ireland, 2011; Nancarrow et al., 2013). See Chapter 1 for more discussion regarding leadership and team dynamics. Budget development for any post-acute neurorehabilitation entity will require expenses associated with “people” (i.e., salary and benefits for the therapists and support staff) as well as the physical space, equipment, and other overhead necessary for treatment (Worthington et al., 2017). Based on administrative and clinical considerations, a decision should be made about the minimum number of patients and therapists. In our experience, one neuropsychologist (also the clinical director), speech therapist, occupational therapist, and physical therapist are the indispensable building blocks for holistic milieu interventions. The cohort size can be around five to six patients, allowing for a one-to-one ratio for individual therapy, and enough participants to enable some beginning small-group therapy experiences.

Financing Your Program In today’s health-­care market, there are for-­profit and non-­profit models. Although both prioritize the mission of quality care, the for-­profit culture is business-­driven so as to generate a return for investors. Non-­profits are service-­driven and are obliged to distribute earnings back into the organization or service-­area communities (Cheney, 2016). Modern-­day trends lean away from reimbursement for procedures and toward reimbursement for outcomes (Santilli & Vogenberg, 2015). In devising any post-acute neurorehabilitation program, core persons must decide the intent and “fit” of the program based on their training, preferences, market needs, funding sources, and patients’ needs. Larger hospitals, as well as non-­profit and for-­profit entities, can theoretically house a continuum of services including residential, comprehensive



Constructing Quality Neurorehabilitation in Hospital and Community Settings 39

outpatient services, and holistic milieu programs through clear referral and practice parameters that are implemented consistently and allow the patient to enter whatever form of treatment is most fitting at the time (Minister for Health of Ireland, 2011). Primary building blocks are health prevention and promotion strategies; multiprofessional team-­managed networks that ensure and promote excellence, consistency, and integration; explicit clinical actions; a community-­based approach; use of research, technology, and equipment; incorporation of a quality framework (through staff training and development, workforce planning, and accreditation of services); and intersectoral commitment (Minister for Health of Ireland, 2011; Specialised Neurorehabilitation Service Standards, 2015; van Heugten, 2017). Meaningful business, quality, and safety data must be collected and disseminated throughout the continuum, from senior decision makers through to health-­care staff to ensure a cohesive application of knowledge and system improvements (Ward, McAuliffe, Fitzsimons, & O’Donovan, 2019). The reality of any neurorehabilitation start-up program is that a large profit margin is unrealistic, particularly in the short term. A full-­spectrum service approach is advisable in order to show a positive long-term return on investment via outcomes. A long-range view of at least 5 years is needed, recognizing that there will be oscillations between financial losses, a “break even” outcome, and hopefully modest profits. Investment in high-­quality, wide-­ranging, “needs-led” neurorehabilitation at the front end (including highly trained staff) reduces length of stay as well as the cost of long-term care and other societal costs, and furthers patients’ outcomes (Bagherpour et al., 2014; Minister for Health of Ireland, 2011; Turner-­Stokes, Poppleton, Williams, Schoewenaars, & Badwan, 2012). Underpinnings of the vision are that services are local, timely, multipronged, integrated, person-­centered, participation-­oriented, focused on dignity and respect, and responsive (Braunling-­McMorrow et al., 2022; Karol, 2014; Minister for Health of Ireland, 2011). In our experience, reimbursement for holistic milieu services can emanate from third-party insurance companies; however, unless negotiated ahead of time, their coverage may be spotty, with poor reimbursement rates and often limited to no coverage for group therapies. Worthwhile and profitable is the preauthorization of services with inquiry into bundling diverse services (e.g., speech, physical, and occupation therapies) into treatment days versus individual sessions. Other better options are workers’ compensation, catastrophic case management organizations, state contracts (e.g., the Department of Economic Security Vocational Rehabilitation Services [DES VR]), and self-pay arrangements. Philanthropic contributions can be instrumental in providing “seed money” for neurorehabilitation programs. Altogether, careful setting and monitoring of contracts as well as tracking of reimbursement and denial patterns and clear-cut (yet efficient) documentation practices are critical for financial solvency. Therapists benefit from specific parameters about expected productivity, with transparent dialogue about financial realities (Klonoff, 2015). A helpful industry-­based target is 75–80% face-to-face, revenue-­producing patient-­care activities (Klonoff, 2015). The bottom line is that long-term survival of post-acute neurorehabilitation programs depends on care effectiveness, the best level of clinical and functional outcomes, and quality of life for the patient, the family and support network, the organization, community, local government, donors, and insurance companies. Clinical viability will precede financial viability!

40

Introduction to Neurorehabilitation

Case Example: The CTN The CTN (initially known as the Adult Day Hospital for Neurological Rehabilitation [ADHNR]) came into existence in January 1986. Administrators, physicians (a neurologist and neurosurgeon), and clinical director (a neuropsychologist, Dr. George Prigatano) closely collaborated based on a needs analysis and vision of implementing the last missing step of the continuum of care to integrate patients into the community. Initially, the ADHNR was intentionally small due to the prudency of testing the viability of such a program both financially and clinically. As such, the holistic milieu program depended on hospital financial support for several years, until a referral base could be established. The initial cohort consisted of eight patients with TBIs and eight therapists: neuropsychologists; a single speech, occupational, physical, and recreational therapist; a social worker; and a neurorehabilitation aide. This size was chosen with a dawning patient–­therapist community in mind. Within a couple of years, a resident in neuropsychology joined the team and the patient census slowly grew, as did the holistic milieu treatment opportunities, especially diverse group therapies. Support staff consisted of one individual who functioned in multiple capacities as a receptionist, secretary, and insurance verifier. The department philosophy has always been for a human voice to take all incoming calls rather than automated recordings, symbolizing a “human touch.” Team members’ roles were (and are) multidisciplinary (decision making and coordinated interventions based on therapists’ specific fields of training working in parallel); interdisciplinary (collaborative interfacing between therapists who share “common ground” knowledge and abilities); and transdisciplinary (“supradisciplinary” interventions emerging from the synthesis of conceptualizations and methodologies involving multiple therapists’ cross-­training and role shifting so as to address a hierarchy of problems) (Diller, 1990; Karol, 2014; Winegardner et al., 2017; see Klonoff, 2015, for a review). Contemplating effective delineation and orchestration of these roles by all facets of leadership enables viable financial, administrative, and clinical operations (Klonoff, 2015; Prigatano, 1999). Case in point: soon after commencing the program, it became obvious that the skill set of a psychiatrist was needed to address the complex emotional and adjustment needs of the patients and to guide the team in these domains. Hence, a part-time, community-­based psychiatrist and psychoanalyst joined the team in 1986. Early on, only the Home Independence and Work/School Re-Entry Programs existed. Each program started with admission and discharge criteria; these have been maintained from the beginning. Defining these components is vital for proper screening of patients and timely completion of care. Clear-cut admission and discharge guidelines assist referral sources, treating therapists, patients, and their support networks to pinpoint how and why a patient would (or would not) be appropriate. This becomes especially essential when patients are not a “good fit” and their stakeholders are struggling with accepting this reality. It behooves any start-up program to clearly delineate who the target patient population is, and what the anticipated objectives of treatment should be. Figure 2.2 encompasses sample admission and discharge criteria for the CTN Home Independence Program. Upon receipt of a physician referral, prior to admission to the CTN, patients and a member of their support system have always participated in an intake consultation with



Constructing Quality Neurorehabilitation in Hospital and Community Settings 41

Center for Transitional Neuro-Rehabilitation (CTN) Home Independence Program The Home Independence Program assists adolescents and adults leaving the acute care hospital to become independent in their homes and communities. Fundamental goals include reducing the amount of family supervision and teaching patients functional activities of daily living and life skills. Sample Admission Criteria for the Home Independence Program • A prescription from a referring physician to begin the Home Independence Program. • No significant confusion and disorientation (e.g., posttraumatic amnesia). • Sufficient cognitive and social skills to allow participation in small-group interactions within approximately 4–6 weeks of admission. • Bowel and bladder control before/early after admission to the program and independent in toilet transfers. • No extensive medical or surgical needs that would result in absence from the program more than 4 hours per week. • Independent with cueing to take medications, including insulin, during the treatment day. • No major psychiatric disturbance that interferes with the patient’s ability to function and benefit from the program, including substance abuse. Patients with a history of drug/alcohol misuse may be required to take random drug/alcohol screens, if deemed appropriate by their treating physician or staff psychiatrist. • Family members must be willing to attend family group and regular family meetings with a neuropsychologist or rehabilitation psychologist, and other relevant therapists. • Ability to tolerate four to seven sessions per day of therapy within about 1 month of admission to the program. • Willing to cooperate in a holistic milieu program and act as responsible community members. • The capacity to increase awareness and acceptance of problem areas and develop realistic goals for independent functioning in the home and community. • The capacity to progress to staying unsupervised in their homes for a minimum of 4 hours per day. General Discharge Procedures • The patient’s anticipated discharge is documented in reports after approval by the treating physician(s). Termination of services are discussed well in advance with the patient, family, physician(s), and funding source(s). On his or her last formal day of program participation (“cake day”), the patient is recognized during the milieu session and a cake or fruit platter is presented. • At discharge, a discharge report documents overall progress during the neurorehabilitation process by all treatment disciplines with discharge recommendations. These reports are reviewed in person with the patient and family prior to program discharge. • During the graduation ceremony (approximately every 6 months), certificates of achievement are provided to those who have successfully completed their goals. Families and friends of the patient and community supports are invited to attend the graduation and be a part of this celebration. Sample Discharge Criteria for the Home Independence Program • The patient has accomplished the goals of functioning as independently as possible in the home and community environments, including minimizing supervision and restrictions. This is determined by physician input, observations in the program environment by the treatment team, and collaboration with the family and community supports, as well as observations in the home and community environments through home visits, assignments, home checklists, and community outings. • Discharge necessitates a minimum of 4 weeks of home and community independence as agreed to by the treatment team, treating physician(s), patient, and family. Areas addressed include unsupervised time, self-care, judgment, mobility, communication, psychosocial adjustment, household chores, transportation, safety awareness, and community/leisure activities.

FIGURE 2.2.   Admission and discharge criteria for the CTN Home Independence Program.

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Introduction to Neurorehabilitation

the clinical director; other therapists are invited based on patients’ needs. For example, a speech therapist often participates in the consultation for aphasic patients to provide input on their appropriateness for the program, especially when significant deficits are evident that could impede group participation. Topics addressed in the consultation have been provided previously (see Klonoff, 2010) and are contained in Table 2.1. In general, information is gathered about the patient’s preinjury psychosocial history; injury-­related factors; and input from the patient and family regarding their perception of current physical, cognitive, emotional, functional sequelae, and goals. Importantly, any history of prior medical, developmental, psychiatric, alcohol, substance abuse, and/or legal problems is obtained. An overview is provided about the philosophy, goals, and expectations of program participation, including for the caregiver(s). A primary facet of the intake interview is to decide if the patient (and support network) have the requisite practical commitments and psychological readiness and fortitude to engage in intensive neurorehabilitation such as the degree of cooperativeness, coachability, and motivation; openness to developing and implementing compensations; willingness to “trust the process”; and the capacity to improve awareness, acceptance, and realism (Klonoff, 2010). The consultation documentation needs to be cogent and succinct with an emphasis on a clear diagnostic conceptualization and advice for “go/no-go” choices for appropriateness for holistic neurorehabilitation (Karol & Sturm, 2017; Klonoff, 2010). For complicated scenarios, follow-­up phone consultations and/or summary letters with key referral sources, and when suitable, the patient and support system, are beneficial (Karol & Sturm, 2017). Ethically, if the patient is not ready, other therapy resources should be proffered (Karol & Sturm, 2017; Klonoff, 2010). Referring to attendees as “patients” versus “clients” was intentional; the rationale is that these are people who have all sustained a neurological diagnosis and who are seeking medical/neurorehabilitative services. This becomes a part of the “awareness and acceptance” process (see Chapter 1) in facing the realities of their conditions. In the early days, the injury etiology was mostly moderate to severe TBI, and most patients were young and seeking reinvolvement in school or work (Klonoff et al., 2003). Like other holistic milieu centers, patients enrolled at the same time and spent an average of 5 months in the program (Klonoff et al., 2003). At its inception, patients participated in a combination of medically necessary individual and group therapies, although the number and nature of these groups were limited to cognitive retraining (see Chapter 3); a psychoeducation group (see Chapter 3); group psychotherapy (see Chapter 4); and milieu sessions (see Chapter 8; see also Prigatano, 1997, for a review). In consonance with the holistic milieu method, family members were integrally involved in treatment primarily through their attendance at a weekly family group (see Chapter 9; Klonoff, Lamb, Henderson, Reichert, & Tully, 2000; Prigatano, 1999). Within the first 3 years, other groups were added: current events (see Chapter 8), memory compensations group (see Chapter 3), and community outings (see Chapter 5; Klonoff et al., 2000).

Evolution of the CTN Program Gradually, the CTN program has expanded by a cohort of five patients and five therapists, roughly every 3–4 years. This step-by-step procedure allowed timely analysis of direct



Constructing Quality Neurorehabilitation in Hospital and Community Settings 43 TABLE 2.1.  Topics for the Initial Consultation Demographics • Age • Gender • Date and place of birth • Educational history (grade/degree completed and academic status) • Marital status (current and past) and current family composition • Occupational history (overview of current and past jobs) • Living situation and activities of daily living with level of independence Social history • Preinjury financial status • Preinjury hobbies and leisure activities • Preinjury alcohol and nonprescription drug use • Preinjury legal problems (e.g., arrests) Medical history • Developmental history • Previous brain injury or disease (e.g., loss of consciousness, seizures, high fever) • General medical history (systemic illness; comorbid disease) • Prior psychiatric and psychological treatment (self and family) • Childhood experiences/traumas • Prior medications Injury-related data • Circumstances of injury (date, location, and surrounding events; mechanism of injury; presence–absence of paramedics and/or hospitalization/surgery) • Absence–presence of loss of consciousness and length of time • Estimated period of posttraumatic amnesia • Glasgow Coma Scale score • Radiographic findings (computed tomography [CT] and/or magnetic resonance imaging [MRI]) Subjective report of postinjury status • Current cognitive, language, physical, and functional status • Perception of course of recovery • Use of strategies or compensations (e.g., datebook, pillbox) • Emotional status (e.g., anxiety, depression, self-harm) • Sleep, appetite, and libido • Alcohol and nonprescription drug use • Basic and instrumental activities of daily living • Degree of unsupervised time • Ability to handle finances • Hobbies and leisure activities • Driving status/other transportation • Sources of income • Work status • Legal problems • Presence–absence of litigation or financial disincentives • Goals of neurorehabilitation Current medical treatment • Rehabilitation (overview and perception of proposed needs) • Medical management (other medical services/practitioners involved) • Medications, including psychotropics • Medical complications (e.g., pain, seizures)

Note. From Klonoff (2010). Copyright © The Guilford Press. Adapted by permission.

44

Introduction to Neurorehabilitation

effects of actions and changes with course corrections as indicated (­Thiétart & Forgues, 1995). Approximately 1,075 patients have been served. Decisions regarding how and when to expand were based on multiple inputs: hospital administrators; physicians (i.e., a neurosurgeon in a leadership position who believed in the model and a physiatrist who is the medical director); and the clinical director. The progression was mindfully done, with particular attention paid to maintaining the milieu ambiance characterized by personalized care in a setting emphasizing commonality and camaraderie. Practically speaking, the expansion was facilitated through strong in-house protocols from more acute hospital settings; clinical dialogue with outside physicians and third-party referral sources; conference presentations; and evidence-­based publications. In tandem with this, the financial viability materialized through hospital contracts with third-party insurance companies for the Home Independence Program. For the Work Re-Entry Program, funding relationships were built with workers’ compensation and, importantly, a renewable contract with DES VR Services, with a joint mission of returning patients to competitive employment in whatever capacity they could muster. The name of the program was altered in 1993 (under this book author’s leadership) to better reflect the nature and intent of the neurorehabilitation. After a few years, the program shifted from a set cohort where all patients started as a “class” to open entry, open exit. Besides facilitating quicker admissions, patients could observe the full spectrum of the neurorehabilitation progress and “see the light at the end of the tunnel” when peers successfully graduated (“cake day”; see Chapter 8; Klonoff, 2010). New patients were welcomed and mentored by “veterans,” through a formalized “ambassador” arrangement, by which a seasoned participant was paired with a new admit to aid with orientation and early socialization. Over time, the CTN has added neurorehabilitation tracks, starting with the Transitional Program for patients who have accomplished some elements of the Home Independence Program but are not ready for the Work or School Re-Entry Programs. A Refresher Program and Fast-Track Program were then added. The inception of these programs developed based on a needs analysis and “outside of the box” mentality, recognizing that some previously discharged patients in the Refresher Program need a “tune-up” based on compensation training and new life events. Others with milder injuries enroll in the Fast-Track Program when needing a quicker, less intensive version of therapy so as to expeditiously return to productive work and school (Klonoff, 2015). Once patients complete the evaluation portion, they are assigned to a designated program that meets their holistic goals. A plan of care is created by each discipline that the referring physician then signs off on initially, at regular intervals (e.g., 90 days), and when medical events affect the treatment course. The eclecticism of the program also evolved based on responsiveness to patient needs with a multipronged and person-­centered orientation. For example, initially, about 75% of the patients had sustained a TBI. Having a more limited etiology to start simplified and streamlined the process of identifying salient treatment directions within a new program atmosphere. Over time, as the program found its bearings and stabilized, this proportion decreased by intermingling other etiologies such as stroke, aneurysm, arteriovenous malformation, seizure disorders, hydrocephalus, anoxia, and brain tumors (Klonoff, 2016; Klonoff et al., 2000, 2006). Likewise, the chronicity has moved from mostly acute injuries



Constructing Quality Neurorehabilitation in Hospital and Community Settings 45

(a few months) to anywhere from a few weeks postinjury to many years postevent, such as for patients with birth-­related or early life neurological events (Klonoff et al., 2006). The age span has grown from adolescents (age 14) to people in their 80s. Of note, there is a comingling of the various programs, injury etiologies, and other patient characteristics within all aspects of the milieu, also for group therapies. This heterogeneity enriches the therapeutic experience through mentorship and bonding, yet core commonality of the recovery journey. More recently, “carve out” programs have been developed for underserved patient populations such as higher-­grade brain tumors and multiple sclerosis, as well as younger and older patients who may need only a subset of services. A mindful roadmap for expansion was predicated on the stability of the original template; an inventive and responsive administration; a therapy team that is adaptable and farsighted; as well as evidence-­based tenets of how to maximize patients’ meaningful functional gains in the home and community (see Chapter 10; Perumparaichallai, Lewin, & Klonoff, 2020). On a cautionary note, patients with certain diagnoses (e.g., postconcussion syndrome or comorbid posttraumatic stress disorder) may not mix well with a more standard holistic milieu neurorehabilitation program, unless there are specialized adjunct services to meet their unique requirements. Leadership positions have grown and diversified in conjunction with program expansion. Due to greater business and operational needs, a practice manager was hired at the point when there were approximately 20 patients, which was around 2012 (Klonoff, 2015). This changed to a department manager, with both clinical oversight of day-to-day therapist activities (e.g., time and attendance, documentation, clinical decision making) as well as business and operations. Two program coordinators also assist with finances, quality patient care, service integration, outcomes, and growth. As the clinical director, the neuropsychologist remained responsible for overseeing overall clinical service delivery and complex personnel management issues, as well as the short- and long-range mission, cohesion, and program development. Ideally, business managers have a foundation of passion for the neurorehabilitation mission, coupled with clinical training as a therapist and business training. This leadership arrangement optimizes the best-­practice clinical, business, and operations and allows a “divide and conquer” scenario. See Figure 2.3 for sample job components of the clinical director, department manager, and rehabilitation program coordinator. In the context of provision of care for up to 50 patients, the standard clinical team is made up of 36 therapists: (1) six neuropsychologists, (2) two rehabilitation psychologists, (3) one neuropsychology resident, (4) 10 speech therapists (five full time and five part time) with one vocational specialist, (5) four physical therapists (three full time and one part time), (6) eight occupational therapists (five full time and three part time), (7) two recreational therapists (one full time and one part time), (8) one part-time psychiatrist, (9) one part-time dietitian, and (10) one part-time social worker. The team interfaces very closely with the medical director, who is a physiatrist. Utilization of part-time and on-call therapists ensures flexibility when the census drops and accommodates talented therapists who may be juggling assorted roles. However, the part-time employees must be compatible with the team and attend enough staff meetings (e.g., 50%) to be part of unified treatment. Otherwise, interventions become fragmented (Karol, 2014; Klonoff, 2015). The increase in support staff was on a ratio of one individual per cohort of about eight patients, assuming differentiated roles of receptionist/secretarial skills, insurance

46

Introduction to Neurorehabilitation

Sample Job Duties of a Clinical Director (Neuropsychologist) • Oversee and foster the mission and vision. • Cultivate program development and growth. • Coordinate with the administration and medical director regarding business, programmatic, personnel, and clinical ideas and concerns. • Maximize patient care and outcomes. • Oversee patient admission process including intake consultations. • Examine and guide patients’ progress and goal setting. • Address complicated patient/family issues. • Monitor departmental productivity and census. • Set priorities, approve, and modify the program budget. • Oversee departmental documentation. • Supervise neuropsychologists, rehabilitation psychologists, and therapists. • Train new and mentor existing team members. • Manage personnel. • Conduct annual evaluations. • Manage performance. • Administer Commission on Accreditation of Rehabilitation Facilities. • Administer Joint Commission. • Build community partnerships. • Develop and maintain philanthropic relationships (foundation support). • Research project administration. • Generate scholarly articles and presentations. Sample Job Duties of a Department Manager • Oversee departmental productivity and census. • Develop and actively monitor the program budget. • Oversee patient treatment authorizations and billing. • Coordinate with the clinical director, rehabilitation administration, and medical director regarding operational and administrative ideas and concerns. • Monitor departmental scheduling for patients and therapists. • Oversee third-party contracts and collections. • Manage personnel. • Supervise nonpsychologists (therapists and support staff). • Onboard new staff. • Oversee time and attendance, health benefits, and protocols for paid time off. • Conduct annual evaluations. • Performance management. • Train new and mentor existing team members. • Oversee departmental education and therapists’ continuing education requests. • Manage facilities. • Oversee departmental supplies and equipment needs. • Develop and monitor departmental documentation processes. • Supervise daily documentation. • Attend hospital management meetings. • Function as departmental liaison for neurorehabilitation continuum of care. • Oversee quality assurance measures and reports. • Supervise CARF preparation and process. • Manage Joint Commission preparation and process. • Grow referral sources through marketing and networking activities. (continued)

FIGURE 2.3.  Sample job duties of a clinical director, department manager, and rehabilitation program coordinator.



Constructing Quality Neurorehabilitation in Hospital and Community Settings 47 • Coordinate philanthropic operations. • Manage research project operations. Sample Job Duties of a Rehabilitation Program Coordinator • Develop or enhance the departmental service line and continuum patient experience. • Assist with the onboarding of new staff and ongoing training of clinical therapists. • Help develop and maintain clinical policies and procedures. • Work with the department manager and clinical director to identify, promote, and implement new technology. • Participate in the planning and provision of educational opportunities for therapists. • Contribute to annual business/budget planning with the department manager and clinical director. • Participate in customer satisfaction enhancement. • Organize, participate, and report on quality initiatives and establish action plans to enhance short- and long-term outcomes. • Help maintain specialty accreditations (Joint Commission, CARF). • Assist in growing referral sources through marketing and networking activities. • Maintain a presence and leadership on internal and external boards, task forces, and committees.

FIGURE 2.3.  (continued)

authorization/reauthorization, report editing, and scheduling (with involvement of the department manager). Noteworthy is that therapists are solely focused on patient care, while competent ancillary staff shoulder the often unwieldly insurance verification and billing responsibilities (Klonoff, 2015). This delineation has produced positive morale within the team, who otherwise feel overburdened by complicated and sidetracking nonclinical obligations. Maximizing therapists’ “job fit” also curtails emotional drain during change initiatives (­Boudrias, Morin, & Brodeur, 2012). Of note, some of the participants are in the clinic part-time, as they are transitioning into the program for evaluations; injury severity and tolerance for a lengthy daily schedule are also taken into account. Others who are immersed in academic settings (e.g., high school, community college, or university) or who have actively reintegrated into the community (e.g., volunteer or competitive employment) also attend on a part-time basis. It is estimated that this applies to generally 30–40% of the overall census. The rest of the patients attend the program 4–5 days per week, for 4–6 hours per day. It is crucial to monitor the size of the holistic milieu program to preserve core characteristics. Otherwise, a silo effect within the structure can inadvertently emerge both with the therapists and patients (Klonoff, 2015). Likewise, the number and breadth of group therapy opportunities have blossomed based on patients’ needs and the inventive, imaginative spirits of a transdisciplinary team. Currently, there are 22 options; they do not run concurrently, and patients are fluidly assigned based on medical necessity, plan of care, and goal appraisal (see Chapter 1). It is important to note that growing pains will be an inherent part of the creation and broadening of any post-acute neurorehabilitation services; chaos theorists propose that even small changes can have large effects on systems (Otten & Chen, 2011; Thiétart & Forgues, 1995). Organizations are nonlinear, dynamic, and consequently, at times chaotic (see Otten

48

Introduction to Neurorehabilitation

& Chen, 2011, for a review). There will be periods of stability interspersed with forces of transformation and destabilization related to politics, external forces, random events, and contradictory initiatives (Thiétart & Forgues, 1995; see Klonoff, 2015, for a review). Experimentation, incoherence, and diverse and diverging endeavors create an enriched new order (Thiétart & Forgues, 1995). Terminology such as “punctuated equilibrium” and the “organizational culture of resilience and resistance” capture and normalize these oscillations between episodic decomposition and revitalization (see Klonoff, 2015, for a review). Within the chaos and adaptation theoretical frameworks, reestablishment of underlying order during transitions will need to focus on group collaboration and cohesiveness, the environment, and adaptation (Roy, 2009; see Otten and Chen, 2011, for a review). Ideally, moderate openness to change-­promoting information allows flexible responsiveness to developmental transitions, enabling advancement and vigor in all neurorehabilitation ventures (Simola, 2018).

LE S SO N S LE A R N E D 1. A multimodal, post-acute, outpatient neurorehabilitation process promotes physiological and functional recovery that can be facilitated through comprehensive outpatient services, community residential and home and community-­based programs, supported employment models, or holistic milieu neurorehabilitation. The chosen model should rely on evidence-­based practice predicated on clinical experience, robust program evaluation, systematic research, and analyses of cost-­effectiveness. 2. Embedded in a transformational leadership culture, the viability of any neurorehabilitation program across the continuum will take vision, competency, persistence, ingenuity, experimentation, and risk taking about business, operational, personnel, and clinical practice issues. Key are personnel, “educable” physicians and administrators who have “bought in,” and a direct reporting relationship with highly capable and dedicated clinical and medical leadership at the programmatic level. 3. Foundational administrative factors are a needs analysis, establishment of patient-­ care goals, budgetary allocations, and identification of reimbursement options, mechanisms to track financial viability, and creation of mechanisms to grow the program. The process will need to be practical, fluid, and, first and foremost, patient-­centered. Expect that a large profit margin is unlikely for at least 5 years and plan accordingly with diverse funding opportunities predicated on top-notch documentation, impressive outcome metrics, and fostering business and clinical relationships with payers. 4. Carefully define admission and discharge criteria with resources for unsuitable referrals. With a “something is better than nothing” orientation, it may be prudent to begin with a pilot-sized, holistic milieu program with multidisciplinary, interdisciplinary, and transdisciplinary approaches and overarching functional, community goals. Consider an open entry/open exit format for heterogeneous



Constructing Quality Neurorehabilitation in Hospital and Community Settings 49

diagnoses to accommodate immediate admissions and enhance the treatment journey. Select a feasible number of medically necessary group interventions properly counterbalanced with individual treatment options. Recognize that some patients may need to start part-time based on their injury acuity and overall readiness. 5. Include at least one full-time therapist from core disciplines for holistic treatment and build the administrative structure, medical oversight, patient census, and team composition judiciously based on experience and successes. However, limit the rate of growth and overall census so as to preserve personalized care and a sense of connectedness and solidarity. Expect “growing pains” with thriving periods punctuated with episodes of destabilization.

II

CLINICAL APPROACHES AND TECHNIQUES

3 Techniques to Address Cognitive Skills with Heather Caples

C LI N I C A L V I G N E T TE Luna was a 22-year-old female who sustained a traumatic brain injury (TBI) as a result of a car accident; the toxicology report indicated she was inebriated. Initial neuroimaging revealed left frontal and temporal hemorrhagic contusions, a subarachnoid hemorrhage in the left frontal lobe, and diffuse axonal injury. With physiatry oversight, after Luna’s acute hospitalization and participation in therapies at a comprehensive outpatient rehabilitation facility (CORF), she was admitted to the CTN Work Re-Entry Program 8 months post TBI. Luna was very motivated toward her holistic therapies as she yearned to return to work as a bookkeeping clerk, a position she had begun only a few months earlier. She was particularly enamored by cognitive retraining exercises, as with time, she could appreciate the direct application of the strict methodology, attention to detail, error logs, and fruitful discussions with her therapist to her work demands. She found the psychoeducation and memory compensations groups worthwhile at face value, as they reminded her of her recent schooling for the field she loved. However, for a period of time, she struggled mightily with fully understanding and coping with her physical, cognitive, and emotional residua. Over the course of 6 months of neurorehabilitation, also with the luxury of listening and receiving input from her peers, Luna’s insight, acceptance, and realism evolved nicely. At “cake day,” she proudly informed the milieu that she feels she is now “her own best expert” about her brain injury sequelae and has her patient experiential model (PEM) of recovery mounted in her study as a badge of honor. Ultimately, she generalized her toolkit of compensations, including a healthy lifestyle, and achieved a successful stepwise return to her former employment position, albeit in a modified role.

Post‑Acute Neurorehabilitation When Addressing Cognitive Challenges Cognitive rehabilitation has been defined as functionally oriented, methodical, therapeutic activities predicated on assessment and an understanding of brain–­behavior relationships in 53

54

Clinical Approaches and Techniques

the patient (Bahar-Fuchs, Clare, & Woods, 2013; Bergquist, Rosenbaum, Eberle, & T ­ rexler, 2022; Cicerone et al., 2005). Interventions strengthen or establish previously learned patterns of behavior or create new patterns of cognition or compensatory mechanisms (Bergquist & Malec, 1997; Bergquist et al., 2022; Merriman et al., 2019). They also subsume problem orientation, psychoeducation, awareness building, emotional/behavioral regulation, goal setting, internalization, generalization, and contextual factors, thereby promoting independence, safety, functional adaptability, productivity, and quality of life (Baum, Boone, & Wolf, 2022; Bergquist et al., 2022; Shapiro-­Rosenbaum et al., 2022). This chapter explains CTN cognitive rehabilitation principles and protocols based on (1) cognitive retraining tasks, a specific form of cognitive remediation between one therapist and one to two patients, (2) a psychoeducation group, and (3) a memory compensations group. The overarching goal is to optimize participants’ cognitive and behavioral recoveries through didactics, in-­session exercises, peer interactions, and compensation training. These forums target survivors’ awareness, acceptance, and realism, and prepare them to generalize clinic education to everyday situations (Klonoff, 2010). Patients from any of the CTN programs are appropriate for these groups based on medical necessity and their overarching goals and readiness for the procedures. A variety of methodologies are being utilized to address cognitive deficits after brain injury, and clinical practice guidelines for cognitive rehabilitation have been proffered based on evidence-­based research (Bayley, Tate, et al., 2014; Cicerone et al., 2022; H ­ ildebrandt, 2019; Kennedy, 2014; Mayer, 2014; also see the Journal of Head Trauma Rehabilitation January–­February 2023, for more details). Common targeted domains are sustained attention, speed of information processing, hemispatial neglect and praxis, perceptuomotor speed, visual scanning, working memory, new learning, visuoconstruction abilities, attention to detail, executive functions, and language (Bergquist et al., 2022; Chopra et al., 2017; Cicerone et al., 2022; Downing, Bragge, & Ponsford, 2018; Klonoff, 2010; Klonoff et al., 1996; Malec, 2014; Stanescu & Dogaru, 2016; Tate et al., 2014). Cognitive rehabilitation endeavors have been classified as “bottom-­up” restorative or retraining, with a goal of the patient reacquiring specific cognitive capabilities through reorganization of neural pathways mediated by brain plasticity and/or reliance on neuronal reserves (Becker, Kirmess, Tornås, & Løvstad, 2014; Bergquist et al., 2022; Downing et al., 2018; Hildebrandt, 2019; see Klonoff et al., 1996, for a review). Alternatively, the “topdown” compensatory or substitutive approach aims to improve the survivor’s functional adaptation in a broad array of life situations using internal and external tactics and tools to circumvent problems (Becker et al., 2014; Bergquist et al., 2022; Eberle, Bergquist, & ­Kingsley, 2022; Hildebrandt, 2019; Klonoff et al., 1996; see Klonoff, 2010, for a review). Diverse methods to tackle cognitive difficulties may be performed by neuropsychologists, rehabilitation psychologists, speech and occupational therapists, or recreational therapists (Klonoff et al., 1996; Radomski, Anheluk, Bartzen, & Zola, 2016) and include: • Cognitive process education (e.g., progressive paper and pencil and computerized cognitive exercises) • Cognitive strategy instruction (e.g., datebooks, smartphones, and other assistive technology also for metacognition)



Techniques to Address Cognitive Skills 55

• Skill–task habit instruction (e.g., errorless learning, spaced retrieval, and vanishing cues procedures) • Communication skills • Task or environmental modifications (Downing et al., 2018; Klonoff, 2010; Radomski et al., 2016) In an evidenced-­based literature review, Cicerone and his colleagues (2019) indicated that therapist-­administered cognitive rehabilitation activities are advantageous for treating impairments in attention, working memory, language formulation and comprehension, metacognition, and executive functions after TBI and stroke. Scientists are recommending the use of neuroimaging (e.g., MRIs) to monitor rehabilitation-­induced brain plasticity by measuring macro- and microstructural changes while the patient is receiving cognitive rehabilitation (Nordvick et al., 2014; Prigatano, Braga, Johnson, & Souza, 2021). Although rote exercises in and of themselves may not improve cognition, building insight, developing “cognitive prostheses” and metacognition, followed by transferring strategies to functional daily activities, are the cornerstones (Evans et al., 2020; Klonoff, 2010). Research on the efficacy of cognitive interventions is still evolving, partly related to the variability in inclusion criteria, participants’ characteristics, cognitive strategies, measurements, and outcomes (Bayley, Teasell, et al., 2014; Kumar, Sameulkamaleshkumar, Viswanathan, & Macaden, 2017; Merriman et al., 2019). However, there is good evidence that cognitive rehabilitation is gradually gaining credibility as a critical aspect of specialized neurorehabilitation (Bergquist et al., 2022).

Cognitive Retraining at the CTN General Overview and Goals Cognitive remediation or retraining activities are a crucial component of our treatment model and are considered a “core course.” It is an effective blend of psychoeducation and skills training (Klonoff, 2010). Specific goals are to facilitate restoration of cognitive skills, such as speed of information processing, visual scanning, language, working memory, new learning, attention, visuoconstruction, and executive functions using a series of predetermined exercises that are administered using a strict procedural protocol (Klonoff, 2010; Klonoff et al., 1996). Neurobehavioral challenges are also addressed such as communication pragmatics, openness to feedback, impulse control, flexible thinking, distractibility, and cognitive endurance (Klonoff, 2010). Paramount is the emphasis on compensation training and improving patients’ awareness, acceptance, and realism through the principles of mastery, metacognition, and error analysis (Ben-­Yishay & Diller, 1993, 2011; Ben-­Yishay & Prigatano, 1990; Klonoff, 2010; Klonoff et al., 1996; Klonoff, O’Brien, Prigatano, Chiapello, & Cunningham, 1989). All cognitive and behavioral elements of cognitive retraining are a barometer of community functioning; hence, the ongoing dialogue about strategy development/utilization and the transfer of learning (or generalization) of insights to daily tasks, especially driving, school, and “right fit” work positions (Bayley et al., 2023; Klonoff, 2010; Klonoff et al., 1996.).

56

Clinical Approaches and Techniques

Anecdotal reports in conjunction with the latest investigations exploring patients’ status at 30 years post-CTN discharge indicate they rated cognitive retraining the most beneficial group. Tangible activities concretely measure progress; therefore, participants more readily grasp how cognitive, behavioral, and interpersonal strengths and challenges relate to all walks of life. The in-­session focus on process variables (e.g., organization, independence in task procedures, recall levels, use of compensations, and big picture thinking) and positive working alliances has also been linked to enhanced outcomes, such as the return to driving, school, and work (Klonoff et al., 2007, 2010; Mani, Cater, & Hudlikar, 2017).

Structure and Process Cognitive retraining sessions can span whatever is considered therapeutic and practical for the patient. In our setting, the range is 6 weeks to approximately 6 months based on patients’ neurological status and goals. The frequency is two to five times per week for 45-minute sessions, depending on patients’ therapy needs. Cognitive retraining exercises follow a standardized format. At the outset, patients always review the global purpose, namely, to become aware of strengths and challenges, work on thinking skills, and learn to use compensations because after brain injury, cognitive challenges will affect home independence, school, and work. Task-­specific purpose sheets (also stipulating strategies, functional applications, expected scores, and goals) are discussed prior to completion of each cognitive exercise (see Form 3.1 for a sample number scan task and as completed with Luna in Figure 3.1). Tasks are performed a designated number of times, at least twice per week, to facilitate learning and retention. All exercises are timed, stimuli are verbal or visual, and responses are oral or written (Klonoff, 2010; Klonoff et al., 1989). Procedural memory is addressed by following scoring protocols, mathematical calculations, and record keeping (Klonoff, 2010). Based on data from 327 prior patients, participants are assisted in recognizing their expected performance (estimated performance prior to the brain injury) and then identifying intermediate personalized attainable objectives for each task (Klonoff, 2010). Patients are first given the opportunity to do tasks without guidance about helpful compensations. By the second or third trial, compensations are introduced, and daily practice of these strategies proves their power and efficacy (Klonoff, 2010; Klonoff et al., 1996, 2000). Cognitive retraining provides a rich medium to observe and discuss patients’ attitudes, emotional reactions, and coping styles, all of which will inevitably materialize in other settings, especially school and work (Klonoff, 2010; Klonoff et al., 1989). Catastrophic reactions (CRs) often unfurl as patients unexpectedly recognize struggles in various cognitive domains (Klonoff, 2010; Klonoff et al., 1989). Minimization of struggles implies challenges with organic unawareness, denial, and/or disavowal, while inexplicable and wide fluctuations in scores with a passive approach can signify suboptimal effort (Klonoff, 2010). Cognitive rigidity (e.g., disgruntlement with a temporary assignment to a different therapist), depression and anxiety, low frustration tolerance and emotional outbursts, as well as resistance to feedback in the form of argumentativeness, excuse making, and avoidance of compensations—­all are “red flags” that foreshadow greater psychosocial dysfunction (Klonoff, 2010; Klonoff et al., 1989). Therefore, time is devoted during the session (with a



Techniques to Address Cognitive Skills 57 PURPOSE: This task works on focused attention, rapid visual scanning, and striking a balance between speed and accuracy. NUMBER OF TRIALS: Each set of four numbers is completed four times for a total of 16 trials. SCORING: The score on this task is the total target numbers marked minus the number of mistakes or omissions. REQUIRED SKILLS: Attention to detail; prioritize accuracy over speediness

FUNCTIONAL EXAMPLES:

Looking up phone numbers Using a calculator Paying bills Comparing prices in a store Balancing a checkbook

ADD PERSONALIZED FUNCTIONAL EXAMPLES:

Processing payment invoices Preparing bank deposits Assisting with tax forms STRATEGIES: Use a ruler, double-check, slow down more than I think I need to.

EXPECTED PERFORMANCE: #1:

450 scanned

#3: 282 scanned

#2:

404 scanned

#4: 300 scanned

%ILE: 50th CURRENT ATTAINABLE GOAL: #1:

185 scanned (2nd %ile)

#3: 150 scanned (2nd %ile)

#2:

188 scanned (2nd %ile)

#4: 159 scanned (2nd %ile)

%ILE: and 0 errors

FIGURE 3.1.  Luna’s Number Scan Task.

(relative to preinjury status)

58

Clinical Approaches and Techniques

sensitivity to the pace, timing, and the participant’s emotional readiness) and also in follow­up psychotherapy sessions to provide psychoeducation, explore underlying angst and motivational barriers, and teach and practice healthy coping strategies (e.g., deep breathing, cognitive reframing, a positive narrative, etc.) (Klonoff, 2010). Other “process elements” are the implementation and updating of individualized compensation “toolkits” and regular review of how “artificial” tasks relate to future aspirations. Relevant topics are reasons for discrepancies between expected and actual performance, benefits and limitations of compensations, reasons and antidotes for variable performance, and how and why the amount of cueing has strong implications for community re-entry (Klonoff et al., 1989, 1996). Exploration about the significance and implications of task performance for life skills inculcates better metacognitive abilities, such as self-­monitoring, impulse control, organization, abstraction, and big picture thinking (Klonoff, 2010).

Protocol To promote cognitive arousal and energization, patients participate in cognitive retraining sessions at the outset of their day (Klonoff et al., 1989). After completing each activity, patients are responsible for transferring data to a summary score sheet at the front of their binder (see Form 3.2 for a sample summary and as customized with Luna’s data in Figure 3.2) (Klonoff et al., 1989). Therapists are assigned based on expertise: speech therapists with aphasic and dysarthric patients; occupational therapists with survivors with vision and/or visuospatial deficits; and neuropsychologists/rehabilitation psychologists for those with mood and behavioral challenges. Tasks can be simplified for patients with more acute and greater severity of injuries and are directly incorporated into speech and occupational therapies for those who do not have insurance coverage for cognitive retraining. One-­handed binders can be employed for hemiparetic participants. Typically, two patients work with one therapist, simulating a small teacher–­student or employer–­employee social unit. Everyone is in a large room so as to learn to handle distractions such as would be expected in everyday life (Klonoff, 2010; Klonoff et al., 1989, 2000). Those who cannot handle distractions or are emotionally too fragile perform cognitive retraining tasks in private offices until such time that they can tolerate an open treatment environment. Vital for advancing awareness, acceptance, and realism are ongoing conversations about each survivor’s strengths, difficulties, and associated compensations. A typewritten summary is created collaboratively between the therapist and patient and reviewed at the outset of every session. All areas are integrated, including emotional and interpersonal facets. All lists should mention awareness, acceptance, and realism (either as a strength or challenge). Sensitive areas can be explored in conjunction with the treating psychotherapist to ease possible distress and/or tensions. Challenges successfully compensated for should be moved to another subsection, although these should still be revisited to reinforce consistency. Appendix 3.1 on the book’s companion website summarizes an armamentarium of predetermined strengths, challenges, compensations, and applications to community reintegration to partake from.



Techniques to Address Cognitive Skills 59 Name: Luna Week #/Task

Monday

Tuesday

Wednesday

Thursday

Friday

12/9/19

12/10/19

12/11/19

12/12/19

12/13/19

1: word search 2

18

14

20

24

2: visual search

115.5

81.5

77.0

3: sentence titles 3

220.0

Date:

10

4: name discrimination

49 Date:

11

177.0

12/16/19

12/17/19

1: word search 2

17

2: visual search

75.0

90.5

3: sentence titles 3

214.5

Done 50

5: number discrimination

49 Date:

1: word search 2

12/30/19

12/20/19

12/31/19

50 48 1/1/20

1/2/20

62.0 Done

47

4: number discrimination

50 48

Date:

1/6/20

1/3/20

25 59.5

3: name discrimination

13

12/19/19

74.0

14

2: visual search

49

21

4: name discrimination

12

12/18/19

50

1/7/20

50 1/8/20

1/9/20 Done

1/10/20

1: word search 2

20

24

2: name discrimination

50

48

50

50

50

3: number discrimination

49

4: complex visual search

31/40 Date:

14

1/13/20

1: name discrimination 2: number discrimination 3: complex visual search

1/14/20 50

50

29/40 1/15/20

1/16/20 50 48

27/40

31/36

4:

FIGURE 3.2.  Luna’s Summary Sheet for Cognitive Retraining Scores.

1/17/20

60

Clinical Approaches and Techniques

The bottom line is that therapists must prioritize “process” aspects not only rote task administration. The psychoeducational and dialogue component supersedes all. This includes careful study of all strategies before doing the activity and adding to the functional examples on each task as the patient matriculates through the program. Discussion about graphs enables participants to assess learning curves and factors that positively impact (e.g., healthy breakfast) versus detract from their best performance (e.g., mood concerns, fatigue). Patients should be guided so they are realistic about their performance levels and can generalize this to functional goals in the home and community. For example, comparison of his or her performance with cohorts and collected data are eye-­opening. Plan that these “teachable moments” can easily take 10–20 minutes of a 45-minute session. Errorless learning and error analysis are prioritized (Klonoff, 2010). Error logs have become an effective treatment educational tool to unearth the relative contributions of impulsivity, inattention to detail, mental fatigue, and challenges with memory, distractibility, executive functions, and mood. Helpful subcategories include not following stepwise checklist procedures; task performance and scoring mistakes; mathematical errors; and graphing inaccuracies. Graphs of errors facilitate self-­insight and self-­monitoring. The implications for errors at school and work need to be regularly discussed as teachers and supervisors will vary, yet expectations likely will not. Error rate goal setting is an invaluable precursor for determining when a patient is ready for community reintegration to driving, school, and/or work. New therapists go through intensive protocol training with “seasoned” clinicians and will sit with another therapist during cognitive retraining sessions until they are proficient; exposure to publications from the program and the field in general is an essential educational adjunct. In addition, a highly experienced speech therapist reviews participants’ notebooks, sits in during some sessions, and routinely circulates areas of “drift” to the team via email so as to maximize precision and enable meaningful data collection for research purposes. Figure 3.3 summarizes procedures for cognitive retraining; this will be pertinent to any professional conducting cognitive retraining activities either one-on-one or in smallgroup settings.

The Principles and Operation of Group Therapies in Post‑Acute Neurorehabilitation Evidence-­based and qualitative clinical studies have found that group therapies heighten patients’ knowledge base, neuropsychological abilities (e.g., memory, attention, language, and executive functions), emotional regulation, psychological well-being, social interactions, emotional and societal adaptations, and goal maintenance (Becker et al., 2014; ­Cicerone et al., 2019; Langenbahn et al., 2022; Rigon et al., 2017). They are also instrumental for developing awareness, acceptance, and realism after acquired brain injury (ABI), in part because of the commonality of experience and valuable peer input that breeds hopefulness (­Cicerone et al., 2019; Klonoff, 2010; Langenbahn et al., 2022; Malec, 2014; Rigon et al., 2017; Wilson, 2017b). Others have championed the benefits of psychoeducation through a cognitive group; post-­aphasia language drills; a memory group for remediation, education, and



Techniques to Address Cognitive Skills 61  1. Create a manual of tasks that lists the purpose, task administration, scoring, and error log procedures; compensatory strategies, typical step-by-step procedural checklists, graphing principles, and discharge criteria to assist with training and maintenance of standardized protocols.  2. Review the overall purpose and personalized strengths, difficulties, and compensations list at the outset of each session.  3. Task choices and numbers should take into account the patient’s neurological status, goals, and number of sessions per week. Interdisciplinary input into how to select and modify tasks should be done during team meetings.  4. Designate a typical number of trials per task but be flexible about extending this if the patient is not performing error free, or if it seems therapeutic to continue the task. Invite patients’ family members to try tasks when they are present as this illustrates the purpose, rigors, and intricacies of this session.  5. Stay vigilant about when patients can start developing their own procedural checklists (detailed step-by-step or brief notations), rather than overreliance on staff-generated formats, as this will be required in academic and competitive work environments. Patients should type these to help with readability and learning. Recognize that some higher-functioning patients will be capable of memorizing procedures.  6. Utilize natural occurrences as an excellent opportunity for patients to create memory assignments, such as notating that an unfinished task needs to be completed at the next session.  7. Collect and share quantitative data with the patient, his or her support network, and the larger team in the form of procedural memory, record-keeping skills, attention to detail, errorproneness, and learning style; employ graphs as a useful visual measure.  8. Invaluable qualitative information is gleaned from observing behavioral indices and interpersonal interactions with the patient partner and therapist. The therapist should model appropriate behavior, including by demonstrating tasks and compensations.  9. Regularly update each patient’s strengths, difficulties, and compensations as a vital mechanism to evolve awareness, acceptance, and realism and generalize his or her skills to the “real world.” 10. Employ error logs as an educational tool and utilize error rate goal setting as a precursor for determining when a patient is ready to drive and/or return to school and/or work. 11. Therapists must prioritize “process” aspects, not only rote task administration. Collaborative dialogue should occur in every session. Insights should be generalized to the survivor’s realworld productive activities.

FIGURE 3.3.  Cognitive retraining procedures.

strategy training, also utilizing practical activities; as well as other groups employing roleplay exercises, lessons, and discussions concerning brain injury experiences and adjustment (Becker et al., 2014; Ben-­Yishay & Diller, 2011; Langenbahn et al., 2022; Rigon et al., 2017). Programmatic approaches to remediation of memory problems can have positive effects on metacognition, generalization, and the growth of self-­awareness (Parker, Haslam, ­Fleming, & Shum, 2017). Some methods that may help survivors learn following ABIs include (Velikonja et al., 2023): • Task analysis for multistep procedures • Extensive rehearsal

62

Clinical Approaches and Techniques

• Distributed practice • Patient-­relevant goal setting • Real-world tasks • Tactics for effortful processing (e.g., visual imagery) • Errorless learning Vital after ABI is compensation coaching, especially for memory and executive function impairments (Klonoff, 2010). Recent evidence-­based investigations and best-­practice clinical guidelines emphasize internal and external memory compensations for survivors of TBI, using both individual and group formats (Eberle, Bergquist, & Kingsley, 2022; Velikonja et al., 2023). A metasynthesis of qualitative analysis of group memory rehabilitation interventions demonstrated greater self-­awareness about memory challenges; perceived improvement in memory skills; a normalizing experience and heightened confidence in a safe space; better coping and acceptance through acquisition of a “toolbox” of compensations; mostly enhanced mood and confidence and reduced fatigue; and enriched adjustment and daily life routines with respect to personal, interpersonal, and professional endeavors (das Nair, Martin, & Sinclair, 2015). Cicerone and colleagues (2019) cited findings supporting the use of group-based memory strategies to cultivate prospective memory and recall of practical tasks after TBI and strokes. In line with our clinical experience, evidence-­based research suggests that external mechanisms are considered superior for patients with more severe memory impairments (Velikonja et al., 2023). The determination of what group therapies to incorporate in any post-acute neurorehabilitation setting is complex; factors include the expertise and creativity of interdisciplinary therapists, funding limitations and administrative obstacles, the patient census and etiology mix, and the overarching aims of the therapy. In our experience, a “group” can even consist of a dyad or triad of participants, so starting with smaller groups, simpler syllabi, and shortterm objectives may be the most doable options. This chapter offers a detailed plan, from which modifications can be made to fit the individual practitioner, outpatient programs, or other form of post-acute neurorehabilitation where psychoeducation and the group process are prioritized.

Effective Group Therapy Principles at CTN In our experience, the most successful group therapy is dependent on the following process factors: 1.  Therapists are facilitators, not lecturers. The group dynamics should primarily be “process-­minded” and secondarily “content-­driven.” Within the confines of covering sufficient subject matter and staying “on topic,” the more patients are encouraged to interact, share, and self-­discover, the more their awareness, acceptance, and realism will strengthen. 2.  Group facilitators need to emulate rapport and collegiality with a seamless interdisciplinary/transdisciplinary “tag-team” approach. Plan ahead for the group syllabus (e.g.,



Techniques to Address Cognitive Skills 63

what material on what slides for how many weeks) based on the patient mix and treatment goals. 3.  Group protocols are tailored to the participants’ neurological injuries (e.g., degree of cognitive, language, physical, emotional, behavioral, and communication pragmatic challenges), learning style, interest level, and functional status as well as reasonable considerations such as time frames. Monitor the complexity of the language (on slides and during discussions), concepts, pace of presentation, and voice volume and avoid scientific jargon; instead translate tenets into user-­friendly and pertinent verbiage. 4.  Enlist active engagement by having patients take turns reading from the slides, lineby-line. Assignment of the amount and complexity of the slides should take into account aphasic and dysarthric disturbances; they would read shorter and simpler segments. 5.  Ask open-ended and “tell me more . . . ” questions that apply constructs to patients’ own injuries and circumstances. Monitor the larger group dynamics such that quieter survivors join in and those with communication pragmatic difficulties (e.g., hyperverbality, tangentiality, and poor turn taking) provide space for others to contribute. As an easier venue for more impaired participants to share and learn, consider breaking up into smaller groups of two to three with a therapist facilitator. Worthwhile for discovering revelations, validation, commonalities, and accountability is “taking a poll” vis-à-vis what injury characteristics and sequelae apply to which patients. 6. Let the patients do the work, such as looking up definitions rather than being “spoon-fed” solutions as well as answering each other’s questions. This enhances peer feedback and supplements the reacquisition of higher-­order metacognition and language. Afford sufficient time to find answers in their notes, rather than rush and guess, so as to rehearse compensations and errorless learning. 7.  Provide worksheets that correspond to slide material to boost active learning. Based on patients’ skill sets, therapists collaborate with them about note-­taking options according to what (highlighting presupplied main ideas vs. notating key constructs vs. creating detailed renditions); where (handwritten in a notebook vs. an electronic system); and review (self-­correcting notes for content and accuracy). The organization of notes so they are tidy and in chronological order and are accurate and legible should be emphasized. Therapists should be assigned to one to two patients to actively monitor their note-­taking and provide constructive input. 8.  Patients review a purpose sheet at the outset of every group and take turns briefly encapsulating the prior session’s content. Etiquette is discussed regularly, such as confidentiality as well as mindfulness about respectful and sensitive exchanges to maintain a “safe haven” atmosphere. Facilitators should continually integrate new with previously covered concepts. Short oral “pop quizzes” also using patient-­generated round-robin queries are beneficial and fun. Advance abstract reasoning and information consolidation with short exercises, such as patients summarizing 10 interesting facts they learned and sharing them with one another or a “game of Jeopardy” to test retention. A wrap-up task of “10 nugget notes” allows for further integration and handy access of the topmost takehome messages.

64

Clinical Approaches and Techniques

  9.  Therapists should always relate material to the process of awareness, acceptance, and realism and tie principles to overarching treatment objectives, community reintegration, and the “real world.” Create memory assignments for the patient to take specific queries to his or her neuropsychologist or rehabilitation psychologist for clarification and extension of knowledge for his or her personalized needs and objectives. 10.  For patients resuming school and/or competitive employment, multitasking is tackled, as they are responsible for listening to the content, looking at PowerPoint slides, and taking notes. This mimics academic and vocational duties (e.g., in business meetings). Note quality should be fashioned for long-term access, as would happen in community settings.

Psychoeducation Group at the CTN General Overview and Goals The CTN psychoeducation group is a primary forum for psychoeducation to strengthen patients’ insight regarding their injury and its aftereffects, both with respect to preserved abilities and residual deficits (see Klonoff, 2010, for a detailed review). It covers four modules: (1) the PEM; (2) neuroanatomy; (3) strengths and challenges; and (4) healthy living (Klonoff, 2010). Didactics and peer exchanges are integral, so patients become “their own best experts” about their brain injuries. Specific group goals are to: 1. Increase awareness, acceptance, and realism. 2. Improve learning and language capabilities. 3. Understand the brain injury. 4. Boost social communication skills. 5. Incorporate strategies to live a healthy lifestyle. 6. Work on note-­taking, memory, executive functions, and verbal expression. 7. Realize how this information applies to everyday life and the return to independent functioning in the home, community, school, or work.

Structure and Process The format of the CTN psychoeducation group accommodates up to 8–14 patients and meets two to four times per week for 45-minute sessions. Our modules run for approximately 5–6 weeks. Preferably, the group is facilitated by speech therapists and neuropsychologists/ rehabilitation psychologists (Klonoff, 2010). Generally, there is a 3:1 patient to therapist ratio; however, this is modified based on whether participants require more one-on-one attention. We create a seating chart with therapists strategically placed between patients to optimize backup. At the outset of each module, patients specify their individualized goals based on (1) participation and initiation, (2) comprehension, (3) note-­taking, (4) verbal expression, and (5) communication pragmatics. There is regular exchange during the group regarding objectives as well as in follow-­up one-on-one sessions with their speech therapists and psychotherapists (see Form 3.3 for a sample goals document and as completed with Luna in Figure 3.4).



Techniques to Address Cognitive Skills 65 Name:  Luna

 Date:  2/7/21

 Module: PEM

During my participation in psychoeducational group, I would like to work on the following goals: Participation and initiation (getting tasks started): • Ask a question related to the topic at least  1  time per session. • Respond to at least  2  questions per session. • Share a comment related to the topic. My Goal: Be ready at the start of the session; find what slide we are on based on notations from

the day before.

Comprehension (understanding what is said): • Use the “read back and verify” strategy. • Ask questions when unsure about information presented. • Provide a comment or example relating a new topic to something in my life or something previously learned. • Use my notes to locate answers to newly learned information. My Goal: Use “read back and verify” to be sure I understand new information and relate new ideas

to my return-to-work process once each session.

Note-taking: • Highlight key headings, vocabulary, and terms, and indicate a starting point and an endpoint during each session. • Write additional information (e.g., add examples). • Write answers on the worksheets on the correct line. My Goal: Double-check my notes for accurate details and spelling. Verbal expression (speaking): • Be clear and concise when commenting or asking questions. • Provide a clear and organized response to questions. • Define terms to others clearly. My Goal: Slow down and think about what words I want to use; stay calm. Communication pragmatics (style of communication): • Limit questions/comments to 3 per session (write down questions to ask my speech therapist or psychotherapist later). • Raise my hand to respond to questions (vs. calling out answers). • Allow others the opportunity to respond before I do (take turns). • Refrain from making too many comments about my own experience. My Goal: Watch turn taking and impulsively answering questions before being asked. Other:

Make sure I am paying attention for the full session.

FIGURE 3.4.  Luna’s Psychoeducation Group Goals.

66

Clinical Approaches and Techniques

Information is provided through projected PowerPoint slides, and attendees receive copies of the slides and/or worksheets. All materials can be simplified or expanded based on practical considerations. Two groups can run simultaneously to accommodate different learning levels or program aspirations, for instance, home and community independence versus school and work. Students may be expected to take quizzes to simulate classroom settings. This can be done on a closed-­book and/or open-book basis depending on the survivors’ neurological status and functionality. Generally, the test is first completed in a closed-­ book format as an awareness, acceptance, and realism exercise about academic aptitudes, followed by open-book corrections to enable errorless learning and mastery (Klonoff, 2010) (see Figure 3.5 for sample PEM and neuroanatomy test questions).

Specific Module Protocols PEM Module

The PEM is a central tool to help patients and their tiers of support comprehend the “roadmap to recovery,” which depicts the recovery and neurorehabilitation process for those with moderate to severe brain injuries who are participating in holistic milieu therapies and/or insight-­oriented treatment (see Klonoff, 2010, for additional details). The PEM is an informative technique, pivotal for increasing awareness, acceptance, and realism; an enlarged version can be posted in a central meeting area for easy reference, while a printable version is provided to all participants. Figure 3.6 (pp. 70–71) provides a simplified version of the PEM that is applicable to patients with mild language deficits and more significant ABIs (a colorized version appears at the book’s companion website). All versions are written in the first person, to encourage ownership of the progression. A glossary of key neurorehabilitation terminology is ideal for convenient access (see Figure 3.7, p. 72, for an example). As described previously (Klonoff, 2010), the PEM has eight phases starting from a preinjury point of reference (Phase 0). Each phase depicts distinct events. Of note, as therapy and recovery progress, patients may revisit Phase 3 (Seeks Help), Phase 4 (Starts CTN/ Outpatient Therapy), Phase 5 (Retraining), Phase 6 (CTN/Therapy Transition), or Phase 7 (The Future) based on new revelations and life lessons. These rotations are depicted using dotted lines from Phases 3 to 7 (see Figure 3.6). Patients’ coping mechanisms are depicted by a “stoplight” color-coded schemata: green or healthy and adaptive coping; yellow or warning and struggling coping behaviors; and red or the crisis state. Dotted lines indicate expected fluctuations in coping approaches and this “roller-­coaster” phenomenon is normalized with survivors, with an eye to learning and implementing “green” coping styles whenever feasible. The psychoeducation group facilitators will guide patients through the PEM step-by-step, and each phase is reviewed and discussed within an open-group scenario. A brief overview of the family experiential model (FEM) of recovery is also delivered to assist patients in understanding the parallel roadmap their support networks undergo (see Chapter 9 for more information). Figure 3.8 (pp. 73–74) contains an outline of material, some or all of which can be used as handouts or transferred to PowerPoint content, as preferred.



Techniques to Address Cognitive Skills 67 Sample PEM Test Questions Choose the best answer:  1. Awareness is: a. not knowing that you have a brain injury. b. understanding your strengths and challenges. c. being awake.  2. A catastrophic reaction is: a. feeling I do not need therapy. b. an emotional reaction to suddenly realizing I cannot do an activity now that I used to do well preinjury. c. a power struggle with my therapists and family.  3. Acceptance is: a. coping with my challenges using compensations. b. being confused early on after my injury. c. a refusal to use strategies.  4. Realism is: a. unwillingness to admit to a problem. b. a long period of unconsciousness. c. making good decisions about the future.  5. What happens in Phase 6? a. Patient has just had the brain injury and is in the intensive care unit. b. Patient is struggling in the community and he/she and/or the family seek help. c. Patient is ready to finish neurorehabilitation and is using tools in the “real world.”  6. Match the term to the correct definition: a. disavowal    Psychological disbelief about a brain injury problem b. denial

   Blame the person sharing difficult news about the brain injury

c. slippage

   Sometimes acknowledging the injury and/or its effects, sometimes not

d. PEM chart

   Gradually straying from using compensations

e. Phase 5

   A road map to neurorehabilitation

f. kill the messenger

   Dress rehearsal for a new life and part of the acceptance process

 7. Beside each description write the phase number (1–6):    Patient is recommended by a doctor for neurorehabilitation.    Patient has just been injured and is in the intensive care unit.    Patient is ready for “cake day.”    Patient is learning ways of compensating for difficulties.    Patient is finished with neurorehabilitation and is in the “real world.”    Patient has just started neurorehabilitation and is learning about difficulties.    Patient is still in the hospital, making an early adjustment. (continued)

FIGURE 3.5.  Sample psychoeducational group test questions.

68

Clinical Approaches and Techniques

 8. a. Define compensation

b. Give two examples of problems and what compensations you use: Problem #1:  Compensation #1:  Problem #2: Compensation #2:   9. Write GREEN, YELLOW, or RED on the lines next to each description:         The patient works hard in therapy and is coping well.         The patient rejects the help and quits therapy.         The patient does not cope well with distress and uses “yeah, buts.”         The patient is willing to use compensations and “trusts the process.”          The patient is only “going through the motions” and is in a power struggle. 10. Define “flight into health”:

Sample Neuroanatomy Test Questions  1. The brain is divided into two       .  2. Which hemisphere controls the left side of the body? (Circle it below.) LEFT

RIGHT

 3. Which hemisphere is responsible for construction skills and big picture thinking? (Circle it below.) LEFT

RIGHT

 4. The structure that is important for alertness and basic life functions is called the       .  5. How many lobes are in the brain?         6. The lobe of the brain that is responsible for vision is called the        lobe.  7. Memory is a major function of the        lobe.  8. The part of the parietal lobe that helps us feel touch is called the: (Circle it below.) MOTOR STRIP

SENSORY STRIP

 9. Executive functions and the motor strip are in the        lobe. 10. Which one of the following is NOT an executive function?              • Problem solving • Flexible thinking • Initiation • Impulse control

• Vision • Planning and organization • Complex attention, multitasking • Judgment

FIGURE 3.5.  (continued)



Techniques to Address Cognitive Skills 69

Patients are asked to self-­assess their phase and coping color placement, which aids in awareness, acceptance, and realism. They also receive ratings from therapists, which they review, along with their personal ratings, in individual psychotherapy sessions. A write-up of similarities and differences is created. Form 3.4 and its completed version in Figure 3.9 (pp. 75–76) provide, respectively, the set-up for recording ratings and then a sample of PEM ratings and the rationale from both the patient (Luna) and the therapists. This predialogue prepares patients for presenting personal information in the psychoeducation group and mitigates feelings of insecurity or vulnerability. The juxtaposition of self-­ratings with therapist and peer ratings cultivates a deeper grasp of the current situation for all parties, including the therapists, as self-­ratings sometimes unearth unexplored trauma. Group disclosures, particularly pertaining to “yellow” or “red” zone dips, reinforce the normalcy of survivors’ emotional struggles and bond group members to one another in their tumultuous journeys. This information is also reviewed with families, to assist with their awareness, acceptance, and realism as well as to bridge gaps in perceptions and communication. Neuroanatomy Module

The neuroanatomy module is an essential component of the psychoeducation group and a patient favorite. It is designed to build participants’ understanding of their brain injuries by reviewing (1) the basic structures and organization of the brain; (2) functional neuroanatomy; (3) an introduction to neuroimaging; (4) common types of ABIs; and (5) how neuroplasticity ameliorates the effects of the brain injury. Figure 3.10 (pp. 77–80) depicts the module content. Visual images, a three-­dimensional brain structure, and/or online resources are powerful accessory tools to in-class conversations; exercises facilitate a deeper comprehension of survivors’ injuries and symptomology. Prior to the first session, patients meet individually with their psychotherapist to fill out a Neuroanatomy Summary Worksheet (see sample Form 3.5 and as completed with Luna in Figure 3.11, p. 81) on (1) the type of brain injury sustained (e.g., TBI) and (2) the locations of their brain injury (e.g., left frontal and temporal lobes) (see the top of Figure 3.11 about Luna). This primes group members for personalizing the content publicly while normalizing their experiences. In subsequent group sessions, this worksheet is employed to identify how the injury location corresponds to specific deficits (see the bottom half of Figure 3.11 about Luna). Throughout the neuroanatomy module, patients are taught to consider how identified impairments could influence “real-world” functioning. For example, after reviewing the expected consequences of damage to the left temporal lobe, patients are asked to contemplate how difficulties with auditory processing and verbal memory impact being able to fully comprehend and retain a complex discussion at their workplace or with a friend. Survivors are invited to share if they have ever had this experience and provide personal examples whenever possible. Near the conclusion of this module, patients identify three compensations, linking them to specific challenges and injury locations (see the bottom half of Figure 3.11 about Luna). Members initiate filling in this worksheet during the group and finish it collaboratively with their psychotherapist for additional reflection. Afterward, participants share their newfound knowledge with the group.

70

• Life as it was.

Reference Point

Preinjury

PHASE 0

Initial Problems

Early Adjustment

PHASE 2

• Where? Inpatient • Where? Hospital Neurorehabilitation Intensive Care Unit Unit. or Acute Care. • I am confused. • I have a brain • I may be unaware injury, such as a: of my problems. | Traumatic Brain • I start therapies Injury (Physical Therapy, | Stroke Occupational | Tumor Therapy, Speech | Seizures Therapy, Neuropsychology). • I improve my basic skills.

Sudden Impact of Brain Injury

Time of Injury

PHASE 1

• Where? Home. • There may be problems at home, in the community, at school, or at work. • My family feels “stressed out” and overloaded. • My doctor, family, and/or I look for treatment.

Can’t Cope

Seeks Help

PHASE 3

• Where? CTN. • I might have a “honeymoon period.” • I learn about my strengths and difficulties. • I may feel strong emotions (“CRs”). • I may find CTN hard and stressful, like “rehab boot camp.”

• Where? CTN. • I start using compensations (e.g., datebook). • I start a work trial and/or school. • I practice for my new life. • I have a “second chance.”

Compensations

ACCEPTANCE

AWARENESS Facing Reality

Retraining

PHASE 5

Starts CTN

PHASE 4

Cake Day

• Where? CTN. • I have reachable goals. • I can use what I learned in therapy in the “real world.” • I have new freedoms, independence, and meaningful activities.

Approaching Discharge

REALISM

Transition from CTN

PHASE 6

• Where? Home, work, school, and volunteering. • I have my tools and my new reality sets in. • I realize things are not the same, but I can live a meaningful and productive life.

The Real World

Future ∞

PHASE 7

Discharge

71

RED = CRISIS

WARNING ZONE

COPING WELL

• I cannot take feedback. • I deny problems. • I “kill the messenger.” • I have relationship problems with my therapists and family.

• I do not think I have problems. • My problems are not my fault. • I feel I do not need therapy.

• I try to do more than I can safely do. • I am “snarky” and use “Yeah, buts.” • I’m in a “power struggle” with my therapists and family. • I make things hard for my family because I don’t accept my challenges.

• I deal with losses. • I accept who I am now. • I have a good attitude about using my compensations. • I have good relationships with others. • I know that “things take time.”

• I use my compensations everywhere. • I can change my compensations if needed. • I am successful in “two-way street” relationships. • I know I can return to CTN if I need extra help.

• I have “slippage” and do not use my compensations. • I don’t adapt to life changes. • I do not ask for help. • My family members burn out.

• I work with my therapists and family to get back into the community. • I am realistic about my independence, productivity, and social skills. • I am confident and have courage. • I make the most out of my recovery and neurorehabilitation. • I show “flight into health.” • I have self-doubts, anxieties, and poor coping. • I have unrealistic goals. • I have big setbacks in my neurorehabilitation and recovery because I am not 100%.

I do not follow any therapy recommendations. I refuse to become aware of or accept my problems. I ignore reality. I am angry, hopeless, and helpless. I argue with people who want to help me. I prefer to be alone and not see my friends and family. I am dependent on others. I do not do well at home, work, or with my family. I face financial problems. Life is very difficult.

Period of Disintegration

• I have a better understanding of my brain injury. • I enjoy the structure and start to trust the CTN way. • I am dealing with my anxiety, anger, frustration, and/or sadness in a good way. • I am less overwhelmed and cope better.

• I am unsure, but trust my doctor and/or my family. • I am open to more neurorehabilitation.

FIGURE 3.6.  Patient experiential model of recovery after brain injury—­shortened. From Prigatano (1999). Adapted by permission of Oxford University Press.

C O N D I T I O N

F A M I L Y ’ S

72

Clinical Approaches and Techniques

 1. Acceptance: Coping with your difficulties by compensating for them  2. Awareness: Knowing your strengths and difficulties  3. Boot camp: Adjusting to the regimen and accountability embedded in the program  4. Cake day: A celebration during the milieu session signifying your successful completion of the CTN program  5. Catastrophic reaction (CR): Emotional reaction to recognizing challenges postinjury in areas that were easy preinjury  6. Communication pragmatics: The social rules we follow for conversations  7. Compensation: Tools to improve your functioning  8. Disavowal: Sometimes acknowledging the problem, but other times not  9. Denial: Unwillingness to admit to a brain injury problem related to your psychological coping style 10. Errorless learning: Learning something “right”/accurately the first time 11. Executive functions: Higher-level thinking skills (e.g., planning, organization, reasoning) 12. “Flight into health”: You feel “healed” and stop using compensations 13. Honeymoon period: Feeling enthusiastic about the program early on 14. “Kill the messenger”: Treat the person giving “bad news” related to the brain injury as if he/ she were to blame for the situation 15. Organic unawareness: Not understanding your strengths and difficulties directly due to the brain injury 16. “Own best expert”: Fully understanding the effects of the brain injury so you can be successful in the community 17. Patient experiential model (PEM) of recovery: A roadmap of recovery after brain injury 18. Realism: Making good decisions about the future based on awareness and acceptance 19. Red zone: When you are unable to cope with the brain injury realities and life falls apart 20. Slippage: You slowly stop using compensations after leaving CTN 21. “Yeah, buts”: Excuses and resistance to feedback or recommendations

FIGURE 3.7.  PEM glossary.

Strengths and Challenges Module

During this module, patients compose their strengths, challenges, compensations, and their implications for community reintegration (home, school, work, relationships, leisure, etc.) for their (1) physical abilities, (2) cognitive and language skills, and (3) emotional and social factors utilizing a personalized worksheet (see sample Form 3.6 and as completed with Luna in Figure 3.12, pp. 82–84). At the outset and conclusion, patients complete a short survey where they self-­assess their understanding of strengths and challenges, commitment to using compensations, and the implications for their day-to-day life. Comparison of pre and post ratings helps patients appreciate the learning and self-­insight processes (see Form 3.7 that can be used to complete such a survey).



Techniques to Address Cognitive Skills 73 1. Learning Objectives a. Understand the phases of recovery. b. Describe the coping zones for the physical, cognitive, and emotional domains. c. Identify your current phase(s) and coping zone(s). 2. PEM a. The process or roadmap of recovery after a brain injury b. Why we study it: i. Understand the recovery process. ii. Realize we have a common experience. iii. Know what can help and how to cope in healthy ways. iv. Measure personal progress. c. Key concepts: i. Awareness: Knowing your strengths and challenges ii. Acceptance: Coping with your challenges by compensating for them iii. Realism: Making good decisions about the future based on awareness and acceptance d. Review of each phase of the PEM: i. Phases 0–7 (Blue Zone) ii. Why are there dotted lines between Phases 4–7? iii. Phase 4 (Awareness): a. “Honeymoon period”: Feeling enthusiastic about the program early on b. “Catastrophic reaction”: Emotional reaction to recognizing challenges postinjury in areas that were easy preinjury c. “Boot camp”: Adjusting to the regimen and accountability embedded in the program iv. Phase 5 (Acceptance): a. Compensation training: Tools to improve a person’s function b. Begin work experience or school courses c. “Dress rehearsal” for new life d. “Second chance” v. Phase 6 (Realism): a. Selecting attainable goals in preparation for discharge b. Generalizes knowledge to the “outside world” with new freedoms, independence, and meaningful activities c. “Cake day”: A celebration during the milieu session signifying successful completion of the program with verbal presents and dessert vi. Phase 7 (The Future): a. I have tools and my new reality sets in. b. Life is ever-changing, but meaningful and productive. e. Group exercise: i. What (blue) phase am I in for each domain? a. Physical b. Cognitive c. Emotional f. Definition of coping: How I am adjusting? i. This process is usually stressful and takes time. ii. Patients may cope differently. iii. Patients might have some behaviors that fit in different zones at the same time. iv. Arrows between the coping zones show that patients can move back and forth fluidly between zones. v. Individual and group psychotherapy and psychiatric care are key. vi. Family’s condition interrelates with the patient’s. (continued)

FIGURE 3.8.  PEM model content.

74

Clinical Approaches and Techniques g. Review of coping, warning, and crisis zones for Phases 3–7: i. Zones: a. Green: coping well b. Yellow: warning signs c. Red: crisis ii. Phase 4 (Awareness): a. Trusts the process, enjoys structure, and manages difficult emotions: green zone behaviors b. Organic unawareness: Not understanding strengths and challenges directly due to the effects of the brain injury c. Disavowal: Sometimes acknowledging the problem, but other times not d. Denial: Unwillingness to admit to a problem related to a psychological coping style e. “Kill the messenger”: Treats the person giving bad news as if he/she were to blame for the problem f. Items b–e above are yellow zone behaviors. iii. Phase 5 (Acceptance): a. Mourns the losses, adjusts expectations with a “just do it” attitude, and recognizes “things take time (T.T.T.)”: green zone behaviors b. “Yeah, buts”: Resistance to feedback or recommendations (e.g., making excuses, arguing, pushing back, power struggles, justifying): yellow zone behaviors iv. Phase 6 (Realism): a. Confident, maximally independent, productive, with a good social life: green zone behaviors b. “Flight into health”: Often seen just before discharge when the patient feels “cured” because neurorehabilitation is ending, stops using compensations: yellow zone behavior v. Phase 7 (The Future): a. Consistently uses and modifies compensations, two-way street relationships, door is open if needed: green zone behaviors b. “Slippage”: Stepwise straying away from using compensations: yellow zone behavior vi. Crisis/Period of Disintegration (Red Zone): a. Patient rejects brain injury realities. b. Turmoil and crisis. c. Life falls apart in the home, community, at work/school, and socially. h. Group exercise: i. What color(s) coping zone am I in for each domain? a. Physical b. Cognitive c. Emotional i. In-class and homework assignments: i. Review your notes to place yourself on the PEM and explain why. ii. Write a memory assignment to talk to your neuropsychologist/rehabilitation psychologist to review your self-ratings and obtain your therapists’ ratings. iii. Write a review of your ratings and the therapists’ ratings with your neuropsychologist or rehabilitation psychologist. Be prepared to present the differences or similarities of the ratings to the group. j. Brief overview of the family experiential model (FEM) of recovery i. Phases and coping zones k. Group exercise: i. Discuss similarities and differences between the PEM and FEM. ii. Have follow-up dialogue with your psychotherapist and family about these models and then discuss as a group.

FIGURE 3.8.  (continued)



Techniques to Address Cognitive Skills 75 Self

Therapists

Phase

Color

Phase

Color

Physical

5/6

G

5

G/Y

Cognitive

5

G

4/5

G/Y

Emotional

4/5

G/Y

4/5

G/Y

Phase Options: 4, 4/5, 5, 5/6, 6 Color Options: G, G/Y, Y, Y/R, R (G = green zone; Y = yellow zone; R = red zone) Reasons for Self-Rating

Reasons for Therapists’ Ratings

Physical Phase:

Physical Phase:

I know that I have balance and tone problems and so I can’t run right now (although I really want to). I try to enjoy other outdoor activities, like taking walks and easy hikes using a walking stick. I think I am ready to be done with physical therapy.

Physical Color:

I think that I am doing well in listening to my therapists and following their suggestions.

Lun a un d erstands h e r p hysic a l cha l l en ges an d is fo l lo win g t hrough w e l l wi t h h e r Ho m e Ex ercis e Progra m an d us in g h e r wa l kin g s tic k w h e n n ee ded . Sh e is s t i l l wo rkin g o n acc ep t in g t h e fac t tha t runn in g righ t n o w is not a go od i dea . Sh e do es not h a v e a gym progra m ye t.

Physical Color: Lun a so me t i mes p ress u res h e r p hysic a l t h era pis t to le t h e r do mo re th a n is safe (e.g., h ard, roc ky h i kes) an d to “gra duat e” fro m p hysic a l t h era p y. Ov era l l, s h e is dea l in g muc h bett e r wi t h f in d in g e njoya b l e, bu t safe, outdoo r p hysic a l ac t i vi t ies an d is us in g fe w e r “yea h, buts .”

Reasons for Self-Rating

Reasons for Therapists’ Ratings

Cognitive Phase:

Cognitive Phase:

I feel I get what my problems are and I’m now doing a situational assessment in the hospital in the billing department. I’m using compensations to keep me on task and accurate.

Lun a is lea rn in g n e w co m p ensa tions, l i k e ta kin g lots of notes an d us in g a c hec klis t a t h e r si tua tion a l ass ess m en t. Sh e is s t i l l lea rn in g abou t h e r t h i n kin g cha l l en ges an d ho w to avoi d catas tro p hic reac tions w h e n s h e has m emo ry an d att en tio n to deta i l cha l l en ges .

Cognitive Color:

Cognitive Color:

I embrace my datebook and I know my tools have helped me.

Lun a is mos t l y o p e n to feedbac k; s h e so me t i mes wi l l dis avo w pro b l ems an d n eeds re m in d ers tha t t h ings ta k e t i m e (T.T.T.).

(continued)

FIGURE 3.9.  Luna’s PEM Placements.

76

Clinical Approaches and Techniques Reasons for Self-Rating

Reasons for Therapists’ Ratings

Emotional Phase:

Emotional Phase:

I see that there is a “second chance” for me, but sometimes I don’t like this “rehab boot camp.” I get super upset when my parents lecture and pressure me. They treat me like a baby—why can’t I still go to bars with my friends?

Lun a a d mits s h e f inds t h e reha b i lita tio n process s t ressf u l bec aus e s h e fe els t h e t h era pists a re h old in g h e r bac k fro m d ri vin g an d wo rk . Psycho t h era p y h e l ps h e r un d erstan d an d ge t thos e fe e l ings ou t. Dress re hearsa l s t epp ingsto n es a re un d e rwa y fo r h e r to mov e ou t, d ri v e, an d wo rk i n t h e fu t u re.

Emotional Color:

Emotional Color:

With all of the arguing at home, sometimes I feel I could just quit rehab and I’d be fine on my own. But when I talk things through in psychotherapy with my parents there, I try to calm down and quit fighting the process so much.

So m e of t h e t i m e, Lun a has t h e “jus t do i t ” at ti tu d e an d is t ryin g to t rus t t h e process . Bec aus e of h e r dis t ress an d fe e l ings of b e in g tra p ped, s h e wi l l ge t sn a rky. Sh e so me t i mes gets into po w e r s t ruggles wi t h thos e t ryin g to h e l p h e r, bu t mo re rec en t l y, s h e has b e e n t ryin g to sta y t h e co urs e an d acc ep t feedbac k cons t ruc t i v e l y.

Write a script about the similarity and/or differences of your ratings versus the therapists’ ratings. Please be prepared to share this with the group.

It turns out I figured I was further along physically than the therapists thought. I need to still work on better understanding why I have problems running and also use my walking stick even on easy hikes. I now see that T.T.T. and I’m not ready for discharge from physical therapy until I have community and gym programs in place. Cognitively, disavowal is a big problem for me, but I am coming along, especially when I take notes and use my datebook and checklists the way I am supposed to. I feel like I am working hard most of the time at CTN, but I am hearing that I am snarky at CTN and at home more than I realized. My psychotherapist said he will help me more with this, which I am happy about.

FIGURE 3.9.  (continued)

This module consolidates all of the arenas that survivors are addressing, reminding them to capitalize on their positive attributes and compensate fully for difficulties with an eye to success in their future pursuits. Developing these lists in a group setting also allows practice with giving and receiving feedback and seeing the perspectives of others (Klonoff, 2010). As a starting point, patients can utilize lists that are constructed during cognitive retraining sessions (Klonoff, 2010). They are first asked to furnish at least three examples in each category on their own, to catalyze ownership and self-­reflection. Given the group exposure of sensitive information, besides daily checks of etiquette principles, patients can ponder their lists with their psychotherapists before sharing them in a group. This will reduce feelings of embarrassment or anxiety. To expand their lists, patients can also select other relevant descriptors from Appendix 3.1 (see this book’s companion website) in either individual sessions or as part of the group, depending on their comfort level and syllabus time lines. Material in this module is linked to relevant concepts in Phases 4, 5, and 6 of



Techniques to Address Cognitive Skills 77 1. In-Class and Homework Assignments a. Prior to the first session, meet with your neuropsychologist/rehabilitation psychologist to complete your Neuroanatomy Summary Worksheet. b. Refer to this worksheet as each section below is reviewed. c. Option of quizzes for students. 2. Overview of the Brain a. Neurons = brain cells: i. The brain has about 100 billion neurons. ii. Behavior, thinking, and emotion depend on the communication between neurons. iii. Review diagram of the neuron (dendrites, cell body, axon). iv. When the neuron is injured, this communication is disrupted. v. This disruption can cause changes in behavior, thinking, and emotions. b. Two hemispheres: i. Left: a. Controls the right side of the body and language functioning ii. Right: a. Controls the left side of the body, visuospatial (e.g., construction) skills, and big picture thinking iii. The corpus callosum connects the left and right hemispheres so they can share information. c. Four lobes: i. Occipital: a. Located at the back of the head b. Damage resulting in visual field cuts and other vision changes ii. Temporal: a. Located at the sides of the head b. Damage resulting in difficulties with: i. Memory: a. Left temporal lobe = verbal memory b. Right temporal lobe = visual memory ii. Understanding language (left hemisphere) iii. Attention (bilateral, both hemispheres) iii. Parietal: a. Located at the top, back portion of the head b. Contains the sensory strip c. Damage possibly resulting in difficulties with sensation, visual judgment, and neglecting a part of the body d. Difficulty with visual judgment possibly resulting in trouble constructing things, finding your way to a new place, and math iv. Frontal: a. Located in the front of the head b. Largest of the four lobes c. Frequently injured d. Contains the motor strip e. Damage resulting in difficulties with executive functions, personality and emotions, motor functions, and expressive language (left hemisphere): i. Executive function deficits: unawareness of challenges; and poor judgment or decision making, planning, organization, complex attention, abstract reasoning, initiation, impulsivity, risk-taking behaviors, and perseveration (getting stuck or fixated) ii. Personality/emotional changes: depression, anger, irritability, mania, and/or lability of mood (uncontrollable changes in emotions, such as laughter and crying)

(continued)

FIGURE 3.10.  Neuroanatomy module content.

78

Clinical Approaches and Techniques

iii. Motor challenges: weakness in the body, difficulty making facial expressions, and/ or changes in how speech sounds iv. Expressive language difficulties: trouble with word finding and telling a story 3. Other Aspects of the Brain a. Fluid within the brain: i. The meninges are the outer covering of the brain and spinal cord: a. Made up of three membranes: dura mater, arachnoid mater, and pia mater ii. Cerebral spinal fluid: a. Liquid that flows through the spaces between the brain and the meninges b. Cushions the brain when the head moves back and forth c. Maintains proper pressure in the brain iii. Review picture of the ventricles iv. Hydrocephalus = when the ventricles enlarge with too much cerebral spinal fluid b. Blood supply to the brain: i. The brain needs oxygen and glucose from blood. ii. Any disruption in blood supply to the brain can cause damage very quickly. iii. Brain cells begin to die after 4 minutes of low oxygen levels. iv. Permanent brain injury can occur after 5–8 minutes of low oxygen level. c. Other brain structures: i. Cerebellum: a. Located under the occipital lobe of the brain and behind the brainstem b. Damage resulting in dizziness; problems with balance, coordination, double vision, slurred speech; procedural memory (remembering how to perform an action such as driving); and other cognitive deficits such as variable attention and executive functions (due to connections to the frontal lobes) c. The right cerebellum controls the right side of the body; the left cerebellum controls the left side of the body. ii. Brainstem: a. Located between the spinal cord and the brain, next to the cerebellum b. Important for alertness/consciousness and basic life functions (e.g., heart rate, respiration) c. Communicates between the brain, spinal cord, and body iii. Subcortical structures a. Thalamus: i. Located deep within the brain, above the brainstem ii. Is a relay station; decides where to send information from the sensory organs to the proper areas of the brain iii. Helps us to integrate and process information iv. Damage resulting in difficulties with memory, sensation, and emotions b. Basal ganglia: i. Involved in movement, learning, and executive functions c. Amygdala: i. Involved in emotions, especially anxiety and fear ii. Fight-or-flight reactions d. Hippocampus: i. From the Latin word meaning “seahorse” ii. Located in the temporal lobes iii. Damage resulting in difficulty making new memories iv. Limbic system a. Influences our emotions, hormones, and memories d. Group exercise: Discuss locations of brain injuries in group members. (continued)

FIGURE 3.10. 

(continued)



Techniques to Address Cognitive Skills 79 4. Neuroimaging of the Brain a. Two common types of brain imaging include: i. CT scan (computed tomography): a. Imaging technique using radiation b. Better at detecting blood than an MRI ii. MRI (magnetic resonance imaging): a. Imaging technique using magnetic fields b. A better-quality picture than a CT scan b. Group exercise: Discuss what neuroimaging studies group members had. 5. Types of Injuries to the Brain a. Traumatic brain injury: i. Closed- versus open-head injuries: a. Closed-head injury: the result of a blow to the head, or a sudden, violent motion that injures the brain by pushing the brain against the inside wall of the skull b. Open-head injury: the result of an object penetrating/entering the skull and brain ii. Coup and contrecoup: a. Coup: brain injury on the side of the impact to the head b. Contrecoup: injury on the side opposite of the impact, which happens when the brain collides with the other side of the skull iii. Common deficits after TBI include difficulty with information processing speed, attention, learning and memory, and executive functions. iv. Injuries to the brain after TBI include: a. Contusions: brain bruises b. Hemorrhage/hematoma: collection of blood c. Diffuse axonal injury (DAI): stretching and tearing of the axons of neurons (shearing) when the brain moves inside the bony skull b. Stroke: i. Also called a cerebral vascular accident (CVA). ii. A CVA is an interruption in blood supply to the brain. iii. Impairments depend on the location and size of the CVA. iv. There are two types of CVA: a. Ischemic: a lack of blood supply caused by a blockage b. Hemorrhagic: a vessel bursts and bleeds into the brain, causing damage to tissue: i. Aneurysm: pouching out or “ballooning” of a weakened wall of a blood vessel ii. Arteriovenous malformation (AVM): a congenital malformation (from birth) of blood vessels that makes them weak and susceptible to leakage v. Cavernous malformation: a. Groups of tightly packed, abnormal small vessels with thin walls b. Can create problems in the brain or spinal cord due to leakage of blood c. Brain tumor: i. A space-occupying mass in the brain ii. Symptoms may depend on three main factors: a. Tumor size b. Tumor location c. Fast- versus slow-growing iii. Common treatments for brain tumors include surgery and radiotherapy/chemotherapy. d. Anoxia: i. A lack of oxygen to brain tissue ii. Common causes are cardiac arrest, respiratory distress, and near drowning. iii. Permanent damage to the brain tissue can occur within 5 to 8 minutes. (continued)

FIGURE 3.10. 

(continued)

80

Clinical Approaches and Techniques

e. Infections: i. Caused by viruses, bacteria, or fungi ii. Encephalitis: inflammation of the brain due to an infection iii. Meningitis: inflammation of the meninges due to an infection f. Seizures: i. A disruption in electrical activity of the brain (overload) ii. Can cause confusion, hallucinations, strong emotions, muscle contractions, and/or loss of consciousness iii. There are two types: a. Generalized seizures: i. Involve the entire brain ii. May cause the person to become unconscious or unresponsive iii. Can be convulsive (some or all of the body) or nonconvulsive b. Partial seizures: i. Involve only portions of the brain ii. The person may: a. Remain conscious b. Become confused c. Have automatic muscle movements in a certain part of the body d. Experience changes in taste, sight, smell, or feelings before the seizure starts iv. Risk factors for seizures include brain injury, loss of sleep and extreme fatigue, street drugs and alcohol use, too much caffeine, chemical changes in the body (e.g., low sodium or magnesium, or high calcium), not taking prescribed medications, interactions between medications (including supplements), and stress. v. Treatment for seizures may include medication, surgery, rest, and good self-care. g. Group exercise: Discuss types of brain injuries in group members. 6. Neuroplasticity a. Neuro = brain, plastic = able to change b. Changes that occur in the organization of the brain as a result of experience c. Suggests that normal development can be influenced by our experiences d. Neuroplasticity following neurorehabilitation focuses on “retraining” the brain: i. Damaged neurons can grow back under certain circumstances. ii. Other neurons may die; however, new neural pathways may develop.

FIGURE 3.10.  (continued)

the PEM and neuroanatomy, such as the relationship between damage location and deficit areas. Powerful in the disclosure process is the commonality of symptoms whereby participants can modify their lists based on what they glean from others. The group exchange begins with strengths; this is critical, as patients may lose sight of these postinjury. These can also be conceptualized as areas of improvement in the context of some remaining limitations. The group enterprise enables patients the opportunity to compliment each other, foster camaraderie, and recognize how strengths support positive mood. Methods for this self-­esteem-­building exercise are to ask the group for input, either in free form or by having each patient identify a strength for the neighboring group member, proceeding around the room. Following this, an individualized list of challenges, compensations, and “real-world” repercussions is assembled. First, a round-robin approach is used whereby each patient



Techniques to Address Cognitive Skills 81

shares one to three challenges, compensations, and life implications in front of the whole group, or alternatively in smaller dyads or triads. Supplemental feedback can be obtained from peers; however, to minimize potential conflict or hurt feelings, patients are instructed to use the “sandwich technique,” starting with an introductory positive statement, followed by constructive feedback, and ending with another closing affirming sentiment (Klonoff, 2010). Members are also encouraged to review their lists with other therapists, namely, their physical list with their occupational and physical therapists; and their cognitive/language lists with their speech therapist and neuropsychologist or rehabilitation psychologist. Finalized lists are filed for future reference in their notebooks and also shared with their tiers of support.

The type of brain injury I have is: traumatic brain injury

The brain areas primarily affected are: left frontal and left temporal lobes, diffuse axonal injury

Think about the location and type of your brain injury. Talk with your psychotherapist and list at least three difficulties you have as a result of your brain injury. Next, list the compensations you use for these difficulties. Difficulty

Location of Injury

Compensations I Use for This Difficulty

1.  Memory

Left temporal lobe

1.  Note-taking 2.  Datebook 3.  Read back and verify

2.  Word finding

Left frontal lobe

1.  Allow extra time 2.  Use a synonym 3.  Work with my speech therapist

3.  Impulsivity and judgment

Left frontal lobe

1.  Think before I act or speak 2.  Consult my advisory board 3.  Remember T.T.T. (things take time)

FIGURE 3.11.  Luna’s Neuroanatomy Summary Worksheet.

82

Clinical Approaches and Techniques Physical Strengths*

1.  Use of my nondominant left hand 2.  Improving endurance 3.  Good hearing 4.  Successful weight loss *Can be good or better. Challenges

Compensations

Real-World Applications

1.  Balance and tone

1.  Follow the therapy home visit

1.  Do my tone-reducing home exercise

2.  Fine-motor

2.  Keep practicing my typing skills

2.  Give myself extra time when typing;

3.  Vision

3.  Wear glasses; do vision therapy

3.  Slow down when reading

4.  Fatigue

4.  Do proper sleep hygiene; exercise;

4.  Continue working part-time with

coordination

recommendation to use grab bars and slip grips in my shower; work on balance training in physical therapy.

using the online typing program; do eye-hand coordination exercise with my occupational therapist.

exercises in occupational therapy.

drink water; do interval eating.

program; be aware of my footing when walking my dog; sign up for an easy tai chi class at my gym; avoid certain sports right now like skiing.

always use my adaptive pen and pencil at work; use my adaptive cutting board when cooking dinner.

instructions; drive during the day only when it is not busy.

shorter shifts and less physical demands; use energy conservation techniques.

(continued)

FIGURE 3.12.  Luna’s Strengths and Challenges List.



Techniques to Address Cognitive Skills 83 Cognitive/Language Strengths* 1.  Specialized education 2.  Good vocabulary 3.  Learns well with practice and repetition 4.  Pathfinding in the community *Can be good or better. Challenges

Compensations

Real-World Applications

1. Memory

1. Take notes and refer to them;

1. Modify my checklists at home

2. Processing speed

2. Allow more time; avoid rushing;

2. Talk to my supervisor about

3. Attention to detail

3. Slow down; double-check my work;

3. Use a line guide at home and work;

4. Word finding

4. Organize my thoughts before I

4. Use a script to organize my

use my datebook and procedural checklists.

ask others to slow down or repeat themselves.

use a line guide or my finger to scan; highlight key information.

speak; describe what word I’m searching for; use similar words.

and work to stay on top of my responsibilities; take notes at work; keep my modified job position.

deadlines; break down work tasks into doable subgoals that I can accomplish at a reasonable pace; plan for extra time with my home tasks and don’t do them late in the day when I am tired.

allow time to double-check my work; avoid distractions.

thoughts and bring this to work meetings and my doctors’ appointments.

(continued)

FIGURE 3.12.  (continued)

84

Clinical Approaches and Techniques Emotional/Social Strengths*

1.  Motivated to make progress 2.  Learning to be open to feedback 3.  Friendly 4.  Caring and helpful *Can be good or better. Challenges

Compensations

Real-World Applications

1. Frustration

1. Remind myself that I am trying my

1. Take a short break to reset if I feel

2. I’m hard on myself

2. Be patient and compassionate

2. Set doable goals at home; talk to

3. Awareness,

3. Talk with my therapists; trust the

3. Be mindful of my strengths and

4. Resistance

4. Watch my “yeah, buts”; have an

4. Express appreciation to my family

acceptance, and realism

best, and others are too; talk with my psychotherapist; take my mood medication.

toward myself; learn from my mistakes; ask for feedback.

process; always use my compensations.

attitude of gratitude toward CTN.

frustrated at work; work with my family about situations that annoy me.

my work supervisor about realistic expectations.

challenges and let them guide my everyday duties at home, in the community, and at work; learn from my good and negative experiences; maintain long-term sobriety.

FIGURE 3.12.  (continued)

during family milieu meetings; self-monitor my reactions to constructive feedback from my work supervisor.



Techniques to Address Cognitive Skills 85

Healthy Living Module

During the healthy living module, survivors learn ways to improve their overall health, maintain a healthy existence, and optimize brain function, also highlighting compensation usage. Topics constitute (1) features of healthy living, including nutrition and hydration; (2) nutrition strategies that facilitate peak brain performance; (3) the merits of proper physical activity, sleep, and stress management; and (4) maintaining a balance of endeavors to foster resilience. Figure 3.13 provides a description of the course content and group exercises. Group facilitators can include neuropsychologists, rehabilitation psychologists, speech therapists, occupational therapists, and a dietitian, as available and appropriate to the objectives. Participants first complete the Healthy Living Self-­Assessment (see sample Form 3.8 and as completed by Luna in Figure 3.14, p. 90). Facilitators review germane topics on handouts and promote active group discussions. For example, when discussing nutrition, participants are invited to generate examples of fruits, vegetables, lean proteins, whole grains, and processed versus unprocessed foods. Incorporating SMART (specific, measurable, action-­oriented, reliable, time-based) goal setting (Lawler & Bilson, 2013), patients are divided into dyads or triads and complete a personalized worksheet, stating one shortterm individual objective per topic (e.g., general nutrition) (see the lower portions of Form 3.8, used for such an exercise, and the examples given by Luna in Figure 3.14). Next, they identify three steps to succeed in meeting this target, specifying one or more cognitive compensations. The emphasis is achievable goals based on strategic stepwise subcomponents. Individuals share these with the group for pointers, modeling, comradeship, and accountability. Connections between each healthy living component and top cognitive, emotional, and behavioral functioning are underscored, in addition to a review of risks associated with poor adherence to these healthy habits. Follow-­up with suitable interdisciplinary therapists outside of the group maintains momentum in these lifestyle changes.

Memory Compensations Group at the CTN General Overview and Goals At our center, initial interventions for external memory aids begin with intensive datebook instruction. This occurs primarily in speech and occupational therapies, with supplemental practice across other therapy domains (see Klonoff, 2010, for the conceptual and actual datebook training procedure). In individual sessions, the patient works with his or her core team to identify what datebook system is ideal. Options include a paper datebook (e.g., FranklinCovey with “month at a glance,” two pages per day); or an iPad and smartphone method, for those with better working and procedural memory and a “techy” orientation (see Chapter 6 for more details). Foundational procedural abilities are taught based on how much assistance and prompting are needed by the therapist (and family) for the patient to enter and check assignments as well as a goal-­setting exercise to increase buy-in and self-­sufficiency. Memory compensations group is quintessential for psychoeducation and coaching. The purpose is to (1) learn about the memory system in the brain and mechanisms to compensate for limitations; (2) understand how a datebook improves memory, planning, and organization; and (3) learn and practice note-­taking and planning. The focus is both internal

86

Clinical Approaches and Techniques

1. Introduction a. Group exercise: Fill out the Healthy Living Self-Assessment worksheet (see Form 3.8) and then review as a group. b. Group discussion: What does healthy living mean to you? c. Components of healthy living: Nutrition/hydration, exercise/physical activity, sleep, stress management, balance (mind/body relationship) d. Benefits of healthy living: Improved cognitive functioning, energy, mood, quality of life, and reduced risk of illness e. Role of compensations and planning ahead to make healthy changes f. SMART goals (specific, measurable, action-oriented, realistic, time-based) 2. Topic #1: General Nutrition a. Group exercise: Discuss the group’s impression of what are and are not healthy foods. b. Overview of nutrient density: High amounts of vitamins, minerals, and antioxidants and choosing colorful and unprocessed foods c. Review of the MyPlate handout at www.choosemyplate.gov d. Types of foods: i. Carbohydrates as the brain’s main fuel source ii. Lean protein sources: fish, chicken, beef, beans, tofu, eggs, cheese a. Examples of whole grains, vegetables, and fruits iii. Protein to support muscle and lean body mass: a. Milk, yogurt iv. Dairy: a. Examples of milk, cheese, yogurt v. Fats: a. Good fats versus bad fats b. Choosing plant and vegetable oils for optimal health e. Portion sizes: Protein and grain = 1/2 of plate; vegetable = 1/2 of plate i. One serving of fruit = tennis ball size f. Food as fuel: How to improve nutrient density: i. Choose “lean and green”; build a healthy plate; manage caloric intake; and avoid solid fats, added sugars, and salt g. MIND diet, Mediterranean diet, and DASH diet as examples of healthy nutritional approaches h. Hydration as essential for brain function: i. Water as the best source of hydration ii. Recommendation for optimal water intake each day i. Small-group exercise with the Healthy Living Self-Assessment worksheet (Form 3.8): Choose a personal goal related to Topic #1. Then identify steps, strategies, and compensations to help meet this goal. 3. Topic #2: Nutrition Strategies That Support Optimal Brain Function a. Mindful eating: Eating with awareness and attention; being aware and paying attention to the current moment; and getting out of “autopilot” b. Interval eating (meal spacing): i. Maintain blood sugar and energy, refuel your body, avoid overeating. c. Environmental control: i. Adding the foods to your environment that support nutrition goals ii. Taking away foods that are obstacles to your nutrition goals d. Planning ahead: i. Meal planning and creating a grocery list ii. Packing a lunch and/or snacks if you are going to be out for the day iii. Carrying a water bottle wherever you go (continued)

FIGURE 3.13.  Healthy living module content.



Techniques to Address Cognitive Skills 87 e. Small-group exercise with the Healthy Living Self-Assessment worksheet (bottom of Form 3.8): Choose a personal goal related to Topic #2. Then identify steps, strategies, and compensations to help meet this goal. 4. Topic #3: Exercise and Sleep a. Group exercise: Discuss the group’s views on exercise and sleep habits. b. Definition of exercise: Anything beyond your daily activity: i. Examples: going for a walk or a hike; doing home exercise programs; taking the stairs instead of the elevator c. Benefits of exercise: i. Improves physical health functions—blood pressure, metabolism, weight loss/ maintenance, sleep, energy—and decreases disease risks ii. Improves cognitive functions: attention, concentration, memory iii. Improves mood: reduces depression, anxiety, relieves stress, increases energy level d. Types of exercise: i. Cardiovascular: fast walking, running, swimming, cycling, sports ii. Strength training: weight lifting, pilates, yoga iii. Stretching/flexibility: stretches, yoga, tai chi e. Movement-oriented versus sedentary activities: i. Movement-oriented = activities that involve movement ii. Sedentary = activities that involve long periods of sitting f. Group activity: Watch YouTube video on why sitting is bad for you. www.youtube.com/watch?v=wUEl8KrMz14&feature=youtu.be g. How to incorporate more activity into your life: i. Be realistic: What will you enjoy? Does it fit within your budget? ii. Try and incorporate physical activity daily. iii. Plan ahead. h. The importance of sleep: i. Vital for our physical, mental, emotional, and spiritual well-being ii. Improves focus, decision making, and connection with ourselves and others iii. A time of intense neurological activity, including memory consolidation, brain and neurochemical cleansing, and cognitive maintenance iv. Risks of chronic sleep deprivation: diabetes, heart attack, stroke, cancer, obesity v. Optimal sleep recommendations vi. Handout on sleep hygiene strategies (Klonoff, 2014) i. Small-group exercise with the Healthy Living Self-Assessment worksheet (Form 3.8): Choose a personal goal related to Topic #3. Then identify steps, strategies, and compensations to help meet this goal. 5. Topic #4: Stress Management and Balance a. Objectives: i. Learn about the impact of chronic stress on my health and well-being. ii. Identify my own signs of stress. iii. Learn coping strategies and ways to find balance to support my well-being. b. Definition of stress: Changes that cause physical, cognitive, or emotional strain; feeling overwhelmed i. This is a normal reaction in the body when responding to change. ii. The goal is to learn to respond effectively to stress, not “get rid” of it. c. Homeostasis: The body in balance i. Sympathetic (autonomic) nervous system: “Fight, flight, or freeze” ii. Parasympathetic: Rest and digest (continued)

FIGURE 3.13.  (continued)

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Clinical Approaches and Techniques

d. Overview of the fight or flight reaction: i. Survival mechanism that allows us to respond to a life-threatening situation ii. Involves an instant sequence of hormonal changes and physical responses that help us fight the threat or flee iii. Brief review of relevant neuroanatomy affecting the amygdala, hypothalamus, and cerebral cortex e. Chronic stress: i. Stress that continues over a long period of time ii. Can significantly affect your physical and emotional health f. Potential effects of stress with examples: i. Physical (e.g., fatigue, sleep problems, headaches, stomach discomfort, muscle pain and tension, increased sweating, back or neck pain, weakened immune system) ii. Cognitive (e.g., difficulties with concentration, memory, slowed thinking, brain fog, and decision making) iii. Emotional/behavioral (e.g., irritability, anger, decreased motivation, anxiety and worry, depression, sadness, restlessness, social withdrawal, mood instability, reduced sex drive, overeating) g. Group exercise: Discuss personal stressors. h. Stress cannot always be avoided but it can be managed. i. Coping strategies: i. Notice the stress. ii. Attend to problems rather than ignore them. iii. Focus on what you can control in the moment. iv. Create a routine related to exercise, rest, relaxation, and self-care. v. Kind thoughts; be curious and open. vi. BREATHE. vii. Prioritize what is most important. viii. Pay attention to what you say to yourself—your words matter. ix. Be kind to yourself and others. x. Get support from others (e.g., community organizations). j. Other strategies for stress management: i. Engage in regular physical activity. ii. Get enough sleep. iii. Drink enough water. iv. Relax your muscles (massage, stretching, yoga). v. Focus on the positive. vi. Practice relaxation strategies: a. Mindfulness: Paying attention on purpose, remaining in the present moment without making judgments b. Group exercise: Mindfulness, belly breathing, and 6:6 breathing vii. Manage your time by planning ahead (making time for hobbies, recreation, and important people in your life). viii. Seek psychotherapy and psychiatric help, as needed. ix. Talk with your support system (e.g., family, friends). x. Focus on improving awareness, acceptance, and realism in adapting to your brain injury. k. Having a balanced life increases your ability to deal with stress and adversity: i. Consider all aspects of your life: relationships; work; health and fitness; spirituality; and recreation. (continued)

FIGURE 3.13.  (continued)



Techniques to Address Cognitive Skills 89 ii. Why is it important to have balance? a. Essential for happiness and overall well-being b. Better able to focus one’s attention and energy on meeting goals, taking action, and moving forward in a positive way l. Steps that can help you achieve balance: i. Understand your priorities. ii. Decide where to put your energy and time, and what to let go of. iii. Set goals: a. Think about the end result of what you want to accomplish. b. Set specific and measurable goals as to what you will do to make your life more balanced, and to help with emotional self-care. iv. Get organized and plan ahead: a. Use your memory system to plan ahead. b. Create a structured plan for each day that incorporates your goals and the things that are important to you. m. Take care of yourself: i. Build in time for minibreaks during the day for relaxation and fun. ii. Take prescription medication as recommended; do not take supplements without medical clearance. iii. Avoid alcohol and recreational drugs. iv. Remain nonjudgmental. n. Small-group exercise with the Healthy Living Self-Assessment worksheet (Form 3.8): Choose a personal goal related to Topic #4. Then identify steps, cognitive compensations, and coping tools to help meet this goal.

FIGURE 3.13.  (continued)

tactics such as mnemonics, visual imagery, rehearsal and organizational techniques, associations, chunking; and external methods, including errorless learning, note-­taking, and datebooks (Eberle, Bergquist, & Kingsley, 2022; Fish & Brentnall, 2017; Klonoff, 2010; Lajiness-­O’Neill, Erdodi, Mansour, & Olszewski, 2013; Powell, 2017).

Structure and Process Memory compensations group is facilitated by speech therapists and neuropsychologists/ rehabilitation psychologists and generally meets twice per week for 45-minute sessions, spanning 8 weeks. The therapist-­to-­patient ratio is determined based on group members’ needed levels of assistance. In our setting, there is typically a 3:1 patient-­to-­therapist ratio. Figure 3.15 summarizes the content and exercises; it is divided into several modules: (1) an overview of the memory system, (2) datebook systems’ organization and maintenance, (3) how to write memory assignments, (4) note-­taking strategies, (5) organization, and (6) planning ahead.

Protocol Information in memory compensations group is considered utilitarian, with an emphasis on psychoeducation, research, and compensations that can transition to patients’ home and community settings. For example, group members review recent evidence indicating that

1—Always  2—Most of the time  3—Sometimes  4—Never  1) I understand the importance of staying well hydrated and feel my daily water intake is adequate.

1 2 3 4

 2) Water is my primary fluid for optimal hydration.

1 2 3 4

 3) I am mindful about what I eat and try to eat nutritiously.

1 2 3 4

 4) I incorporate fruits and vegetables into most meals.

1 2 3 4

 5) I incorporate lean sources of protein into most meals.

1 2 3 4

 6) I make healthy choices when eating away from home.

1 2 3 4

 7) I preplan most meals and snacks.

1 2 3 4

 8) I get at least 8 hours of sleep every night.

1 2 3 4

 9) I incorporate some type of physical activity into each day.

1 2 3 4

10) I use my memory system to help organize my time.

1 2 3 4

11) I feel that I am able to manage my stress effectively.

1 2 3 4

12) I take good care of myself physically and mentally.

1 2 3 4

13) I know what my priorities are and I am mindful about how I choose to spend my time.

1 2 3 4

14) I have difficulty with follow-through when I am trying to make healthy changes to my lifestyle.

1 2 3 4

15) My levels of energy and motivation are usually very good.

1 2 3 4

Healthy Living Sample Goal Worksheet TOPIC #2—Nutrition Strategies That Support Optimal Brain Function Goal: I will plan ahead and use environmental control to help me eat at least 2 servings of vegetables every

day.

This is what I will do to accomplish my goal:

1) Plan meals and snacks that include vegetables. 2) Keep sugary foods out of the house so that I am less tempted to eat those when I am hungry. 3) Cut up vegetables on the weekends so that they are easy to add to meals and to have for snacks during the week. This is how I will use my compensations to make it happen:

1) Use my home independence checklist and family milieu meetings on Saturday mornings to plan my meals and snacks for the week. 2) Write a memory assignment in my datebook to talk with my family about my goal and ask for their help with not bringing sugary foods into the house. 3) Use a checklist when preparing my lunch and snacks for the next day that includes a reminder to add vegetables. How can my therapists help?

1) I will review this information with my occupational therapist so she can help me develop proper compensations. 2) I will update my dietitian about my progress and also have her speak with my family about environmental control. 3) I will keep my psychotherapist posted about how I’m adjusting to these lifestyle changes.

FIGURE 3.14.  Luna’s Healthy Living Self-­Assessment. 90



Techniques to Address Cognitive Skills 91 1. Learning Objectives a. To learn about the components of memory and cognitive strategies to aid memory b. To understand the importance of utilizing a datebook, including low-tech and high-tech systems for improving memory, planning, and organizational skills c. To learn and practice effective note-taking and planning skills d. To maximize independence in the home, community, school, and work environments 2. Memory Module Memory is important for: a. Interacting with others: i. Remembering conversations ii. Recalling the names and faces of people b. Managing home responsibilities: i. Remembering to take medications on time ii. Following through with chores and responsibilities c. Succeeding at work: i. Learning new procedures ii. Learning a computer program d. Good relationships with family members: i. Avoiding asking questions repeatedly and confabulation ii. Adapting to changes in routine iii. Learning new procedures/devices at home iv. Functioning in the community v. Remembering to use all compensations 3. Definition and Components of Memory a. What is memory? i. Encode: Take in information. ii. Consolidate: Store the information. iii. Recall: Retrieve the information. b. What are the stages of memory? i. Sensory ii. Attention iii. Short term iv. Long term c. Can memory improve? i. YES with time and therapy ii. By using compensations iii. And as other cognitive functions improve iv. Role of neuroplasticity: changes in neural networks in the brain through growth and reorganization (see www.youtube.com/watch?v=ELpfYCZa87g) d. What are the areas in the brain involved in memory? i. Frontal lobes ii. Subcortical regions iii. Cerebellum and basal ganglia e. Strategies for encoding: i. Pay attention and reduce distractions. ii. Have the intention to learn and recall information. iii. Make sure you understand what you are learning. iv. Simplify and streamline information and eliminate irrelevant information. (continued)

FIGURE 3.15.  Memory compensations group content.

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Clinical Approaches and Techniques f.

g.

h.

i. j. k.

l. m. n. o. p.

Short-term memory: i. Information learned within the previous few minutes, hours, or even days ii. Information is vulnerable to “slipping out” of memory and being forgotten if not rehearsed enough iii. Includes working memory iv. Commonly affected after brain injury Working memory: i. Ability to hold a small amount of information in your mind temporarily (e.g., telephone number, taking notes) ii. Will be forgotten if not further processed iii. The average person will remember 5–9 bits of information for 15–30 seconds. iv. Attention is important for working memory. v. Information moves to long-term memory when it is consolidated. vi. Strategies: a. Practice the information (rehearsal/repetition). b. Chunk the information (group small bits into larger chunks). Long-term memory: i. Encode and consolidate information to store information on a more permanent basis. ii. Will be structural changes to the neurons iii. Tends to be preserved after acquired brain injury Procedural memory: i. Skills for doing something like riding a bike, texting on the phone Incidental memory: i. Remembering without trying Prospective memory: i. Remembering to do something in the future ii. Strategies: 1. Establish habitual routines (e.g., always take medications at the same time). 2. Plan and use a datebook. 3. Use alerts and timers. 4. Use a backup prompt (e.g., a reminder object in a conspicuous place). Retrospective memory: i. Remembering the past Exercise: Discuss examples of each of the types of memory systems with real-world applications. Exercise: Do small exercises using various types of memory. Exercise: Do roll call based on various patient attributes and share personal internal and external compensations. Errorless leaning: i. Reduce errors by doing things the right way while learning. ii. Avoid guessing; look things up. iii. Is NOT trial and error. iv. Research shows that errorless learning translates to better performance. v. Strategies for errorless learning: 1. Note-taking 2. Datebook system 3. Procedural checklists 4. Not guessing 5. Asking for clarification vi. Exercise: Discuss personal examples of errorless learning you are using and the relevant compensations. (continued)

FIGURE 3.15.  (continued)



Techniques to Address Cognitive Skills 93 q. Memory problems after brain injury and possible solutions: i. Repeating things: Ask, “Did I tell you this already?” ii. Getting lost: Use GPS. iii. Difficulty taking in new information: 1. Make sure you understand what you are learning. 2. Ask someone to repeat and/or slow down. 3. Pay attention and reduce distractions. 4. Set the intention to learn. 5. Simplify/streamline information. iv. Difficulty learning/consolidating information: 1. Develop routines. 2. Rehearse and practice new information using the “little and often” rule. 3. Test yourself as you go. 4. Use retrieval strategies (mnemonics, acronyms). 5. Review associate information (related facts). 6. Use visualization (e.g., form an image in your mind’s eye). 7. Take and review notes. v. Difficulty remembering the steps of how to do something: Use checklists. vi. Confabulation (filling in the gaps): Ask for clarification about details and do not guess. vii. Forgetting a change in routine or where you put something: Establish habits and take notes. r. Cognitive functions supporting memory: i. Vision, hearing, and perception ii. Attention and focus iii. Speed of thinking iv. Comprehension of information v. Organization of information vi. Intention to remember/effort vii. Flexible thinking s. Common factors affecting memory and solutions: i. Fatigue and lack of sleep: Adopt a healthy sleep routine by consulting with therapists and physicians. ii. Stress and mood problems (e.g., anxiety, depression): Address mood and stress in psychotherapy and with a psychiatrist. iii. Substances/medications (e.g., alcohol, street drugs, narcotic pain killers): AVOID! t. Exercise: Discuss personal examples of memory problems and the solutions you are using. u. Exercise: Discuss your cognitive strengths that support your memory. 4. Datebook Systems Organization and Maintenance Module a. Research indicates that up to 30 years after neurorehabilitation, those who used memory compensations were more likely to live independently and keep competitive employment (Perumparaichallai et al., 2020). b. Functionally, using a datebook system will help me to: i. compensate for memory difficulties. ii. keep track of daily medical and work appointments. iii. stay on top of important details of my life. iv. record how I spend my day. v. plan social, family-, school-, and work-related events. c. Datebook assignments: i. Each week, you will get a score, based on the percentage of completed versus the number of assignments given. ii. You will announce weekly datebook scores in the milieu session as this holds you accountable and enables a solution-based discussion; this educates/inspires peers.

(continued)

FIGURE 3.15.  (continued)

94

Clinical Approaches and Techniques d. Datebook options: i. Traditional paper datebook: a. The FranklinCovey style b. 8.5 × 5.5 inch pages c. One or two pages per day ii. Electronic datebooks: a. Tablet computer b. Smartphone iii. Pros of a paper datebook system: a. Easier to learn how to use b. A good way to work on handwriting c. Indicates in research that handwriting information improves memory (Mueller & Oppenheimer, 2014) d. Will be easier to visualize the full day and month iv. Cons of a paper datebook system: a. Portability b. If lost, information cannot be recovered v. Pros of an electronic datebook: a. Portability b. Easier for visual, language, and writing impairments c. Has alarms (e.g., visual and auditory reminders) d. Can sync with family’s calendars e. Can “back up” data to prevent loss of information f. Can use separate apps (e.g., Reminders, Google Tasks) vi. Cons of an electronic datebook: a. Cost b. May be difficult to learn how to use and requires working and procedural memory c. Requires the patient’s ability or a family member to maintain and update it d. Setting too many alarms can get confusing e. Needs to be charged to operate e. Factors for assessing which system is best: i. Patients’ preferences ii. Fine- and gross-motor skills iii. Visual skills iv. Language skills v. Familiarity with a datebook system vi. Familiarity and interest in technology vii. Working and procedural memory viii. Availability of resources to purchase and maintain the electronic option ix. Availability of support for using/maintaining the system f. Datebook “Golden Rules”: i. “Plan to forget.” ii. Be consistent: Create a habit by writing assignments using the same procedure every time. iii. Check your datebook regularly throughout the day and decide what times are best. iv. Always record information in the proper location. v. Paper system: a. Keep 3 months of pages: last, current, and next month. b. File and keep old datebook pages for 1 year. c. Keep system clean and organized. d. Record information in the correct location. e. Keep adjunct tools handy (e.g., pencils, highlighter, day ruler).

(continued)

FIGURE 3.15.  (continued)



Techniques to Address Cognitive Skills 95 vi. Electronic system: a. Save your data. b. Keep your system organized. c. Record information in the correct location. d. Keep important tools handy (e.g., stylus, emergency contacts, passwords). g. Datebook system “no-no’s”: i. Do not leave it at home when going out. ii. Do not use it on the weekends. iii. Do not use sticky notes as a replacement. iv. Rely on someone else to remind you of responsibilities (e.g., appointments). v. Thinking you will remember something, you don’t write it down. vi. You do not transfer important notes and information from the daily pages to other locations. h. Exercise: Discuss which datebook system members of the group prefer and why. i. Exercise: Discuss your impressions about the “golden rules.” j. Exercise: Discuss as a group various functional applications of the datebook systems (e.g., therapy, home, community, work, school, and leisure/social activities). 5. Writing Memory Assignments Module a. Follow: i. Who assigned this and whom do I ask if I have questions? ii. What do I need to do? (Be specific.) iii. Where do I turn this in? iv. When is this due? v. Why am I doing this and what is the purpose? vi. Start with an action word such as ask, call, or complete. vii. Use standing memory assignments for reoccurring events. b. Datebook system accountability: i. Therapists log memory assignments given to patients. ii. Follow through with prospective assignments is calculated weekly and monthly and shared with the patient, milieu, family, and third-party payers. iii. Exercise: Give practice assignments using the “who, what, where, when, and why” system for paper and electronic systems and process how it went as a group. 6. Note-Taking Module a. Mnemonic for note-taking: Where, What, Review b. Step 1: i. Where does the note go? ii. Datebook versus program notebook versus note-taking app c. Step 2: i. What to write? a. Start with the date and topic/title. b. Summarize the main idea, important details, and next steps/action plan. c. Use familiar abbreviations. d. Step 3: i. Review what has been written: a. Make sure the information is accurate, complete, and makes sense. b. Repeat back your notes to the other person to verify. e. Exercise: Practice this three-step system with functional examples for therapy, home, community, work, school, and leisure/social activities and discuss as a group the benefits and struggles.

(continued)

FIGURE 3.15.  (continued)

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Clinical Approaches and Techniques

7. Organization Module a. Create tabs/folders in the datebook, program notebook, or apps: i. Incorporate good note-taking in all aspects of your life: therapy, home, community, work, school, leisure, and social. ii. Clean out/organize notes on a regular basis (e.g., weekly). iii. File, delete, or throw away unnecessary materials. iv. Exercise: Discuss as a group your organizational techniques for note-taking and various places and ways you use note-taking. 8. Planning Module a. “If you fail to plan, you are planning to fail” (Benjamin Franklin). i. Why plan ahead? a. Keeps you on track b. Keeps you organized c. Reduces stress and anxiety d. Enables you to be more independent ii. “A good plan is like a roadmap; it shows the final destination and usually the best way to get there” (H. Stanley Judd). iii. Planning is a complex skill: a. Related to frontal lobe functioning (e.g., problem solving, judgment, working memory) b. Also requires integration of other cognitive skills (e.g., comprehension, memory, information processing, attention to detail) c. Using a datebook system to plan regarded as an excellent external compensation b. Exercise: Discuss as a group functional examples of planning for therapy, home, community, school, work, and leisure/social activities and how the brain injury affects this for various group members. i. Planning entries: a. Do so for memory assignments that require multiple steps with due dates on several days. b. Use a planning entry(ies) to allow yourself enough time to complete the task before the due date. c. Step 1: Determine how to break down the task (e.g., complexity of the task, time needed, order of steps). d. Step 2: Record this information in your datebook on the right date and time. e. Step 3: Review your day; is the plan achievable based on other responsibilities? f. Setting alarms can be a useful adjunct. c. Exercise: Give the group examples and practice the process of planning entries (e.g., for a birthday party), taking into account what is realistic, how to delegate, and stay within time lines. d. Role of family: Stay informed to help with support, accountability, and generalization.

FIGURE 3.15.  (continued)

longhand note-­taking is superior for recall, deeper processing, and reframing of material compared to computerized notes on laptops (https://effectiviology.com/handwriting-­vs-­ typing-­how-to-take-notes; Mueller & Oppenheimer, 2014). Interspersed with didactics are practical group exercises with worksheets to reinforce concepts and emphasize the common experience. These include (1) examples of various types of memory (e.g., recalling digit strings for working memory or describing three personal short-term memory failures); (2) a review of the step-by-step protocol for entering memory assignments (see Klonoff, 2010); (3) note-­taking tasks for taking phone messages, recording “to do’s” at therapy and caregiver



Techniques to Address Cognitive Skills 97

meetings, and job offers; (4) how to write planning entries for creating a résumé, obtaining medical records to take to a doctor’s appointment, or arranging for a surprise party for a relative; and (5) a worksheet where patients identify their individualized memory challenges, the definition and examples, and specific useful strategies. Participants also engage in “fun” activities, where they are expected to (1) use their datebook to remind them to bring in items from home (e.g., a family photograph, favorite book); (2) do a roll call exercise whereby group members memorize each other’s first names, state of birth, favorite color, animal, movie, vacation, sports team, and the like, and rotate in recalling the data from memory; and (3) partake in informal “pop quizzes” during the group or more formalized tests for students, if fitting (see Figure 3.16 for a sample). Group brainstorming and input are underscored; everything encourages everyday examples and rote practice with the use of internal (e.g., mnemonics, associations, links) and external compensations. There is also constant carryover of all principles into multiple holistic program elements for generalization purposes.

LE S SO N S LE A R N E D 1. Evidence-­based research and clinical experience reveal that cognitive rehabilitation incorporates “bottom-­up” restorative and “top-down” compensatory approaches. Cognitive retraining exercises focus on standardized skills training that maximize self-­awareness, acceptance, and realism. It enriches life through generalization of principles. Avoid exclusive, rote task administration; instead, interweave process aspects, including emotional reactions and coping mechanisms. Prioritize psychoeducation about strengths, limitations, and personalized compensations; learning capabilities; error analysis; and goal setting. Link regular, mutual dialogue between the therapist and patient about clinic realizations to attainable real-life achievements in the home, community, school, and work. 2. Medically necessary group therapies are instrumental for boosting patients’ knowledge base; neuropsychological, speech, and language functioning; social interactions, and emotional and societal adaptations. Specify realistic objectives and performance maintenance, especially through compensation training. Adapt the group experience to size (even dyads or triads) as well as therapeutic and psychoeducational objectives. 3. The CTN program finds the psychoeducation group (composed of PEM, neuroanatomy, strengths and challenges, and healthy living modules) and memory compensations group to be “core courses.” Survivors aim to be their “own best experts” about their brain injuries through a journey with peers to foster awareness, acceptance, and realism. Therapists should serve as instructive, creative, and thought-­provoking facilitators, not lecturers, encouraging maximal metacognition, active learning, sharing, self-­discovery, and the application to community reintegration.

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Clinical Approaches and Techniques

MATCHING  1.    Memory assignment

a.  Notating something that needs to be done in the future

 2.    Planning entry

b.  Reoccurring task or event

 3.    Standing memory assignment

c.  Steps to complete a task or prepare for an event

TRUE/FALSE  4. TRUE OR FALSE: An important “Golden Rule” for using your datebook is to rely on someone else to remind you or assume you will remember.  5. TRUE OR FALSE: You should check your datebook regularly throughout the day.  6. TRUE OR FALSE: A common problem that people have when using their datebook is not using it on the weekends or leaving it at home when they depart from the house.  7. TRUE OR FALSE: It is not useful to write down the steps to complete a task when you write it in your datebook.  8. TRUE OR FALSE: It can be helpful to write down what you do over the weekend in your appointment schedule to get in the habit of using your datebook on the weekends and to help manage your time effectively. MULTIPLE CHOICE  9. What is a recommendation for maintaining organized notes? a.  Create tabs/folders. b.  Wait until the end of the year to clean your folders. c.  Take notes in many different locations. d.  All of the above. 10. Different datebook options include: a.  Paper systems b.  Electronic systems c.  A combination of paper and electronic systems d.  All of the above. APPLICATION QUESTIONS 11. Jenny’s boss told her she needs to pick up a delivery from James in the Accounting Department at 2:00 P.M. in the front lobby. Select the assignment that includes all of the important details: a.  Pick up delivery in front lobby at 2:00 P.M. b.  Pick up delivery. c.  Pick up delivery in front lobby. d.  Pick up delivery from James in front lobby at 2:00 P.M. 12. Amy asked you to turn in your timesheet on Tuesday at 8:15 A.M. to her mailbox. Match the “wh” questions to the corresponding answers. Who?   

a. Amy

What?   

b.  Amy’s mailbox

When?   

c.  Tuesday at 8:15 A.M.

Where?   

d.  Turn in your timesheet (continued)

FIGURE 3.16.  Sample memory compensations group test questions.



Techniques to Address Cognitive Skills 99 13. Frank was invited to his nephew’s birthday party next Saturday (a week from now). What are two planning entries he might write in his datebook to make sure he is prepared for the birthday party? 1)

2)

SHORT ANSWERS 14. What are two datebook “Golden Rules” and two datebook “no-no’s”?

FIGURE 3.16.  (continued)

FORM 3.1

Number Scan Task PURPOSE: This task works on focused attention, rapid visual scanning, and striking a balance between speed and accuracy. NUMBER OF TRIALS: Each set of four numbers is completed four times for a total of 16 trials. SCORING: The score on this task is the total target numbers marked minus the number of mistakes or omissions. REQUIRED SKILLS:

FUNCTIONAL EXAMPLES: Looking up phone numbers Using a calculator Paying bills Comparing prices in a store Balancing a checkbook ADD PERSONALIZED FUNCTIONAL EXAMPLES:

STRATEGIES:

EXPECTED PERFORMANCE: #1:

#3:

#2:

#4:

(relative to preinjury status)

%ILE: CURRENT ATTAINABLE GOAL: #1:

#3:

#2:

#4:

%ILE: From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

100

FORM 3.2

Summary Sheet for Cognitive Retraining Scores Name: Week #/Task

Monday

Tuesday

Wednesday Thursday

Friday

Date: 1: 2: 3: 4: Date: 1: 2: 3: 4: Date: 1: 2: 3: 4: Date: 1: 2: 3: 4: Date: 1: 2: 3: 4:

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

101

FORM 3.3

Psychoeducation Group Goals Name:   Date: 

 Module:    

During my participation in psychoeducational group, I would like to work on the following goals: Participation and initiation (getting tasks started): • • • My Goal: Comprehension (understanding what is said): • • • My Goal: Note-taking: • • • My Goal: Verbal expression (speaking): • • • My Goal: Communication pragmatics (style of communication): • • • My Goal: Other:

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

102

FORM 3.4

Sample PEM Placements Name:   Date:     Self Phase

Therapists Color

Phase

Color

Physical Cognitive Emotional Phase Options: 4, 4/5, 5, 5/6, 6 Color Options: G, G/Y, Y, Y/R, R (G = green zone; Y = yellow zone; R = red zone) Reasons for Self-Rating

Reasons for Therapists’ Ratings

Physical Phase:

Physical Phase:

Physical Color:

Physical Color:

Reasons for Self-Rating

Reasons for Therapists’ Ratings

Cognitive Phase:

Cognitive Phase:

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

103

Sample PEM Placements  (page 2 of 2) Cognitive Color:

Cognitive Color:

Reasons for Self-Rating

Reasons for Therapists’ Ratings

Emotional Phase:

Emotional Phase:

Emotional Color:

Emotional Color:

Write a script about the similarity and/or differences of your ratings versus the therapists’ ratings. Please be prepared to share this with the group.

104

FORM 3.5

Neuroanatomy Summary Worksheet Name:   Date:     The type of brain injury I have is:

The brain areas primarily affected are:

Think about the location and type of your brain injury. Talk with your psychotherapist and list at least three difficulties you have as a result of your brain injury. Next, list the compensations you use for these difficulties. Difficulty

Location of Injury

1. 

Compensations I Use for This Difficulty 1. 

2. 

3. 

2. 

1. 

2. 

3. 

3. 

1. 

2. 

3. 

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

105

FORM 3.6

Strengths and Challenges List Name:   Date:        Physical Strengths* 1.  2.  3.  4.  *Can be good or better. Challenges

Compensations

Real-World Applications

1. 

1. 

1. 

2. 

2. 

2. 

3. 

3. 

3. 

4. 

4. 

4. 

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

106

Strengths and Challenges List  (page 2 of 3) Cognitive/Language Strengths* 1.  2.  3.  4.  *Can be good or better. Challenges

Compensations

Real-World Applications

1. 

1. 

1. 

2. 

2. 

2. 

3. 

3. 

3. 

4. 

4. 

4. 

(continued)

107

Strengths and Challenges List  (page 3 of 3) Emotional/Social Strengths* 1.  2.  3.  4.  *Can be good or better. Challenges

Compensations

Real-World Applications

1. 

1. 

1. 

2. 

2. 

2. 

3. 

3. 

3. 

4. 

4. 

4. 

108

FORM 3.7

Pre‑ and Postmodule Survey Premodule Survey Name:   Date:     Strongly Disagree Disagree Not Sure

Agree

Strongly Agree

I have a good understanding of my strengths and challenges since my brain injury. I am committed to using my compensations.

I know how my challenges and compensations will affect my day-to-day life.

Postmodule Survey Name:   Date:     Strongly Disagree Disagree Not Sure

Agree

Strongly Agree

I have a good understanding of my strengths and challenges since my brain injury. I am committed to using my compensations.

I know how my challenges and compensations will affect my day-to-day life.

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

109

FORM 3.8

Healthy Living Self‑Assessment Name:   Date:     1—Always  2—Most of the time  3—Sometimes  4—Never  1) I understand the importance of staying well hydrated and feel my daily water intake is adequate.

1 2 3 4

 2) Water is my primary fluid for optimal hydration.

1 2 3 4

 3) I am mindful about what I eat and try to eat nutritiously.

1 2 3 4

 4) I incorporate fruits and vegetables into most meals.

1 2 3 4

 5) I incorporate lean sources of protein into most meals.

1 2 3 4

 6) I make healthy choices when eating away from home.

1 2 3 4

 7) I preplan most meals and snacks.

1 2 3 4

 8) I get at least 8 hours of sleep every night.

1 2 3 4

 9) I incorporate some type of physical activity into each day.

1 2 3 4

10) I use my memory system to help organize my time.

1 2 3 4

11) I feel that I am able to manage my stress effectively.

1 2 3 4

12) I take good care of myself physically and mentally.

1 2 3 4

13) I know what my priorities are and I am mindful about how I choose to spend my time.

1 2 3 4

14) I have difficulty with follow-through when I am trying to make healthy changes to my lifestyle.

1 2 3 4

15) My levels of energy and motivation are usually very good.

1 2 3 4

Healthy Living Sample Goal Worksheet TOPIC #2—Nutrition Strategies That Support Optimal Brain Function Goal:

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

110

Healthy Living Self‑Assessment  (page 2 of 2) This is what I will do to accomplish my goal:

This is how I will use my compensations to make it happen:

How can my therapists help?

111

4 Techniques to Address Communication Pragmatics Skills and Emotions with Erika E. Ehlert and Padmaja Bollam

C LI N I C A L V I G N E T TE Rachel was a 20-year-old female who suffered an intraventricular hemorrhage in the right frontal lobe and hydrocephalus at age 8. She had an individualized education plan (IEP) in school and was a target for bullying. Rachel received some limited therapies provided through her school, but no counseling. Once she graduated from high school, she was at loose ends, as she tried community college but could not pass her classes. Her parents were baffled and helpless as to next steps. Rachel’s physiatrist recommended that they contact the Department of Economic Services Vocational Rehabilitation Services and Rachel qualified for holistic therapies at the Center for Transitional Neuro-­Rehabilitation (CTN) with a goal of finding and keeping her first job. In conjunction with the typical array of neuropsychological deficits affecting visual learning and memory, complex attention, and executive functions, Rachel presented with significant communication pragmatics problems. Behaviorally, she demonstrated arrested development, interacting more like a young adolescent. In the milieu, she was observed to be self-­centered, hyperverbal, rigid, disinhibited, and perseverative. Eye contact was poor. She did not recognize these problems but reported feeling ostracized and lonely throughout her life without knowing why. She was emotionally volatile and easily overwhelmed, especially in group atmospheres. Nonetheless, she was drawn to the idea of intensive therapies and being part of a milieu. Her parents were all for the idea and, together, they embarked on what they saw as an entrée to happiness and a promising future. Rachel, who was Jewish, was assigned to a psychotherapist of that faith at her request. Now the hard work began; Rachel realized she was in the graduate school of neurorehabilitation. Within a month, though, the honeymoon abruptly ended. Although initially keen about the emphasis on fixing her social missteps, she soon became snarky toward her therapists when given education about communication pragmatics and moment-­to-­moment feedback on her professional behavior logs. 112



Techniques for Communication Pragmatics Skills and Emotions 113

Emotionally, Rachel felt under the microscope, interpreting intervention as intrusion. The therapy experience triggered horrible memories about ableism, with peers ridiculing and intimidating her in and outside of school as well as discriminatory comments about her Jewish heritage. She manifested “stuckage” related to her poor appreciation of her communication pragmatics skills and overt resistance in the form of verbal tantrums toward her therapists and parents. Cognitive distortions were plentiful, for instance, polarized thinking, disqualifying positives, overgeneralization, catastrophizing, and personalization. A saving grace in the process was Rachel’s emotional connection to her psychotherapist, largely because of the commonality of their religious beliefs and her empathic responsiveness. Her psychotherapist incorporated a combination of psychodynamic, narrative therapy, motivational interviewing, cognitive-­behavioral, psychoeducational, positive psychology, and family schema approaches to catalyze prospective reinvention and reinvigoration and guide Rachel to visualize a better future for the first time. For example, mutually understood religious and biblical references were used to illustrate concepts, such as being a mensch and performing mitzvahs for perspective taking and kindness toward others. Reframed cognitions allowed middle-­ground thinking, valuing positivity in herself and others, and logical alternatives. Rachel also worked closely with the CTN psychiatrist and started and attained a therapeutic dose of sertraline, which boosted her mood and coping capacity. The sting of criticism transformed to appreciation for caring, constructive feedback. This sound foundation enabled Rachel to reframe her grief, disillusionment, and distrust as mastery, confidence, and optimism. Being a member of the communication pragmatics group and group psychotherapy helped Rachel recognize she was not alone in her social awkwardness and alienation, and that she could trust the intentions of the team to truly assist her. She experienced a sense of belonging for the first time, especially as peers complimented her on her gains and newfound sensitivity toward others. Rachel went on to obtain her first-ever job working at a library. She loved the balance between working solo with small-group interactions with warm and welcoming co-­workers. By the time of therapy termination, Rachel had developed a rich and futuristic list of social, productive, and meaningful pursuits. For her “cake day,” she decorated and shared a cake in the colors of the PEM for all of her “milieu buddies.”

Addressing Communication Pragmatics and Emotional Challenges in Post‑Acute Neurorehabilitation Emotional and social well-being are inextricably linked and are typically impacted after acquired brain injury (ABI) (Klonoff, 2010; Proctor & Best, 2019). Typical emotional and psychosocial sequelae are depression, anxiety, emotional dysregulation, substance abuse, poor relationship satisfaction, and a meager quality of life (Bogner et al., 2019; Proctor & Best, 2019; for reviews, see Klonoff, 2010; Neumann, 2017). Over time, social networks or “tiers of support” including family, friends, work and school colleagues, supervisors, and teachers can become alienated; research has found that long-term social isolation and loneliness are major adjustment concerns for survivors (Batchos, Easton, Haak, & Ditchman, 2018; Proctor & Best, 2019; see Klonoff, 2010, for a review). Multimodal neurorehabilitation efforts should be directed to ameliorating mental health challenges as well as remediating social problem-­solving and communication pragmatics

114

Clinical Approaches and Techniques

challenges, so as to restore subjective well-being, community involvements related to leisure and productivity, and life satisfaction (Batchos et al., 2018; Klonoff, 2010; Proctor & Best, 2019). This chapter first explains individual and group treatment techniques to improve communication and interpersonal skills. Techniques of individual and group psychotherapy in conjunction with psychiatric care at CTN are described to effectively improve emotional health, thereby facilitating social adaptation. Under the auspices of medical necessity, all CTN patients participate in individual psychotherapy and are eligible for the other interventions described in this chapter based on neurological status and clinical needs, regardless of their designated CTN program.

Definition, Assessment, and Treatment of Communication Pragmatics in Post‑Acute Neurorehabilitation Communication pragmatics have been defined as the social rules governing communication, such as the abilities responsible for discourse and functional conversational exchanges (Cummings, 2007; Friedland & Miller, 1998; Wiseman-­Hakes, Stewart, Wasserman, & Schuller, 1998). It requires a comprehensive set of proficiencies in naturalistic locales; limitations can be “socially punishing” (Sohlberg & Mateer, 2001). Communication pragmatics also denote the individual’s capability to perceive, interpret, and respond to contextual, situational, and social components of conversations (Wiseman-­Hakes et al., 1998; see Figure 4.1 for more details). For example, after ABI, adults may miss or misinterpret verbal and nonverbal cues for turn taking (Murphy, Huang, Montgomery, & Turkstra, 2015). Communication pragmatics are multifactorial (Bosco, Angeleri, Sacco, & Bara, 2015; Cummings, 2007; Douglas, 2017; Friedland & Miller, 1998; Hill, Claessen, Whitworth, Boyes, & Ward, 2018; Keohane & Prince, 2017; McDonald & Cassel, 2017; Struchen, 2014) (see Figure 4.2, pp. 119–120, for their components). Impairments often pose barriers for social competency after traumatic brain injuries (TBIs) and also affect community integration, employability, and friendships, as well as marital, intimate, and family relationships (­Douglas, 2017; Meulenbroek, Bowers, & Turkstra, 2016; Sohlberg, Hamilton, & Turkstra, 2023; Struchen, 2014; for reviews, see Harrison-­Felix et al., 2018; Wiseman-­Hakes et al., 1998). (See also Chapter 8 for more information on friendships and dating relationships.) Assessments for communication pragmatics encompass informal observational material and/or formal instruments and need to be multifaceted, collaborative, interdisciplinary, customized, flexible, contextually based, and ecologically valid (Douglas & Togher, 2017; McDonald & Cassel, 2017; Sohlberg & Turkstra, 2011). It is difficult to quantify communication pragmatics deficits in real-life interactions and this is a time-­consuming and subjective enterprise (Sohlberg & Mateer, 2001); nevertheless, there are various assessment procedures as depicted in Figure 4.2 (see Douglas & Togher, 2017, for specifics; Keohane & Prince, 2017; Klonoff, 2010; McDonald & Cassel, 2017; Sohlberg & Mateer, 2001). A positive by-­product of the intake process is the catalyzation of a burgeoning awareness phenomenon, also incorporating strengths and challenges checklists (Keohane & Prince, 2017; Klonoff, 2010).



Techniques for Communication Pragmatics Skills and Emotions 115 1. Definition of Communication Pragmatics a. The social rules of communication include three components: i. Using language for: a. Greeting b. Informing c. Demanding d. Promising e. Requesting ii. Changing language according to the listener and situation iii. Following the rules of conversation: a. Turn taking b. Staying on topic c. Restating when misunderstood d. Appropriate facial expressions e. Appropriate physical distances between speakers b. Communication pragmatics require: i. Language skills: a. Word finding/word choice b. Forming sentences c. Organizing thoughts d. Understanding ii. Cognitive skills: a. Self-monitoring b. Memory c. Processing speed d. Executive functions (e.g., planning, flexible thinking) iii. Emotional control 2. Common Communication Pragmatics Difficulties after Brain Injury (Klonoff, 2010) a. Vocalization—difficulty monitoring volume, tone, and/or rate of speech b. Thought organization—difficulty organizing one’s thoughts for clear communication c. Active listening—difficulty paying attention to the speaker d. Nonverbal communication—inability to read/interpret social cues e. Topic maintenance—difficulty sticking with the topic f. Hyperverbality—talking too much g. Tangentiality—difficulty staying on topic h. Turn taking—difficulty balancing talking and giving others a chance to speak i. Situational use of language—difficulty monitoring and appropriately responding to the environment j. Age-appropriate communication—reduced awareness of actions and words based on age and maturity k. Etiquette—lack of use of polite language and/or inappropriate behaviors or responses l. Impulsivity—speaking or acting without thinking m. Disinhibition—inability to inhibit or control inappropriate social behavior n. Snarkiness—irritability, grouchiness, low frustration tolerance o. Egotistical behavior—self-centeredness and difficulty seeing others’ points of view p. Flat affect—decreased facial expression and range of feelings and expression q. Lack of initiation—difficulty starting a conversation r. Group exercise: Fill out the Communication Pragmatics Questionnaire (see Form 4.1). Write a memory assignment to review ratings with your speech therapist and psychotherapist. (continued)

FIGURE 4.1.  Communication pragmatics group content.

116

Clinical Approaches and Techniques

s. Group exercise: Write out at least two communication pragmatics strengths, two difficulties, and two goals on your Communication Pragmatics Strengths and Difficulties Worksheet (see Form 4.1) and be prepared to discuss as a group. t. Functional implications: i. Problems with social skills after brain injury negatively impact: a. Quality of life b. Relationships in the home c. Social/community involvements d. School e. Work ii. Social isolation and having few or no hobbies/recreation are often persistent problems after brain injury: a. Later stages of recovery may be more impacted than during early recovery. b. Reduced community reintegration causes emotional/behavioral changes (e.g., loneliness). c. Due to limited awareness, patients do not notice difficulties in communication pragmatics. u. Exercise: Role-play talking to a close friend versus a coworker addressing differences in communication pragmatics (e.g., language and tone). v. Exercise: Separate into groups of two to discuss how a previous job duty was challenging: a. Person 1: How would you tell a coworker about a previous job you did not like? b. Person 2: How would you tell a close friend about a previous job you did not like? c. Discuss how communication pragmatics vary in these two examples. 3. Egocentrism a. Definition: i. Self-centeredness ii. Difficulty seeing others’ points of view iii. Thinking only of oneself without regard for the feelings or needs of others iv. Is also sometimes related to preinjury personality style 4. Perspective Taking a. Definition: i. The ability to think about your own and others’ points of view ii. Putting yourself in someone else’s shoes iii. Being able to step outside of a situation b. Why does egocentrism happen? i. Due to damage to the: a. Frontal lobes: i. Difficulty with flexible thinking (e.g., taking others’ perspectives) and impulsivity (saying something without thinking about it first) b. Temporal lobes: i. Short-term memory problems ii. Not remembering facts about others or reactions from past conversations or events iii. Misinterpreting others c. Right hemisphere: i. Difficulty showing and understanding nonverbal communication ii. Not picking up on social cues (e.g., facial expressions or that someone does not have time to talk) c. Functional impacts of egocentrism: i. Self-centered behavior (e.g., “it’s all about me”) ii. Difficulty showing empathy (continued)

FIGURE 4.1.  (continued)



Techniques for Communication Pragmatics Skills and Emotions 117

d.

e. f. g.

h.

i.

iii. Appearing uninterested in others iv. Being perceived as a poor listener (e.g., dominating conversations) v. Having poor conversational skills (e.g., turn taking) vi. Inflexibility vii. Difficulty being a team player at work or school viii. Social isolation ix. Putting oneself or others at risk by not listening x. Is the #1 most frequently reported problem described by families Compensations for egocentrism: i. Think about your behavior and how you come across: a. Am I talking too much? b. Am I asking more questions than everyone else? c. Am I taking into consideration whom I am talking to? d. Is this the right time and place to talk? ii. Use a log or keep a journal to track behavior: a. Be open to feedback from family, therapists, and friends. b. Review feedback with your therapists (speech therapist and psychotherapist). iii. Consider the situation from the other person’s point of view. iv. Try to ask about others and learn more about them. v. Be an active listener. vi. Take notes to help with memory difficulties. vii. Use scripts or key phrases: a. Ask, “Enough about me, what about you?” b. Ask, “What’s new with you?” c. Ask, “Let’s start with your thoughts on . . . ” viii. Do not start every sentence with “I.” ix. Recognize that a healthy social support system leads to good quality of life. x. Get involved with team or community projects. xi. Volunteer and give back to society. Exercise on egocentrism: Identify an egocentric behavior and brainstorm about specific ideas for how to be less self-centered. Exercise on egocentrism: Share examples of characters in movies or TV or books who demonstrate egocentric versus selfless behaviors and compare and contrast. Exercise on turn taking: i. Ask your partner what he/she did over the weekend or his/her favorite summer activity. ii. Keep the conversation going back and forth without making an egocentric comment. iii. Discussion/reflection: a. Was this difficult or easy and why? b. Did it take you very long to come up with questions to ask? c. Did you find yourself inhibiting an egocentric comment? Exercise on perspective taking: i. Describe your first day back at work through the eyes of: a. You b. A family member c. Your former or new boss Exercise on perspective taking: i. Your spouse/close friend wants to donate $300 to a charity you do not approve of. a. What factors do you need to consider before you respond? (continued)

FIGURE 4.1.  (continued)

118

Clinical Approaches and Techniques

j.

Exercise on perspective taking: i. You asked your spouse/parent to pick you up at the bus stop, but you missed the bus to talk to a friend who needed your help with a personal problem. You took a bus 1 hour later instead. Your family member was upset, and you think he/she is overreacting. a. What may be the reasons he/she is so upset? Is the reaction justified? k. Exercise: Review your initial responses on the Communication Pragmatics Questionnaire (Form 4.1) and the “Communication Pragmatics Strengths and Difficulties” section there, and share your progress in the goals with the group. 5. Nonverbal Communication a. Definition: i. Behavior and elements of speech aside from the words that send a message ii. Components: a. Ways of talking (e.g., pauses) b. Posture (e.g., slouching) c. Appearance (e.g., untidiness) d. Head movements (e.g., nodding) e. Hand movements (e.g., waving) f. Eye movements (e.g., winking) g. Facial expression (e.g., frown) h. Body contact (e.g., shaking hands) i. Closeness (e.g., invading someone’s space) j. Sounds (e.g., laughing) b. Exercise: Watch the video clip at www.youtube.com/watch?v=12ngQixZ4II i. Consider this situation from the viewpoints of: a. Aaron b. Elaine c. Jerry’s parents d. Kramer c. Exercise: Examine various pictures and discuss components of nonverbal communication. d. Exercise: Discuss relevant nonverbal communication behaviors that are strengths or difficulties for you and share with the group. e. Exercise: Role-play appropriate nonverbal communication behaviors using Medical Memory (www.themedicalmemory.com). f. Exercise: Role-play sitting with a coworker at lunch talking about your favorite restaurant: i. One person (speaker) takes a card and silently reads the nonverbal emotion listed (do not say it aloud). ii. The second person (listener) asks, “What are some of your favorite restaurants?” iii. The speaker uses nonverbal communication signals to express the emotion. iv. Try to get your partner to guess correctly.

FIGURE 4.1.  (continued)



Techniques for Communication Pragmatics Skills and Emotions 119 Components • Specific linguistic aspects: | Syntax | Phonology | Semantics • Expressive and receptive language skills: | Auditory processing | Verbal reasoning | Abstract language | Word retrieval • Theory of mind: Capacity to acknowledge the thoughts, opinions, and feelings of others • Social cognition: | Recognition of self and others’ emotions | Empathy | Self-regulation of behavior | Inferencing • Cognition: | Information processing | Working memory | Memory | Intelligence | Attention | Executive functions: Inferential reasoning • Mood: | Anxiety | Depression | Irritability • Other psychological characteristics: | Coping styles | Temperament | Self-esteem | Affect regulation | Self-efficacy • Social, relationship, and environmental contexts: | Nature of conversational partners (e.g., familiar vs. unfamiliar) | Home, community, school, work, and cultural settings Assessment Procedures • Informal and systematic observation: Checklists and indices • Analysis of transcribed discourse samples • Elicitation tasks: Semistructured activities • Rating scales • Self and close-other questionnaires • Structured tests Techniques • Awareness training • Goal establishment • Structured exercises, workbooks, and manuals (continued)

FIGURE 4.2.  Overview of communication pragmatics.

120

Clinical Approaches and Techniques

• Extensive rehearsal • Group discussions • Video recording and feedback • Role-play and perspective-taking opportunities • Vignettes, games, and YouTube videos • The “echo technique” • Scripts • Behavior logs • Supplemental self-and-other esteem-building exercises • Parent and caregiver participation • Generalization and applications to the real world: | Context and situational training | Homework | Everyday partner coaching | Field trips Treatment Steps 1.  Identify the target communication skills and contexts, starting with the easiest and least threatening. 2.  Demonstrate and model the behavior for the patient and support network using “errorless learning.” 3.  Keep instructions clear and concise. 4.  Devise a mechanism to record data. 5.  Provide sufficient repetition. 6.  Deliver positive commentary when improvements are observed. 7.  Increase incrementally the complexity of the scenarios. 8.  Create a plan for ongoing monitoring of outcomes. Practice Standards • Individualized objectives prioritized by the patients that also heighten awareness and treatment motivation • Instructional methods that match learning abilities • Activities that incorporate compensation training and a generalization phase • Inclusion of main communication partners • Measurement of functional outcomes Benefits • Listening skills: | Competitive versus combative styles | Attentive, active, nonverbal, and verbal | Paraphrasing | Clarification | Summarizing • Starting, maintaining, repairing, and ending conversations • Turn taking • Verbal organization • Communication styles • Body language

FIGURE 4.2.  (continued)



Techniques for Communication Pragmatics Skills and Emotions 121

Communication pragmatics interventions can best be delineated by conducting a needs assessment: identify (1) what the specific deficiency/need/goal is, (2) where the target environment is, (3) when the strategy will be incorporated, and (4) how implementation will occur (Sohlberg & Mateer, 2001; Sohlberg & Turkstra, 2011). Individual modalities include videotaping, feedback, and self-­monitoring (see Struchen, 2014, for a review). These start in the clinic and can eventually occur in naturalistic locales also using preplanned scenarios (e.g., discussing weekend events) (Keohane & Prince, 2017; Klonoff, 2010). Specific subcomponents can be pinpointed, for instance, emotion perception (e.g., reading a smile), recognizing varying mental states, and metacognitive coaching (e.g., recognizing cognitive and problem-­solving biases) (McDonald & Cassel, 2017). Evidence-­based investigations, systematic reviews, and clinical interventions have identified worthwhile lecture and psychoeducational formats, as well as interactive groups that serve to increase communication pragmatics, social communication and competency, quality of life, and societal participation, even for chronic brain injuries (Bosco et al., 2018; Douglas & Togher, 2017; Eberle, Dams-O’Connor, Fraas, & Togher, 2022; Finch, Copley, Cornwell, & Kelly, 2016; Harrison-­Felix et al., 2018; Keohane & Prince, 2017; Klonoff, 2010; McDonald & Cassel, 2017; Parola et al., 2019; Sohlberg & Mateer, 2001; Togher et al., 2023; Togher, McDonald, Tate, Rietdijk, & Power, 2016; Westerhof-­Evers et al., 2017; Wiseman-­ Hakes et al., 1998; see Struchen, 2014, for a review). See Figure 4.2 for a list of techniques. The implementation steps for treating communication pragmatics have been identified (Klonoff, 2010; Sohlberg & Mateer, 2001) and are contained in Figure 4.2. Practice standards and benefits of social communication interventions have been established (see Figure 4.2 for details) (Eberle, Dams-O’Connor, et al., 2022; Keohane & Prince, 2017; Sohlberg & Mateer, 2001; see Douglas & Togher, 2017, for a review). Also see Chapters 7 and 8 for more information on procedures to aid relatives, employers, school personnel, friends, and intimate partners to create and maintain a positive communication culture and reinforce appropriate communication pragmatics.

Assessing and Treating Communication Pragmatics Challenges at the CTN Using Logs General Overview and Goals Communication pragmatics logs (discussed here and illustrated in Figures 4.3, 4.4, and 4.5 on pp. 124–126) are a super device for regular, concrete, and quantifiable feedback about survivors of ABI’s communication pragmatics skills as they designate expectations for behavior ahead of time and cultivate socially reinforcing interactions. At CTN, we often refer to these as professionalism logs or professional behavior logs to foreshadow the “real world,” especially work. Communication pragmatics logs consist of goals as well as positive and problematic behaviors that are regularly examined during speech therapy and psychotherapy sessions. We have found these logs to be a first-rate mechanism to foster awareness, acceptance, and realism regarding patients’ communication strengths and challenges, especially because they receive immediate, “real-time” written comments.

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Clinical Approaches and Techniques

Name:  John Doe 9:00 A.M.–

9:45 A.M.

Date:  7/19/21    Break 10:00 9:45 A.M.– A.M.– 10:45 10:00 A.M.

10:45 A.M.– 11:30

11:30 A.M.– 12:15

A.M.

P.M.

A.M.

Milieu Lunch 12:15 12:30 P.M.– P.M.– 12:30 1:15 P.M.

1:15

2:00

2:45

P.M.–

P.M.–

P.M.–

2:00

2:45

3:30

P.M.

P.M.

P.M.

P.M.

Did I start by using my set-up checklist?

; Y † N

; Y † N

; Y † N

† Y ; N

; Y † N

; Y † N

† Y ; N

; Y † N

; Y † N

; Y † N

Did I speak with a good pace and loudness?

; Y † N

; Y † N

; Y † N

; Y † N

† Y ; N

† Y ; N

; Y † N

; Y † N

; Y † N

; Y † N

Did I use good ; Y manners (e.g., † N saying please and thank you)?

† Y ; N

; Y † N

† Y ; N

; Y † N

† Y ; N

† Y ; N

; Y † N

; Y † N

† Y ; N

Was I to the point?

† Y ; N

† Y ; N

; Y † N

† Y ; N

; Y † N

† Y ; N

† Y ; N

; Y † N

; Y † N

; Y † N

Did I take turns talking?

† Y ; N

† Y ; N

; Y † N

; Y † N

; Y † N

† Y ; N

† Y ; N

† Y ; N

; Y † N

; Y † N

Was I calm when I became frustrated?

† Y ; Y † Y † Y † Y † Y † Y † Y † Y ; Y † N † N † N ; N † N † N † N † N † N † N ; N/A † N/A ; N/A † N/A ; N/A ; N/A ; N/A ; N/A ; N/A † N/A

Was I a good listener?

† Y ; N

; Y † N

; Y † N

† Y ; N

; Y † N

† Y ; N

† Y ; N

; Y † N

; Y † N

† Y ; N

AB

CD

EF

GH

JI

KL

MN

OP

QR

ST

Therapist Initials Comments:  Therapist:

9:00 – Good use of set-up checklist, but interrupted several times. 10:45 – Used clear speech strategies, but got upset and did not raise your hand when commenting. 12:30 – Monopolized the conversation and cut in front of someone at the microwave. 2:00 – Great job! Used your checklist and good turn-taking during discussion.

 Patient:

9:00 – I know I need to be a better listener, but I was excited to share about my weekend. 10:45 – I felt like I wasn’t being understood, but I apologized at the end. 12:30 – I skipped breakfast and was hungry, but I need to be a good milieu member. I wanted to share a story about my weekend, but I know I talked too much. 2:00 – I had a good session and worked hard to use my strategies. (continued)

FIGURE 4.3.  Communication Pragmatics Log #1.



Techniques for Communication Pragmatics Skills and Emotions 123 This sample graph depicts percentages of positive and constructive feedback on a weekly basis. 100  90  80

Percentage

 70  60  50  40  30  20  10 Mon.

Tue.

Wed. Week 1

Thu.

Fri.

Week Mon. 1 Avg.

Tue.

Wed. Week 2

Thu.

Fri.

Week 2 Avg.

Take-aways:  I’m using my set-up checklist better, but I need to make sure I raise my hand and wait my turn in groups. Positive feedback: Corrective feedback:

FIGURE 4.3.  (continued)

Logs are crafted in collaboration with the survivor and suggestions from interdisciplinary team members based on observations during structured one-on-one and group therapy sessions. While the logs can be a useful tool for a sole practitioner, clinical detections during group therapies and unstructured periods (e.g., breaks, lunch hour) are especially valuable, as they are a better representation of behavior in more natural circumstances. Families should also be educated and recruited in the dialogue about the intent, content, and objectives of these logs to avoid misunderstandings and misinterpretations. Then the support network can reinforce the validity and value of this compensation to their loved one, allay potential fears and disgruntlement, and then bolster proper comportment in the home and community.

Structure and Process Communication pragmatics logs should be fabricated following the evaluation period and once the team has a sound grasp of the patient’s communication pragmatics strengths and challenges; this can span 1–3 weeks. Good candidates are motivated to enhance their skill

124

Clinical Approaches and Techniques

Goal: Demonstrate socially appropriate behaviors. Reminders: I need to have good communication skills in order to be a good communication partner.

 DO

 AVOID

Be a good listener: 1. Listen more, talk less. 2. Be OK with being quieter.

1. Talking too much 2. Asking too many questions 3. Dominating the conversation

Be attentive: 1. Sit up and make good eye contact. 2. Focus on the speaker and task.

1. Saying, “I’m bored” 2. Talking when someone else is talking 3. Repeatedly checking my watch/phone

Be respectful: 1. Be kind. 2. Call others by their proper name.

1. Being insulting 2. Using nicknames 3. Using hand gestures 4. Talking about others’ appearance or culture 5. Joking around too much

Accept feedback: 1. “Thanks for the feedback.”

1. Making excuses (“Yeah, buts”) 2. Talking negatively about my therapies or the therapists

Maintain good boundaries: 1. Greet others with: “Hello, how are you doing?” “It’s nice to see you” 2. Say, “It’s good to talk to you.” 3. Stay professional during all interactions.

1. Flirting 2. Asking personal questions 3. Asking too many questions 4. Sharing too much personal information

Inhibit (use my filter): 1. Think before speaking and acting. 2. Listen more. 3. Ask myself, “Is this appropriate?” 4. Ask myself, “Do I know the answer to this question already?”

1. Repeating myself 2. Swearing 3. Talking a lot

Discuss appropriate topics: 1. Choose topics such as movies, weather, food, animals, travel.

1. Talking about my accident 2. Topics such as alcohol, girls, sex, religion, politics

Stay positive: 1. Focus on my progress. 2. Focus on therapy as a way to help me reach my goals.

1. Fixating on when I will be done with therapy

(continued)

FIGURE 4.4.  Communication Pragmatics Log #2.



Techniques for Communication Pragmatics Skills and Emotions 125 Name:   Date:     Session/time

What went well

What needs to improve

Initials

8:15–9:00 A.M. 9:00–9:45 A.M. 10:00–10:45 A.M. 10:45–11:30 A.M. 11:30–12:15 P.M. Milieu 12:15 P.M. Lunch 12:30 P.M. 1:15–2:00 P.M. 2:00–2:45 P.M. 2:45–3:30 P.M. 3:30–4:15 P.M.

FIGURE 4.4.  (continued)

set so as to successfully reintegrate into the community. However, they are frequently fairly to very unaware of their shortcomings and show poor carryover from therapy sessions into other treatment and environmental locations. Considerations should include the person’s emotional readiness to receive regular constructive feedback. This should be discussed as part of psychotherapy sessions, given the sensitive nature of the content and his or her emotional fragility and vulnerabilities. For some, it may be beneficial to gradually receive outside observations, perhaps in one or two sessions with therapists who are familiar with them (e.g., speech and psychotherapy sessions), and later proceed to collecting input during other one-on-one sessions, groups, and breaks. As tolerated, contributions from lots of sources and in varying situations are indispensable for the survivor’s growing awareness, generalization, and self-­monitoring.

Protocol Once the team decides that a patient would benefit from a log, the process begins during speech therapy and psychotherapy. Given support, he or she identifies salient behaviors. These may be addressed incrementally and prioritized based on complexity or importance. Patients should take a large role in the creation of their logs and help identify goals. Add samples of target behaviors to do and avoid for each skill. Examples under the avoid column should include specific quotes or behaviors. Use language and ideas that are easy to understand and are personally tailored. Typical domains are: • Focused attention and active listening • Conversational skills including topic maintenance, turn taking, speaking volume and rate, and hyperverbality

Main Goal: Consistently demonstrate appropriate social and professional behaviors. Goals

Avoid

• Appropriate nonverbal communication: | Proper eye contact | Smiling | Nodding when in agreement | Appear to be listening | Pulled up to the desk

• Not making eye contact during conversations • “Flat” or overly serious expression • Staring at others • Distracting hand movements

• Take turns in conversations equally. • Be a good communication partner.

• Egocentric topics • “Interrogating” others • Using a “bossy” tone

• Be open and receptive to feedback and new ideas. • Follow recommended protocols/no rule breaking.

• Inflexibility • Too much negotiating

• Participate in social conversations in a mature, businesslike manner.

• Being part of inappropriate conversations or jokes • Hurtful teasing • Juvenile comments • Overuse or inappropriate use of sarcasm

• Stay on topic. • Know what and when to share information. • Know your audience.

• Getting off topic or switching topics suddenly • Sharing information that is not appropriate for the setting • Oversharing information

• Calmly explain frustrations or disagreements using professional wording or techniques.

• Blaming or fault finding • Slamming objects or crumpling paper • Profanity or self-deprecating comments

Name:  Rachel   Date:  8/20/21     Session/Time

What Went Well

What Needs to Improve

8:15–9:00 A.M.

Better listening skills

Keep responses more concise.

9:00–9:45 A.M.

Good balance of speaking and listening N/A

10:00–10:45 A.M.

Attentive to the topic

Focus on giving others more of a chance to contribute.

10:45–11:30 A.M.

Good use of an apology

Avoid use of profanity.

11:30 A.M –12:15 P.M.

Better eye contact and more smiling

N/A

Milieu 12:15–12:30 P.M. Less “bossiness” when leading

Make sure to include everyone.

Lunch 12:30–1:15 P.M.

More mature exchanges with other patients

Watch flirtatious and staring behaviors.

1:15–2:00 P.M.

Receptive to feedback

Monitor egocentric comments.

2:00–2:45 P.M.

Calmer when expressing frustration about a homework assignment

Keep an eye on blaming the therapist or the task; take personal ownership.

2:45–3:30 P.M.

Better flexibility

Remember to practice putting yourself in the other person’s shoes.

FIGURE 4.5.  Rachel’s Communication Pragmatics Log #3. 126

Initials



Techniques for Communication Pragmatics Skills and Emotions 127

• Nonverbal communication including facial expressions and body language • Professionalism including avoiding profanity and taboo subjects • Flexibility and openness to explanations and avoidance of excuse making The treating team should identify the best log format. Besides psychological factors (e.g., mood; the degree of awareness, acceptance, and realism; and receptivity to suggestions), choices take into account the severity of cognitive and language impairments. The yes/no or brief phrase formats are used for greater limitations across realms (see Log #1 in Figure 4.3 for an example [a colorized version appears at the book’s companion website]). This rating procedure is also quicker and often more comfortable for other disciplines (e.g., physical, occupational, and recreational therapists). Log #2 (see Figure 4.4) offers a sample description of confined goals as well as behaviors to avoid with an accompanying “what went well” and “what needs to improve” form for therapists’ (and when suitable, patients’) comments. As this log uses minimally complex language and straightforward examples, it is ideal for those who can interpret basic narrative material. Log #3 (see the version for Rachel in Figure 4.5) with the same open-ended write-up form is applicable for higher-­functioning survivors. It provides more in-depth objectives, additional rationales, and multiple examples of avoid behaviors for occurrences like encountering people for the first time and/or business gatherings. All treating therapists should be notified via email and during team meetings to expect and support the patient’s request for log feedback each session. To accommodate “errorless learning” (Wilson, 2009), he or she will likely require therapeutic assistance implementing compensations to ensure consistent collection of input using phone alarms or notations in paper or electronic datebooks. Using these strategies should enable him or her to independently solicit written remarks. Those with more severe ABIs can benefit from a “set-up checklist” to structure the session and complete responsibilities (see Figure 4.6 for a sample). For some, it may be beneficial to script a way to politely request clarifications (e.g., “I’m trying to behave more professionally. Would you please review my goals and provide suggestions at the end of this session?”) and to offer gratitude versus excuses or complaints when receiving pointers (e.g., “Thank you for your advice”). These scripts can either be read or memorized. Speech therapists should assist survivors in deciding on a suitable place to keep their logs. As a visual cue, the log should be kept out on a working surface. Depending on their objectives, the speech therapists might also assist patients in establishing recurring memory assignments to turn in their logs at the end of every day or week to them. Requesting or printing new logs for the upcoming week can be a good task for patients working on prospective memory and planning. Although often speech therapists and psychotherapists take the lead, all disciplines are encouraged to be forthright yet empathic with their opinions, highlighting both positive and counterproductive performance. To promote self-­monitoring and awareness, ask patients about their perceptions of interaction(s) and then identify corrective actions. Providing specific examples while completing the log enables “teaching moments.” As they evolve in their self-­insight and acceptance, patients should be able to participate more actively, also providing their own ideas and solutions. Supplemental speech therapy or psychotherapy activities might include structured exercises (e.g., perspective taking), modeling, and situational role play; video recording and review; and scripting prompts or responses for routine conditions.

128

Clinical Approaches and Techniques Date:

Date:

Date:

Date:

Date:

  1. Take out a pencil.   2. Put my left arm on the table to reduce tone and increase functionality.   3. Turn to the appropriate section in my orange binder.   4. Check my datebook for memory assignments.   5. Take out and review my Communication Pragmatics Log and speech strategies.   6. Set an alarm for 5 minutes before the end of the session.   7. Remind my therapist to fill out my Communication Pragmatics Log at the end of the session.   8. Let my therapist know I am ready to work.   9. When the alarm goes off, have my therapist complete the Communication Pragmatics Log. 10. Pack up my belongings to end the session on time.

FIGURE 4.6.  Set-up checklist.

Survivors who receive a log write-up for dominating a conversation during lunch can use a follow-­up speech therapy session to role-play topic initiation and turn taking during casual chats. Similarly, someone receiving comments on his or her log for using offensive language when aggravated might identify and script alternative ways to express his or her feelings or to inhibit outbursts as part of psychotherapy. Depending on the specific goal, speech therapists may elect to compute the percentage of corrective feedback, progress, and residua on a weekly basis. Patients can also assist in the calculation of their weekly input; these quantified data are often motivational and spur ownership and further partnering to build awareness, acceptance, and realism regarding healthy communication pragmatics patterns. These computations are also regularly shared with the interdisciplinary team and support network to enable generalization of core conduct to new clinic and community locations (see Chapters 7 and 8 for more details). Visual depictions like graphs can be a useful way to underscore improvements and are also a beneficial teaching tool for caregivers (see bottom portion of Figure 4.3 for an example). As patients advance, and with outside suggestions, including the support network, the speech therapist modifies goals and potentially incorporates new skills, removes behaviors where objectives have been met, and adds additional environments or communication partners. Once participants have demonstrated consistent self-­monitoring over a number of weeks and settings (e.g., therapeutic groups, lunch breaks, during community reintegration



Techniques for Communication Pragmatics Skills and Emotions 129

outings), they may “graduate” to receiving constructive and/or concerning feedback on an as-­needed basis. This technique of fading cues empowers them to self-­monitor, yet provides sufficient pointers and structure to facilitate the assimilation process. Patients continue to benefit from visual reminders or summary “nugget notes” of their communication pragmatics strengths, challenges, compensations, and objectives, with an emphasis on the applicability to their broader community aspirations and ongoing education for their relatives.

The CTN Communication Pragmatics Group General Overview and Goals The aims of communication pragmatics group are to build awareness of appropriate and inappropriate communication behaviors; learn to self-­monitor communication behaviors; and discover how to modify communication behaviors within different social environments (for a more detailed discussion, see Klonoff, 2010). This group is an excellent complement to communication pragmatics objectives addressed in speech therapy in conjunction with their communication pragmatics logs (see Figures 4.3, 4.4, and 4.5). Given that communication pragmatics problems greatly impact social relationships, the group experience normalizes and enables a more natural forum to work on limitations and acknowledge strengths.

Structure and Process The format of the CTN communication pragmatics group accommodates up to 8–14 participants and can meet two to three times per week for 45 minutes spanning 4–5 weeks. Preferably, the group is facilitated by speech therapists and neuropsychologists/rehabilitation psychologists (Klonoff, 2010). Generally, there is a 3:1 patient-­to-­therapist ratio, but this should be adjusted if necessary. As with all groups, didactics are provided, including “dos and don’ts” and compensations. This group prioritizes experiential exercises such as peer interactions through round-robin discussions, role play and therapist modeling, homework including collateral feedback, and analysis of video recordings (Klonoff, 2010). Of course, the group format is modified based on the participants’ mix and clinical needs.

Protocol Pinpointed behaviors in this group are listed in Figure 4.1 (see #2. Common Communication Pragmatics Difficulties after Brain Injury) (Klonoff, 2010). The group content is divided into (1) the definition of communication pragmatics, (2) common communication pragmatics difficulties after brain injury and their day-to-day repercussions, (3) addressing egocentrism and perspective taking, (4) functional implications and compensatory methods for egocentrism, and (5) nonverbal communication. Figure 4.1 contains the group content with intermingled practical exercises (see Form 4.1 for a sample Communication Pragmatics Questionnaire and Communication Pragmatics Strengths and Difficulties worksheet [Klonoff, 2010] and Figure 4.7 for Rachel’s completed versions); some or all of this can be converted to PowerPoint slides.

130

Clinical Approaches and Techniques

Date:  8/16/21 Please indicate to what extent you have observed these behaviors in yourself since your brain injury. Circle 0 if you have no problem; 1 if it is mild; 5 if it is severe. 0 1 2 3 4 5

  1.  I have difficulty starting a conversation.

0 1 2 3 4 5

  2.  I have difficulty keeping a conversation going.

0 1 2 3 4 5

  3.  I tend to be more talkative.

0 1 2 3 4 5

  4.  I tend to be less talkative.

0 1 2 3 4 5

  5.  I talk about inappropriate subjects.

0 1 2 3 4 5

  6.  I act inappropriately in social situations.

0 1 2 3 4 5

  7.  I speak more bluntly.

0 1 2 3 4 5

  8.  I get off topic when I talk.

0 1 2 3 4 5

  9.  I tend to interrupt or dominate conversations.

0 1 2 3 4 5

10.  I speak with too much detail or in a round-about manner.

0  1 2 3 4 5

11.  I show less range of feeling; I’m less animated.

0 1 2 3 4 5

12.  I tend to focus on myself; I’m less involved in listening. Communication Pragmatics Strengths and Difficulties

Date created: 8/16/21 My personal communication pragmatics strengths include: 1. I try to be kind. 2. I’m interested in a wide variety of things. 3. I’m motivated to make social connections. My personal communication pragmatics difficulties include: 1. I talk too much. 2. I need to be a better listener. 3. I need to see things from others’ standpoints. My personal goals are: 1. Have balanced conversations—avoid hyperverbality and impulsivity. 2. Be mindful of nonverbal signals: eye contact, facial expressions, tone of voice. 3. Strengthen active listening. My compensatory strategies to reach my goals are: Difficulty Compensation 1. Eye contact Practice looking at others’ faces to show them I’m listening. 2. Hyperverbality

Self-monitor; take pauses.

3. Perspective taking

Ask myself, “I wonder what (person’s name) thinks or feels?”

4. Quirky, immature humor

Pick up on nonverbal cues; focus on age-appropriate jokes. (continued)

FIGURE 4.7.  Rachel’s Communication Pragmatics Questionnaire and Communication Pragmatics Strengths and Difficulties worksheet. From Klonoff (2010). Copyright © The Guilford Press. Reprinted by permission.



Techniques for Communication Pragmatics Skills and Emotions 131 Progress toward my goals: Date

Progress

9/13/21

My parents and therapists say I’m talking less and listening more in group settings.

10/4/21

I can tell at lunch my peers are more comfortable around me and the therapists have seen improvements, too.

1/10/22

I’m handling my snarky behavior much better and am more easy-going in therapy and at work.

FIGURE 4.7.  (continued)

Individual Psychotherapy during Post‑Acute Neurorehabilitation As depicted in Chapter 1, one-on-one psychotherapy is a mainstay in post-acute neurorehabilitation to assist survivors in navigating their postinjury emotional turmoil. Common emotional sequelae addressed are mood disorders, depression, mania, anxiety, frustration, irritability, fear, feeling overwhelmed, guilt, embarrassment, catastrophic reactions (CRs), emotional and behavioral dyscontrol, apathy, and suicidality (Klonoff, 2010, 2014; Wortzel & Brenner, 2022). Given the impact on self-­esteem, developmental milestones, and socialization, coping and adjustment strategies are prioritized (see Klonoff, 2010, 2014, for extensive information; see also Ponsford, 2022; Wortzel & Brenner, 2022). Viable interventions include psychodynamic constructs, neuropsychoanalysis, self psychology, behavioral modification, behavior therapy, supportive therapy, cognitive-­behavioral therapy, dialectical behavior therapy, rational emotive behavior therapy, psychodrama, interpersonal psychotherapy, CRATER (catastrophic reaction, regularization, alliance, triangulate, externalize, resilience) therapy, psychoeducation and skills training, family systems and schema, psychopharmacology, grief and bereavement therapy, existential psychology, compassion-­ focused therapy, acceptance and commitment therapy and mindfulness, relaxation techniques, narrative therapy, positive psychology, and integrative psychotherapy (­Ackerman, 2017; ­Ashworth, 2017; Ashworth & Murray, 2019; Bédard et al., 2014; Block & West, 2013; Chopra et al., 2017; D’Cruz, Douglas, & Serry, 2019; Glintborg, 2019; Gómez-deRegil, Estrella-­Castillo, & Vega-­Cauich, 2019; Hadidi, Huna Wagner, & Lindquist, 2017; ­Karagiorgou, Evans, & Cullen, 2018; Kathirasan & Rai, 2023; Klonoff, 2010, 2014; Klonoff & Piper, 2020; Lai, Lim, Low, & Tang, 2018; Ownsworth, 2017; Ponsford, 2022; Rabinowitz & Arnett, 2018; Ruff & Chester, 2014; Salas, 2021; Salas, Turnbull, & Solms, 2022; Schmidt, Piliavska, Maier-Ring, Klassen van Husen, & Dettmers, 2017; Whiting, Deane, McLeod, Ciarrochi, & Simpson, 2020; Wiart, Luauté, Stefan, Plantier, & Hamonet, 2016; Yeates & Ashworth, 2020). More recently, some authors have championed motivational interviewing as an effective psychotherapy modality, as it engenders a spirit of collaboration, evocation of internal resources, inner drive, autonomy, self-­empowerment, self-­efficacy, and goal-­oriented actions, while identifying the discrepancy between present behavior and valued intentions;

132

Clinical Approaches and Techniques

and “rolling with resistance” (Hadidi et al., 2017; Medley & Powell, 2010; Ownsworth, 2017; Ponsford, 2022). This promotes changes in patients with ABI through phases of precontemplation, contemplation, determination, action, and maintenance; as well as reductions in anxiety and depression and gains in psychosocial functioning (Medley & Powell, 2010; Ponsford et al., 2016). Also, recent research has identified efficacious historical and novel interventions, for instance, drawing tasks to explore illness perceptions, music therapy, body-­oriented psychotherapy, assertiveness training, ecosystem-­focused therapy, life review therapy, and problem-­solving therapy (Chopra et al., 2017; Jones et al., 2016; Schmidt et al., 2017). Autobiographies give firsthand, inspiring depictions (e.g., After Brain Injury: Survivor Stories Series, Routledge 2013–2021; Lassaletta & Clarke, 2020). Manualized exercises and worksheets have also been published and represent a user-­friendly rubric to galvanize introspection and dialogue (Powell, 2017). Hence, clinicians can select and amalgamate diverse schools of thought and accessory resources (e.g., books, articles, multimedia, etc.), taking into account distinctive cognitive, emotional, social aftereffects, and the phenomenological experience after ABI (Block & West, 2013; Klonoff, 2010; Schmidt et al., 2017). Recently, telehealth is being incorporated to expand service availability (Block & West, 2013). Regardless of the theoretical orientation, overriding principles are (1) promoting hopeful expectations and the belief that therapy can be efficacious; (2) fostering a positive working alliance (see Chapter 1 for more details); (3) facilitating awareness of thoughts, emotions, behavior, needs, wants, difficulties, and the mutual impact between self and others; (4) encouraging patients to engage in corrective experiences; and (5) emphasizing ongoing reality testing of life decisions that is conducive to adaptive functioning (Elbaum, 2019b; Goldfried, 2019; Klonoff, 2010). Nevertheless, effective psychotherapy after brain injury must anticipate and tackle obstacles, such as the nature and extent of cognitive deficits, including memory and executive functions, that restrict concept integration and retention, constrictions imposed by third-party insurance companies, and the shortage of trained providers (Block & West, 2013; Klonoff, 2010, 2014; Klonoff & Piper, 2020).

Individual Psychotherapy at the CTN General Overview and Goals Chapter 1 offers the definition of psychotherapy, which is predicated on the synergetic working relationship so as to cultivate awareness, acceptance, and realism, thereby restoring a cohesive sense of self, well-being, productivity, meaning, hope, and quality of life rooted in family and social relationships, and society. Theoretical constructs and clinical approaches for individual psychotherapy at the CTN have been explained elsewhere (for a more detailed discussion, see Klonoff, 1997, 2010, 2014, 2022; Klonoff & Piper, 2020). The emphasis remains on incorporating varied and personalized integrative psychotherapy to “reach out to” and then “reach” the survivor vis-à-vis his or her unique state of affairs, phenomenological experiences, emotional aftermath, and future aspirations. In the context of a “relationship-­driven” model, psychotherapy continues to integrate three processes: (1) understanding, based on the therapists’ attunement, acumen, and insight;



Techniques for Communication Pragmatics Skills and Emotions 133

(2) interpretation and education; and (3) implementation of change and adjustment (Klonoff, 2010).

Structure and Process All CTN patients participate in psychotherapy along with other holistic treatment. As we have several neuropsychologists and rehabilitation psychologists, they have a voice in case assignments. We discuss the potential “fit” between the clinician’s training, experiences, and preferences, and the constellations of each person’s brain injury sequelae, background histories, personality traits, cultural factors, gender identities, premorbid intellectual functioning and interests, temperaments, socioeconomic circumstances, and emotional and behavioral disturbances, in concert with early perceptions of a readiness and impetus for greater independence and productivity. A “mixed” caseload is instrumental for fashioning an eclectic repertoire of interventions and preservation of professional empathy, vibrancy, and growth (Klonoff, 2015). Of note, substance abuse disorders and posttraumatic stress disorder are considered separate specialties and patients are required to receive outside treatment before/during enrollment in the CTN. Sessions are 45 minutes long, and their frequency ranges from weekly to twice per week during the clinic-­based phase of therapy; typically, there is another weekly conjoint session with caregivers. This is changeable and increases or decreases based on patients’ overall emotional status, adjustment, and challenges in engaging the holistic milieu expectations, protocols, and goals. Once patients expand their community involvements and as they thrive psychologically, appointments are gradually reduced to every 2 weeks, and then even less often, up until program discharge (Klonoff, 2010). Furthermore, the merit of psychotherapy postdischarge is monitored, and referrals can be provided. Survivors are encouraged to bring in agendas of their own in combination with pertinent subjects introduced by the psychotherapist. Besides the psychotherapist’s internal reflections and intuition about topics, other therapy disciplines are a rich medium to generate ideas based on patients’ behaviors and utterances in a host of in-­clinic and community venues. These are conveyed directly to psychotherapists during team meetings, one-on-one conversations, and/or through having the patient notate in his or her datebook questions and concerns. Conjoint sessions and opinions during the family group are other key sources of impressions that are interwoven into psychotherapeutic content (see Chapter 9). Psychotherapy in a holistic milieu center can be conceptualized as the constant and fluid “push pull” between “retrospective stuckage” and “prospective reinvention and reinvigoration.” Practically speaking, the therapist will need honed experience and proficiency to analyze the determinants of stuckage. These are not mutually exclusive, but instead create a unique mosaic of relative contributions that must be identified and weighed (see Figure 4.8 for sample patient verbalizations about stuckage). Eclectic one-on-one (also carried over to group) psychotherapeutic methods to “unstick stuckage” are summarized in Figure 4.8 based on therapist factors and approaches for patients (Gleser & Brown, 1988; Klonoff, 2010, 2022; Lucado, 2013; Morris, 2004; Newman, 2002; Ownsworth, 2017; ­Perumparaichallai & Klonoff, 2015; Ponsford, 2022; Prigatano & Sherer, 2020; Wortzel & Brenner, 2022; Wright, 1983; see Hemp, 2004, for a review).

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Sample Patient Verbalizations of Stuckage • There is really nothing wrong with me; others don’t know me like I know myself. • I look in the mirror and I see a stranger. • I’m on an emotional roller coaster and I can’t get a grip. • My life is unbearable. • My dreams are shattered. • I’ve lost me. • Everything I worked for has evaporated. • The blahness and bleakness are immobilizing. • I can’t and won’t do this. • This too shall pass; now would be good. • I’m the victim of ableism and I hate it. Psychotherapeutic Techniques to Unstick Stuckage Therapist factors: • Nonjudgmental exploration with a “person-first” focus • Validation and normalization of the patient’s angst • Adopt wariness about overpathologizing the brain injury. • “Pick battles” and take a “consultant/advisor” role; avoid power struggles and ultimatums. • Keep a mutually “stay the course” commitment counterbalanced with healthy compromise. • Know when to employ “psychological judo” (taking a step back) and allowing “planned failures” as a life learning experience. • Monitor harmful countertransference reactions and burnout (e.g., remembering that the individual has to want the therapy more than the therapist) and “presenteeism” (the clinician’s sacrificed productivity emanating from unattended to physical or mental health problems). • Maintain empathic responsiveness using the “default orientation” that the person is doing the best he/she can in the context of usually complex preinjury life events intermingled with devastating brain injury aftereffects. • Integrate “case conceptualization/coordination” skills with the patient, his/her support network, and other treating therapists so as to proactively create a concrete pathway for recovery and community integration. • Focus on the “process” versus “outcome” and hold onto the concept of “planting the seed” (laying an early foundation for psychological health that takes time to come to fruition). • Maintain vigilance about suicide risk and other forms of self-injurious behavior and enhance protective factors. Approaches for patients: • Incorporation of diversity factors including culture, gender identity, and other defining characteristics • Sophisticated exploration of differential diagnoses (e.g., between organic unawareness, denial, and resistance) and modification of treatment directions accordingly • Grief and loss therapy to explore deep-seated regrets, guilt, psychic pain, and despair • Exploration of antecedents and manifestations of depression, anxiety, mania, low frustration tolerance, and anger • Managing behavioral (e.g., disinhibition, aggression) and emotional dyscontrol • Collateral interventions (e.g., family therapy, substance abuse, posttraumatic stress disorder) to address comorbid and counterproductive influences • Psychotropic medications to reduce symptom intensity and disruptions • Psychoeducation and skills training regarding awareness, acceptance, and realism and in-session practice and reinforcement of new life-preserving compensations (continued)

FIGURE 4.8.  Psychotherapy techniques at CTN.



Techniques for Communication Pragmatics Skills and Emotions 135 • Boundary setting with clear expectations and concomitant consequences for rule-breaking behaviors • Cognitive-behavioral therapy to directly address cognitive distortions and reframe thinking • Psychodynamic therapy to link early and preinjury life experiences and transference relationships that hinder versus bolster coping mechanisms • Self-psychological tenets to grasp catastrophic reactions and narcissistic rage and also forge a harmonious sense of self and wholeness through mirroring, idealizing, and alter-ego transference relationships • Identity-oriented therapy to recognize and accept changed and stable aspects of oneself through achievements in one’s element and pursuit of productive and meaningful undertakings • Narrative therapy to transform the trauma to new possibilities and valorize experiences through storytelling • Compassion-focused therapy to ameliorate shame and self-criticism • Mindfulness therapy to stay present in the moment, practice self-compassion, and improve selfawareness, mood, health, and well-being • Existential psychological methods to face fears associated with uncertainty and reframe suffering as chances for new freedoms, choices, and purposes: | Seeking healthier lifestyles | Mindfully maintaining an optimistic, upbeat attitude, also by prioritizing new possibilities Sample Patient Verbalizations of Prospective Reinvention and Reinvigoration • I’m not going to crumble after all. • I was guarded and you broke down my walls through compassion. • What looked like stumbling blocks are now steppingstones. • Reliving my past steals my joy. • I’ve rediscovered my self-respect. • I’m a more effective dreamer. • Each year I survive is a “brain-iversary.” • “Why me?” → ”Try me.” • My test is my testimony. Psychotherapeutic Methods for Patients’ Prospective Reinvention and Reinvigoration Therapist factors: • Foster a healing holistic milieu atmosphere characterized by nurturance, patient camaraderie, and hope. • Collaboratively visualize a better future. • Create therapeutic activities that incrementally raise the bar and provide windows of opportunity for inner growth and self-efficacy. • Acknowledge the value of dignity of risk (taking healthy chances). • Reframe external expectations as the choice and destiny of the patient. • Always prioritize patients’ best interests and teach internal regulation and self-care. Approaches for patients: • Embrace the idea of a reconstructed identity and a robust sense of self. • Ease grief and loss by building agency, mastery, self-esteem, and ego strength, and through effective use of compensations and graduated quantifiable attainments. • Collaboratively set stepwise subgoals to realize fulfilling yet realistic aspirations using Plan A, Plan B, or Plan C career options. • Transform the entrenched preoccupation with life before the injury/“old self” to “a second chance/wake-up call” and embrace the “new self” and recovery strides. (continued)

FIGURE 4.8.  (continued)

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Clinical Approaches and Techniques

• Transition from internal discomfort and humiliation to feeling “comfortable in his/her own skin” and self-assurance. • Foster coping strategies and unearthing amazing attributes such as resolve, resiliency, courage, grit, and hopefulness. • Utilize collateral input (e.g., family, community supports) to capitalize on strengths and “big, little” triumphs. • Cultivate quality of life in a multiplicity of domains and strive for a value-driven lifestyle. • Use positive psychology constructs, including recognizing prospects for posttraumatic growth and upward spirals to cultivate: | Personal strength and a positive self-view | A sense of belonging | Appreciation of life and gratitude | Close relations with others | Self-agency and self-realization | And a transformation of suffering into meaningful endeavors Practical protocols: • Create a healing atmosphere that integrates trust, structure, and accountability. • Devise and routinely revisit concrete patient-centered goals that foster a multidimensional and fulfilled lifestyle such as community pursuits and vibrant relationships, including family roles and intimacy. • Carefully monitor the timing, pacing, and presentation style of potentially upsetting advice. • During every session, employ note-taking of key ideas, also using the “read back and verify” strategy. • Regularly reexamine prior notes and create summary “nugget notes” to aid comprehension and retention. • Judiciously incorporate user-friendly “rehab lingo” and collateral opinions to illustrate and reinforce constructs. • Integrate a psychoeducational and “directive” approach utilizing person-relevant metaphors, slogans, diagrams, and drawings. • Cognitively reframe angst as a catalyst for transformation and plateaus as a launchpad. • Jointly create and document stepwise incremental successes employing metaphors and symbolism relevant to the patient’s phenomenological experiences. • Assimilate in-clinic and “real-world” collateral data from the advisory board of trustworthy confidants. • Supplement discussions using complementary entities and media (e.g., journaling, mood logs, books, articles, reflections, short films, movies, and YouTube videos) and through other mediums (e.g., group psychotherapy, guest graduate patients and families) to reinforce and validate angst and turbulent psychological journeys. • Integrate and articulate “nugget notes” or “take-home messages” for long-term emotional sustenance after psychotherapy termination.

FIGURE 4.8.  (continued)

Techniques for Communication Pragmatics Skills and Emotions

137

Understandably, stuckage encompasses a “skill” deficit due to organically based unawareness, whereby the survivor cannot appreciate his or her deficits as a direct result of the brain damage (Klonoff, 2010; Lewis & Rosenberg, 1990; Newman, 2002; Prigatano, 1989). Its prevalence and tenacity should not be underestimated, especially when there has been little or no neurorehabilitation. Neurologically based apathy can translate to diminished drive, emotional responsiveness, and goal-oriented behavior (Wortzel & Brenner, 2022). Another consideration is entrenched denial, or the attempt to avoid anxiety in the face of exposure to deficits (Prigatano & Sherer, 2020). Resistance can also underlie stuckage; this is the “will” factor. The volume can be “turned up” on preexisting characterological problems postinjury (Klonoff, 2010). Indicators are poor motivation and integrity, emotional instability, irresponsible and impulsive acts, rule breaking, argumentative and/or aggressive behavior, grandiosity, and disregard of the rights and needs of others (see Klonoff, 2011, for a review). In therapy, resistance manifests as “gratuitous debates” and a conscious and unrelenting opposition to therapeutic guidance (Klonoff, 2010; Newman, 2002). In cases of incessant resistance, straightforward and nonpunitive boundary setting with the psychotherapist at the helm should occur. Expected exertion, behavior, and therapeutic outcomes are presented to the patient and caregivers in a backdrop of the psychotherapist’s empathy and professionalism. A helpful adage is “it is his or her (i.e., the patient’s) job to do his or her job” (F. Lavia, personal communication, September 25, 2019). Probationary status is a beneficial option for course correction (see Chapter 1 and Klonoff, 2010, for more information and a sample letter). Profound emotional tumult is considered the crucial reason for stuckage. During intensive neurorehabilitation, it usually emanates from emotional anguish, typified by deep-seated psychic pain, ever-present sorrow and misery, unremitting guilt, and an ongoing pessimistic and fatalistic view of the future. Stuckage is tied to retrospective preoccupation with “what was” relative to life before the brain injury, as referenced in Phase 0 of the patient experiential model (PEM) of recovery (see Chapter 3, Figure 3.6; see also Klonoff, 2010, Figure 1.2) and the reference points diagram (Figure 4.9; a colorized version appears at the book’s companion website). Depression and anxiety produce an incapacity to appreciate healing

Reference Points High

Grief a

nd L o

ss

Abilities

er y c ov

Hop

e

Re Day After

Low Day Before Phase 0

and

Phase 1 Accident/Injury

FIGURE 4.9. Reference points diagram.

Now

138

Clinical Approaches and Techniques

influences connected to the reference point of the time frame since the injury. Intermittent, exacerbating, and annoying failures from “consistently inconsistent” performance produce a postinjury vicious cycle of survivor disillusionment, deflation, and infuriation and then unintended and misplaced disenchantment or aggravation toward the therapist and support network. There is a preoccupation with global losses and regrets, unresolved grief due to the shattering of his or her assumptive world, demoralization and despair about subjective incompetence, shame and self-­criticism, and sometimes self and other blaming (Glintborg, 2019; Kauffman, 2002; Klonoff, 2010, 2011). This translates to an inability to muster the necessary ego resources to envision a meaningful and purposeful future. Patients may feel trapped in a world of “handicaptivity” (Glintborg, 2019). In worst-case scenarios, patients may become suicidal, especially when they are depressed; feel empty, helpless, and worthless; manifest cognitive rigidity and impulsivity; experience narcissistic rage; and perceive high burdensomeness to others and thwarted belongingness (Bryson, Cramer, & Schmidt, 2017; Klonoff, 2010; Klonoff & Lage, 1995; Wortzel & Brenner, 2022). Exploration of preinjury histories is paramount to better realize the possibility of prior suicidality, substance abuse, characterological factors, as well as compound, complicated, and stuck grief caused by other life losses that are mirroring current symptoms (Boerner & Schulz, 2009; Klonoff, 2010; Klonoff & Lage, 1995; Stroebe, Schut, & van den Bout, 2012). At CTN, we do careful screening and monitoring of suicidal risk along with psychotropic medications to ameliorate cognitions and feelings associated with suffering and despair (Klonoff, 2010, 2014; Klonoff & Lage, 1995; see the psychiatry section later in the chapter). To boot, the “wear and tear” on psychotherapists addressing stuckage should not be underestimated; this work is not for the “faint of heart.” Therapists face disquietude, sorrow, emotional depletion, and other professional hazards related to chronically ministering to survivors’ woes and fears (Klonoff, 2011; Yalom, 2002). Sometimes, the therapist has to find the keen balance between soothing the survivor who may not be ready to face certain facets of his or her predicament and gentle, therapeutic accompaniment toward internalization and the transformation of “I can’t do this” and/or “I have to do this” due to the arduous and harrowing elements of neurorehabilitation to “I need/want to do this.” There is a difference between “caring” and “carrying” the emotional load (https://ct.counseling.org/2019/07/ caring-­vs-­carrying-­a-­therapeutic-­review-­of-­empathy-­and-­boundaries). The therapist experiential model of treatment (TEMT) is a useful tool to catalyze internal exploration, self-­ discovery, and self-­scrutiny in the context of the “hills and valleys” of our labors so as to stave off excessive disillusionment, harmful countertransference reactions, adversarial and fractured working alliances, and burnout or compassion fatigue (see also Chapter 1; Klonoff, 2011; Miller, 1998). As depicted in the TEMT, a “survival kit” is essential, including supervisory and mentoring relationships; mindfulness regarding personal mantras and core values; self-­nurturance; and focusing on the process rather than the outcome of treatment via “planting the seed” (Klonoff, 2010, 2011). A pivotal antidote for stuckage is partnering and (joyfully) witnessing the patient’s remarkable “prospective reinvention and reinvigoration” to become his or her “best me.” Germane topics are how to (1) “potentiate potential” through capitalization of strengths and talents; (2) constructively manage grief and mourning and enhance emotional regulation; (3) revisit and, if necessary, revise values; (4) re-­create a cohesive sense of self, a robust



Techniques for Communication Pragmatics Skills and Emotions 139

self-­concept, and a reconstructed identity and reattain social roles; and (5) develop a positive self-­appraisal, resiliency, and meaning-­making capabilities (Klonoff, 2010; Lai et al., 2018; Ownsworth & Haslam, 2016). Expanding awareness and acceptance culminates in the transformative and transcendent process of realism and adjustment, defined as external adaptation to his or her external environment; intrapsychic assimilation (inner being and identity, self-­esteem, self-­efficacy, mastery, and happiness); and existential assimilation (life philosophy, meaning, quality of life, self-­actualization, and hope) (see Klonoff, 2010, for more details). A sample of survivors’ sentiments as well as psychotherapeutic methods for the prospective reinvention and reinvigoration process are contained in Figure 4.8, based on therapist factors and approaches for patients (Duckworth, 2016; Karagiorgou et al., 2018; Lai et al., 2018; for review, see Klonoff, 2010).

Protocol During the first individual psychotherapy appointment, patients are provided with a purpose sheet to orient them to therapy’s benefits: (1) check in on your mood and how you are coping with life since your brain injury; (2) understand how brain injury affects thinking, feelings, and acting; (3) teach you about your brain injury, feel better regarding the changes, and make healthy decisions for yourself and your future; and (4) help you do as much as you can for yourself in the home, community, and at school and/or work. The importance of psychotherapy is proposed as generating a positive mood and good ways to deal with your feelings and thinking skills because learning about your brain injury will lead to more success in your recovery and your support network’s adjustment. This information is reviewed as needed, especially when there are impeding cognitive impairments and perplexity about treatment benefits. As previously delineated (Klonoff, 2010), given patients’ cognitive deficits and their emotional fragility, close adherence to practical protocols is recommended, as delineated in Figure 4.8. Invaluable, if available, is “embedded supervision” in which a senior clinician pairs with another more junior psychotherapist. During periods of stuckness, this provides often much needed emotional support to the assigned psychotherapist and also a fresh viewpoint. The “good cop” treating psychotherapist can also maintain his or her working alliance, while the “bad cop” supervising clinician can be safely and therapeutically confrontational, once a sturdy working alliance is present. Likewise, new revelations and therapeutic momentum toward the patient’s self-­actualization are fostered through supervision and cotreatment by employing intersubjective and interexperiential phenomena (Ashworth, 2017; Smith-­Pickard, 2004). As the patient approaches termination of psychotherapy, consider creative methods to formalize and eternalize prospective reinvention and reinvigoration revelations. For instance, Figure 4.10 depicts Rachel’s psychosocial migration from being the center of the family’s attention as a youngster with an ABI, to feeling alienated from her family and community prior to her neurorehabilitation due to communication pragmatics and emotional struggles, and ultimately her post-­neurorehabilitation healthy reintegration into her family and society. Other techniques include revisiting the reference points diagram that repositions losses toward reinvention and hope (see Figure 4.9); summarizing main “nuggets,”

140

CLINICAL APPRoACHES ANd TECHNIQuES

Rachel

Childhood

Family

Rachel

Pre - CTN Community Sometimes family

Rachel

Now

Community & family (continued)

FIGURE 4.10. Rachel’s psychosocial migration and Nugget Notes. Artwork by Maura Rhodes. Used with permission.

Techniques for Communication Pragmatics Skills and Emotions

141

1. Psychotherapy is about internalizing principles in my head and my heart, and I’ve done that! 2. Look for commonalities with others. 3. Read the audience. 4. Practice active listening. 5. Use my coping strategies to avoid CRs; ask myself, is this a campfire or bonfire? 6. I have gone from the center of attention to feeling like an outsider to feeling part of society. 7. Use all my compensations until perpetuity—datebook, checklists, family milieu meetings. 8. Substitute curiosity for worry. 9. Follow the Golden Rule (be a mensch) and perform mitzvahs (acts of kindness). 10. I am likable. 11. My new normal is that I am self-reliant. 12. View my glass as half full. 13. Follow the lesson of the Little Engine That Could (Piper, 1986). 14. T.T.T.—be patient with myself and life. 15. This is my first job, not my last. 16. Remember I’m a hero and a survivor.

FIGURE 4.10. (continued)

using personalized mantras, quotes, or other phraseology that reorients and anchors him or her (see Form 4.2 and Rachel’s completed version in Figure 4.10; colorized versions of both appear at the book’s companion website); a dream board that speaks to the patient; a personalized Phase 7 of the PEM (see Chapter 8); and the “four columns” exercise of delineating discharge elements and aspirations related to the survivor’s structure/routine, and sources of socialization/leisure, productivity, and meaning (see Form 4.3 for a sample of this exercise and Figure 4.11 for Rachel’s completed version of it). Sharing these with the support network also ensconces this in the family’s repertoire of coping strategies and enables mutual rejoicing about monumental attainments.

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Clinical Approaches and Techniques

Name:  Rachel  Date:  2/21/21     Structure/Routine

Socialization/Leisure

Productive

Meaningful

• Remember my time

• Hang out with my

• Work 20 hours per

• Be a good daughter,

• Stay involved in brain

• Continue

• Spend time with and

• Keep up with my

• Continue to volunteer

• Continue my

• Participate in Judaism.

management skills to keep an organized schedule.

• Keep up with my home independence checklist and home exercise programs.

• Practice good sleep,

eating, and hydration habits.

• Exercise will help my

body, mood, and spirit.

• Do family milieu

meetings twice a week.

• Balance chill time with my responsibilities.

sister.

injury non-profit organizations (e.g., Ability360).

• Keep up with my new buddies from CTN.

• Participate in the CTN aftercare group.

week.

psychotherapy. hobbies.

community college classes.

sibling, and friend.

help my grandparents. at the synagogue.

• Give to and help others.

• Go to the dog park with my puppy.

• Continue with the

young adult group at my synagogue.

• Be open to new ways to meet people.

FIGURE 4.11.  Rachel’s Four-­Column Exercise.

Group Psychotherapy during Post‑Acute Neurorehabilitation Quantitative and qualitative research and clinical reports have illustrated the multiplicity of benefits of group psychotherapy in improving self-­awareness, acceptance, affect regulation, identity, goal setting, interpersonal relations, negative thinking, adaptive coping strategies, and adjustment (Aboulafia-­Brakha & Ptak, 2016; Ashworth, Clarke, Jones, Jennings, & Longworth, 2015; Klonoff, 2010; Nemeth, Songy, & Olivier, 2015; Rigon et al., 2017; von Mesenkampff et al., 2015). Schools of thought include cognitive-­behavioral therapy, psychoeducation, existential psychotherapy, art and music therapy, and more recently “third-wave therapies” such as mindfulness, acceptance and commitment therapy, and compassion-­ focused therapy (Ashworth et al., 2015; Bay & Chan, 2019; Gardiner & Horwitz, 2015; Kathirasan & Rai, 2023; Klonoff, 2010; Sander et al., 2021; Wiart et al., 2016). In sync with one-on-one psychotherapy, topics include depression, anxiety, anger management, uncertainties about the future, grief and loss, shame, self-­criticism, inadequacy, and loneliness, as well as rebuilding a sense of self, self-­empathy, and self-­esteem so as to alleviate suffering and instill legitimization, connectivity, a revalued self, a positive self-­concept, personal growth, and hope for the future (Aboulafia-­Brakha & Ptak, 2016; Ashworth et al., 2015; Klonoff, 2010; Nemeth et al., 2015; Vickery, Gontkovsky, Wallace, & Caroselli, 2006; von ­Mesenkampff et al., 2015). Secondary cognitive gains from group psychotherapy have also been reported (­Gardiner & Horwitz, 2015; Rigon et al., 2017; Tsaousides et al., 2017). Formats include structured and semistructured/time-­limited group discussions, client-­driven conversations



Techniques for Communication Pragmatics Skills and Emotions 143

and storytelling, peer mentorship, experiential exploration, psychoeducation, skills training, role playing, and multimedia (e.g., films); web-based videoconferences are also evolving (Alawafi, Rosewilliam, & Soundy, 2021; Ashworth et al., 2015; Klonoff, 2010; Nemeth et al., 2015; Rigon et al., 2017; Tsaousides et al., 2017; von Mesenkampff et al., 2015).

Group Psychotherapy at the CTN General Overview and Goals The historical philosophy, objectives, and format of group psychotherapy at the CTN are elucidated elsewhere (Klonoff, 1997, 2010; Klonoff et al., 2000). In short, this group provides psychotherapeutic support, psychoeducation, and most importantly, peer sharing/mentoring to normalize the roller coaster of postinjury vexation, grief, loneliness, social isolation, and identity confusion (Klonoff, 2010). Overarching themes pertain to awareness, acceptance, communication and social skills, realism, adjustment, and preparation for treatment termination and the future. As highlighted previously, the commonality of tribulations; opportunities for learning through imitation, modeling, and mentorship; problem solving; perspective taking; socialization; building confidence through courage; posttraumatic growth; and optimism about the future emerge through a bonding atmosphere of reflective space, candor, tolerance, and empathy (Klonoff, 2010). Proof positive, this group was a peer-­ proclaimed lifeline during the COVID-19 pandemic, affording a crucial outlet to explore deep fears and worries and fortify coping mechanisms. Strong by-­products of the group are the chances to practice important metacognitive, language, and communication pragmatics shortcomings, many of which hamper survivors’ community adjustment (Klonoff, 2010).

Structure and Process Ideally, group psychotherapy operates three to four times per week; however, even having a weekly group can be efficacious. Sometimes, our patients attend once or twice per week, due to their schedule or other therapy needs; our viewpoint is that some exposure is better than none. Our group remains open-entry, open-exit, which optimizes peer exchanges from various vantage points based on the length and stage of participation in our holistic milieu, not to mention eclectic injury etiologies and chronicities, and disparate ages and psychosocial backgrounds. In our experience, 45-minute sessions maximize the likelihood for indepth dialogue. Group composition is 6–12 individuals, facilitated by two neuropsychologists/rehabilitation psychologists. Although smaller groups are possible, depending on the post-acute neurorehabilitation site, clinicians should be wary of groups that are too large, as this will inhibit comfort and practicalities for heartfelt sharing. Length of participation is set according to their needs, treatment priorities, and length of stay in the program; generally, they attend for 3–6 months. Subjects are typically generated by the attendees, with supplementation by the therapists of didactics, discussions, exercises, and multimedia (see Figure 4.12 for more information and sample topics for group psychotherapy). Topics are designed to optimize patients’ post-­injury adjustment, functionality, and emotional well-being. They range from exploration of recovery and neurorehabilitation to

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Clinical Approaches and Techniques

1. Free Discussion of Topics Raised by Group Members a. Awareness: 1. How is being aware going to help me? 2. Feelings about various program therapies (e.g., cognitive retraining, community outings group, vocational group) 3. Why do I need to take notes? 4. Why do we struggle with inconsistent performance? 5. Why do I need medical clearance for so many activities after my brain injury (time alone, driving, school, work)? b. Acceptance: 1. Will I make a 100% recovery? 2. How can I cope with not driving or working like I used to? 3. “Why me” and “What ifs” about my brain injury 4. How do I cope with medical restrictions, stresses, and conflicts? 5. Feelings about mood medications 6. What is the difference between stuckage/resistance and stubbornness/perseverance? 7. How can I cope with my brain injury, including looking backward versus forward? 8. How do I deal with burnout/the grind of rehabilitation and how I can stay motivated? c. Communication and Social Skills: 1. How do I fit in socially now and how do I cope with rejection (socially and vocationally)? 2. Why is my family so overprotective? 3. How has my brain injury affected my siblings? 4. How do I start a new relationship? 5. When/how should I start dating? 6. Building positive relationships with family and friends and conflict resolution 7. Gratitude letter to hospital personnel d. Realism, Adjustment, and Therapy Termination/The Future: i. Adaptation: 1. Why do I have to have a therapist/coach at my situational assessment/job? 2. When will I live alone, drive, and work and why can’t I do it now? 3. Why can’t I do whatever job I’m interested in? 4. How do I handle discouragement during the job search process? 5. How do I know if I should accept a job offer? 6. How do I educate my support system about my level of function in the community? 7. Do I have enough hobbies and recreation postinjury and how do I feel about recreational therapy? 8. How do I support myself financially now? ii. Intrapsychic Assimilation: 1. How to I regain my confidence? 2. How can I be a self-advocate? 3. How can I be a better person now? 4. How do I remake my life? 5. Finding well-being and happiness postinjury with all the uncertainties in my life iii. Existential Assimilation: 1. How do I handle uncertainties about my future (e.g., work)? 2. Feelings about my brain injury anniversary(ies) as time goes on 3. Holiday plans and how to infuse positivity 4. Personal growth through adversity and resiliency 5. How spirituality and my religion have helped me 6. What are the silver linings of my brain injury? (continued)

FIGURE 4.12.  Updated group psychotherapy topics.



Techniques for Communication Pragmatics Skills and Emotions 145 iv. Therapy Termination/The Future: 1. Factors for preparing for “cake day” 2. How can I maintain quality of life after discharge? 3. How do I know if I need more therapy down the road? 2. Guided Didactics and Discussions Introduced by Psychotherapists a. Awareness: 1. Common emotions after brain injury and why (e.g., sadness, depression, anxiety, fear, vulnerability, discouragement, anger) 2. Sleep hygiene 3. Deleterious effects of caffeine and other substances 4. Catastrophic reactions (CRs) and CRs by proxy 5. Stumbling blocks versus steppingstones 6. Review of CTN publications on the power of the working alliance and perceived barriers 7. Magic ingredients of neurorehabilitation and recovery 8. Ways to generalize compensations from the clinic to the “real world” b. Acceptance:  1. Components of acceptance struggles (e.g., disavowal, denial, “Yeah, buts,” guilt, and embarrassment)  2. Process versus outcome  3. Pros and cons of coming early versus later postinjury to CTN  4. Underlying reasons for power struggles  5. Forms of grief, loss, and longing for the past  6. Reference points (the day before vs. the day of the accident)  7. Identifying an area to change and how to accomplish this  8. What can I learn from failures?  9. How do “things take time” (T.T.T.) and “take my time” (T.M.T.) apply to me? 10. Goal-setting exercise for the upcoming year using the SMART template c. Communication and Social Skills: 1. Feeling like a burden after the brain injury 2. Understanding my family’s perspective, needs, and emotions 3. Reasons for patients’ self-centeredness postinjury 4. Assertiveness training 5. The sandwich technique 6. The value of family milieu meetings d. Realism, Adjustment, and Therapy Termination/The Future: i. Adaptation: 1. Incremental “bite-sized” successes at work/school versus going for broke and failing 2. Maximizing independence through errorless learning 3. Purpose of situational assessments and work trial rating forms 4. What’s the difference between “a job” and “the job?” 5. How to determine the “right-fit” job (duties, part-time vs. full-time, and the work culture) 6. Differentiating “dignity of risk” from “sink or swim” ii. Intrapsychic Assimilation: 1. The role of mindfulness in finding happiness postinjury 2. Learned optimism versus learned helplessness postinjury 3. How do I find happiness now? 4. What accomplishments am I proud of? 5. What is my new self-identity? 6. How do I define my personality now compared to preinjury? (continued)

FIGURE 4.12.  (continued)

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iii. Existential Assimilation: 1. Shattering of the assumptive world 2. The universality of suffering 3. Feelings about COVID-19 4. Finding a “new normal” 5. Living a value-driven life and finding meaning and purpose 6. Ways to brighten my day and others’ 7. How do you inspire others? iv. Therapy Termination/The Future: 1. How do I avoid flight into health and slippage in the future? 2. Will I make the best of my second chance? 3. How will I know if/when I should change my job situation in the future? 4. Maintaining zest for the long haul 3. Guided Exercises a. Awareness: 1. Three components of the working alliance based on Bordin’s (1979) conceptualization and self-ratings 2. Review of executive functions (0–10/10), self-ratings, and compensations 3. Predict my cake day and set subgoals for 3, 6, and 12 months b. Acceptance:  1. Individual “trust ratings” related to the holistic model and therapists and reasons why  2. Pros and cons of “being under the microscope”  3. Ins and outs of resistance using a self-rating scale based on Newman (2002)  4. What PEM coping zone am I in and how do I get out of the “yellow zone?”  5. The ABCD method and Twisted Thinking Handout: Personal Examples (www. counselinglibrary.org/resources/handouts/handouts-on-cbt)  6. Creating your personalized “toolkit” diagrammatically  7. Self-ratings of investment and reasons why  8. What’s the difference between “temporary obstacles” and “permanent loss,” and how do I cope with these?  9. Visits by “graduates” and their families 10. Unmasking Brain Injury Project (http://unmaskingbraininjury.org) c. Communication and Social Skills: 1. Who are your “tiers of support”? 2. Writing a letter to a “tier of support” member you want to educate about your brain injury 3. Ways to build meaningful relationships 4. Writing and sharing personalized scripts about brain injury disclosure in the community, especially at school, during job interviews, and at work d. Realism, Adjustment, and Termination/The Future: i. Adaptation: 1. Pros and cons of new leisure and hobbies 2. Rating the essential functions of a job based on your skill set 3. Pros and cons of therapists at the work site 4. What is your career destination? 5. What five factors define your personal job satisfaction? 6. Patients’ artistic rendition of their “road to recovery” 7. Reading article about Chris LeGrady (https://corporate.bestbuy.com/arizona-blueshirts-positivity-has-a-big-impact) (continued)

FIGURE 4.12.  (continued)



Techniques for Communication Pragmatics Skills and Emotions 147 ii. Intrapsychic Assimilation:  1. Mindfulness exercise using a Hershey’s Kiss (https://psychcentral.com/blog/ practicing-mindfulness-with-chocolate)  2. Myers–Briggs Personality Inventory exercise: Understanding pre- and postinjury personality styles (www.myersbriggs.org/my-mbti-personality-type/mbti-basics)  3. Personal examples of facing obstacles and reaping the benefits  4. Personal examples of resiliency pre- and postinjury and influential factors  5. Self-ratings of resiliency and emotional well-being  6. What is your personal definition of success?  7. Autobiography: Narratives about the “old self” and the “new self”  8. Who makes up your “advisory board”?  9. Who are my heroes and why? 10. Painted rock project iii. Existential Assimilation: 1. How to stay optimistic about your recovery 2. Self-love postinjury 3. “Oyster and Pearl” poem: What is your grain of sand and pearl postinjury? (www. poeticexpressions.co.uk/poems/oyster-pearl) 4. How to show gratitude and compassion 5. Gratitude montage and letter to families during the holiday season 6. Listing ways to achieve the best quality of life, hope, faith, and love for the next year iv. Therapy Termination/The Future: 1. Self-ratings of readiness using discharge criteria and a proposed time line 2. Group practice of a “graduation song” 3. Defining your “life after CTN” according to four domains: routine/structure, socialization/leisure, productivity, and meaning 4. Gratitude letters to families and case managers for a graduation newsletter 4. Handouts, Articles, Books, YouTube Videos, and Movies a. Awareness: 1. Mean Moms and Mean Therapists (Klonoff, 2022) 2. Interview with Tracy Morgan (www.youtube.com/watch?v=cET-p9LhzHo&feature=youtu. be) 3. Depression handout 4. The 7 Types of Rest That Every Person Needs (https://ideas.ted.com/the-7-types-of-restthat-every-person-needs) 5. The Invisible Brain Injury (Lassaletta & Clarke, 2020) b. Acceptance:  1. The Serenity Prayer (Kaplan, 2002)  2. God Will Save Me video (www.youtube.com/watch?v=OcDlFlOvmCE)  3. Crash Reel [Movie] (Cogan et al., 2013)  4. Veggie Tales: Celery Night Fever [Trailer] (www.youtube.com/watch?v=7HMXYbFjh_c)  5. Mr. Perkins scenes from Curious Cargo [Video] (www.youtube.com/ watch?v=EeW8gRR0Iw0)  6. Omeleto: The Present [Video] (www.youtube.com/watch?v=WjqiU5FgsYc)  7. Dancing with the Stars [Video] (www.youtube.com/watch?v=Nk8ulY01u8E)  8. Mandy Harvey Story [Video] (www.youtube.com/watch?v=bRpbYKEDhOo)  9. Me Before You [Movie] (Baden-Powell et al., 2016) 10. Partly Cloudy [Short Film] (Reher & Sohn, 2009) (www.youtube.com/ watch?v=9yOxx_4oOMs) 11. Kodi on America’s Got Talent [Video] (www.youtube.com/watch?v=DAPkOxRnh4c) (continued)

FIGURE 4.12.  (continued)

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Clinical Approaches and Techniques

12. Helen Keller quote (www.goodreads.com/quotes/3443-when-one-door-of-happinesscloses-another-opens-but-often) 13. Anne Roiphe quote on grief (www.brainyquote.com/quotes/anne_roiphe_575179) c. Communication and Social Skills: 1. Self-assessment using the communication pragmatics challenges handout (Klonoff, 2010) 2. Building Relationships and Overcoming Loneliness (www.brainline.org/article/buildingrelationships-and-overcoming-loneliness) 3. Henry David Thoreau quote on friends (www.brainyquote.com/quotes/henry_david_ thoreau_132897) 4. Joy and Heron [Short Film] (www.youtube.com/watch?v=ZQGuVKHtrxc&list=PLFZxGCdoexowSxK-5Y0pF3RU94TT9HTe&index=5&t=0s) 5. The Science of Gratitude (www.youtube.com/watch?v=JMd1CcGZYwU) d. Realism, Adjustment, and Therapy Termination/The Future: i. Adaptation: 1. Disclosing Disability, Ability 360 article on nondisclosure (www.ability360.org/ wp-content/uploads/2015/10/2015-10-Ability360-LivAbility-Magazine-Issue-02.docx) 2. Indicators of job satisfaction handout (Society for Human Resource Management, 2015) 3. The King’s Speech [Movie] (Brett et al., 2010) ii. Intrapsychic Assimilation:  1. You’re Only Human [Song Lyrics] (Joel, 1985)  2. Interview with Rami Kalazi (www.npr.org/2016/02/23/467768196/syrian-doctorspatient-load-doubles-in-aleppo-during-bombings)  3. Interview with Sharon Stone (www.hollywoodreporter.com/news/sharon-stoneopens-up-her-755488)  4. Click [Movie] (Bernardi et al., 2006)  5. 3 Tips to Boost Your Confidence (www.youtube.com/watch?v=l_NYrWqUR40)  6. The Little Engine That Could [Book] (Piper, 1986)  7. Grit: The Power of Passion and Perseverance (www.youtube.com/ watch?v=sWctLEdIgi4)  8. Who Moved My Cheese? [Book] (Johnson, 1998)  9. Derek Redmond Story (www.youtube.com/watch?v=7VfSbMh9gqU) 10. Inside Out [Movie] (Lasseter et al., 2015) 11. Quotes by John McCain and their relevance to brain injury recovery (www. goodreads.com/author/quotes/42851.John_McCain; www.entrepreneur.com/ article/319101) 12. Jennifer Lopez halftime show: Jimmy Fallon interview (www.youtube.com/ watch?v=UGFz2B-7DBc) 13. How to Make Stress Your Friend (www.ted.com/talks/kelly_mcgonigal_how_to_make_ stress_your_friend?language=en) 14. Poem by Laura Kelly Fanucci (https://www.sunnyskyz.com/blog/3022/Woman-sPoem-Is-Inspiring-Millions-During-This-Coronavirus-Pandemic) 15. Lucy Maud Montgomery quote on integrity (www.brainyquote.com/quotes/lucy_ maud_montgomery_142997) 16. The Pencil Reflection (http://mjdasma.blogspot.com/2010/09/parable-of-pencil.html) 17. Interview with Mikaela Shiffrin [Video] (www.youtube.com/watch?v=S6MAdJRh410) 18. Interview with Oksana Masters [Video] (www.youtube.com/watch?v=Ndpx91RtVW0) (continued)

FIGURE 4.12.  (continued)



Techniques for Communication Pragmatics Skills and Emotions 149 iii. Existential Assimilation:  1. Role of Character Strengths in Outcome after Mild Complicated to Severe Traumatic Brain Injury: A Positive Psychology Study [Journal article] (Hanks, Rapport, WaldronPerrine, & Millis, 2014)  2. Happy [Documentary] (Shadyac, Reid, Shimizu, & Belic, 2011)  3. Two Frogs in Trouble [Book] (Hale & Yogananda, 1998)  4. What Is Positive Psychology? [Video] (www.youtube.com/watch?v=1qJvS8v0TTI)  5. Rainer Maria Rilke quote (https://wist.info/rilke-rainer-maria/32015)  6. Tara Brach quote (www.positivelypositive.com/quotes/when-we-put-down-ideas-ofwhat-life-should-be-like-we-are-free-to-wholeheartedly-say-yes-to-our-life-as-it-is)  7. Kitty O’Meara poem (https://the-daily-round.com/2020/03/16/in-the-time-of-pandemic)  8. Willa Cather quote (www.goodreads.com/quotes/14983-there-are-some-things-youlearn-best-in-calm-and)  9. Maslow’s Hierarchy of Needs (www.simplypsychology.org/maslow.html) 10. Progression From the Fear Zone to the Growth Zone During COVID-19 (www.wku.edu/ heretohelp/documents/fearcovid19.pdf) 11. The Family Man [Movie] (Abraham et al., 2000) 12. Robert Byrne quote on the purpose of life (www.brainyquote.com/quotes/robert_ byrne_101054) 13. The Starfish Story (https://starthrower.com/pages/the-star-thrower-story) 14. Flashlight Reflection (https://emilierichards.com/2021/12/05/sunday-inspirationwhen-your-flashlight-grows-dim/?utm_source=rss&utm_medium=rss&utm_ campaign=sunday-inspiration-when-your-flashlight-grows-dim) iv. Therapy Termination/The Future: 1. This Is Water [Video] (www.youtube.com/watch?v=eC7xzavzEKY) 2. Enjoy Your Coffee handout (https://lessonslearnedinlife.com/life-is-like-a-cup-ofcoffee) 3. Horace Mann quote (www.brainyquote.com/quotes/horace_mann_119750) 4. Interview with Jimmy Carter (www.npr.org/templates/transcript/transcript. php?storyId=454050528) 5. Interview with Shaun White [Video] (www.youtube.com/watch?v=Ejn3JowlgW8)

FIGURE 4.12.  (continued)

the higher-­order existential quest to make sense of the inexplicable. The psychotherapists leading the group try to be mindful of rotating between “heavier and darker” matters to light-­filled, more upbeat subjects.

Protocol Critical is identifying when survivors are psychologically ready for participation in group psychotherapy. We have the luxury of contributions from therapists (especially treating psychotherapists) and observational data from multiple in-­clinic settings. Nevertheless, crucial criteria are their interest and willingness to discuss personal information; sufficient capacity for self-­regulation of emotions and behaviors so as not to emotionally decompensate or be disruptive to the group experience; and enough ego strength to self-­ reflect and handle feelings of vulnerability. For skeptics, an invitation to try the group

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for 1–2 weeks provides a nonthreatening option that almost always translates to greater comfort and enjoyment. At the outset of the group, the purpose is always reviewed: discuss feelings because how you feel determines how you act, and how you act determines how others react to you. Etiquette for participation is reviewed when new people join, including confidentiality, respectful and sensitive exchanges, some form of note-­taking, and opportunities to raise any feelings regarding their recovery and neurorehabilitation as well as current, sample topics (Klonoff, 2010). Newcomers are welcomed by “seasoned” members and are informed by the group facilitators that they are not expected to divulge until they feel ready so as to reduce internal and external pressures. To reorient participants, the prior session’s content is reviewed daily on a volunteer basis. As the acuteness and severity levels of patients’ cognitive and language impairments have increased, some protocols have been modified. This has included simplifying and slowing down the presentation of concepts; more detailed and regular reviews of recent notes and discussions; encouraging them to take at least some summary notes (rather than a full transcription of material from an easel pad or computerized projection); and provision of a full set of therapist-­prepared notes (with a pithy quote/clipart at the bottom) the following day for easy reference. The general format has remained intact for many years, and includes free communicating and “venting” about programmatic and recovery annoyances and hurdles; didactics and psychoeducation in dialogue form, especially once survivors experience emotional catharsis; guided exercises to translate more abstract concepts into personally applicable and concrete realizations and goals; use of multimedia and handouts in the form of readings, stories, and movie themes; and visitors involving program graduates, neurology fellows on neuroimaging and pharmacology, and international visitors contrasting neurorehabilitation in the United States versus elsewhere (Klonoff, 2010). Subjects frequently raised are feelings concerning the work re-entry process, including hesitations regarding injury disclosure and therapists’ on-site coaching; resistance to psychiatric care and psychotropic medications; and program discharge criteria. Favorites are presentations by graduates (with or without family members) who have “lived in the rehab trenches” and flourished postdischarge; review of revelations and advice from the monthly aftercare group for forward-­thinking standpoints; and inspirational YouTube videos, podcasts, and short animated films. There is crossover of relevant topics and projects to the family group to mutually enhance perspective taking and connectedness (see also Chapter 9). The group facilitators remain very open to innovative ideas and techniques spearheaded by the attendees. Group art therapy projects add spice and multidimensional enrichment like one inspired by COVID-19 whereby patients painted uplifting messages on rocks, bolstered by their brain injury insights, and then shared the symbolism with one another and their families (see Figure 4.13; a colorized version appears at the book’s companion website). Sometimes, a group member will present, for instance, a photographer who used this venue as a way to discuss his neurological decline through his pictures (see Figure 4.14 for a sample photograph and write-up). During the COVID-19 pandemic, the survivors collectively wrote a gratitude letter to hospital personnel, highlighting the mutual determination and courage to face life’s adversities (see Figure 4.15 [a colorized version appears at the book’s companion website]).



Techniques for Communication Pragmatics Skills and Emotions 151

Just be yourself and don’t make anyone wonder

I wrote this quote because whatever hardships you go through, just remember there’s always a “light at the end of the tunnel.”

FIGURE 4.13.  Uplifting messages.

FIGURE 4.14. My art represents an imaginary world where I don’t think about feeling defective. I escape my shame about my speech. This photograph was taken during my “dark period” when I was first diagnosed with a deteriorating neurological condition. The raven represents an ominous symbol and the dying flowers symbolize a deadened feeling inside and the disappearance of joy in my life (Stephen R., November 28, 2020).

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Short films and movies followed by group discussion about themes and their relevance to brain injury recovery are a powerful medium. As another illustration, Form 4.4 and Figure 4.16 contain, respectively, a series of questions about the movie The King’s Speech that can be used to generate dialogue and sample answers provided by Rachel and her peers (Brett et al., 2010). Participants’ remarks about group psychotherapy reveal that they see this as a pivotal component of their neurorehabilitation, primarily because it provides enlightenment and fortification of central holistic principles in the context of close camaraderie in a “safe haven,” confidential, and judgment-free atmosphere.

Group Psychotherapy Patients and Therapists Dear Hospital Employees: We, the patients at the Center for Transitional Neuro-Rehabilitation (CTN) at Barrow Neurological Institute, are writing to thank you for your bottomless dedication during COVID-19. We see that you have all taken risks to save others in need. Everything you do every day makes such a difference, and we appreciate your hard work and perseverance during these troubling times. There are no words for the inspiration and selflessness that you have given to others. It has not gone unnoticed that in the last year you have probably spent more time with your coworkers and patients than with your families. Thanks for caring for patients as you would your families.

Not all heroes wear capes, but they do

We at CTN feel we know something about determination and perseverance, and from what we see, so do you! CTN is a place for rehabilitation that helps survivors acknowledge brain injuries and cope with them. Most of us spend a year or longer in therapy, rebuilding our lives to get back to independence in the home, community, school, or work by using strategies, tools, and modifications. We are adapting to a new normal as are you!

wear hospital badges.

We feel we are all in this together in this difficult time of a pandemic; don’t ever feel like you are alone in this fight. The patients at CTN are truly blessed and inspired by all you have done. Sincerely, CTN Patients

FIGURE 4.15. Letter of gratitude. From Barrow Neurological Institute, www.barrowneuro. org/wp-content/uploads/CTN-Patients-Letter.pdf?utm_source=JUNE_newsletter&utm_ medium=email&utm_campaign=CTN_Letter. Reprinted by permission.



Techniques for Communication Pragmatics Skills and Emotions 153 a) What are Bertie’s feelings about his stutter that Mr. Logue notices? Rachel’s answer: • Overwhelmed (about his situation) Other patients’ answers: • Nervousness (facing his brother, making his speech) • Fear (not living up to his father’s reputation, coming across badly) • Anger/frustration (related to his stutter) • Self-consciousness (about being king) • Mistrust (toward all therapists and then Mr. Logue due to lack of success) b) Do you also have these emotions? Rachel’s answer: • I relate to all of these feelings. Other patients’ answers: • Fear related to feeling vulnerable • Self-conscious because my body doesn’t function like it used to • Frustrated related to memory and word-finding problems • Anxious when word-finding difficulties present • Overwhelmed about my problems • Didn’t trust the “CTN way” at first c) Mr. Logue is present at Bertie’s coronation and speech to help him. What experience does this remind you of in your own neurorehabilitation? Rachel’s answer: • Therapists help me better myself and find compensations for my difficulties. Other patients’ answers: • Reminds me of my therapists being present with me for clinic therapies, home visits, gym visits, outings into the community, my situational assessment, and job interviews. • Slowing down helps me develop patience and gives me time to think about what I want to say. • Role of self-advocacy—Bertie had to advocate to keep Dr. Logue in the room. I learned to be a self-advocate for my needs also, especially for work. • Recognize that some challenges won’t be “fixed,” but rehabilitation can help me compensate or work around them. d) Mr. Logue provides several compensations for Bertie during the coronation; give three examples of your own compensations that help you: Rachel’s answers: • Deep breathing • Use of a script • Involvement of my support network Other patients’ answers: • Tongue twisters to help with my dysarthria • Repetition • Eliminating distractions • Pausing to calm myself down • Slowing down to take my time • Use of a home exercise program • Practice and rehearsal for mastery • The supportiveness and creative ideas of my therapists (continued)

FIGURE 4.16.  Example responses to the King’s Speech Questions.

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Clinical Approaches and Techniques

e) What is the role of Bertie’s wife? Give one or two examples: Rachel’s answer: • Love and support Other patients’ answers: • She was his advocate; sought out doctors for him. • She was his biggest cheerleader. • She acted as a mediator and advisor. f) How is this similar to your situation? Rachel’s answer: • I couldn’t stick with this without them. Other patients’ answers: • Role of family is key (kids, spouse, parents, siblings) • Demonstration of how proactive supporters must be for our best recovery • Unconditional love g) Give an example of Bertie’s resistance to Mr. Logue’s ideas: Rachel’s answer: • He didn’t see any value in discussing his early life experiences. Other patients’ answers: • Bertie got angry and insulted Mr. Logue. • Bertie wasn’t open because he did not trust the process. • He didn’t believe the exercises would work and wanted to give up. h) Give an example of embracement of Mr. Logue’s ideas: Rachel’s answer: • He learned to trust the process. Other patients’ answers: • They built a working alliance. • Mr. Logue and Bertie were willing to apologize to each other to get back on the right track. • Bertie was willing to follow suggestions. i) Give an example of something you are resistant to: Rachel’s answer: • Needing to take my datebook wherever I go Other patients’ answers: • Medications for my mood • Completing so many steps to return to driving j) Give an example of your embracement of a therapy idea: Rachel’s answer: • Creating procedure checklists at my situational assessment and new job that help me with feeling successful and confident

Other patients’ answers: • Persevering in the job interview process even when I get “rejections” • Stabilizing my mood by working with my psychotherapist and psychiatrist (continued)

FIGURE 4.16.  (continued)



Techniques for Communication Pragmatics Skills and Emotions 155 How do the following characteristics pertain to the movie and yourself? Movie Trust

Yourself

Trusts his wife and therapist; invests time to get Rachel’s answers: I need to trust my family’s trust in my therapists. better; sees the benefits of his efforts Other patients’ answers: Trusting the step-by-step methods; get over my fears and skepticism and “just do it!”

Courage

Overcomes embarrassment and perseveres with Rachel’s answer: Facing my challenges his therapist; takes over as king; goes through every day with the long speech for the coronation Other patients’ answers: Going through a driving evaluation; trying new medications; going in a different job direction

Frustration

With his stutter; his therapist’s techniques; having to quit smoking

Rachel’s answer: That therapy won’t “fix” my problems.

Other patients’ answers: How long the recovery process takes; realizing that this feeling is part of my catastrophic reactions Persistence

Humor

He stuck it out despite his irritations; did home exercises; stepped it up to become king despite his anxiety.

Rachel’s answer: I want to “be all in” for

Could still find humor with Mr. Logue and his wife; “colorful language”; laughter provided a temporary break

Rachel’s answer: Alleviates stress

The “give and take”; Bertie, his wife, and his Positive working alliance therapist all working together; his therapist being there from start to finish

Resilience

“as long as it takes.”

Other patients’ answers: I’m staying the course even though I’m questioning some things; I’m hanging in there to learn new things (e.g., assistive technology). Other patients’ answers: I can still laugh at myself; is the “best medicine”; brings me closer to my milieu peers and family. Rachel’s answer: Mutual commitment Other patients’ answers: Can see how the relationship, day-to-day tasks, and being on the same page work!; “twoway street”; “hard to earn and easy to lose”

Bertie bounces back and tries another therapy Rachel’s answer: Despite all my prior approach despite earlier failures; realizes he can failures, I’m determined to finish CTN and work. be king and succeed despite grave fears. Other patients’ answers: I’ve had three brain surgeries from my tumor but “I’m keepin’ on keepin’ on!”; despite the yellow zone setbacks, I’m fighting to stay in the green zone.

FIGURE 4.16.  (continued)

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Clinical Approaches and Techniques

Psychiatric Care during Post‑Acute Neurorehabilitation Psychiatric disorders increase the risk for TBI and vice versa (Byars, 2019). These neuropsychiatric disorders after ABI wax and wane (Ahmed et al., 2016). Emotional disturbances, such as depression and anxiety, compromise neurorehabilitation efforts, recovery, and subsequently, cognition, functional and financial independence, interpersonal relationships, safety, community reintegration, vocational status, and quality of life (Ahmed et al., 2016; Moore, Moore, Campbell, & Atkinson, 2022; Whelan-­Goodinson, Ponsford, & Schönberger, 2008; Wortzel & Brenner, 2022; see Byars, 2019, for a review). Unfortunately, regular psychiatric services after ABI are often unavailable as a result of lack of proper resources (e.g., general vs. specialized outpatient clinics) and a dearth of specialized schooling in neuropsychiatry (Ahmed et al., 2016). Yet, some helpful resources are now available to guide the medical and neuropsychiatric management of patients with ABI, which, in turn, facilitates neurorehabilitation efforts and outcome (Arciniegas, Gurin, & Silver, 2022; Arciniegas, Zasler, Vanderploeg, & Jaffee, 2013; Ripley, 2022; Scicutella, 2019). This includes day programs and comprehensive outpatient centers with a multipronged approach (including individual and group therapies; vocational services; substance abuse counseling; and family support, education, and training) and a multidisciplinary team of neuropsychiatrists, neuropsychologists, behavioral therapists and other mental health therapists, case managers, and medical personnel (Ahmed et al., 2016). This arrangement enables integrated care so as to reduce emergency room visits, psychiatric hospital admissions, and health-­care costs (Ahmed et al., 2016). A recent meta-­analytic study found that pharmacological treatment for depression after TBI is effective, especially sertraline (Slowinski, Coetzer, & Byrne, 2019). Recent developments in the field of neuropsychiatry include pharmacogenetic testing, particularly for antidepressants (Gross & Daniel, 2018). Impediments to its utilization are lack of guidelines, unclear clinical validity, the variability in tests, and the cost (Gross & Daniel, 2018). Still, although this instrument is in its infancy, it has good potential to inform and enhance clinical decisions, especially for those who do not respond to or tolerate drugs as expected and to understand whether a chosen drug is metabolized quickly or slowly by the person (Gross & Daniel, 2018).

Psychiatric Care at the CTN General Overview and Goals Psychiatry is a vital ingredient of holistic milieu therapy (for a more detailed discussion, see Klonoff, 2010, 2014). Achieving psychiatric stability is the precursor for any real headway in other neurorehabilitation therapies geared toward increasing patients’ independence and community reintegration. Thus, our psychiatrist is considered as much a part of the interdisciplinary team as any other discipline (Klonoff, 2010). Sometimes, survivors who are experiencing considerable angst and tumult first undergo psychiatric treatment (in conjunction with psychotherapy) for several weeks prior to formal program admission to identify and manage emotional concerns and to enable the onboarding of necessary psychotropic



Techniques for Communication Pragmatics Skills and Emotions 157

medications so that he or she can best engage in intensive neurorehabilitation. When ready, other multidisciplinary evaluations and services are gradually phased in at a rate that is comfortable and beneficial for the patient and his or her support network. This approach emphasizes compassion and resource conservation. To optimize holistic care, our psychiatrist collaborates with the primary-­care physician (PCP), physiatrist, and neurologist; referrals are forwarded to a neuroendocrinologist if required. The CTN psychiatrist also acts as a sounding board and educator of the psychotherapists, providing salient clinical perceptions and ideas that are then interwoven into future appointments.

Structure and Process For full-time CTN participants, typically, the psychiatrist conducts the first interview for 60 minutes within the first 1–2 weeks of admission with the treating psychotherapist present. Relatives attend this consultation, as their perspective is essential to the diagnosis and formation of a trusting working relationship. Patients are often seen every week or two at the outset, until their medications and emotional status stabilize; following that, appointments are spread out (i.e., every 3–6 weeks), also to give time for the medication effects to unfold. Follow-­up appointments are 45 minutes in length to allow ample time for dialogue. The potential value of psychiatric care is continually assessed, starting with the intake consultation and behavioral observations during all evaluations. Self-­report and collateral contributions from caregivers are fundamental to any worthwhile psychiatric interventions, although this must be tempered with the patient’s (and sometimes, the family’s) diminished insight, denial, and/or resistance. As program discharge approaches, the need for follow-­up psychiatric services in the community is assessed, and resources are provided when best. Figure 4.17 contains common symptoms that need to be assessed after ABI (see Byars, 2019, for a review). Of note, neurological patients do not necessarily fit DSM-5-TR diagnostic criteria for mood and anxiety disorders. Since 2013, behavioral disturbances as consequences of neurological conditions are better categorized under neurocognitive disorders in the DSM-5 and the DSM-5-TR. These emotional disturbances in combination with preinjury mood disorders and characterological attributes, substance use disorders, and suboptimal coping mechanisms typically impede the working alliance, torpedo the embracement of helpful therapeutic advice, interfere with achieving maximal potential, and contaminate the milieu, ruining the ambience for others (Klonoff, 2010). Anyone using alcohol or street drugs must also be followed by our psychiatrist, buttressed with community substance abuse treatment (Klonoff, 2010). The presence of a psychiatrist on the unit is indispensable for addressing suicidality, including hospitalization, if needed (Klonoff, 2010). Our psychiatrist takes the lead in educating patients (and their caregivers) about the role and advantages of psychotropic medications. Buy-in is expedited through the simple explanation that untreated symptoms are at least, in part, a result of biochemical changes in the brain and should be addressed when these impede the survivor’s self-­identified neurorecovery and neurorehabilitation goals. Potential secondary cognitive benefits in divided and sustained attention, executive functions, immediate and recent memory, processing speed, and language fluency boost openness (Prado, Watt, & Crowe, 2018). Societal

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Clinical Approaches and Techniques

Common Symptoms • Apathy • Depression • Anxiety • Compulsive behaviors • Feeling overwhelmed • Catastrophic reactions • Fatigue and sleep problems • Irritability and agitation • Anger outbursts and aggression • Mood fluctuations and lability • Mania • Disinhibition • Suicidality • Pseudobulbar affect • Paranoia • Premenstrual emotional disturbances • Posttraumatic stress disorder (PTSD) spectrum symptoms • Disproportionate somatic symptoms Assessment Factors • Thorough history • Observation-based • Family/caregiver report • Preinjury • Postinjury • Review of systems • Review: | Vitals, BMI, PE, neurological exam | Labs: CMP, CBC, EKG, UA, UDS, TFTs, HIV (American Psychiatric Association, 2016) • Neurodiagnostic studies • In females, menstrual history • Family history • Legal history • Medication-induced mood, anxiety, and sleep disturbances • Over-the-counter herbs and supplements • Nutritional factors: | Caffeine | Hydration • MSE (mental status examination): observation-based, complemented by caregiver/family interview • R/O (rule out): | Delirium | UTI (urinary tract infection) | Toxicology (alcohol and substances) | Endocrine abnormalities Other Considerations • Stage of life the brain injury occurred • Cognitive and language status (continued)

FIGURE 4.17.  Factors in a psychiatric exam and treatment after ABI.



Techniques for Communication Pragmatics Skills and Emotions 159 • Symptom severity using rating scales (at baseline and serially during treatment): | Beck Depression Inventory (BDI) (Groth-Marnat, 1990) | Beck Anxiety Inventory (BAI) (Steer & Beck, 1997) | Patient Health Questionnaire (PHQ-2, PHQ-9) (Gilbody, Richards, Brealey, & Hewitt, 2007) | Neurobehavioral Functioning Inventory (NFI) (Kreutzer, Marwitz, Seel, & Serio, 1996) | Neuropsychiatric Inventory—Clinician Rating Scale (NPI-C) (de Medeiros et al., 2010) | Hamilton Depression Rating Scale (HAM-D) (Hamilton, 1967) | Center for Epidemiological Studies—Depression (CES-D) (Radloff, 1977) Differentiating Symptom Etiologies Neuropsychiatric Symptoms after ABI

Primary Psychiatric Disorders

• Relatively sudden onset

• Gradual onset

• Unawareness of symptoms

• Familiarity with symptoms (if family psychiatric history is present)

• Unable to articulate symptoms (due to cognitive and language deficits)

• Able to articulate symptoms

• Focus on cognitive and physical challenges

• Focus on emotional symptoms

• Symptoms wax and wane, not conforming to diagnostic criteria

• Symptom duration/episodes defined by diagnostic criteria

• Presentation complicated by deteriorating neurological conditions (e.g., seizures, brain tumors), causing anxiety and uncertainty

• Follows course of psychiatric disorder

• Grief related to loss of part of self

• Grief usually due to loss of an external “object”

• Sudden change in identity and roles, with loss • Onset more gradual, correlated with starting of independence and career and reliance on one’s career family • Vegetative symptoms and anhedonia less common

• Vegetative symptoms and anhedonia typically present

Medication Management • Lower doses, longer trial time

• Use of recommended regular/average doses and trial time

• More sensitive to motor side effects, sedation, • Less sensitive to motor side effects, sedation, and sluggishness and sluggishness • Small dose changes leading to the desired impact

• Generally requires therapeutic doses and sometimes maximum doses for desired impact

FIGURE 4.17.  (continued)

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Clinical Approaches and Techniques

stigmas, an attitude of “mind over matter,” worries about addictive properties, and/or having to “depend” on medications, as well as negative connotations and fearfulness related to internet searches, all abound and can delay or derail the patient’s, and/or his or her family’s, willingness to consider medications for the survivor. Framing psychotropic medications as one (but not the only) tool in the toolkit can be advantageous, as is slowly introducing medication adjustments, and ultimately deferring to the patient’s and relatives’ sense of urgency and agency. At times, if mood problems are disruptive enough, the patient’s continued participation becomes contingent on psychiatric stabilization, and neurorehabilitation services will be postponed or terminated, to allow the time and probability of this occurring.

Protocol Psychiatric consultation at CTN is normalized as part of the intake consultation; patients and families are informed that almost all patients have at least one consultation to learn about the role and advantages of psychiatric care. Psychiatric care includes extensive exploration of psychological considerations, integrating premorbid and medical/physiological factors, such as variations in ABI etiologies and manifestations; the role of multisystem injuries, pain, and physical discomfort; the time frame during which treatment is initiated; arrested development in younger patients; and other behavioral regressions. Personality testing conducted as part of a neuropsychological assessment contributes to the diagnostic formulation; this can elucidate state versus trait components that are causing psychological dysfunction. Prior to follow-­up sessions, the treating psychotherapist briefly meets with the psychiatrist without the patient so as to share clinical and programmatic updates, progress, and concerns that are relevant to mood and adjustment. Although the treating psychotherapist continues to attend all follow-­up sessions, the involvement of relatives is assessed on an ongoing basis, taking into account (1) the person’s preferences, (2) the psychological health of the family (e.g., propensity to inhibit the loved one’s openness to disclose), and (3) the survivor’s strides with self-­empowerment and self-­advocacy. Nonetheless, the support network needs sufficient contact and guidance so as to attain the requisite knowledge about emotional constructs and realities for their loved one, build receptivity to psychotropic medications, and provide often crucial commentary regarding their loved one’s demeanor and functionality. Accurate clinical diagnosis, multiple assessment, and medication response factors in the ABI population compared to primary psychiatric disorders must be considered, as outlined in Figure 4.17. Given patients’ cognitive deficits and accompanying organic unawareness, observational data are critical, including signs of clinical conditions. Common diagnoses are (1) adjustment disorders, (2) anxiety and/or a depressive disorder that may or may not be a direct result of the brain injury, and (3) neurocognitive disorders. In our experience, anxiety disorders are underrecognized after ABI and emerge owing to loss of function, uncertainty about the extent of recovery and the future, and the stressful impact on relationships and finances. Our psychiatrist is aware that survivors of ABI may respond differently to pharmacotherapy compared to those without an ABI. She is also mindful of choosing psychotropic medications that are “safe” in the context of neurological disorders, for instance, seizure risk, and sedating or activating effects that disrupt daytime activities and/or the nighttime routine. She avoids bupropion, as it lowers seizure threshold (see



Techniques for Communication Pragmatics Skills and Emotions 161

Byars, 2019, for a review). Addictive medications (e.g., benzodiazepines) are avoided, due to executive dysfunction such as judgment and impulse control and cognitive deficits, including memory. Stimulants are also prescribed judiciously, as they affect appetite, sleep, and may contribute to emotional lability and jitteriness. Ambien and other Z-drugs may cause more side effects than benefits. Table 4.1 lists commonly used medications for a variety of emotional disturbances after an ABI (Arciniegas et al., 2022; Byars, 2019; see Plantier, Luauté, & the SOFMER Group, 2015, for a review). Providers should be mindful of monitoring for drug–drug interactions, the serotonin syndrome, polypharmacy, comorbid diagnoses, bleeding tendencies, motor side effects, and monitor necessary lab results. Antipsychotics are used sparingly with the lowest possible dosing. Other helpful considerations are (Barclay, Wright, Kuhn, & Hinkin, 2022; Bayley et al., 2023; Byars, 2019; Ripley, 2022): • Start low and go slow with dosing. • Ensure an adequate trial duration at clinically effective doses before concluding a medication is ineffective. • Change one medication at a time to isolate effects. • Start at half of the regular dose for anxiety-­spectrum symptoms. • Use extra caution in geriatric patients. • Address negative polypharmacy, such as multiple medications from the same category and/or excessive dosing. • Screen for all herbs, supplements, and over-the-­counter medications that could affect mood, anxiety level, and sleep as well as cause drug–drug interactions. • Monitor medication compliance, especially given the survivors’ organic unawareness and memory impairments and the patients’/families’ potential propensity for skepticism and self-­initiated medication adjustments. Patients often do not recognize benefits, so collateral feedback from the support network, namely, families and therapists, is paramount using subjective and objective data. Our psychiatrist utilizes genetic testing to identify compatible medications, especially when the survivor has experienced failure with other drugs in the past, when he or she is not responding to typical doses, or when there are severe adverse effects, even at the lowest dose. Other adjunct therapeutic tools are (Klonoff, 2010, 2014; Woods & Krasuski, 2019): • Psychoeducation about the deleterious consequences of excessive caffeine, alcohol, nicotine, and THC • Mood and sleep logs such as sleep-­tracking devices, to enable ongoing tracking between meetings, especially when the patient has memory difficulties • Note-­taking during and after the session with the attending psychotherapist to reinforce concepts and treatment suggestions • Proper sleep hygiene, as well as adequate nutrition and hydration • Emphasis on compensation training for medication compliance, for instance, the use of a pillbox, alarm systems, close caregiver monitoring, and regular and ongoing check-ins by therapists, especially by occupational therapists and psychotherapists

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Clinical Approaches and Techniques

TABLE 4.1.  Commonly Used Medications for Treating Emotional Disturbances after Acquired Brain Injuries Depression and irritability • Selective serotonin reuptake inhibitors (SSRIs): | sertraline | citalopram | fluoxetine | paroxetine | escitalopram • Serotonin and norepinephrine reuptake inhibitors (SNRIs): | desvenlafaxine | venlafaxine | duloxetine in low doses | mirtazapine Anxiety • SSRIs • SNRIs • gabapentin • mirtazapine • Beta blockers (e.g., propranolol) Mood stabilization • carbamazepine • lamotrigine • valproate • gabapentin Insomnia • melatonin • trazodone • nortriptyline Fatigue and speed of processing • modafinil Agitation and paranoia • risperidone • quetiapine fumarate Pseudobulbar affect • Nuedexta Nightmares, posttraumatic stress disorder (PTSD) spectrum, and anxiety-related sleep disturbances • Prazosin Adjunctive to antidepressants and for fatigue • Cytomel Substance abuse (e.g., alcohol, opioids) • gabapentin, naltrexone



Techniques for Communication Pragmatics Skills and Emotions 163

LE S SO N S LE A R N E D 1. Communication pragmatics are multifactorial social capabilities for discourse and functional conversations; they encompass linguistic, expressive, and receptive speech; theory of the mind; social cognition; thinking skills; mood and other psychological factors; and social, relationship, and environmental contexts. After ABI, communication pragmatics deficits pose barriers for social competency and hinder all aspects of community integration. Assessments rely on observational data and formal measurement tools. Multiple treatment modalities lend themselves to one-on-one and group situations, and various communication pragmatics log formats. Multidisciplinary team suggestions in conjunction with patient and family involvement are imperative for recultivating these abilities. 2. Individual psychotherapy during post-acute neurorehabilitation remains a mainstay; therapists can eclectically integrate multiple schools of thought and methodologies based on their training, patients’ needs, and therapeutic contexts and goals. Psychotherapy in a holistic milieu constitutes a constant and fluid “push pull” between retrospective stuckage and prospective reinvention and reinvigoration. 3. Research and clinical observations support a multiplicity of benefits of group psychotherapy after ABI based on commonality of experiences and an emphasis on transitioning from overwhelming emotional angst and paralyzing uncertainties regarding the future, to rebuilding a sense of self, renewed self-­esteem, personal growth, and hope for the future. Interventions should be tailored to the survivor’s neurological status as well as program elements and constraints, with a “start somewhere” orientation. Effective formats are guided discussions, peer exchanges, didactics, visits by successful graduates, and multimedia. 4. Neuropsychiatric care is foundational for emotional stabilization, advances in neurorehabilitation, overall recovery, and practical achievements in the home and community. Close liaisons with psychotherapists and other treating physicians, in combination with (1) detailed diagnostic workups; (2) awareness of comorbid diagnoses and healthy lifestyle factors; (3) patient and family support and education; and (4) inclusion of psychotropic medications with (a) close minding of drug–drug interactions, (b) considerations of dosing and polypharmacy, (c) vigilance about potential side effects, and (d) monitoring of compliance vicissitudes, are optimal.

FORM 4.1

Communication Pragmatics Questionnaire Name:  Date:  Please indicate to what extent you have observed these behaviors in yourself since your brain injury. Circle 0 if you have no problem; 1 if it is mild; 5 if it is severe. 0 1 2 3 4 5

  1.  I have difficulty starting a conversation.

0 1 2 3 4 5

  2.  I have difficulty keeping a conversation going.

0 1 2 3 4 5

  3.  I tend to be more talkative.

0 1 2 3 4 5

  4.  I tend to be less talkative.

0 1 2 3 4 5

  5.  I talk about inappropriate subjects.

0 1 2 3 4 5

  6.  I act inappropriately in social situations.

0 1 2 3 4 5

  7.  I speak more bluntly.

0 1 2 3 4 5

  8.  I get off topic when I talk.

0 1 2 3 4 5

  9.  I tend to interrupt or dominate conversations.

0 1 2 3 4 5

10.  I speak with too much detail or in a roundabout manner.

0 1 2 3 4 5

11.  I show less range of feeling; I’m less animated.

0 1 2 3 4 5

12.  I tend to focus on myself; I’m less involved in listening. Communication Pragmatics Strengths and Difficulties

Date created: My personal communication pragmatics strengths include: 1. 2. 3. 4. 5. My personal communication pragmatics difficulties include: 1. 2. 3. 4. 5. (continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

164

Communication Pragmatics Questionnaire  (page 2 of 2) My personal goals are: 1. 2. 3. 4. 5. My compensatory strategies to reach my goals are: Difficulty

Compensation

1. 2. 3. 4. 5. Progress toward my goals: Date

Progress

From Klonoff (2010). Copyright © The Guilford Press. Reprinted by permission.

165

FORM 4.2

Nugget Notes 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12.

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

166

FORM 4.3

Four‑Column Exercise Name:   Date:     Structure/Routine

Socialization/Leisure

Productive

Meaningful

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

167

FORM 4.4

King’s Speech Questions Name:    Date:     a) What are Bertie’s feelings about his stutter that Mr. Logue notices?

b) Do you also have these emotions?

c) Mr. Logue is present at Bertie’s coronation and speech to help him. What experience does this remind you of in your own neurorehabilitation? d) Mr. Logue provides several compensations for Bertie during the coronation; give three examples of your own compensations that help you: e) What is the role of Bertie’s wife? Give one or two examples:

f) How is this similar to your situation?

g) Give an example of Bertie’s resistance to Mr. Logue’s ideas:

h) Give an example of his embracement of Mr. Logue’s ideas:

i)

Give an example of something you are resistant to:

j)

Give an example of your embracement of a therapy idea:

(continued)

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

168

King’s Speech Questions  (page 2 of 2) How do the following characteristics pertain to the movie and yourself? Movie Trust

Courage

Frustration

Persistence

Humor

Positive working alliance

Resilience

169

Yourself

5 Treatment Groups for Functional Skills with Jennifer Joy Hunsaker, Patricia Briody, and Erika E. Ehlert

Amalgamation of eclectic treatment modalities enhances the neurorehabilitation and

recovery for survivors of acquired brain injuries (ABIs) during the post-acute phase of recovery. Incorporating group therapies and activities that emphasize functional competence effectively prepares them for society or the “real world,” specifically in the home, community, work, and school environments (Ben-­Yishay & Diller, 2011; Klonoff, 2010; M ­ alley, Bateman, & Gracey, 2009). They lend themselves nicely to experiential learning to heighten (Ben-­Yishay & Diller, 2011; Klonoff, 2010; Malley et al., 2009): • Awareness • Self-­understanding • Emotional control and adjustment • Peer exchanges • Practical stepwise goal setting • Establishment of subroutines that enable mastery • Generalization of clinic-­originated compensations The atmosphere should breed social connections, collaboration, and sharing that is enjoyable, comfortable, and normalizing (Ben-­Yishay & Diller, 2011; Klonoff, 2010; Malley et al., 2009). Functional groups have extra appeal to patients who otherwise may not see the practicalities of clinic-­based interventions. This chapter describes an array of group physical therapies (aquatic therapy and adaptive balance and yoga groups), speech therapy groups (event planning, newsletter group, and a vocational group), and occupational therapy groups (a cooking group and community outings group).

170



Treatment Groups for Functional Skills 171

Assessing and Treating Functional Skills at the CTN General Overview and Goals Functional group therapies at CTN have expanded over the years, as therapists, patients, families, and third parties came to recognize the importance of transitioning more “artificial” clinic-­based interventions into ecologically valid pursuits in the home and community. Currently, the CTN offers 22 different groups across all programs, most of which are practical (see Chapter 1, Figure 1.2). Given the concrete relevance of these groups to patients’ aims, they voice considerable appreciation and meaning from such endeavors. These groups are also perfect for increasing survivors’ (and their support networks’) awareness, acceptance, and realism as all parties can see for themselves how patients’ day-to-day needs and aspirations are truly affected. This accelerates trust and buy-in toward the clinicians’ knowhow for neurorehabilitation and compensation training.

Structure and Process Functional abilities are addressed throughout holistic milieu neurorehabilitation and is done judiciously. The interdisciplinary team generates ideas about what groups to enroll a survivor in during team meetings using the intake evaluation findings and ongoing clinical needs as the impetus. These are included in the plan of care. Insight and physical, cognitive, language, and emotional capabilities to actively engage are important precursors. Patients and caregivers have say-so into what groups are joined, as this boosts motivation. At times, insurance limitations influence what groups they can attend; there is also a reasonable selfpay rate that participants (and their families) can access to enrich their options. Ancillary community resources are also offered.

Protocol Increasing functionality is accomplished through interventions in the clinic in combination with community-­based applications. The physically based groups described in this chapter are innovative adjuncts to our motor group, which improves cardiovascular endurance using indoor exercise equipment (e.g., treadmill, elliptical, stationary cycle, and stepper) while engaging in cognitive games. Domain-­specific groups allow inventive and targeted skill building while still addressing the overarching goals of metacognition, social interactions, and confidence in diverse contexts.

Aquatic Therapy in Post‑Acute Neurorehabilitation Aquatic therapy provides somatosensory inputs and enhances cortical processing of sensory and motor information (see Zhang et al., 2016, for a review). The physical characteristics of water, including its natural buoyancy, hydrostatic pressure, thermodynamics, hydrodynamic forces, and viscosity, lends itself nicely to aquatic exercise (also known as hydrokinesitherapy or hydrotherapy) after stroke as it allows easier body support than on land (Wang

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Clinical Approaches and Techniques

et al., 2018; Zhang et al., 2016). Meta-­analyses and quasi-­experimental studies for stroke and other neurological entities demonstrate a reduction in muscle spasms and contractures and improvements in neuromuscular function like gait speed and independence, postural and dynamic balance, spasticity, knee extensor and ankle plantarflexion muscle strength, as well as contraction of the knee extension in paretic lower limbs (Marinho-­Buzelli, B ­ onnyman, & Verrier, 2015; Noh, Lim, Shin, & Paik, 2008; Xie et al., 2019; see Zhang et al., 2016, for a review). Also, aquatic therapy can reduce tension, depression, anger, and confusion (see Wheeler, Acord-Vira, Arbesman, & Lieberman, 2017, for a review).

Aquatic Therapy Group at the CTN General Overview and Goals The aquatic therapy group provides a valuable supplemental physical therapy modality to address swimming capabilities incorporating water safety education and various strokes. The CTN has access to a hospital pool; other post-acute neurorehabilitation settings may need to find a community pool venue. The group improves: • Range of motion and flexibility • Balance and coordination • Muscle strength and endurance • Tone • Speed of movement and aerobic capacity • Weight bearing and ambulation Complementary objectives are to lessen stress and promote relaxation, foster group relations, and explore swimming as a possible recreational pastime. Suitable patients have some level of hemiparesis as a result of their ABI and benefit from being able to weight bear and ambulate due to the buoyancy of the water.

Structure and Process The aquatic therapy group is scheduled once per week for 60 minutes. Useful equipment includes masks, kick boards, and other flotation devices. Two sessions are devoted to those with pool access who solely require a Home Exercise Program (HEP) formulated from Physiotec, a computer-­based resource (http://physiotec.ca/us/en/patient-­engagement), or MedBridge (www.medbridge.com). For more extensive interventions, up to 8 weeks is recommended. Most often, a physical and occupational therapist treat two to three survivors and switch halfway to target different muscle groups in the extremities. From a safety standpoint, we recommend having two clinicians present and an accessible waterproof phone.

Protocol Caregiver instruction is a crucial part of aquatic therapy group, as many homes and/or recreation centers have pools. First is a review of pool safety and any other pertinent preparation,



Treatment Groups for Functional Skills 173 TABLE 5.1.  Sample Aquatic Therapy Group Exercises Stretches • Standing gastroc • Standing soleus • Seated hamstring • Seated shoulder horizontal adduction • Seated shoulder flexion Strengthening Exercise • Standing hip flexion • Standing hip extension • Standing hip abduction • Standing hip adduction

What it targets • Weight bearing • Hip strength • Balance

• Standing shoulder flexion • Standing shoulder extension • Standing shoulder horizontal abduction • Standing shoulder horizontal adduction

• Shoulder strength • Range of motion (ROM)

Cardiovascular Exercise • Marching • Hopping

What it targets • Endurance • Balance

• Walking in a circle and then walking in the opposite direction for increased resistance

• Endurance • Ambulation

• Flutter kick • Frog kick

• Coordination • Lower extremity ROM

• Combine upper and lower extremities for freestyle stroke • Combine upper and lower extremities for crawl stroke

• Coordination • Multitasking • Strengthening

followed by 10 minutes of warm-up exercises; 20 minutes of upper extremity workout; 20 minutes of lower extremity training incorporating ambulation; followed by 10 minutes of cool-down. If fitting, the patient engages in cardiovascular endeavors. Heart rate and blood pressure are taken poolside. Table 5.1 contains a sample of aquatic therapy group exercises. Participants are discharged from the group when they have achieved their individual goals, as measured by increased mobility and/or ambulation distances on land.

Adaptive Tai Chi in Post‑Acute Neurorehabilitation Tai chi ch’üan, an ancient martial art that originated in China, incorporates internal energy and soft, slow, and gentle movements, in conjunction with cognitive techniques (Gemmel & Leathem, 2006; Shapira, Chelouche, Yanai, Kaner, & Szold, 2001). Added plusses are balance, coordination, muscle tone control, and muscular strength, thus reducing abnormal hypertonicity and improving muscle weakness (Shapira et al., 2001). Tai chi ch’üan also reduces falls by promoting kinesthetic sense, balance, and coordination (­Shapira et al., 2001). These elements, as well as its positive effect on mood (less tense, afraid, confused, angry, and sad; and more energetic and happier), self-­esteem, and a reduction in stress,

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Clinical Approaches and Techniques

augment functional capacities after traumatic brain injury (TBI) (Blake & Batson, 2009; ­Gemmel & Leathem, 2006; Shapira et al., 2001).

Therapeutic Balance Group at the CTN General Overview and Goals The therapeutic balance group incorporates modified, basic tai chi movement patterns for small groups with varying physical limitations. Typical brain injury etiologies are TBI and cerebrovascular accidents (CVAs) when survivors weight bear with or without assistance. Movements incorporate the right and left sides of the body and tackle strength and sensory deficits in a calming therapeutic atmosphere. Goals are to improve: • Weight shifting • Weight bearing on the affected side • Single-­leg stance • Balance and coordination • Flexibility • Posture • Body awareness and relaxation • Direction following and multitasking

Structure and Process The therapeutic balance group meets weekly for 45 minutes and is led by a physical therapist(s) and other disciplines, such as occupational therapists. Patients may receive oneon-one assistance if their physical difficulties warrant this; otherwise, generally, each clinician monitors two to three participants with a comfortable group size of six to eight. Participants generally attend therapeutic balance group for up to 12 weeks.

Protocol The group format is initial posture techniques, stretching, and then modified tai chi movement patterns. Survivors learn to control movements of their body’s center of gravity. The slow, continuous, even rhythm of the movement facilitates sensory and motor integration and awareness of their external environment. The emphasis on maintaining a vertical posture enhances postural alignment and orientation. There is continuous weight shifting from one leg to the other, which enables balance control, motor coordination, and lower extremity strength. Large dynamic flowing and circular movements of the extremities promote joint range of motion and flexibility. The modified tai chi movement patterns incorporate purposeful activities such as reaching forward. Patients’ balance is further challenged by performing all movements on an uneven surface (a 2-inch mat), incorporating hand and ankle weights. Patients are discharged when they can execute all movement patterns to the best of their abilities, ideally incorporating single leg stance. Table 5.2 contains a sample of therapeutic



Treatment Groups for Functional Skills 175

TABLE 5.2.  Sample Therapeutic Balance Group Movements Name of movement pattern

Description of movement

Tai chi Step-Out/Holding the Ball

• Facing forward, the patient steps out to the right, knees flexed. • Shoulder flexion to 90 degrees. • Arms are in position as if holding a large ball.

Tai chi Circling the Ball

• Patient turns 45 degrees to the right. • Circles a ball with his/her arms in unison.

Tai chi Lunge

• Facing forward, the patient shifts his/her weight onto the left leg. • The left arm reaches out to the side and the right arm is down at his/ her side. • Turn 90 degrees to the right with the right arm reaching out in front and the left arm down.

These first three movement patterns are then completed on the left. Tai chi Sweep

• Right arm shoulder flexion until 180 degrees. • The left leg kicks forward and circles backward. • The left leg is placed on the ground. • Alternate the sequence.

Tai chi Crane Takes Flight

• Facing forward, the patient steps out to the right; the left foot is placed forward or off the ground, maintaining a single leg stance. • Bilateral arms come out to the side to 90 degrees. • Alternate the sequence.

Tai chi Stable and Open

• Facing forward, the patient steps to the right. • Turn his/her body to the left, pivoting with the left foot forward and arms held above his/her head. • Alternate the sequence.

balance group movements. Informative references with photos and other resources, including music suggestions, are provided in Yu and Hallisy (2015) and Yu and Johnson (1999).

Adaptive Yoga in Post‑Acute Neurorehabilitation Yoga is an ancient practice, with roots in the Hindu religion; it describes the union between the mind and body encompassing postures, breathing exercises, and meditation (Meyer et al., 2012). It has been used to treat neurological disorders related to its aerobic, breathing, and meditative components (Meyer et al., 2012). There are multiple styles, and it is considered safe and well tolerated with few side effects when modified and done correctly (Meyer et al., 2012). Randomized controlled trials of yoga have shown promise in the treatment of neurological disorders, like epilepsy and TBI, with better respiratory function and self-­perceived physical and psychological well-being (Meyer et al., 2012; Silverthorne, Khalsa, Gueth, DeAvilla, & Pansini, 2012). Qualitative and case studies of clinic and community-­based yoga and mindfulness interventions have reported gains in physical performance (e.g., balance, balance confidence, range of motion, lower extremity strength, endurance, and

176

Clinical Approaches and Techniques

walking); psychological well-being (e.g., emotional regulation, stress management, belonging, and meaningful relationships); mental fatigue; and community reintegration after TBI and stroke (Donnelly, Goldberg, & Fournier, 2020; Johansson, Bjuhr, & Rönnbäck, 2012; Schmid, Miller, Van Puymbroeck, & Schalk, 2016). Others have incorporated a yoga-based mindfulness group intervention in residential programs for survivors of TBI with positive benefits on overall and physical health, pain management, relaxation, mood, focus, impulsivity, disinhibition, awareness, and self-­reflection (Combs, Critchfield, & Soble, 2018).

Adaptive Yoga Group at the CTN General Overview and Goals The adaptive yoga group emphasizes stretching and strengthening using yoga and Pilates poses. It is designed by physical and occupational therapists for survivors with varying physical limitations. Its goals are to improve: • Balance, coordination, core strength, and flexibility • Weight bearing, spasticity, and tone • Body awareness, postural stability, and motor planning • Endurance • Auditory processing and following directions • Deep breathing and relaxation • Social interactions in groups

Structure and Process The adaptive yoga group meets weekly for 45 minutes and is run by occupational and physical therapists; our dietitian with a fitness background also helps out. The group accommodates up to eight persons and they receive one-to-one assistance as needed. Patients participate for up to 12 weeks.

Protocol Patients are discharged when they have demonstrated better flexibility and increased awareness of breathing techniques and their role in relaxation. Figure 5.1 encapsulates sample

• Cat pose

• Seated forward bend

• Child pose

• One leg seated forward bend

• Mountain pose

• Seated spinal twist

• Tree pose

• Cobra pose

• Staff pose

• Butterfly pose

FIGURE 5.1.  Sample adaptive yoga group poses.



Treatment Groups for Functional Skills 177

poses; the number and level of difficulty are determined based on group membership. See Ansari and Lark (1999) and Bondy (2019) as references, complete with photos.

Cooking Skills Training in Post‑Acute Neurorehabilitation Evaluation of functional capabilities is usually the purview of occupational therapists. Assessment tools include questionnaires, such as the Community Integration Questionnaire (CIQ; Willer, Ottenbacher, & Coad, 1994), testing of instrumental tasks like simple cooking, using the telephone, managing medications, and paying bills using the Executive Function Performance Test (EFPT; see Baum et al., 2008, for a review), and a semistructured interview, for example, the Canadian Occupational Performance Measure (COPM; https:// eprovide.mapi-trust.org/instruments/canadian-­occupational-­performance-­measure). Some investigations have identified efficiency challenges and errors in meal preparation in brain tumor and stroke survivors, implicating frontal lobe dysfunction, motor deficits, and aphasia (Godbout, Grenier, Braun, & Gagnon, 2005; Poole, Sadek, & Haaland, 2011). Some holistic programs have incorporated meal preparation in a group format to develop practical knowledge, gain self-­confidence, and share experiences and strategies (Malley et al., 2009).

Cooking Group at the CTN General Overview and Goals The cooking group is integral to preparing survivors of ABI for greater self-­sufficiency in the home as part of community reintegration. It is for higher-­level patients who have met the basic cooking objectives through occupational therapy and who are ready for a group project that will better simulate family life and eventually competitive employment. The group motto is “fun, fluid, and flexible.” At the outset, participants are provided with a purpose sheet to explain the group’s aims: • Plan a brunch or dinner meal based on dietary guidelines and time constraints. • Shop for groceries using paper or electronic checklists. • Set and follow a budget. • Safely prepare the meal. • Implement compensations and adaptive equipment.

Structure and Process Our cooking group is led by two occupational therapists with generally four to five participants. The group usually spans 3 weeks. It encompasses one or two 45-minute planning sessions, including constructing a shopping list; a 1- to 1.5-hour shopping excursion where patients are each assigned a portion of the ingredients; and a 2- to 3-hour cooking experience, also including eating together, cleanup, and a debriefing.

178

Clinical Approaches and Techniques

As part of orientation to the cooking group, everyday examples of skills are reviewed: • Planning and organization: getting together all ingredients in advance and planning when to cook what dishes so that they are completed at the same time • Focused attention: making sure food is cooking properly (e.g., not boiling over or burning) • Flexible thinking: lowering the heat if food is cooking too quickly • Multitasking: preparing several parts of meals at the same time, while possibly doing something else (e.g., washing dishes, laundry) Besides building cooking abilities, the format provides chances to remediate team behaviors, namely, communication pragmatics and higher-­order cognition, visuoperceptual skills, memory, and various executive functions such as sequencing, planning, flexible problem solving, and time management, in a more distractible and simulated “real-life” environment.

Protocol Participants coordinate with their primary occupational therapists at the time of enrolling in the group so as to personalize their goals for menu planning, grocery shopping, and cooking (see Form 5.1 for a generic list). Specific tasks are delegated by the group leaders, based on the patients’ proficiencies and home ambitions. They are provided with individualized memory assignments so as to practice their datebook use. For example, for the second planning meeting, each person is asked to bring in a pasta recipe that the group then votes on for selection. Recipes are normally for a one-dish casserole and a salad. Nutritious choices like lean proteins and vegetables are underscored, in accordance with education during the healthy living module of the psychoeducation group (see Chapter 3). While shopping, survivors are exposed to relevant and user-­friendly apps for price comparisons, coupons, and grocery lists (see Appendix 5.1 on the book’s companion website for a description). After the cooking exercise, and while eating together, time is designated to do a post hoc analysis regarding what went well with the whole process versus observed obstacles. Note-­ taking on germane concepts is always reinforced. Future time-­ savers for workers are reviewed, including Instant Pot, crockpot, and air fryer options, preparing meals in advance and preapportioning frozen dinners, purchasing prechopped fruits and vegetables, and regular menu planning during family milieu meetings (see Chapters 8 and 9 for a more in-depth description of family milieu meetings; see also Klonoff, 2010, 2014). Realms for improvement are relayed back to the primary occupational therapists to be further addressed in individual sessions and/or home visits. Concomitantly, any communication pragmatic, behavioral, and/or mood problems are directed to the speech therapist and psychotherapist. At the completion of the group, a folder with recipes and menus based on prior recipes is provided for participants to institute at home as well as a list of resources, including helpful apps for meal planning, shopping, and food logs (again, see Appendix 5.1 at the book’s companion website).



Treatment Groups for Functional Skills 179

Event Planning Training in Post‑Acute Neurorehabilitation A review of the literature indicates a dearth of programming and research on event planning opportunities for survivors of ABI, other than at the CTN. In our clinical experience, an event planning group blends multimodal skills with good applicability to real-life opportunities in a festive atmosphere.

Event Planning Group at the CTN General Overview and Goals The event planning group arranges and executes a holiday party every December. Patients are presented a purpose sheet that is reviewed at the outset of each meeting, namely, to improve: • Executive functions: planning, organization, decision making, judgment, time management, and creative problem solving • Language and communication: auditory comprehension, verbal expression, and communication pragmatics • Interpersonal interactions and teamwork • Memory by using strategies: a datebook, checklists, and notes Everyday applications are identified as planning a party for a friend or relative, or a vacation, organizing some sort of community happening (e.g., for charity), and/or participating on committees at school or work. This undertaking also reinforces the importance of showing gratefulness to others by recognizing the efforts and dedication of survivors’ support networks through a celebration.

Structure and Process The event planning group holds four weekly 45-minute sessions during the preparation phase. Given that this group recurs yearly, it is advisable to devise a formalized structure for the workload. This includes checklists with the specific time line and what duties are to be completed by what date by participants and therapists, especially on the day of the festivities. This reduces the stress on everyone and facilitates a smooth execution. Of note, clinicians running this group represent the interdisciplinary team: neuropsychologists/ rehabilitation psychologists; speech, occupational, physical, and recreational therapists; and the dietitian. They are assigned based on the necessary patient-­to-­clinician ratio and the application of their expertise to the tasks at hand. There are typically 15 survivors involved. The event planning group encompasses several committees: • Decorations: their selection and display • Invitations: design decision by a participant who possesses all the pertinent information on the event

180

Clinical Approaches and Techniques

• Entertainment: choice of games and music • Emcee: composing a welcome speech and selecting a raffle announcer • Fundraising: raising money to pay for any guest speakers • Marketing: creating announcements to be made during milieu sessions and family group • Greeters: needed on the day of the get-­together • Food: sign-ups by patients, relatives, and therapists for appetizers, sides, salads, and desserts See Figure 5.2 for sample checklists. Survivors are carefully selected for committees based on their strengths, challenges, and neurorehabilitation goals. Typically, those with higher-­level academic and vocational aspirations are assigned to lead subcommittees and for more complex planning endeavors, for instance, crafting an invitation and planning the time line for the day of the party. All tasks are completed in-house, including most of the food preparation, to lessen costs.

Protocol On the party day, traditionally, the festivities start with a presentation by a local wildlife organization that rescues and rehabilitates injured birds. These birds are unable to be released back to the wild and therefore have a “new vocation” or Plan B (Klonoff, 2010). Money is raised by the patients using a raffle system to cover the cost of the speakers. Survivors, their relatives, and some therapists attend the presentation. Participants are required to complete homework, whereby they learn and recall certain facts and, importantly, relate the material to their own recovery journeys. See Form 5.2 for sample homework questions and Figure 5.3 for customized answers based on the wildlife group’s presentation. The form can be a prototype for any outside presentation or media event (e.g., a movie) that promotes self-­discovery and gratefulness. After the presentation, patients, families, the staff, and selected hospital and community invitees share a smorgasbord meal, socialize, and engage in a raffle. Games and holiday activities are provided for children, such as decorating gingerbread cookies. Postevent, the group clinicians and survivors meet for one more 45-minute session for a post hoc review of what went well and what can be improved upon; supplemental feedback is obtained during a team meeting, milieu session, and family group. Patients are encouraged to actively partake in the discussion, as this fosters reflective thinking, problem solving, and ownership, especially when things go awry and compensations must be adapted.

Newsletter Group in Post‑Acute Neurorehabilitation Participation in a project-­based newsletter group gives the unique opportunity to practice cognition and language, such as reading, writing, comprehension, prospective memory, and executive functions, as well as strategizing in a social atmosphere (Malley et al., 2009).



Treatment Groups for Functional Skills 181 Invitations Procedures Goal: Create an invitation for the holiday party and report RSVPs to the group. Date Completed

Step Task  1.

List details needed in the invitations.

 2.

Use ideas generated in the group to create an invite (in a one-on-one speech therapy session).

 3.

Review a draft of the invitation with the lead speech therapist (needs to be finalized by [DATE] and have printed before the next event planning group session).

 4.

Update dates to include in the invitations (for guests in departments outside of the CTN).

 5.

Print letters.

 6.

Stuff envelopes (can get help during the next event planning group session).

 7.

Put labels on envelopes.

 8.

Create and/or give the RSVP tracking sheet to the front office secretary.

 9.

Check on the RSVP list weekly.

10.

Make announcements in milieu sessions to RSVP by the deadline. Decorations Procedures

Goal: Make the unit look festive for the holiday party. Date Completed

Step Task 1.

Take inventory of the decorations.

2.

Decide on centerpieces for the tables.

3.

Assemble and decorate the tree in the lobby.

4.

Assemble and decorate the tree in the milieu room.

5.

Check to make sure hangers are on the windows in the milieu room, physical therapy gym, lunchroom, occupational therapy gym, and hall windows.

6.

Hang decorations on the windows throughout the CTN.

7.

Hang wreaths on the doors.

8.

Put tablecloths and centerpieces on the tables on the day of the party. (continued)

FIGURE 5.2.  Sample holiday party checklists.

182

Clinical Approaches and Techniques Time Line Procedures

Goal: Create a time line and schedule of volunteers for the holiday party. Date Completed

Step Task 1.

Generate a list of patients and therapists to help during the party.

2.

Create/print a sign-up sheet to obtain a list of patients and therapists who are not in the event planning group but who want to help at the party.

3.

Make announcements and pass around the sign-up sheet in milieu sessions twice per week.

4.

Use the blank party time line sheet (see below) and work with the therapist to identify which patients and therapists will help at the party (select at least one patient and one therapist for each area).

5.

Have the therapist make copies of the time line to give to each patient and staff member helping at the party. CTN Holiday Party Time Line

Time

Event

Location

10:00– 10:40

Set-up

Gym, milieu room, lobby, lunchroom, kitchen

Meet wildlife presenters

Third floor of parking garage

A.M.

11:45 A.M.

Greeting and 12:00– 12:15 P.M. nametags 12:15– 1:15 P.M.

Emcee welcome speech

Participants

Comments

CTN lobby Milieu room

Wildlife presentation Milieu room Party set-up Gym, lunchroom, (therapists only kitchen during presentation) Greetings and nametags

CTN lobby

1:15– 2:45 P.M.

Lunch (serving food)

Gym, lunchroom

1:15– 2:15 P.M.

Raffle ticket sales

Gym

Include two therapists and one patient for each shift

2:15– 2:45 P.M.

Raffle

Gym

Need two therapists and two patients

2:45– 3:45 P.M.

Clean

All available therapists

Photographer: (NAME)

FIGURE 5.2.  (continued)



Treatment Groups for Functional Skills 183 Name:   Date:      Complete these questions following the

Liberty Wildlife

presentation. Turn them in to

[Name]

Anita

before or during the milieu session on

[Name]

Monday December 17, 2021

.

[Date]

1. List three facts you learned from the presentation. • Bald eagles can have neurological problems from eating lead. • Falcons need night vision. • Birds of prey are larger and faster. • Owls have 14 bones in their necks and can turn around to see behind themselves. • This organization has helped 10,000 birds. • If I find an injured bird, I can call this organization and they will come and get the bird. • Only 60% of the injured birds can return to the wild. 2. What did you like best about the presentation? • The presenters walked around so we could see the birds up close. • The reminder that part of nature is injuries and recovery. • The kindness and dedication of the presenters who volunteer so much of their time. • The birds were able to adapt to their disabilities. 3. Name three ways the information you heard in the presentation relates to your recovery. • We and the birds got a second chance after our injuries. • Getting help sooner means a quicker recovery. • We and the birds are recovering so as to be on our own again. • Education about injuries increases knowledge and compassion in others. • Like us, after a head injury, the birds have different personalities. • Life is different after a serious injury and it takes a treatment plan, steps, and compensations to

make improvements.

• After an injury, you can learn to live with your new situation and have a good life. • It is OK (for the birds and for us) to lean on others while we recover. • Healing is a process and there needs to be a special plan for each entity to rehabilitate properly. • Only release the birds and us if the environment is safe. • We and the birds are still lovable after our injuries. • Like us, there is maybe a Plan A, back to where we were, or else a Plan B, doing something different, but

fun and with a purpose.

4. What are you going to do to show compassion this holiday season? • Be present and social. • Be mindful of my mood and have an optimistic and upbeat attitude. • Say encouraging words to others. • Treat others with kindness and understanding since I don’t know what they might be dealing with. • Do more at home to help out (e.g., cook). • Give more to our families who are giving so much to us. • Pay extra attention to other injured people. • Volunteer at a food bank. • Be more grateful for what I have and “pay it forward.”

FIGURE 5.3.  Liberty Wildlife Presentation Homework.

184

Clinical Approaches and Techniques

Newsletter Group at the CTN General Overview and Goals The newsletter group produces the CTN newsletter “Things Take Time” (T.T.T.), which is distributed at semiannual CTN graduation ceremonies. The patients are presented with a purpose sheet that is reviewed at the outset of each meeting, namely, to improve: • Executive functions: planning, organization, time management, judgment, reasoning, prioritization, and decision making • Language and communication: reading, writing, auditory comprehension, verbal expression, and communication pragmatics

Structure and Process Our newsletter group is scheduled for one 45-minute session per week and spans 3 weeks. It is run by speech therapists; as this group is highly language-­based, other disciplines cotreat. Usually, there are up to 10 participants with a 2:1 or 1:1 patient-­to-­clinician ratio, based on needs. Given that this group recurs semiannually, it is advisable to devise a formalized breakdown of the workload. This includes preplanning assignments and contributions as well as the time line for completing a rough draft and final copy of the newsletter. Time is taken each session to allow for memory assignments to be entered into paper or electronic datebooks. This expedites a smooth execution as well as nice variation in content. See Figure 5.4 for sample newsletter contributions and responsibilities. After consultation with his or her speech therapist, each patient is assigned a newsletter portion based on strengths, difficulties, and neurorehabilitation objectives. Speech therapy and/or psychotherapy sessions are utilized for extra assistance and/or to meet deadlines. In general, one survivor with higher-­level academic and vocational ambitions is selected as the “guest editor” to stretch higher-­level thinking. This person leads conversations and organizes the voting for the newsletter’s cover design and color scheme. The guest editor compiles the quotes submitted by group members and determines a system for ranking the top five contributions; he or she then leads the weekly update. Afterward, the guest editor gathers assignments, provides basic corrections to group contributors, and brainstorms visà-vis the layout and format of the newsletter with the speech therapists.

Protocol During the first newsletter group, the purpose, background, and import of the newsletter’s name are reviewed. On a ceramic plaque, which was a gift from a visitor from Denmark, is displayed a grook by Piet Hein (2004), a Danish scientist, translated as “When you feel how depressingly slowly you climb, it’s well to remember that Things Take Time.” In addition to specific assignments, all participants are asked to find two inspirational quotes and one idea for the cover design. Newsletters from prior years are examined to generate ideas. ­Participants are then presented with a planning worksheet on which they record due dates



Treatment Groups for Functional Skills 185

for their rough drafts and finalized contributions, along with all other group members’ projects. An advantage of this group is peer input. Each week, patients must be prepared to provide verbal updates about their specific contribution. Consensus voting is utilized to decide on the quote, as well as the cover design and color scheme. The members collaborate to create a word search puzzle using CTN lingo. During the third session, there is a peer editing exercise, in which survivors exchange their submissions with other members to provide and receive suggestions. Final due dates are agreed upon, and then memory assignments are given, of which electronic versions are turned in to the patients’ speech therapists. The layout and content of the newsletter are finalized by the guest editor and a speech therapist. The newsletter is dispersed to all attendees at the graduation ceremony. See Appendix 5.2 at the companion website for sample newsletter pages. Staff Roster: Compile a list of the current CTN staff. Quotes: Submit an inspirational quote you have heard or create one of your own. Poems: Create a poem about your journey through neurorehabilitation, fellow patients, therapist(s), friends, life, love, or anything you like. If you do not want to create your own poem, you may submit a poem written by someone else. Community Outings Group: Write a summary about your favorite community outing. Why was it your favorite? What did you learn? Do you or someone else have any pictures that could be included in the newsletter? Words of Thanks: Is there someone you would like to thank for helping you through your neurorehabilitation process? Write a paragraph thanking, for instance, your family, another patient, staff member. Patient Perspective: Tell your story and share your perspective on a topic such as your recovery from your brain injury, how attitude can make a difference, your experiences at CTN, and the like. Interview: Interview another patient or staff member. Share, for example, his/her background, why he/she is at CTN, goals for the future, how CTN is helping to achieve those goals. Situational Assessment: Write a summary about your situational assessment. How did it prepare you to return to work? What did you learn from it? Poll: Find a topic of interest and ask patients how they feel about it. Examples are one of your group therapies, current news events, and so on. Create a Word Search Puzzle: Think of words related to your therapies and recovery using CTN vocabulary and generate a puzzle. Recipe: Does your family have a favorite recipe? Are you following a special tradition when making it? Share the recipe and your thoughts about it. Song Lyrics: Choose a song and write a paragraph explaining why it is inspiring to you. Top 5/Top 10: Compile a “best of” list for the year on the topic of your choosing (movies, books, memorable moments, etc.).

FIGURE 5.4.  Newsletter contributions and task responsibilities.

186

Clinical Approaches and Techniques

Community Outings in Post‑Acute Neurorehabilitation A central premise of post-acute neurorehabilitation, especially in holistic milieu programs, is incorporating doable pursuits into naturalistic settings. This enables discovery-­based and experiential learning (Malley et al., 2009). Community outings provide a safe and supportive way to generalize clinic-­initiated compensations; address practical skills, namely, money management, directionality, and phone calls; and then connect these to salient capabilities and identity, like time management and leadership (Klonoff, 2010; Malley et al., 2009).

Community Outings Group at the CTN General Overview and Goals The history of community outings at the CTN has been provided previously (for details, see Klonoff, 2010; Klonoff et al., 2000). Given common alterations in patients’ hobbies, interests, cognition, behavior, and functional status, community outings and their planning meetings are springboards for boosting survivors’ comfort, mobility, communication, demeanor, and pathfinding in various “real-world” settings as well as exposing them to novel, interesting, and worthwhile leisure resources, especially if preinjury options are no longer viable (Klonoff, 2010; Klonoff et al., 2000). Participants are provided with a purpose sheet that is reviewed during the outing planning session: to increase independence in the community so as to apply skills and compensations learned at CTN to community locales with friends or relatives. They each develop a list of goals, such as improving memory, directionality, executive functions (e.g., decision making, time management, planning, flexible problem solving, initiation, and follow-­through), communication pragmatics, self-­consciousness, aphasia (e.g., receptive and expressive abilities), behavior (e.g., self-­monitoring and impulse control), and mood (e.g., irritability, depression, social anxiety, etc.) with concomitant strategies (Klonoff, 2010). (See Figure 5.5.)

Structure and Process The community outings group meets midweek (Wednesday) for approximately 3 hours. A couple of days before (Monday), a 45-minute planning session is held. The group and planning sessions are transdisciplinary, incorporating speech, occupational, physical, and recreational therapists (Klonoff, 2010; Klonoff et al., 2000). At times, a neuropsychologist/rehabilitation psychologist or dietitian may attend, depending on the aims of the patients and the community destination. Based on the group mix and injury severities, the clinician-­to-­participant ratio ranges from 1:1 to 1:2, with a total of approximately six patients. Their readiness for participation in community outings group is determined by their core team and relevant physicians and is also appraised during team meetings. Given the acuity and severity level of many survivors’ brain injuries, they will sometimes start with “mini community outings,” with about two to three attendees and two therapists, to gradually reintroduce them to the community. Once their competency and adjustment increase, they are mostly invited to attend the larger planning and group outings. Patients generally attend four to eight outings.



Treatment Groups for Functional Skills 187 Name:

Adam

Name:

Anna

Date:

9/16/21

Date:

11/3/21

Destination:

Breakfast restaurant

Destination:

Art museum

My outing job:

Time management

My outing job:

Directions

My Goals Physical therapy

Scan to avoid traffic hazards and people in crowded areas.

Occupational therapy Stay within the budget.

My Goals Physical therapy

Occupational therapy Scan artwork carefully and pay attention to the details.

Speech therapy

Demonstrate appropriate Speech therapy table manners.

Speech therapy

Stick to appropriate conversation topics and refrain from touching others.

This relates to work because: Professional work behaviors and safe community mobility are necessary for getting and keeping a job in customer service. My outing responsibilities are: † Pay attention to how much time it takes to walk to the restaurant. † Write down a time schedule in my datebook. † Cue the group when it is time to leave.

Use my walker while looking at the exhibit and navigate obstacles.

Do a three-sentence write-up of my favorite painting.

This relates to work because: Improving my ambulation, scanning, and writing skills is important for returning to my prior position as a teacher’s assistant. My outing responsibilities are: † Follow my phone GPS to get to the art museum using the light rail system. † Direct the other outing members to the different exhibits using a museum map.

FIGURE 5.5.  Sample goals for community outings group.

The group experience builds camaraderie and simulates social conduct in society, for instance, friendships, dating, and social event planning (Klonoff, 2010). Members also learn by observing and interacting with one another, including differentiating potential pitfalls contrasted with innovative tools. They also enjoy getting out of the clinic, as it is normalizing and fun, especially when they can gravitate back to aspects of their prior life and experience self-­sufficiency and quality of life. Use of the datebook, and assistive devices for ambulation and communication, are continually strengthened, both for planning meetings and on the day of the outing.

Protocol Figure 5.6 summarizes the general procedures for community outings group. Patients collaborate to decide on the outing destination; this breeds openness to viewpoints and

188

Clinical Approaches and Techniques

Therapists’ Planning Phase 1. Therapists decide who is appropriate to join the community outings group during team meetings: a. Consider the therapist-to-patient ratio. b. Consider patient readiness and if the group objectives align with the patient’s goals. 2. The goal sheet is passed around to the patient’s core therapy team. Each discipline chooses specific goals for the patient to work on throughout the community outings group. Outing Planning Session with Patients: Mondays for 45 minutes 1. Ideas for the week’s outing are written on the board (rotate between restaurant, education, active, and life skills [REAL]). a. Patients use prior assignments and a resource list to generate and submit ideas. 2. One patient is assigned as the leader and he/she conducts a vote to determine the location of the community outing. a. Beforehand, participants review rules (patients get two votes and therapists get one vote). 3. The remaining jobs are distributed among the other patients (money manager, time manager, directions, etc.). 4. Each patient completes the duties for his/her job using task checklists and memory assignments. Therapists provide support. a. Part of the leader’s job is to prepare a script to read during the next day’s milieu session asking each group member to announce his/her job and goal, and how these relate to home and community independence, school, and/or work (see Form 5.3). Community Outing: Wednesdays 9:00 A.M.–12:00 P.M. or 1:00 P.M.–4:00 P.M. 1. Patients come prepared with compensations and any items assigned during the outing planning session (water and a snack). 2. Patients review their feedback forms from their last community outing to reorient themselves to their target skills (see Form 5.4 and Figure 5.9). 3. Patients initiate their respective duties (making announcements, providing directions, etc.). a. They focus on their various goals and complete memory assignments throughout the community outing. Therapist support is provided. 4. Upon returning to the unit, patients are given a 10-minute rest break. During this time, the therapists gather to fill out rating forms for each patient. 5. Therapists meet one-on-one with patients to review the feedback form. The patient takes notes on his/her copy. 6. Patients are given a memory assignment to come up with ideas prior to the next outing planning session (by 9:00 A.M. on Monday). a. Therapists will indicate the type of outing (REAL) and what the budget will be. Therapists’ Outing Review Meeting: Thursdays for 45 minutes 1. Therapists meet to: a. Check off memory assignments completed by each patient. b. Discuss areas of strength and challenge for each patient. c. Choose patients’ jobs for the following week; try to make sure everyone has a chance to do each job based on appropriate goals. d. Enter costs into the budget to track expenses. e. Decide which patients should be discharged and added. f. Prepare the schedule request for the following week. g. Decide which therapists will complete what documentation. h. If necessary, call in advance for information about the destination (e.g., adaptive rock climbing, stadium tours, etc.).

FIGURE 5.6.  General procedures for community outings group.



Treatment Groups for Functional Skills 189

compromise. Destinations rotate through four categories (Klonoff, 2010; Klonoff et al., 2000): • Restaurants: affordable possibilities for breakfast or brunch • Educational: museums, galleries, a university campus, hobby stores, bookstores, and so on • Active: zoo, golf range, hiking, bowling, miniature golf, outdoor games at a nearby park, picnics, and the like • Life skills: for instance, library, grocery store, pharmacy, shopping mall, farmers’ markets, light rail and/or sky train trips, airport Patients rotate through a series of “jobs” for the community outings (Klonoff, 2010): • Timekeeper: watches times associated with leaving, destination activities, and returning to the unit • Phone calls: obtains general information about selections, makes reservations • Weather: looks for potential confounds due to precipitation and temperature • Expenses: keeps choices within a set budget (ranging from no charge to $15 per person) • Map and route: determines how to get to the location by foot or van • Leader: oversees flow of events and instigates problem solving in the ­moment Each of these duties has a checklist (see Figure 5.7). During the milieu session on the day preceding the community outing, the leader reads a script and is responsible for reviewing the destination and checking in with each participant regarding his or her job and goal during the outing, and how these relate to future community reintegration (see Form 5.3 that can be used to document such a script and Figure 5.8, a filled-­in version of it). (See Chapter 8 for more information about milieu sessions.) This information is reviewed for everyone to hear, as it acquaints others with transitions to societal pastimes. It is also encouraging to newcomers who have not yet had the chance to venture outside the clinic. At the completion of a community outing, patients and therapists meet for 15–30 minutes to debrief about accomplishments and obstacles. Each person receives written feedback on a Community Outing Skills Log, targeting areas for improvement (see Form 5.4 for a sample log and Figure 5.9, p. 192, a completed version of it). Patients are discharged from the community outings group when they have met their personal objectives.

Vocational Group in Post‑Acute Neurorehabilitation Critical to transitioning survivors of ABI to competitive employment is cultivating prework abilities in the neurorehabilitation clinic and then actively transitioning them to various jobs in the community (Klonoff, 2010). Approaches should include education, work preparation groups, simulated work projects, and volunteer opportunities to lay a foundation for

Directions Checklist Step Procedure

Date of Outing

1.

Use the internet to locate the address(es) for the destination(s).

2.

Get directions from CTN to the outing destination(s) using the GPS on your phone.

3.

Write assignments in your datebook for Wednesday and set alerts for timesensitive assignments: a.  “Bring water and a snack for the outing.”

4.

On the day of the outing, review last week’s feedback and read through your job responsibilities. Set alarms and/or record memory assignments, if needed: a.  Give clear directions to the driver on the way to the destination. b.  Read your job and goals out loud when called on by the leader. Time Management Checklist

Step Procedure

Date of Outing

1.

Create a tentative time schedule with a therapist.

2.

Share information with the participants.

3.

Write assignments in your datebook for Wednesday and set alerts for timesensitive assignments: a.  “Bring water and a snack for the outing.”

4.

On the day of the outing, review last week’s feedback and read through your job responsibilities. Set alarms and/or record memory assignments, if needed: a.  Wear a watch or carry a cell phone to keep track of the time line independently. b.  Announce the tentative time schedule to the group before we leave or in the van. c.  Before heading out, notify participants that if the group becomes separated at the destination, decide on a time and place to meet. d.  Cue group members within 10 minutes before needing to head back to the unit. Leadership Skills Checklist

Step Procedure

Date of Outing

1.

Discuss possible destinations and take a vote to decide on the final choice.

2.

Work with a therapist for a backup plan.

3.

Write a memory assignment in your datebook for Tuesday: “Read community outing script during the milieu session.” a.  Call on group members to announce their jobs and goals.

4.

Write assignments in your datebook for Wednesday and set alerts for timesensitive assignments: a.  “Bring water and a snack for the outing.”

5.

On the day of the outing, review last week’s feedback and read through your job responsibilities. Set alarms and/or record memory assignments, if needed: a.  Gather all members in the kitchen before the outing and take roll call. b.  Have each member read his/her job responsibilities aloud. c.  Collect resources while on the outing and give these to the therapist as soon as we return to the unit (e.g., menu, brochure, etc.). d.  During the drive back, lead the group in a discussion about the pros and cons of the community outing.

FIGURE 5.7.  Sample job checklists for community outings group. 190



Treatment Groups for Functional Skills 191 I am the leader for this week’s community outing. We are going to: (location)  the Phoenix Art Museum   . My goal for this outing is:  Be flexible and patient with others and problem-solve if problems come up    and this relates to my home and community independence  /  school  /  work (circle one) because:

I will need to get along with coworkers and go with the flow when issues arise that I’m not expecting.  . I will now call on my fellow group members to announce their jobs and goals: Job

Goal/Relationship to Community Independence/School/Work

1. Jimmy: Directions

Read the directions to the van driver for the museum; reading and directionality are necessary for me to return to working for the delivery business.

2. Annie: Time Manager

Track the times we leave the unit and when we need to return; I need to be punctual for work and keep track of my breaks.

3. Celeste: Money manager

Let the therapist know after the meal how much it cost and how much a 20% tip would be; I need to track my expenses and function in a restaurant for when I go out with my family.

4.

FIGURE 5.8.  Completed Leader’s Script for the Milieu Session.

realistic appraisal of work potential (Klonoff, 2010; Malley et al., 2009; Tyerman, Meehan, & Tyerman, 2017). After ABI, work etiquette, job analysis, emotional coping techniques, and strategy implementation are fundamental for successful reintegration to employment (Klonoff, 2010; Malley et al., 2009).

Vocational Group at the CTN General Overview and Goals The purpose of vocational group is to improve awareness, acceptance, and realism about the effect of an ABI on resuming work as well as the abilities necessary to seek, obtain, and maintain competitive employment. Patients are informed how cognitive, language, emotional, interpersonal, and physical limitations impact postinjury employment and the magnitude of generalizing compensations for lasting success. They gain practical experience in work behaviors such as planning, organizing, and carrying out simulated work assignments

192

Clinical Approaches and Techniques

Skill Areas/Community Outing Job

Skills to Address

Preparedness and time management • Set alarms to manage time. • Bring your backpack to carry all belongings. • Be ready to leave • Make a memory assignment to pack your water and a snack • Have and manage all necessary the night before. belongings • Plan enough time for activities Use of compensations • Refer to your datebook • Use assistive devices • Double-check your work

• Keep your datebook readily available and check it often. • Use assistive technology to repair conversation breakdowns. • Take detailed notes so you can share accurate information.

Community safety • Judgment • Mobility • Attention

• Do not wander away from the group. • Only cross streets at dedicated crosswalks. • Buckle and tighten your seatbelt so it is firmly around you.

Visual scanning • Of written material • In rooms • Outdoors • While crossing streets

• Take time to scan your environment to find what you need (e.g.,

Mobility • Use assistive devices • Follow your physical therapist’s recommendations

• Watch your footing when stepping up/down from curbs. • Use your cane on uneven terrain.

Communication pragmatics • Professional behavior • Appropriate interactions

• Avoid sharing information that is too personal. • Take equal turns in conversations.

Communication • Listen carefully • Understand instructions • Communicate needs clearly

• Ask questions when you are not sure what someone said. • Get all group members’ attention before making

entrance, restroom).

• Look both ways when crossing streets or parking lots.

announcements.

• Speak loudly and clearly when ordering food in a noisy

restaurant.

Problem solving/flexibility • Find solutions to problems • Think of alternative plans

• Give yourself time to consider all options before making a

decision.

• Be open to other group members’ ideas.

FIGURE 5.9.  Completed Community Outings Group Skills Log.

as a team. This group operates in tandem with job searching in individual therapy sessions; see Chapter 7 for more details about the work re-entry process.

Structure and Process Virtually all patients in the Work Re-Entry Program participate in some or all of vocational group, based on their neurological status, work history, and vocational goals. At the outset, participants review the purpose of vocational group and the importance of understanding how the aftermath of ABI affects work endeavors. Vocational group is divided into two



Treatment Groups for Functional Skills 193

segments: educational and work modules, lasting approximately 18 weeks. Vocational group is led by speech therapists (one of whom is the vocational specialist), occupational therapists, neuropsychologists/rehabilitation psychologists, and sometimes recreational therapists or the social worker. There is normally a 1:1 to 2:1 patient-­to-­clinician ratio, based on the attendees’ needs. Relevant information is also presented in the family group so that caregivers are looped in (see Chapter 9).

Protocols Educational Modules

Educational modules accommodate 6–14 survivors and involve two 90-minute sessions per week for approximately 8 weeks. There are seven modules, each of which runs for 1–2 weeks. Patients attend only the modules that pertain to their therapeutic goals, although generally all are valuable. A decision with regard to who receives what interventions is made during general team meetings, with weighty input from core providers. Some modules have homework; others focus more on in-­session activities. Speech and/or occupational therapists (and the social worker, when appropriate) guide group discussions and/or responsibilities, including personalized investigations vis-à-vis the impact of attaining competitive employment when on medical disability insurance. The social worker also connects survivors to community resources, for instance, case managers, and state agencies for more in-depth instruction about medical benefits with the intent of “do no harm.” The following listing offers a brief description of each module. See Appendix 5.3 (with Forms 5.i to 5.viii and Figures 5.i and 5.ii) on the book’s companion website for the specific topics and detailed content, some or all of which can be transferred onto PowerPoint slides and/or handouts. 1. CTN Work Re-Entry Program: Teaches patients and caregivers about the CTN return-­to-work steps and the pertinence of a variety of interventions and groups. 2. Résumé, Cover Letter, and Thank-You Note: Assists with generating and modifying a résumé, cover letter, and a thank-you note to meet individualized circumstances. Patients produce and update their résumés and participate in peer editing and revisions. A “real-life” job posting is used to complete the exercises. 3. Job Applications: Provides practice with online and hard-copy job applications and how to make a good first impression. The purpose is to understand all steps for successful applications as a first introduction to the employer and a way to “meet you on paper.” Participants use their personal data for the applications and examine typical questions in the personality inventories. 4. Interview Skills: Instructs group members how to approach interviews, for instance, recommending not responding to phone calls without a clinician present and also remembering to inquire regarding a job coach attending all potential interviews. Survivors practice creating scripts as a major compensation for answering various interview questions. They then undergo “mock interviews” that are recorded and

194

Clinical Approaches and Techniques

reviewed as a group (by therapists and peers) in terms of their positive elements and areas for improvement. 5. Workplace Professional Behaviors: Educates participants about various rules and acceptable comportment expected in the workplace to be an effective employee. Various scenarios are studied; role playing is incorporated. 6. Americans with Disabilities Act (ADA): Teaches patients the ADA and key terminology, for example, disability, essential job functions, rights, and reasonable accommodations. 7. Personal Finances: Informs survivors how brain injuries and postinjury competitive employment impact financial management. Patients are given pointers for money management, like finding a trusted advisor(s) and budgeting principles. Work Modules

This facet of vocational group encompasses two separate simulated work projects, one in the fall and the other in the springtime. The group accommodates 8–14 survivors. Each section runs for 7–10 weeks, with one to two 90-minute meetings each week. Cognitive, language, and motor capabilities are targeted, such as verbal comprehension, verbal expression, communication pragmatics, mathematics, executive functions (e.g., decision making, problem solving, organization), attention to detail, speed of processing, accuracy, and fine-motor coordination. Work behaviors are addressed, including self-­regulation, nervousness, teamwork, and openness to feedback. Rehearsal of procedural checklists is prioritized. For the first assignment, participants conceive, prepare, and package dog biscuits; the second task is to invent and assemble bookmarks and greeting cards. Products are sold at two different farmers’ markets and profits are donated to relatable charities, for instance, the Brain Injury Alliance. It is a priority for patients to attend, given the links to employment and emphasis on teamwork. Participants are accountable for certain principles that simulate common codes of conduct at a job, including timeliness, a suitable dress code, and professional behaviors. Active listening, didactics, peer exchanges, note-­ taking, and follow-­ through are emphasized. Homework is given, namely, researching potential products, taking inventory of supplies, and preparing sales pitches regarding the merits of each idea. Along the way, therapists facilitate open dialogue about how each phase is unfolding, including what is going well versus potential pitfalls. They also provide opinions and input concerning specific cognitive, language, emotional, interpersonal, and physical challenges, and the applicable strategies, always tying these to eventual job scenarios. On each market day, the group operates as a cohesive team, helping with set-up, sales, and cleanup. Mathematical aptitude is required to accurately sell the products, and appropriate communication is practiced. A final wrap-up meeting reviews all work module constituents, including the market experience. Each patient devises and shares a list of three realms he or she did well in and three domains for improvement. He or she rates performance in relevant arenas, as do the clinicians (see Form 5.5 for a sample rating scale and Figure 5.10 for a completed version of it). Ratings are compared and discussed with each participant during follow-­up speech therapy, occupational therapy, and/or psychotherapy sessions.

Name:  Gwen   Date:  4/20/21     Scale: 1 = unsatisfactory; 2 = needs improvement; 3 = appropriate for work; 4 = good;      5 = excellent A score of “3” is the MINIMUM level of performance acceptable for work. The overall goal is to achieve a score of “4” or “5” in each of the following areas. Performance Work Skill

Self

Timeliness

1 2 3 4 5

Therapist

Comments

1  2 3 4 5 Self: I was usually on time. Therapist: Abou t half t h e t i m e, s h e

n ee ded pro mp t in g to b e rea d y wi t h a l l s u p p l ies a t t h e start of t h e sessio n .

Communication

1 2 3 4 5

1 2 3 4 5 Self: I don’t have any problems with this. Therapist: Occasion a l l y req u i red ex tra

t i m e to orga n i z e thoughts befo re sh a rin g i deas .

Communication pragmatics

1 2 3 4 5

1  2 3 4 5 Self: Therapists wrote comments on my

professional behavior logs, but I thought I did well. Therapist: So m e cha l l en ges wi t h ov ersh a rin g an d do m ina t in g discussions .

Following directions

1 2 3 4 5

1 2 3 4 5 Self: Most of the time, I did well; I needed some

help with complicated steps.

Therapist: So m e h e l p n ee ded fo r n e w an d co m p l e x ins t ruc tions .

Teamwork

1 2 3 4 5

1 2 3 4 5 Self: I tried to work well with my team. Therapist: Go od effort i n b e in g a tea m pla ye r.

Use of compensations

1 2 3 4 5

1  2 3 4 5 Self: I used my checklist. Therapist: Cues n ee ded to us e a ru l e r

an d fo l lo w a l l s t eps o n t h e c hec klis t i n ord e r.

Memory for routine tasks

1 2 3 4 5

1 2 3 4 5 Self: I did well overall; once I forgot to record my

end of shift productivity.

Therapist: Lea rn ed wi t h prac ti c e, bu t s a w occasion a l forgetf u l n ess a w e e k lat e r.

Work pace

1 2 3 4 5

1 2 3 4 5 Self: I met my personal goals. Therapist: Kep t u p wi t h t h e a v erage

n u m b e r of c ards req u i red eac h s hift.

Accuracy/ quality of work

1 2 3 4 5

1  2 3 4 5 Self: Sometimes I had to redo my work. Therapist: Errors obs e rved wi t h att en tio n to deta i l w h e n cut t in g t h e c ards an d ri bbons .

FIGURE 5.10.  Completed Vocational Group Work Performance Scale. 195

196

Clinical Approaches and Techniques

DOG BISCUITS

The first step in this project is to identify a dog biscuit recipe. Survivors look online at various recipe websites and then present their choice to the group. Everyone is invited to “sell” the recipe through a 1- to 2-minute presentation of why his or her recipe is more delectable. Group members take notes on the various recipes and then vote to identify the three most appealing options. Next, a subset of patients goes to a local grocery store to purchase the ingredients for the three contenders. The dog treats are distributed to the entire CTN community and everyone is invited to conduct a “taste test” with their dogs and rank-order the preferences. The vocational group votes and chooses the best recipe based on factors such as the best taste, quality of the dough, and ease of baking. The production group are the bakers, spending four 90-minute sessions making the dog treats, focusing on teamwork, quality, and efficiency. Through clinician-­facilitated brainstorming, these patients decide on a name for the treats (e.g., “Funny Bones,” “Wag Bags,” “Good to the Bone,” “Bone-A-Fido,” “Barkalicious Biscuits,” and “Woofies”); how to package the goodies (how many each bag should contain); how many dog treats to produce; how much to charge per package; and to what organization to donate the proceeds. Those on the planning committee have higher-­order executive function responsibilities; specific tasks are delegated to them and they report back to the main group. Jobs include: • Making announcements in the daily milieu session about the taste test • Tallying the results of the taste test • Designing tags with the name of the dog biscuit and its list of ingredients • Creating signs for the table at the market • Generating a script to read to patrons at the farmers’ market • Performing quality control of the biscuits, namely, ensuring that they are not burnt, misshapen, or broken • Deciding how long the shifts should be at the market Everyone joins the packaging committee and spends one 90-minute session wrapping the treats. Prior to attending the market, participants rehearse the written sales script and how to use a cash register. On the day of the market, each survivor assists with taking inventory and selling items using the cash register. Appropriate communication pragmatics and work behaviors are closely monitored, and therapeutic guidance is provided. BOOKMARKS AND GREETING CARDS

The first step in this project is to identify inspirational quotes for the bookmarks. Each patient finds two examples and explains each’s personal connotation to his or her peers. Group participants vote on the submissions, and one person tallies the votes, selecting the top five quotes. The group collaborates on the packet designs. Next, members of the production group are assigned to create the bookmarks and cards, including cutting, folding, stamping, and sorting papers; hole punching; and cutting and tying ribbon. As a decision-­making



Treatment Groups for Functional Skills 197

exercise, patients choose the best color arrangements and determine how many holiday versus generic cards to craft. Clinicians ensure follow-­through with step-by-step procedural checklists, task modifications and compensations, and attention to detail, as would be expected in eventual competitive job settings (see Form 5.6 for a sample checklist). Others designated to be in the planning group ascertain: • How much to charge for the cards and bookmarks • How to construct cheaper combination packages • What to wear at the farmers’ market • Content of the written script • Transportation to the market • Shift schedule for market day • How to track the inventory and sales A specific appointee oversees quality control, including reviewing the condition of the products. At the wrap-up debriefing, participants routinely express considerable enthusiasm regarding the innovation and fellowship that have emerged with these prework projects.

LE S SO N S LE A R N E D 1. With medical oversight, interdisciplinary and transdisciplinary interventions for functional capabilities in a group format are vital components of holistic milieu neurorehabilitation. They promote self-­awareness, social connections through peer exchanges, and prospects to generalize competencies and compensations to everyday life. 2. Physical groups in the form of aquatic therapy, adaptive tai chi, and yoga target physical domains using imaginative techniques that nicely lend themselves to healthy community applications. A cooking group fosters practical skills for the home in a collegial atmosphere, which is a building block for higher-­level community aspirations. 3. Event planning and newsletter groups are language-­based opportunities to assist patients in self-­reflection about their neurorecovery and achievements and express appreciation to their tiers of support. 4. Community outings and vocational groups are structured steppingstones to a future defined as increased mastery, productivity, meaning, and quality of life.

FORM 5.1

Cooking Group Goals Name:   Date:      Meal Planning Skills † Locating a recipe using personal choices, computer, recipe book, apps † Note-taking † Communication pragmatics (e.g., teamwork, initiation, active involvement):      † Decision making † Leadership † Other:      Grocery Shopping † Visual perceptual skills (e.g., inattention, field cut):      † Speed of processing † Following a written list † Use of strategies (e.g., price comparison) † Using apps † Checking out † Safety in the parking lot † Time management † Overall assistance level for shopping:      † Other:      Cooking Task † Adaptive equipment (list specific items):      † Compensations:      † Recipe modifications needed:      † Physical components (e.g., standing tolerance, balance, endurance) (specify):      † Upper extremity goals:      † Endurance † Vision/visuoperception † Communication pragmatics † Speed of processing/task execution † Organization † Multitasking † Time management † Safety awareness † Other:      From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

198

FORM 5.2

Presentation Homework Name:   Date:      Complete these questions following the [Name]

[Name]

presentation. Turn them in to

before or during the milieu session on

[Date]

.

1. List three facts you learned from the presentation.

2. What did you like best about the presentation?

3. Name three ways the information you heard in the presentation relates to your recovery.

4. What are you going to do to show compassion this holiday season?

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

199

FORM 5.3

Leader’s Script for the Milieu Session Name:   Date:      I am the leader for this week’s community outing. We are going to: (location)   . My goal for this outing is:      and this relates to my home and community independence  /  school  /  work (circle one) because:   . I will now call on my fellow group members to announce their jobs and goals: Job

Goal/Relationship to Community Independence/School/Work

1.

2.

3.

4.

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

200

FORM 5.4

Community Outings Group Skills Log Name:   Date:      Skill Areas/Community Outing Job

Skills to Address

Preparedness and time management • Be ready to leave • Have and manage all necessary belongings • Plan enough time for activities Use of compensations • Refer to your datebook • Use assistive devices • Double-check your work Community safety • Judgment • Mobility • Attention Visual scanning • Of written material • In rooms • Outdoors • While crossing streets Mobility • Use assistive devices • Follow your physical therapist’s recommendations Communication pragmatics • Professional behavior • Appropriate interactions Communication • Listen carefully • Understand instructions • Communicate needs clearly Problem-solving/flexibility • Find solutions to problems • Think of alternative plans

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

201

FORM 5.5

Vocational Group Work Performance Scale Name:    Date:      Scale: 1 = unsatisfactory; 2 = needs improvement; 3 = appropriate for work; 4 = good;    5 = excellent A score of “3” is the MINIMUM level of performance acceptable for work. The overall goal is to achieve a score of “4” or “5” in each of the following areas. Performance Work Skill

Self

Timeliness

1 2 3 4 5

Therapist

Comments

1 2 3 4 5 Self: Therapist:

Communication 1 2 3 4 5

1 2 3 4 5 Self: Therapist:

Communication 1 2 3 4 5 pragmatics

1 2 3 4 5 Self:

Following directions

1 2 3 4 5

1 2 3 4 5 Self:

Teamwork

1 2 3 4 5

Therapist:

Therapist: 1 2 3 4 5 Self: Therapist:

Use of compensations

1 2 3 4 5

Memory for routine tasks

1 2 3 4 5

Work pace

1 2 3 4 5

1 2 3 4 5 Self: Therapist: 1 2 3 4 5 Self: Therapist: 1 2 3 4 5 Self: Therapist:

Accuracy/ quality of work

1 2 3 4 5

1 2 3 4 5 Self: Therapist:

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

202

FORM 5.6

Checklist for Ribbon Cards Name:  Step Procedure 1

Write the date.

2

Pick up one ribbon card packet from the “Ready for Ribbon” box.

3

Pick up one coordinating sheer ribbon spool, a ruler, and scissors from the supplies shelf.

4

At the work station, using the ruler and scissors, cut four 18-inch pieces of the sheer ribbon.

5

For each of the cards, tie the ribbon in a knot around the patterned side of the card.

6

Use scissors to trim the ribbon edges on an angle.

7

Put the finished cards in the “Ready to Be Stamped” box.

8

Put back the scissors and ribbon spool on the supplies shelf.

Date

Date

Date

Date

Date

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

203

6 Technological Advances in Post-Acute Neurorehabilitation with Maura Eileen Rhodes and Samuel Schaffer

This chapter’s focus is on the growth of technology in outpatient holistic neurorehabilitation.

First, we explain technologies, protocols, and principles to remediate physical impairments in the form of assessments, therapeutic interventions, and broader community applications. Second, we discuss the utilization of technology in holistic milieu settings to augment communication abilities, compensate for memory difficulties, and provide opportunities for restorative home-based activities. The substantial benefits of technology in furnishing tools and avenues to maximize brain injury survivors’ independence and participation in meaningful life undertakings are illustrated.

Post‑Acute Technology for Physical Impairments Motor problems after acquired brain injury (ABI) occur with lesions in the corticospinal system (Sathian et al., 2011; Winstein et al., 2016). Common physical deficits among survivors of ABI involve muscle strength, motor control, gait, balance, and functional disabilities (Centers for Disease Control and Prevention, 2015; Winstein et al., 2016). The capacity to move around safely and efficiently as well as manipulate and interact with objects in one’s environment is critical for home and community participation. In recent years, new technology has emerged in the neurorehabilitation field. Developers strive to devise novel ways to incorporate motor learning concepts to achieve better outcomes. Adjunctive technology categories for the treatment of physical limitations include robotics, virtual reality, video games, sensor technology, and functional electrical stimulation (FES) (Byl et al., 2013; Chang, Saul, & Volpe, 2019; Morone et al., 2019). However, 204



Technological Advances in Post-Acute Neurorehabilitation 205

to date, outcome research comparing technology to conventional approaches has mixed findings due to small sample sizes and heterogeneous intervention protocols (Bonanno, De Luca, De Nunzio, Quartarone, & Calabrò, 2022; Demeco et al., 2023; Everard et al., 2022; Jakob et al., 2018; Louie & Eng, 2016; Mehrholz et al., 2017; Sharififar, Shuster, & Bishop, 2018). Moreover, clinicians’ dearth of knowledge regarding new technologies, lack of access, and a paucity of studies testing technology in the clinical situation for which they are intended have resulted in difficulty translating rehabilitation technology into clinical practice. Nevertheless, future investigations will be essential to elucidate efficacy (Hughes et al., 2014). Practical challenges in implementing technology into post-acute neurorehabilitation include tracking new options as they emerge and deciding what to purchase. As certain devices can be quite expensive, choices should maximize consumption for the largest number of consumers. Consider developing assistive technology (AT) committees using a variety of specialties, including physiatrists, physical, occupational, speech therapists, and neuropsychologists/rehabilitation psychologists, who are committed to exploring new ideas and providing opinions to administrative decision makers, followed by purchasing, participating in tutorials, and expanding the use of new products. “Technology expos” in hospitals or professional venues are handy for showcasing and demonstrating products as well as for educational updates. It is imperative to provide enough formal training to operate technology for treating physical impairments; providers need to be competent and confident about the advantages of new equipment. Depending on the device, instruction can range from a few hours to several days and can be completed on site, remotely through video conferencing, via online learning models, or some combination thereof. Proficient clinicians should mentor others to widen deployment. For those who may not be technologically savvy, periodic in-­services and refresher coaching are vital. What follows is a description of how we incorporate technology to advance the goals of the participants at the CTN related to gait, balance, upper extremity function, and visual skills. For other resources, see Byl et al. (2013), Chang et al. (2019), and Gentry, Andelin, Capps, Damaio, and Lent (2022) for guiding principles, classifications, screening, and decision making regarding integrating technology into neurological rehabilitation.

CTN Case Example General Overview and Goals The Decision‑Making Process for Recommending Technologies for Physical Impairments

At the CTN, deciding if a patient has the potential to be taught and benefit from neurorehabilitation technology, as supplemental or a replacement for standard therapies and/or assistive devices, is predicated on a detailed understanding of his or her injury sequelae and everyday limitations, his or her explicit objectives, and a solid grasp of each technology’s capabilities and shortcomings. A thorough evaluation is required to determine anatomical, physiological, motor, sensory, and cognitive deficits, including:

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Clinical Approaches and Techniques

• Standardized tests for strength, range of motion, sensation, muscle tone, motor coordination, posture, and postural control • Observation of gait and other functional mobility activities such as transfers and negotiating stairs or other obstacles, based on movement quality and specific deviations • Task-­oriented assessments and review of goals for activities of daily living (ADLs) and other elements of home and community independence, including recreational and work pursuits Interdisciplinary Input

Physical and occupational therapists take the lead in assessing and implementing technology to tackle physical impairments. Nonetheless, intercommunication with pertinent doctors (e.g., physiatrists) and other disciplines is crucial, as test results and clinical observations from speech therapists and neuropsychologists/rehabilitation psychologists provide valuable insights regarding a patient’s capacity to benefit from technology. A holistic analysis is essential, given that some cognitive and/or language difficulties will prevent safe and effective device utilization outside of the clinic. For example, severe executive dysfunction and/or aphasia hamper the incorporation of complex video games and FES devices at home because of their in-depth procedures for set-up and operation. In these cases, strong family involvement is a prerequisite. Additionally, emotional, attitudinal, and social factors like low motivation, depression, increased dependency on others, lack of commitment to learning, and misgivings about computerized or advanced technology all adversely affect rehabilitative technology; hence, interdisciplinary interventions become even more critical.

Structure and Process Each category of technology has certain considerations for screening as well as indications and contraindications for use. Detailed instructions on selecting a device are beyond the scope of this chapter; instead, the decision-­making process for integrating technology into a survivor’s CTN treatment plan will be proffered. A representative example of technologies to address physical deficits resulting from ABI is found in Table 6.1. Of note, it must be determined if resources are available, as new technologies can be quite expensive, and most are not consistently being covered by insurance or other thirdparty payers. The costs must be weighed against the potential advantages to determine the ideal allocation. Some manufacturers, particularly if the device is costly, have client advocates who interface with the insurance company or other third-party payers to gather necessary documentation and push for financial approval.

Protocol Assessment Technologies

Integration of various types of sensors into neurorehabilitation instruments enables easier and thorough data collection. Some devices are employed specifically for testing purposes and provide more detailed information compared to traditional tests that rely exclusively



Technological Advances in Post-Acute Neurorehabilitation 207

TABLE 6.1.  Technology for Physical Impairments after Acquired Brain Injury Technology to Address Impairments in Mobility Products

Description and features

Biodex Gait Trainer

• Treadmill that records step length, step speed, and gait symmetry. • Provides audio cueing and visual feedback using a touchscreen display. • Prints out a visual report of walking performance.

Aretech Zero G

• Robotic body-weight support system. • Provides dynamic body-weight support for walking overground, functional activities, balance, and fall prevention training.

Motek C-Mill

• Instrumented body-weight support treadmill with assessments and training for gait and balance. • Uses virtual and augmented reality for audio-visual cues and feedback.

AlterG Treadmill

• Antigravity treadmill that uses a pressurized air chamber to reduce body weight when walking or running. • Displays gait analysis in real time with video feedback.

Bioness L300

• Wearable assistive device that uses functional electrical stimulation (FES) and 3D motion detection. • Activates muscles at specific times during the gait cycle. • Improves safety with walking by decreasing foot drop and improves stability in the affected lower extremity, while allowing the ankle to adjust to varying terrains.

Restorative Therapies Xcite

• Multichannel FES system with a variety of programmed movement patterns. • Provides task-specific massed practice of the lower extremity, and core exercises to strengthen and re-educate muscles.

Restorative Therapies RT300

• Multichannel FES system for strengthening muscles of the arms, legs, and core. • Electrical stimulation is administered to selected muscle groups to perform a cycling motion with either the arms or legs.

EKSO Exoskeleton

• Wearable robotic exoskeleton. • Used for overground walking with support for the trunk and assisted movement of the lower extremities.

General benefits and functional applications for technology to address impairments in mobility: • Strengthens, re-educates, and increases range of motion in the muscles needed for walking, transfers, and bed mobility. • Reduces the need for caregiver support with mobility in the home (e.g., getting in and out of bed, stepping over objects, standing up from a chair). • Increases walking speed to be able to keep up with family or peers when walking, crossing streets safely, completing activities in the community efficiently (e.g., grocery shopping, work tasks). • Reduces the risk for falling when walking in the community. • Improves endurance to be able to walk longer distances and durations (e.g., walking to a grocery store or walking during a work shift). • Return to running, hiking, or other recreational activities. (continued)

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TABLE 6.1. (continued) Technology to Address Impairments in Balance Products

Description and features

Q-pads

• Portable pressure-sensing pads with a multicolored LED light display to indicate force amount and force position on the surface. • Gives patients visual feedback during weight-shifting and balance activities. • Random color and reaction settings can provide dual-task challenges for gait and balance activities.

Bertec CDP/IVR

• Interactive balance system with tilting force plate and moving visual surroundings for assessment and training of balance control. • Immersive virtual environments for balance and vestibular training.

Tyromotion Tymo

• Video game–based system with a portable balance board for balance assessments and training. • Activities and equipment included for seated or standing balance, balance on a firm surface, foam, and rocker boards.

General benefits and functional applications for technology to address impairments in balance: • Reduces the risk of falling. • Reduces dizziness and/or motion sensitivity. • Improves strength in the legs and core muscles. • Improves confidence when walking in complex environments (e.g., crowded mall, city streets). • Improves the ability to recover from a loss of balance if pushed or after tripping. • Improves the ability to reach for objects that are farther away (e.g., on a high shelf). • Increases options for transportation to/from work (e.g., commuter train, cycling, bus, etc.). • Increases opportunities for recreational activities (e.g., walking at a park or the beach). Technology to Address Impairments in Upper Extremity Function Products

Description and features

Bioness H200

• A wearable FES device to stimulate muscles in the hand and forearm. • Wireless system to strengthen and re-educate muscles for reaching, grasping, opening, and closing.

Fourier M2

• End-effector upper extremity robot with a video game interface. • Collects and tracks user performance with movement trajectories, range of motion, and muscle strength. • Different modes for passive, active-assisted, active, and resisted movements.

Rapael Smart Glove

• Sensor-based wearable glove for measuring and practicing movements of the forearm, wrist, and digits. • Patients practice movements with a video game–based interface.

Restorative Therapies Xcite

• Multichannel FES system with a variety of programmed movement patterns. • Provides task-specific massed practice of hand, upper extremity, and core exercises to strengthen and re-educate muscles.

Restorative Therapies RT300

• Multichannel FES system for strengthening muscles of the arms and core. • Electrical stimulation is administered to selected muscle groups to perform a cycling motion with the arms. (continued)



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TABLE 6.1. (continued) Technology to Address Impairments in Upper Extremity Function  (continued) Products

Description and features

Tyromotion Myro

• Sensor-based touchscreen surface with adjustable height and angle. • Uses manipulation of real objects for on-screen games and activities. • Variety of touch settings to train gross- and fine-motor skills and hand– eye coordination.

Tyromotion Pablo

• Gaming-based system with wearable motion sensors to work on active movement and motor control of the hand, arm, and trunk. • Includes assessments for upper extremity range of motion, grip and pinch strength, and gait analysis.

Jaco Robotic Arm

• Assistive robotic arm that mounts to a power chair. • Gives the user the ability to perform upper extremity tasks with a joystick control.

General benefits and functional applications for technology to address impairments in upper extremity function: • Strengthens, re-educates, improves range of motion in muscles needed for upper extremity tasks. • Improves independence and reduces the need for caregiver assistance with activities of daily living (ADLs) (e.g., putting on clothes, feeding, grooming). • Improves the ability to carry objects with both arms (e.g., personal bags). • Improves the ability to perform skilled work-related tasks (e.g., handling money or bagging groceries). Technology to Address Impairments in Visual Scanning and Motor Reactions Products

Description and features

Bioness Integrated Therapy System (BITS)

• Touchscreen system with a variety of therapy programs for oculomotor, motor control, and cognitive training.

SmartFit

• Heavy-duty panel with impact-sensing light-up targets. • Suitable for touching, striking, and throwing objects at targets. • Programmable visual tracking and cognitive activities for motor-cognitive dual-tasking interventions.

Blazepods

• Portable light-up pods with a variety of sequences. • Provide data on repetitions, reaction time, and accuracy.

Microsoft HoloLens

• Commercially available augmented-reality/mixed-reality headset. • Merges the user’s real-world environment with computer-generated images.

Meta Oculus

• Commercially available virtual-reality headset. • Downloadable games utilizing hand controllers and head movements to play and interact with a fully immersive virtual environment.

General benefits and functional applications for technology to address impairments in visual scanning and motor reactions: • Improves visual perception, visual scanning, and motor reactions. • Improves visual skills required for the return to driving. • Improves safety in community environments (e.g., identifying crossing signals, seeing a cyclist riding by). • Improves hand–eye coordination for returning to sports or other recreational activities. • Increases the challenge of balancing or other motor tasks by adding a secondary cognitive/visual activity.

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on therapists’ observations. Other tools constantly collect measurements during treatment, supplying evidence for progress within or between sessions, providing instant feedback on performance, and improving the quality of documentation of services. All interventions complement and supplement clinical impressions and are never a sole replacement for the clinician’s acumen. During CTN evaluations, computerized posturography identifies sensory and motor impairments related to balance and postural control. Motion sensors are used with gait assessments such as the 10-Meter Walk Test (American Physical Therapy Association [apta. org]; Shirley Ryan AbilityLab [sralab.org]), thereby giving explicit data on walking speed, cadence, foot clearance, joint angles, and other spatiotemporal gait measurements. Similar measures can be extracted using force-­sensing treadmills or walkways. Visual scanning and motor reaction evaluations are conducted using computerized touchscreen devices that track the speed and accuracy of motor responses to visual stimuli. Furthermore, wearable activity trackers provide information about the baseline physical activity level. These are better than solely self-­report that can overestimate the actual amount of physical activity (Hagströmer, Oja, & Sjöström, 2007). Practically, this information pinpoints ways to increase survivors’ physical endeavors. Technologies to Enhance Therapeutic Interventions

At CTN, we incorporate technology to remedy physical problems with the following three considerations: 1.  Motor rehabilitation principles. Dosing and intensity are two well-known variables contributing to motor recovery after stroke (Bertani et al., 2017). Several new technologies utilizing robotic components or electrical stimulation to assist in movements provide the advantage of task-­specific, high-­intensity, and highly repetitive treatments (Babaiasl, Mahdioun, Jaryani, & Yazdani, 2015; Bertani et al., 2017; Chang et al., 2019; Takeda, Tanino, & Miyasaka, 2017; see Sun et al., 2018, for a review). In addition, other ingredients are essential for improving outcomes, including motivation, autonomy, and expectations for future accomplishments (Wulf & Lewthwaite, 2016). The features of integrated video games, audio/visual feedback, and virtual environments boost the “fun factor,” enhance learner self-­reliance, engender an external focus of attention for the practiced movement or task, facilitate increased engagement for greater repetitions, and yield future positive expectancies through adjustable levels of difficulty, goals, and rewards (Everard et al., 2022; Morone et al., 2019). For instance, compared to a standard weight-­shifting activity where the patient is merely given internally focused cues (e.g., “shift your weight forward as far as you can”), Tyromotion’s balance games link the patient’s weight-­shifting movements with the movement of an object or character in a video game (e.g., tilting a virtual surface to roll a ball toward a target). 2.  Reduced therapist burden. Technology lessens physical wear and tear on treating providers. Newer iterations of body weight support systems allow a user to easily modify the amount of body weight support when a patient is doing gait and basic balance tasks



Technological Advances in Post-Acute Neurorehabilitation 211

overground or on a treadmill. Other applications are support during high-­intensity aerobic exercise and high-level balance tasks, as well as reducing body weight for high-­impact pursuits like running. Robotic exoskeletons help patients execute functional movements instead of the clinician supporting them. This frees the clinician to observe and employ skilled interventions to improve the quality of movements and progress the activities appropriately. Lower extremity exoskeletons enable repetitive practice of overground gait for those trying to expand their walking independence. The amount of assistance provided by the device is adjusted based on the participant’s needs. Since the therapist does not have to manually assist limb progression, he or she can concentrate on positioning, as well as core stabilization and facilitation. 3.  Ease of use. Wireless technology for gait and balance training, and neuromuscular re-­education, allows survivors and clinicians to move around unencumbered. Enhanced user interfaces, accessed through tablets and familiar computer operating systems, enable treatment parameters to be seamlessly updated. Advanced computer programming has produced robotic exoskeletons that simulate human movement, electrical stimulation platforms that sequentially stimulate multiple muscle groups to contract in order to perform a practical task or movement, and gamified platforms to easily add an external focus or cognitive challenge to a physical task (Byl et al., 2013; Jakob et al., 2018; Morone et al., 2019). Integrating Technologies into Patient Care

At the CTN, once the best technological device is chosen, a treatment plan is devised, starting with set-up during the first session. Generally, there are distinct procedures for fitting and donning the wearable components as well as establishing initial parameters, characterized by the type, amount, and timing of assistance. After the initial set-up, the consumer is given time to acclimate to the device in a low-­complexity situation, such as with external support available, a self-­selected pace, and flat surface. During the training phase, the optimal intervention frequency, duration, and intensity are identified so as to maximize gains, while also taking into account the survivor’s activity tolerance, requirements of other therapies, and his or her long-term ambitions for community reintegration. Session length is chosen based on set-up times and can range from 45 minutes for quick start exercises (e.g., video game–based balance activities using the Tyromotion therapy board) to 60 minutes for more complex mechanisms in the form of exoskeleton gait training devices or multichannel FES devices given that they take up to 10 minutes to don. Based on the participants’ “real-life” objectives, stages of progression are then delineated, for example, to: • Increase walking speed on the treadmill or diminish body weight assistance to improve overground gait speed. • Decrease the amount of assistance provided by an upper extremity robotic to improve shoulder strength and the ability to perform upper extremity tasks against gravity.

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• Increase the game difficulty level with a balance board video game to improve reaction time, limits of stability, or postural control. • Raise the number of hours spent wearing a FES gait device to build endurance for transition to full-time utilization at home and in the community. The CTN structure promotes the transition of devices beyond physical therapy. Case in point, after several coaching sessions using the Bioness Foot Drop System, the patient can walk to different places in the clinic or incorporate it in the community outings group. This facilitates increased time and repetition in a variety of more complex environments, for instance, walking and talking with numerous people in the unit hallways, negotiating obstacles in a crowded lunchroom, using the restroom, or walking on uneven terrain, while maintaining the safety net of clinicians if there are any device issues or adverse events. Opportunities for less structured practice advance independence and provide valuable information regarding what hurdles could be encountered as a device is transitioned to the home and community. Of note, implementation of these technologies requires a plan for transition, including medical input, that is congruent with the patient’s overall goals. The emphasis will be a transfer to a less restrictive device, namely, transitioning from walking with an exoskeleton to ambulating with a Bioness following improvements in strength, balance, and endurance, or moving to execute the desired endeavor on his or her own. Technologies for the Home

Advanced technologies also ameliorate physical inabilities in the “real world,” namely, safety, self-­sufficiency, or efficiency with mobility and day-to-day responsibilities. As an illustration, someone who presents with foot drop may profit from a wearable FES device that incorporates electrical stimulation to contract the muscles that lift the foot during gait on a variety of terrains. When the device is for the home and community, the survivor must have the cognitive and/or physical abilities to safely set up and operate it autonomously, without risking harm to him- or herself or anyone else. The protocol is to shift from supervision by the physical and/or occupational therapists during therapies to self-­reliance, including donning, doffing, maintenance, adjustment of settings, and problem-­solving potential technical issues. If this is not possible, caregiver education is a must. This encompasses guidance and practice with the patient and relevant helpers in the clinic, as well as in the home, community, and/or workplace so as to reinforce success with complex technology for the long haul. Future Directions: Virtual Reality

A variety of advantages have been reported for virtual reality interventions, at the structure/ impairment level as well as for home and community participation (Massetti et al., 2018). Much of the current research involves exercise-­based games to address deficits, such as balance, upper extremity function, and fine-motor control. In addition to the traditional exercise-­based games, virtual reality applications within a holistic program include simulation of home, work, and/or community locales. There is a potential for patients to be guided



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to do activities and jobs in virtual environments that are safer, more cost-­effective, and easier to repeat in order to enrich home independence, community reintegration, and return to competitive employment. Examples include daily chores like grocery shopping or food preparation, work duties involving scanning or restocking items on shelves, and community pastimes when safely navigating busy situations like a mall or city street.

Post‑Acute Technology for Cognition and Language: Augmentative and Alternative Communication Aphasia affects approximately one-third of stroke survivors, negatively impacting communication and leading to poor quality of life (National Aphasia Association, n.d.; Russo et al., 2017). Dysarthria, while its exact incidence and prevalence are unknown, alters speech intelligibility (American Speech-­Language-­Hearing Association, n.d.-b) and the ability to communicate. Patients deserve innovative methods to enhance their ability to communicate. Augmentative and alternative communication (AAC) refers to the way we communicate without speaking. Unaided AAC includes gestures, facial expressions, and body language. Aided AAC is the expression of feelings, ideas, and thoughts using devices and tools. It can be broken down into basic and high-­technology systems (American Speech-­Language-­Hearing Association, n.d.-a). In the past 30 years, the field of AAC has made remarkable technological advances. The wider availability of AAC apps and mobile technologies has broadened accessibility and affordability (Light et al., 2019). Interventions to improve the survivor’s communication should include both restorative and compensatory AAC techniques (Russo et al., 2017). High-tech AAC supports on dedicated devices, personal tablet computers, and mobile devices, like smartphones, are beneficial for enhancing communication in those with poststroke aphasia and other communication problems such as dysarthria (Light et al., 2019; see Russo et al., 2017, for a review). Moreover, access has also been expanded through eye and head tracking technologies. Describing the field as well as the multitude of AAC devices and tools is beyond the scope of this chapter. See the American Speech–­Language–­Hearing Association (ASHA) website, Practice Portal, Evidence Maps, and Special Interest Group (SIG) 12, for in-depth information and current research related to AAC. This chapter will focus only on compensatory techniques, specifically high-tech AAC systems for adults with aphasia and dysarthria, involved in holistic milieu neurorehabilitation.

Implementing AAC at the CTN General Overview and Goals Why Is AAC Important?

AAC is a compensation that facilitates greater independence through improved capacity to communicate across many places, including home, social situations, school, or work. Furthermore, it allows patients to better self-­advocate in all settings.

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The Decision‑Making Process for Recommending Appropriate AAC

Which high-tech AAC device and software are optimum depends on the patient’s communication strengths, limitations, and needs, as well as cognitive and physical capabilities. The user’s preferences must also be considered. Those with complicated communication demands (especially complex motor difficulties) necessitate an interdisciplinary team approach, physician ideas, as well as suggestions and assessments by external clinicians with advanced instruction or knowledge in AAC and/or AT experts (Gentry et al., 2022). Questions to be answered include whether or not their AT requirements could be met by using existing accessibility features on mobile devices or tablets, if an AAC app on a tablet or phone would suffice, or if the survivor requires durable medical equipment in the form of a dedicated speech-­generating device (SGD). Other criteria are what the preferred access method is and if the consumer will want AT for other noncommunication purposes, such as using environmental controls, mobility, or for general computer access, like using voice, eye gaze, head pointer, or switch controls. See Table 6.2 for a list of examples of AAC devices and programs that have been incorporated at the CTN. This table includes symbol-­ based systems in which users rely on symbols (often paired with words) to represent objects, actions, emotions, and so on, as well as text- and alphabet-­based systems, where a patient employs traditional spelling and rate enhancement techniques like word prediction to formulate messages (American Speech-­Language-­Hearing Association, n.d.-a). Given the emphasis on the final stages of community integration as well as a wealth of opportunities to communicate in functional and treatment group contexts, the first suggestion for AAC and AT is often made while at the CTN. Patients who do not necessarily require an alternative communication method (e.g., those who are able to state basic wants, needs, and thoughts in select contexts) still often benefit from high-tech AAC tools

TABLE 6.2.  Examples of Augmentative and Alternative Communication Technology Purpose

Language representation method

Speech generating

Symbol-based system

Format

Examples

Dedicated device with apps

• Lingraphica • Tobii Dynavox Snap Core First • PRC-Saltillo NovaChat with WordPower

App (tablet and phone)

• PRC-Saltillo TouchChat with WordPower • Proloquo2Go • Talk TabletPRO

Dedicated device with apps

• Tobii Dynavox Communicator 5

App (tablet and phone)

• Prolquo4Text

Speech-generating writing formulation

App (tablet)

• iWordQ Pro

Writing formulation

Computer program

• WordQ Desktop

Text-based system



Technological Advances in Post-Acute Neurorehabilitation 215

that augment their communication. Case in point, survivors with aphasia who can express thoughts and ideas at the basic sentence level or those with dysarthria may use the iWordQ Pro app to communicate in group therapies or in a milieu atmosphere. This improves verbal expression through oral reading of scripted messages and gives the choice to play (“say it, then play it”), or play and then repeat the message through the app’s text-to-­speech function. This app also allows those who may not need a dedicated SGD an option of “speaking” words as they type or select them from word prediction choices. The iWordQ Pro app or WordQ Desktop computer software is good for survivors struggling with written expression, secondary to the advanced word prediction and speech feedback features. Dragon speech recognition software also provides written communication opportunities for those with written language or motor difficulties that inhibit writing and typing. In addition to written communication purposes, these programs offer users support for daytime undertakings, including making grocery lists and filling out online applications. Similar to the iOS Voice Control feature, Dragon also provides users with the capability to control their computer via voice commands, which can be beneficial for survivors who can generate clear verbal commands but have motor disabilities that limit their computer access through traditional methods. At the CTN, participants with moderate to severe dysarthria are often introduced to AT to improve their ability to communicate beyond one-on-one interactions. The Proloquo4Text app may meet the needs of a patient who can easily handle a tablet or smartphone or desires a highly mobile device. In contrast, a dedicated SGD such as Tobii Dynavox I-­Series devices with the Communicator 5 app can help those with more complex motor challenges or who wish for something with a speaker suitable for communicating in noisy environments.

Structure and Process When to Initiate AAC

An AAC strategy should be implemented at the time a communication deficiency is evident and once the requisite evaluations are completed and practical objectives for community reintegration are identified. Time will have to be taken to educate patients and their support networks on the relative benefits, as often there is an internal struggle regarding “relying” on external devices. Physician guidance and partnering with the psychotherapist is helpful to build trust and confidence in using AAC.

Protocol At CTN, participants’ communication needs, strengths, and challenges are assessed by a speech therapist, with input from their support system. AAC supports should be introduced and developed in the early treatment phase. For those already using AAC tools when they present to the CTN, the effectiveness of these is evaluated in terms of the patient’s current status and level of participation in the home and community and the aspirations they want to achieve.

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Having access to the technology for trialing with the consumer is key when examining AT programs and devices. For technology that the CTN does not possess, we borrow them from external entities. See the Association of Assistive Technology Act Programs (ATAP) website (www.ataporg.org) for a list of state Assistive Technology Act Programs, which provide free device loans and instruction, funded under the Assistive Technology Act (AT Act). For more straightforward situations, speech therapists present the technology and create opportunities to use it in the clinic, making purchase recommendations based on the benefits and patient/family buy-in. Once a need for a dedicated AAC is established, patients and caregivers meet with sales consultants from two to three different companies, in order to learn about and trial dedicated AAC devices and programs. These consultations should be scheduled either at the clinic or at the home for real-life applications; however, having the speech therapist present to guide the exploration is imperative. Once the hand-­picked AT device or program is pinpointed, survivors participate in an AAC evaluation with a speech therapist. Purchasing information is provided in writing to survivors and their family members, following which recommendations are submitted to the insurance carrier for coverage. Providing opportunities for patients to utilize their AAC systems outside of the one-onone therapy session is vital. For example, CTN’s structured and predictable groups, such as daily milieu sessions, allow contributions that can be scripted and/or programmed ahead of time; these are excellent ways to aid participants in becoming more comfortable with and adept at using AAC supports. From there, objectives can be established to have them incorporate their AAC in other group therapies (e.g., aphasia or memory compensations groups), on community outings, while making phone calls, in job interviews, and the like. Speech therapists facilitate the use of AAC in all communication contexts and train the rest of the treatment team. Family/caregiver training to program, modify, and use the AAC in different communication contexts is crucial for carryover and long-term utilization of these communication tools. Post‑Acute Technology for Cognition and Language: Electronic Memory Compensations

External memory aids are valuable for memory and planning impairments following ABI and include alarms, calendars, planners, notebooks, and smartphones (Dowds et al., 2011; Eberle, Bergquist, & Kingsley, 2022; Klonoff, 2010; O’Neill, Best, & Jamieson, 2020; Velikonja et al., 2023). They increase the social network, completion of ADLs, facilitate goal setting and self-­monitoring one’s progress, and reduce reliance on caregivers (­Charters, ­Gillett, & Simpson, 2015; Eberle, Berquist, & Kingsley, 2022; Sohlberg et al., 2023). External memory aids store large amounts of information for and about the patient, ameliorating the necessity for seeking information from multiple sources or helpers (Charters et al., 2015; Wang, Ding, Teodorski, Mahajan, & Cooper, 2016). Usage of three or more memory tools is associated with greater self-­sufficiency when living alone, working, and caring for others (Evans, Wilson, Needham, & Brentnall, 2003). With the ongoing development of AT and technology in general, the choices for electronic external memory aids are expanding in versatility and affordability (Eberle, Bergquist, & Kingsley, 2022; Gentry et al., 2022;



Technological Advances in Post-Acute Neurorehabilitation 217

Ownsworth et al., 2023; Sohlberg et al., 2023). Please refer to Table 6.3 for more examples of external memory compensations. When investigating the advantages of paper versus electronic memory systems, preliminary research has found that visual/auditory electronic alerts enhance independence with task completion (Bos, Babbage, & Leathem, 2017; Charters et al., 2015; DePompei et al., 2008; Dowds et al., 2011; Jamieson et al., 2019; Lannin et al., 2014; Velikonja et al., 2023). Alarms and alerts are effective for cueing when caregivers are inputting the information; therefore, it is advisable to identify who will be responsible for this and choose a device accordingly. Variables that best predict use of electronic memory strategies include age (95; standard score range = 55–145

Bioness Integrated Therapy System (BITS) assessments: a.  Trail Making Test b.  Maze Test c.  Bells Cancellation Test d.  Visual Scan and Motor Reaction

• Visual scanning • Visual pursuit • Cognitive (e.g., memory, math) • Visual motor • Reading charts, letters, numbers Target scores for a, b, and c: Duration and number of errors (less than 1.5 min with less than 3 errors per trial) Target scores for d: Reaction time = # hits/60 sec. Goal is at least 50, 40, 30, and 195 hits in the consecutive four trials in this test.

Map activity

• Reading • Visual scanning • Estimating and knowing distances • Understanding basic topographical features • Spatial reasoning • Understanding relationships between symbols, pictures, objects, and distance Target scores: Independent using paper maps or navigation systems

Community pathfinding assessment

• Awareness of environment/surroundings • Visual scanning • Judgment • Safety awareness • Navigation Target scores: Independent getting from point A to point B safely

Useful Field of View (UFOV) Test

• Central vision loss and cognitive processing speed • Divided attention • Selective attention • Speed of visual processing under increasingly complex task demands Target score: 1 = very low crash risk; Range = 5-point rating scale from very low to very high crash risk

Rookwood Driving Battery

• Visual perception • Praxis skills • Cultural or symbolic movement • Sequencing (motor actions) • Executive functioning • Sorting • Comprehension Target score: 10 is considered a fail and corresponds to 90% chance of failing an on-road test.

Predriving interventions

Skills and target scores

Cognitive retraining tasks

• Visual scanning • Visual perception • Processing speed • Memory Target scores: Performance in the average range relative to peers with ABI; 0–1 error per session on error logs (continued)

240

TABLE 7.2. (continued) Predriving interventions

Skills and target scores

BITS treatment: a. single target b. complex array c. smooth pursuit d. rotator e. memory f. rhythm g. geoboards h. draw i. letter charts j. peripheral letter charts

• Visuomotor coordination • Scanning • Reaction time • Peripheral awareness • Visual tracking • Motor skill planning • Cognitive skills • Working memory • Visual/auditory processing • Impulsivity • Timing • Visual spatial perception • Motor coordination • Attention • Visual search Target scores: Demonstrate improving scores over multiple trials related to speed and accuracy

Community pathfinding training

• Awareness of environment/surroundings • Visual scanning • Judgment • Safety awareness • Navigation Target scores: Independent getting from point A to point B safely

Driving simulators (e.g., STISIM Drive, S3000 Driving)

• Visual scanning/visual perception • Safety awareness • Processing speed • Attention/divided attention • Sequencing • Impulsivity • Reaction time • Executive functioning (planning) • Memory • Navigation • Vehicle control • Fatigue Target scores: Demonstrate the ability to complete each drive with minimal to no difficulties

Road sign recognition (e.g., www.usa-trafficsigns.com)

• Assess recognition of various signs the patient may encounter while driving • Visual memory • Processing speed Target score: 85% or higher

AZ MVD Practice Test (www.azdot.gov, http:// driversprep.com)

• Following directions • Knowledge of basic safe driving principles • Visual memory Target score: 80% or higher to pass the exam

241

242

Transfer of Skills

neuro-­opticians. Although all skill sets are important, mitigators for driving are moderate to severe deficits (scores less than the 10th percentile) in speed of information processing, multitasking, attention, and visuoperceptual abilities; as well as behavioral characteristics of poor judgment, impulse control, frustration tolerance, and self-­regulation; and mood instability. As part of psychoeducation, all data are shared with the survivor and family members at the completion of the evaluation phase, which ordinarily occurs within 3 weeks. If it is deemed that the participant is not ready to undertake the return to driving procedure, specific recommendations are made, like postponing the reassessment of driving for 6–12 months. In the interim, other transportation alternatives are explored. Realistic paratransit possibilities, such as ADA public transportation, are identified and implemented by occupational therapists (Womack & Silverstein, 2012). Psychotherapists, physiatrists, and psychiatrists must assist with the psychological adjustment to using alternatives to driving, given the understandable chagrin in the patient and relatives. Common topics in individual and group psychotherapy are feelings of grief, loss, disappointment, and resentment regarding losing driving privileges; the “acceptance crisis” followed by practical and psychological coping strategies, including brainstorming about viable transportation alternatives; and social consciousness for public safety (see Chapter 4, Figure 4.12; Klonoff, 2010). If a consensus is reached that the survivor needs additional treatment to tackle foundational skills for driving readiness, the interdisciplinary team rallies to incorporate intensive interventions aimed to improve performance, using both remediation and compensatory techniques. Generally, this lasts 2–3 months. Figure 7.1 is a flowchart of the return to driving process overseen by the occupational therapist. Table 7.2 also describes driving readiness interventions mostly performed by occupational therapists and target scores. Likewise, patients participate in cognitive retraining tasks germane to driving, for instance, matching shapes; block building; letter, number, and symbol scanning in organized and disorganized patterns; pattern recognition; and rapid visual attention (see Chapter 3 for more information about cognitive retraining; see also Klonoff et al., 2010). Some survivors with significant vision/visuoperceptual deficits undergo tandem vision therapy with a community neuro-­ optometrist. A strong adjunct tool for driving preparation is driving simulators that provide ecologically valid objective and standardized data in a safe setting (Imhoff, Lavallière, Teasdale, & Fait, 2016; Merickel & Rizzo, 2022). At the CTN, we employ STISIM Drive (https://­ stisimdrive.com), which is a virtual-­reality driving simulator experience overseen by occupational therapists. They choose the type(s) of instruction, number of drives, and their difficulty, based on the individualized needs of each patient and his or her performance patterns both on predriving assessments and on practice driving simulations. This venue also ascertains the likelihood of unsafe driving habits (e.g., use of cell phones, speeding, insufficient physical space between vehicles, and lack of signal indicators to forewarn other drivers) and enables remediation (Dickerson & Niewoehner, 2012). Driving skills include reaction time, memory, planning, vehicle control, divided attention, navigation, passing, turning, merging, and hazard perception.



Transfer of Skills to Home, Community, and Work 243 Patient consults with occupational therapist to discuss driving, including state requirements.

Patient participates in clinic pre-driving interventions.

CTN therapists agree that patient is ready to be assessed for driving.

A physician order is requested for a driving evaluation on streets and highways. Vision clearance may also be required.

Patient participates in an adaptive driving evaluation.

Driving evaluation passed.

NO

Lessons may be recommended. NO

YES

YES YES Certificate of Completion submitted to the MVD.

Lessons successfully completed with or without restrictions.

Medical examination report delivered to the physician.

The physician signs the report.

Signed report is sent to the Medical Review Board at MVD.

NO Reevaluation recommended after 6 months or when appropriate.

Patient receives a letter stating that he/she is cleared to drive with or without restrictions or needs to come in to the MVD office.

FIGURE 7.1.  Process to return to driving.

Reevaluation recommended after 6 months or when appropriate.

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Transfer of Skills

Driving readiness and reinstatement also encompasses: • Ongoing formal measures and observations from the treating team from structured and unstructured group therapies, including lunchtime, milieu sessions, cognitive retraining, and psychoeducational group • Proficiency with the use of compensations • Safety awareness and good judgment in home and community functioning • Helping the patient create a script and make phone calls to a driving rehabilitation company to set up an appointment for adaptive driving evaluation and training • Forwarding neuropsychological and occupational therapy predriving testing results, background history, and clinical impressions to the certified driving rehabilitation specialist/adaptive driving program • Acting as a liaison between the survivor, support network, treatment team, physician(s), and driving rehabilitation program regarding medical prescriptions and releases, the examination, as well as potential requirements for and status of driving lessons • Reviewing findings from an adaptive driving evaluation and assisting the patient and family in understanding findings and recommendations, and coordinating acquisition of vehicle modifications and assistive devices such as hand controls or a spinner knob • Aiding the patient in completing all final steps with the Department of Motor Vehicles so as to resume driving   In Samuel’s case, he achieved target scores on some predriving assessments (Bioness Integrated Therapy System [BITS], Useful Field of View, and the Rookwood Driving Battery), but he required practice with cognitive retraining exercises, additional BITS exercises, community pathfinding, and the STISIM driving simulator to bolster his reaction time, directionality, and overall visuoperceptual prowess. He earnestly followed the necessary protocol coordinated by his occupational therapist and treating physicians. With his wife’s blessing, Samuel took a community-­based adaptive driving examination. He required 6 hours of lessons, partly due to his “rustiness” in following the rules of the road, but also to ensure safety while driving his children related to challenges with awareness of pedestrians in busy areas, stopping distances, merging, and lane changes. After paperwork was processed by the Motor Vehicle Division, his driving privileges were reinstated with a restriction to avoid highway and nighttime driving.

Post‑Acute Neurorehabilitation and Parenting After an ABI, childrearing can be affected due to the direct impact on cognitive, communication, emotional, behavioral, and/or physical domains (Cavallo & Kay, 2011; Ducharme, Davidson, & Rushford, 2002; Uysal, Hibbard, Robillard, Pappadopulous, & Jaffe, 1998). In addition, indirect effects of the brain injury on patterns of family life, through the course of hospitalization and rehabilitation, can also change parenting relationships (Cavallo & Kay, 2011; Charles, Butera-­Prinzi, & Perlesz, 2007; Elbaum, 2019a; Kieffer-­Kristensen &



Transfer of Skills to Home, Community, and Work 245

Teasdale, 2011). These culminate in upheaval in both the immediate and extended family. Klonoff (2014) provides a detailed review of the consequences of brain injury on relatives and their children, as well as adjustment interventions. Support with parent–­child relationships, both for those with brain injuries and their partners, is essential to the neurorehabilitation process. The next section will concentrate on the holistic milieu approach to parenting after ABI.

Addressing Parenting Skills at the CTN General Overview and Goals Childrearing is a meaningful life goal for many parents with disabilities (Cureton, 2017) and therefore a primary activity of daily living (ADL). Addressing parenting skills after ABI is typically part of the Home Independence Program. The duration of interventions varies, based on sociodemographic and brain injury factors as well as personalized family goals, but may span a few months. After ABI, CTN therapists strive to respect parents’ dignity of choice and invite an alliance to promote success. Everyone brings a mixture of talents and struggles when raising children, and the objective is to enable patients to be as engaged and capable as possible. This translates to helping rebalance marital relationships whereby the injured spouse has a vital role in the family system. See Bowen, Yeates, and Palmer (2018) and Klonoff (2010, 2014) for more discussion about the multidimensional effects of brain injury on marital relationships, including intimacy, and proposed interventions. Care is taken to use holistic methods when addressing physical, cognitive, communication, emotional, behavioral, and functional aspects of parenting, in collaboration with interdisciplinary therapists, physicians, a partner or co-­parent, extended family, and potentially nannies or other hired caregivers. In our setting, we prioritize active treatment of the adults using self and collateral reports, together with therapists’ observations in the program and at home. Our center does not have the manpower and expertise to provide direct counseling to survivors’ children or custody recommendations. Thus, proper boundaries insofar as expectations and know-how are set, and external referrals are provided as needed.

Structure and Process Effective Parenting at the CTN

The following guidelines support effective interventions for parenting after brain injury: 1. Therapists are observers and mediators. Interdisciplinary clinicians collaborate closely with the patient, main relatives (specifically the spouse), and treating physicians. Analysis occurs during home visits and in the clinic, predicated on a fluid and evolving process defined by headway versus drawbacks. Patients and spouses are informed that treating physicians are ultimately responsible for medical decisions and restrictions. 2. All protocols are personalized based on neurological injuries; anticipated recovery trajectory; learning style; functional status; cognitive, communication, and emotional

246

Transfer of Skills

sequelae; physical limitations; cultural factors; gender identity; preexisting caregiver roles; current family dynamics; age of the child(ren); available supports; resources; and the objectives of the survivor and household. 3.  Therapists should follow the natural interests of the survivors and their children when selecting activities rather than impose their own preferences. A menu of eclectic, age-­appropriate options should be generated across physical, academic, social, and practical domains as these nicely further recovery, competency, and self-­esteem. 4.  Regular and ongoing input and instruction of other tiers of support are vital, including parents, grandparents, siblings, and anyone else directly involved in caregiving of the patient and the children. After moderate to severe brain injuries, generally at least one supportive person is trained in the role of a co-­parent. Structured checklists, such as a co-­ parenting Home Independence Checklist (HIC), are indispensable for cueing and monitoring the patient. Checklists are discussed later in this section. 5.  A formalized, stepwise approach should be adopted for skill building and compensation implementation, starting with simpler tasks like feeding, dressing, sleep habits and moving to more complicated arenas, namely, reaching developmental milestones for behavior and activities; and disciplinary techniques. The plan is predicated on successes, with sufficient repetition to ensure mastery. 6.  The safety and the children’s well-being are always prioritized, especially for survivors left alone with their children. Risk is minimized through check-ins from other relatives using technology, and a list of dos and don’ts when they are alone with their children. 7.  Therapists keep parenting goals focused, realistic, and time-­limited. With medical input, they share the estimated amount of time as well as the nature and extent of services from the outset of care and at regular intervals, usually monthly. Guidance is direct and timely regarding major barriers, while providing other workable alternatives. 8.  Interventions for child discipline involve close collaboration and ingenuity across disciplines. A psychologist can supply emotional regulation and coping skills for the parent with an ABI, facilitate patient and household education on prominent issues, and seek out community resources to optimize childrearing, so the survivor and co-­parent can choose the right system for their values and needs. A speech therapist aids with instituting phrases for praise and delivery of feedback. An occupational therapist sets up a structure for daily routines and planning times for special one-on-one interactions between parents and their children. A recreational therapist may support the patient by improvising and decorating a sticker chart for a reward arrangement for younger children. As appropriate, clinicians seek out assistive technology and/or adaptive equipment that can support engagement in childcare responsibilities, depending on the survivor’s communicative, physical, and cognitive abilities (see Chapter 6 for more information). 9.  Milieu and community resources are utilized. Invaluable adjuncts to one-on-one interventions are co-­treatment with other survivors who are parents, to exchange ideas and strategies: books on child development, parenting classes, mothers’/fathers’ play groups, church activities, and other learning opportunities. National resources such as Through the Looking Glass (www.lookingglass.org), local Centers for Independent Living



Transfer of Skills to Home, Community, and Work 247

(https://acl.gov), and publications by the National Council on Disability (http://ncd.gov/­ publications; e.g., Rocking the Cradle: Ensuring the Rights of Parents with Disabilities and Their Children, Disabled Parents Toolkit), are some examples.

Protocols Following in-­clinic assessments across the disciplines of neuropsychology; physical, occupational, speech, and recreational therapies; and psychiatry, the team first reflects on how the patient’s strengths and neurological challenges impact child care. Realms include physical aspects, vision/visuoperceptual abilities, expressive and receptive language, communication pragmatics, memory, attention, and all executive functions. These are used as a starting point for treatment; however, actual childrearing skills must be assessed directly through holistic observations predominantly in natural environments, rather than making assumptions concerning capabilities based solely on test scores. With the consent of the patient and his or her caregiver, the occupational therapist schedules a home visit within the first few weeks of admission; this was also the case for Samuel. Others join this visit if deemed helpful for a holistic interdisciplinary overview. For example, a psychologist monitors the survivor’s frustration tolerance and problem-­solving capacity and considers skill-­building avenues for positive reinforcement and constructive discipline. A physical therapist co-­assesses how he or she fares with balance and coordination during play and sports in and outside of the home. A speech therapist participates when there are impairments that affect parent–­child communication. A recreational therapist weighs in with age-­appropriate games and leisure pursuits that the family unit can engage in while also practicing worthwhile adaptations and compensations. Table 7.3 provides utilitarian examples of childrearing skills pertinent to physical, sensory, cognitive, communication, and social/emotional arenas. Advice depends on the age of the children, and the nature and severity of the ABI. School-­aged and older children may be brought to the clinic for brief education about the parent’s neurological condition and prognosis, and/or to participate in some training including communication strategies and quality-­of-life family activities. Figure 7.2 is a flowchart showing the collaborative and stepby-step progression in working with the participant, a co-­parent, clinicians, and physician(s); it articulates the advancement of responsibilities based on proficiency, generalization of principles, and fine-­tuning of metacognition and executive functions. Both of these “lay of the land” handouts were reviewed with Samuel, Amelia, and Amelia’s parents as part of the psychoeducation process. Form 7.1 includes two versions of generic parenting rating scales to be filled out by the patient and co-­parent and then discussed with the team, particularly the psychotherapist, occupational and speech therapists, and other medical providers, as needed. This should individualize the domains and be completed at regular intervals (weekly) by the patient using self-­ratings, the primary caregiver or co-­parent, and, if warranted, key therapist(s) to delineate aspects of growth and remaining obstacles requiring greater attention. Note, it is imperative to obtain ratings from both parties to give each an equitable voice and viewpoint. Figure 7.3 (p. 250) is an example of Samuel’s and Amelia’s ratings and their explanations completed partway through his neurorehabilitation. The areas of concordance and

248

Transfer of Skills TABLE 7.3.  Examples of Skills Associated with Parenting across Therapy Domains Strength, proprioception, and coordination • Changing diapers • Bathing a young child • Lifting or carrying a child • Helping a young child get dressed • Preparing and cooking food • Feeding an infant or toddler • Holding on to a child when crossing the street • Washing dishes • Laundry • Making children’s beds • Tidying up and sorting toys or clothing Visual and cognitive skills • Remembering routines and responsibilities, especially those that are time-sensitive (e.g., child medications, school and sports’ schedules, doctor appointments) • Tracking care routines for children (e.g., diaper changes, feeding schedules) • Monitoring the safety of a child in all arenas, including the bathtub, the pool, and in the community • Noticing and attending to safety hazards in and outside of the home • Creating and imposing proper structure • Initiating and following through with morning and bedtime routines • Shopping for recurring household items related to children (e.g., shampoo, craft supplies) • Anticipating and planning for needs related to outgrown clothing and seasonal changes • Tracking and planning children’s social activities (e.g., a friend’s birthday party) • Meal planning (e.g., school lunches, dinner, snacks) • Organizing clothing, toys, and items • Managing a chore list for children • Planning ahead to anticipate a child’s needs in a given situation • Flexibility, judgment, and problem solving in response to unexpected and complex events • Multitasking, especially with >1 child and/or multiple distractors Language and communication pragmatics • Understanding what the child is saying • Explaining rules and routines • Reading to a child • Assisting with homework/supplemental home education • Using appropriate language, tone, and body language when conversing and providing directions Social and emotional skills • Suitable affect perception and expression • Empathy, eye contact, and other social behaviors to facilitate bonding • Properly responsive and patient when a child is acting out • Knowing how and when to comfort an upset child • Aligning the right level of discipline for the child’s behavior • Avoiding unhealthy interactions/reactions, also when disciplining the child (e.g., raised voice, insults) • Controlling anxiety, impatience, irritability, angry outbursts, and overall emotional distress when interacting with the child



Transfer of Skills to Home, Community, and Work 249

discrepancy enabled in-depth dialogue vis-à-vis partnership in childrearing skills and is an excellent mutual awareness, acceptance, and realism tool. (A colorized version of Figure 7.3 is available at the companion website for this book.) Unsupervised Time with Children

Upon admission to the CTN, the survivor’s current level of unsupervised time, as well as any alone time with children, is ascertained. He or she and a collateral (typically, a co-­parent or other relative) each provide their perspective to the clinicians regarding interactions with children, specifically safety considerations. Guidance is also solicited straightaway from treating physicians in writing with identified restrictions. Identify areas of strength and challenge relevant to parenting (e.g., memory, impulse control, judgment) based on test findings. Interview patient and family to understand their views of the patient’s parenting capabilities historically and presently and their goals.

Identify co-parent and supports in the family to assist with parenting, if needed.

Assess parenting skills directly in interactions with the child present (in clinic and/or at home) and in simulated activities in the clinic.

Start with activities in the clinic and then transfer into the home and community settings.

Therapists assist with behavioral rehearsal, skill building, and developing and using compensations utilizing scaffolding techniques.

Include the co-parent and/or other tiers of support in education and compensation training. Elicit and incorporate collateral feedback.

Monitor if the patient is successful carrying out specific parenting tasks with compensations. YES

NO

Provide additional training, support, and practice. Revise compensations as needed.

Continue with a stepwise progression of parenting responsibilities and independence with input and medical clearance from the physician(s), patient, family, and therapists.

FIGURE 7.2.  Flowchart to address parenting after a brain injury.

250

Transfer of Skills

Date:  5/3/21   Completed by:  Amelia (spouse) and Samuel     1. Judgment/safety awareness

Good

Room for Improvement

Amelia: No safety problems were seen; he was observant while the children were at the playground and brought plenty of snacks and water. Samuel: I’m doing better with this, especially when we go into the community. 2. Consistency

Good

Room for Improvement

Amelia: I noticed that Samuel gave in after Sofia kept crying about not getting an extra cookie, despite our agreement to limit these to one after dinner. Samuel: I didn’t notice any problems in this area. 3. Planning

Good

Room for Improvement

Amelia: Good grocery planning and healthy choices for the children with minimal input from me. Samuel: I’m using my menu planning and shopping checklists better.

4. Communication (with spouse and children)

Good

Room for Improvement

Amelia: Good communication about the sports practice for Oscar, but forgot to discuss online toy purchases with me. Samuel: I felt I kept up with all necessary communication this past week. 5. Impulse control

Good

Room for Improvement

Amelia: Samuel is doing well at thinking before he speaks and acts, especially when disciplining the girls. Samuel: I’m really trying to “look before I leap” and use Amelia as a sounding board.

6. Multitasking

Good

Room for Improvement

Amelia: When Samuel was tired after a long day, he had trouble keeping an eye on our children while cooking dinner. On a positive note, he asked me for assistance! Samuel: I’m still struggling with this, especially when it is hectic and I’m tired. 7. Realistic self-appraisal

Good

Room for Improvement

Amelia: Samuel was able to discuss what went well this week and what was challenging, which is a nice improvement. I think he’s ready for more unsupervised time and duties with the children. Samuel: I realize “things take time” and that I’ll need lots more practice. I hope I can spend more alone time with the kids though.

FIGURE 7.3.  Parenting Rating Scale completed by both Samuel and Amelia.



Transfer of Skills to Home, Community, and Work 251

A pivotal determinant of unsupervised time is the patient’s understanding of how to respond to various safety scenarios (e.g., what would you do if your son began choking?). Data from cognitive and emotional interventions unearth underlying vulnerabilities in memory, judgment, problem solving, impulsivity, initiation, frustration tolerance, and emotional instability or distress and inform goal setting, followed by role playing and other treatments. Stepwise increases in unsupervised time are always with say-so from physicians, the team, the survivor, and caregiver(s). Normally, there are tiered levels of clearance for unsupervised time alone without children present (starting with up to 4 hours) versus time with children but no other adults present (starting with up to 2 hours). The latter can be further separated into time alone with older children as opposed to younger children, also based on how many children are present at one time. Each category is advanced separately, based on the survivor’s readiness. Written guidelines for dos and don’ts are useful (see Table 7.4 for ideas and Samuel’s version). For example, he or she might use the stove or bathe children only when another adult is present as divided attention and memory concerns exist. Form 7.2 contains sample step-by-step criteria for unsupervised time with children, based on the concordance of self-­ratings with co-­parent ratings; Figure 7.4 shows a customized set-up for Samuel. This allows reflection about awareness of strengths and weaknesses, coping and compensation skills, and functional capabilities. Checklists

Challenges with memory, attention to detail, and a host of executive function deficits, namely, organization, sequencing, and prioritization, lend themselves well to everyday procedural checklists. Examples are a list of everything required prior to leaving the house, like a diaper bag checklist, morning checklists to remind the child to get ready for school, feeding schedules, meal planning, after-­school checklists (e.g., checking the child’s backpack belongings, packing lunch for the next day), chore schedules, and bedtime routines (see Samuel’s sample checklists in Figure 7.5). These are devised collaboratively with the patient, with input from his or her occupational therapist, psychotherapist, family, and

TABLE 7.4.  Samuel’s Dos and Don’ts during Unsupervised Time with the Children Dos

Don’ts

• Call 911 if there is an emergency. • Check my datebook for tasks relevant to the children. • Add all appointments to my datebook related to the children. • Use the microwave or prepare simple cold meals for the children. • Complete items on my checklists that pertain to the children. • Choose a family activity from the list we developed (e.g., reading, coloring). • Record notes in my datebook under the “daily notes” section about what happened with the children. • Call my spouse/in-laws if I am not sure what to do or have questions.

• Bathe the children when alone. • Leave the home. • Drive. • Use the pool without supervision. • Use the stove or oven. • Multitask (e.g., try to attend to the children and do other home activities). • Carry large or heavy items (e.g., lifting the toddler). • Open the door for strangers.

252

Transfer of Skills

Stay at current level until the following criteria are met (for a minimum of 2 weeks): 1. Accurate self-assessment: • Able to identify areas of strength and difficulty that Amelia, her parents, and Samuel’s speech and occupational therapists observe. • Samuel’s and Amelia’s weekend rating scale disagree only by one number. 2. Meal planning: • Recipes are planned based on everyone’s schedule. • Healthy food choices are made. • Grocery list is created. 3. Meal preparation is completed smoothly: • All steps are followed in the correct order. • All steps are completed accurately. • No safety issues arise. 4. There is harmony at home: • Amelia and her parents are treated kindly when giving constructive feedback. • No one feels as if they are “walking on eggshells.” • There is “give and take” in relationships. 5. Better communication/tag teaming with the spouse: • Amelia is aware of Samuel’s schedule because he shows it to her at the biweekly family milieu meeting. 6. More consistency: • Samuel and Amelia score 8 or above in all areas on rating scales. • Special attention is given to one-on-one time with Alicia and Sofia. Current level: Dinner

3 nights/week

Laundry, one load/day

2 days/week

Prepare lunch for all three children.

5 days/week

Clean and maintain adult bathroom and bedroom one time/week.

Sunday

Clean and maintain kids’ bathroom three times/week.

Monday, Wednesday, Friday

Unsupervised time with Oscar

7.5 hours/week

Unsupervised time with all three children

1.5 hour/Sunday 45 minutes every day

FIGURE 7.4.  Samuel’s Plan for Increasing Unsupervised Time with Children.

253

Transfer of Skills to Home, Community, and Work Park Checklist with Three Children

Kids

Date:

Alicia

Sofia

Oscar

SAMUEL

extra clothes

diapers

cup

Load diaper bag:

sanitizer

band aids

snacks

tissues

wipes

phone

Water bottles Use bathroom before leaving Sun hats Snacks Sunscreen Sippy cup for Alicia Blanket for Alicia

keys Take garage door opener Take diaper bag

Bath Schedule Checklist for Two Children Bath Schedule Date:

Start time:

End time:

(continued)

FIGURE 7.5. Samuel’s sample parenting checklists.

254

TRANSFER oF SkILLS Task

Alicia

Sofia

Put clean PJs and underwear in bathroom Put dirty clothes in laundry Wash hair Rinse hair Wash bodies Take kids out of tub Dry off Put PJs on Wipe up bathroom floor Put towels in laundry room

Pre-School/School Lunch Checklist for Two Children

Sofia Sandwiches

mustard, meat, cheese

Fruit Vegetable Granola bar/fruit strip Drink Fun note Double-check

FIGURE 7.5. (continued)

Date:

Oscar mayonnaise, meat, cheese



Transfer of Skills to Home, Community, and Work 255

personal assistant (if needed). The survivor then practices the “do it, mark it” technique (Klonoff, 2010). Phone alarms cue him or her to complete checklists. Instituting tandem, age-­appropriate chore checklists for children normalizes checklists and cultivates healthy teamwork. Having children use “smiley faces” or stickers instead of checkmarks when completing items is a lighthearted alternative. Weekly family milieu meetings foster planning, entering of datebook memory assignments, reprinting of checklist templates, discussion of family business and group checklist follow-­through, provision of practical feedback, and affirmation of areas of progress (Klonoff, 2010, 2014). (See Chapters 8 and 9 related to family milieu meetings.) Activities

Activities that engage patients and their children are inherently therapeutic. For instance, participants with fine-motor limitations benefit from playing with blocks or puzzles with their children. A survivor with alexia can try reading orally to his or her young child. Cooking and baking are excellent for remediating sequencing, multitasking, and teamwork difficulties. Fun interests that the survivor excels at (mastery) should be counterbalanced with endeavors that tackle deficiencies. A good rule of thumb is the 80/20 rule, with 80% of choices that are strength-­based and 20% that remediate problems, taking into account that the task is not unduly frustrating for the survivor and the children enjoy it as a pastime. Scheduling weekly opportunities for socialization during family milieu meetings is advisable; one patient termed this “Sunday Funday” (A. Ippel, personal communication, September 16, 2020). Table 7.5 provides examples of how childrearing arenas and strategies can be tailored to the age of the child. Appendix 7.1 on the book’s companion website illustrates a sample family activity schedule for a parent of a younger school-­age child, a schedule that Samuel successfully used. The Role of the Co‑Parent

Collaboration with a co-­parent enables the loved one to gradually expand his or her childrearing responsibilities, ensuring safety at each step and expediting generalization of compensations to the home and community. This can be a spouse, unmarried parent to the patient’s child(ren), other relatives, close friend, nanny, and/or a personal assistant; multiple tiers of support are ideal (Kirshbaum, 2000; Klonoff, 2014). The co-­parent(s) should be identified early during neurorehabilitation and may already have assumed primary care for the child(ren). They should receive guidance in the clinic and all real-world environments. Consistency with structure, communication, and expectations across all parties will promote stability and minimize risk of splitting behaviors. Form 7.3 and Amelia’s completed version of it in Figure 7.6 illustrate co-­parenting checklists that delineate tasks to oversee. Later in the process, the extent of outside backup diminishes yet remains available in the long term, as needed. In this way, the assistant’s role transitions from the “frontline” to the “sideline.” Venues include periodic conjoint psychotherapy sessions; engaging in regular family milieu meetings; sending weekly updates to the participant’s spouse and/or collaborating therapists; monitoring the use of tools like checklists and the datebook; noticing

256

Transfer of Skills

TABLE 7.5.  Tailoring Parenting Strategies Based on the Age of the Child Child’s age

Activities

Sample compensations

3 years and under

Infant and toddler care

Apps to track feedings and diaper changes Physical accommodations or adaptive equipment as needed for baby-care activities and playtime Nanny or co-parent to help the patient obtain adequate sleep

Read parenting books.

Take notes on key content and review with a co-parent.

Reading to the child

Audiobooks to supplement physical books (e.g., for patients with aphasia)

Family leisure activities (neighborhood walks, games, etc.)

Develop a list of activities the patient and family can do together.

Help with managing child’s routines (homework, chores, schedule).

Age-appropriate checklists for child’s chores (e.g., make lunch, make bed) Develop a family activity schedule.

Transportation to and from school and other activities

Identify alternate transportation if a patient cannot drive.

Family meals

Rotate meal schedule, preset grocery lists, grocery store apps. Prepackaged foods, adaptive equipment (e.g., adaptive cutting board for hemiparesis) Assign roles for meal preparation based on ability.

Age-appropriate understanding of the patient’s brain injury and compensations

Patient, co-parent, and therapist can provide psychoeducation to older children.

Help with managing adolescent’s routines (homework, chores, schedule).

Checklists for chores, before-school, and after-school activities Datebook to track planned activities (e.g., baseball practice, sleepover) Family milieu meetings

Monitoring social media applications and phone use

Monitoring apps

Managing transportation and learning to drive

Apps to monitor GPS location (if desired) and activities outside the home Driving school and/or assistance from a co-parent if not able to coach driving

Dating and friendships

Reading for education on appropriate guidelines for supervision and curfews Enlist support of a co-parent if concerns about judgment.

4–12 years

13–17 years



Transfer of Skills to Home, Community, and Work 257 Mon. Tues. Wed. Thurs. Fri. Sat. Sun. 5/3/21 5/4/21 5/5/21 5/6/21 5/7/21 5/8/21 5/9/21

Tasks Make sure Samuel   has enough procedural checklists in his binder.



Review weekly and monthly schedules; look daily for any changes.



Cue as needed to maintain data on the app for Alicia   (diaper changes, naps, baths, etc.).



Review daily schedule and checklists for completion.

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Check if Samuel   had one-on-one time with each child.

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Check schedules to make sure Samuel   is not overscheduled.

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Watch for overload; this could be due to dehydration, meal skipping, visual clutter, too many distractions, children seeking attention or being demanding.

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Provide regular downtime or breaks.

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FIGURE 7.6.  Amelia’s Co-­Parenting Checklist.

struggles with attention to detail, consistency, “slippage,” and follow-­through; aiding with troubleshooting childrearing and scheduling dilemmas; and providing ideas on modifying or discontinuing specific checklists over time. Overall, the aim is the survivor’s maximum self-­sufficiency and reclamation of this purposeful role with the proper safety nets. Psychotherapy and Parenting after the ABI

Reintegration into parenting roles requires holistic psychotherapy. In the case of Samuel, he and his wife, as well as her parents, were avid participants in individual and family psychotherapy. His family regularly availed themselves of the weekly family group, which gradually buttressed their psychological health and nicely honed their coping skills. The experience of others “replacing” the patient as pseudo-­parents can catalyze intense feelings of grief, depression, anxiety, guilt, or resentment, particularly when he or she lacks awareness of the extent of postinjury sequelae and/or underestimates the need for external supports.

258

Transfer of Skills

The psychotherapist should be attentive to catastrophic reactions (CRs) when the survivor feels overwhelmed or overstimulated and/or communication pragmatic gaffes, for instance, poor perspective taking or bluntness. CRs may manifest as minimizing deficits, defensive “Yeah, buts” in response to well-­meaning advice, and/or blaming others, which may further negatively impact the patient’s parenting abilities, including providing constructive discipline. Collateral psychiatric treatment is important for ameliorating worrisome emotional and behavioral sequelae. Empathic support is paramount for the patient’s and spouse’s coping with the shattering of the assumptive world (Janoff-­Bulman, 1992) regarding hopes and anticipations as parents. The psychotherapist must proffer a “wait and see” but optimistic stance about reattainment of vital parenting capabilities. Children’s stories such as The Carrot Seed (Krauss, 1990) and Oh, the Places You’ll Go! (Seuss, 2013) reinforce the saliency of collective faith and inner belief. An invaluable by-­product of reconstituting parenting skills is the reverberation into the overall attunement, interconnectedness, and equity in the marriage, as for Samuel and Amelia. Psychoeducation should concentrate on increasing the survivor’s self-­awareness and acceptance of the implications of the ABI on all elements of childrearing, predicated on collaborative evidentiary techniques and patience, trust, and collaboration (Klonoff, 2010). Other integral facets are (Klonoff, 2010, 2014): • Coping with existential grief (why me?) and stuck or chronic grief • Accepting the gray zone of a subset of duties versus the all-or-­nothing stance • Building confidence and proficiency, while recognizing the ill effects of inconsistencies and compensation drift • Developing an observing ego • Self-­monitoring defensiveness and emotionality • Embracing advisory board supports • Addressing cognitive distortions • Promoting perspective taking and mindfulness • Focusing on the process versus the outcome • Supplemental readings on active listening as well as age-­appropriate discipline methods and overall expectations Concomitant education and support for the co-­parent and tiers of support can be gained through individual and conjoint psychotherapy sessions as well as a family group (see Chapter 9 for more information; see also Klonoff, 2010, 2014). Prominent topics are adapting to role changes, episodic grief, recognizing and coping with CRs by proxy, and clarifying any befuddlements pertaining to the patient’s problems, interventions, and prognosis. Psychoeducation underscores what symptoms are organic versus mood-­related versus effort (“will vs. skill”); coping strategies (e.g., not personalizing feedback, picking battles, de-­escalating situations, scheduling date nights); reinforcing a sense of partnership (“United we stand, divided we fall”); and ideas for personal/family growth and reconstitution (Klonoff 2014, 2022). Recorded teaching videos, readings, and/or supplemental parenting courses for tips are useful adjuncts. Sufficient self-care, respite, and foresight to minimize caregiver exhaustion and “wear and tear” are preeminent. Referrals for outside counseling for adult relatives



Transfer of Skills to Home, Community, and Work 259

as well as children should be prioritized. Given the young age of Samuel and Amelia’s children, a community pediatric counselor with expertise in cultural factors was recommended. Due to the fortified working relationship with Samuel and Amelia with solid tiers of support, he regained a robust position as a parent whereby the marriage and family life flourished.

Post‑Acute Neurorehabilitation for the Return‑to‑Work Process A hallmark of an optimum recovery from ABI is the survivor’s reemergence of productivity in the community; its value cannot be overstated as a social determinant of health (­Tsaousides, 2016; see Wong et al., 2019, for a review). Estimates vary but are sobering in that a sizable number do not resume employment, while others revert from full- to part-time status (for reviews, see Walsh et al., 2014; Wong et al., 2019). Benefits of working include improved sense of psychological well-being, renewed identity, mitigation of social isolation, life satisfaction, financial and health benefits improvements, and enhanced community integration and quality of life (Klonoff, 2010; Mateer et al., 2022; see also Tsaousides, 2016, and Tyerman et al., 2017, for reviews). This can range from volunteer work and supported “place and train” positions, to part- or full-time competitive employment (Klonoff, 2010; Tsaousides, 2016). Competitive employment means that patients are compensated for their job at or above the set minimum wage and not less than how much nondisabled people are paid for doing the same tasks (Krainski, 2013). Fortunately, the Workforce Innovation and Opportunity Act of 2014 opened additional avenues for employment of individuals with ABI (Avellone & Wehman, 2022). Studies reveal a complex interplay of premorbid characteristics, injury-­based factors, and postinjury impairments (e.g., physical, vision, cognitive, language, and behavioral) as well as personal economic and environmental features as affecting postinjury employment (Avellone & Wehman 2022; Cook, 1990; Mateer et al., 2022; Sadek, 2022; for reviews, see Tsaousides, 2016, and Tyerman et al., 2017). Recently, less severe injuries, executive functions (e.g., task sequencing, inhibitory control), and psychosocial variables, including male gender, married, higher education, white collar occupations, better psychiatric health, and positive work history, have been linked to employment in survivors of ABI (Algethamy, 2020; Howe et al., 2018; Wong et al., 2019). Post-acute models that restore employment include comprehensive holistic programs, case coordination, work readiness training with embedded job experiences, and supported employment (Tyerman et al., 2017; see Tsaousides, 2016, for a review). Data are gathered from neuropsychological evaluations, physical work capacity evaluations, and vocational testing using clinical interviews and questionnaires, for example, the Strong Interest Inventory (SII; Hansen, 2000), the Functional Assessment Inventory (FAI; Crewe & ­Athelstan, 1981), and the Work Personality Profile (Bolton & Roessler, 1986); see A ­ vellone and Wehman (2022) for other examples (Cook, 1990; Klonoff, 2010; Tsaousides, 2016; T ­ yerman et al., 2017). Experiential input in the form of situational assessments, work tolerance evaluations, assistive technology assessments, job shadowing, environmental evaluations, and work samples in simulated and/or real work settings is highly advisable so as to identify interests, aptitudes,

260

Transfer of Skills

and accommodations (Avellone & Wehman, 2022; Cook, 1990; Klonoff, 2010; Tsaousides, 2016; Tyerman et al., 2017). Other influences are the patient’s (Avellone & Wehman, 2022; Klonoff, 2010; Tyerman et al., 2017): • Work history • Current functional status • Social and behavioral presentation • Work attitude • Career guidance • Job matching • Job demands • Work adjustment • Work barriers • Training requirements • Advocacy needs • Reasonable accommodations • Assistive technology • Options for customized employment • Finances and disability status Treatment is a team approach, focusing on experiential learning and compensation training using voluntary work trials, job analysis and coaching, and on-the-job training (Klonoff, 2010; Tsaousides, 2016; Tyerman et al., 2017). Communication and education of employers and their feedback, also in writing, are emphasized (Klonoff, 2010; Wilson, Gracey, Malley, Bateman, & Evans, 2011). Holistic milieu models integrate work experiences, with a gradual shift to the job and phasing out of program-­based care (Klonoff, 2010; Wilson et al., 2011).

Interventions for Return to Competitive Employment at the CTN General Overview and Goals This portion of the chapter will address competitive employment only. Other CTN publications have described the philosophical, practical, and research considerations for return to work after ABI (Klonoff, 2010; Klonoff et al., 2000, 2003). Foundational prework skills are usually addressed through the CTN Transitional Program; the Work Re-Entry Program, the Fast-Track Program, and usually the Refresher Program prioritize the pathway to competitive employment. Based on medical necessity and the plan of care, survivors may be in the return-­to-work portion for up to 15 months, especially with severe sequelae of the ABI and if limited to no preinjury work history. The aim is an informed decision about the highest level of work achievable in the context of the nature and severity of the ABI, and especially the functional status (Klonoff et al., 1998). Patients are assisted in pinpointing a “right fit” position. This may not be the same job or with the level of responsibility they once held, as CTN investigations indicate that approximately 16–30% of participants resume the same



Transfer of Skills to Home, Community, and Work 261

level of work (or school) postinjury (Klonoff et al., 1998, 2007). Of note, Samuel could not resume his job as a pool cleaner as his seizure disorder and the effects of his TBI precluded outdoor work in extreme heat with balance and high-­stamina demands. Other overarching objectives are to enhance emotional and interpersonal capabilities that affect work conduct as well as emphasize meaning and feeling useful postinjury. This often necessitates a steppingstone style, beginning with entry-level employment to produce a positive feedback loop of mastery, self-­esteem, and success for the long haul (Klonoff, 2010).

Structure and Process Given the large census at CTN, a speech therapist functions as a vocational specialist whereby he or she coordinates multiple facets of the patients’ progression to situational assessments and competitive employment vis-à-vis educating patients and the support network about the work re-entry process, creating employer relationships, matching positions with interests/capabilities, interview practice, engineering job coaching schedules, and on-­ site coaching. Of note, liaising with our social worker at the outset is critical to unearth the financial consequences of competitive employment in the context of disability benefit status. The holistic model primes survivors to return to work using multidisciplinary individual and interdisciplinary/transdisciplinary group interventions with physiatry and other specialists’ input. For instance, the following cognitive retraining components are associated with better outcomes: (1) restorative and compensatory methods that improve information processing speed, memory, visual scanning, visuospatial skills, and language; (2) an educational insight-­oriented methodology of close collaboration between the clinician and participant to build awareness, acceptance, and realism; and (3) an emphasis on metacognition, efficient and organized task completion, and the ability to see the “big picture” connections to work (Klonoff et al., 2007; see also Chapter 3 and Klonoff, 2010, for more material on cognitive retraining). Even recreational therapy relates to competitive employment objectives. Samuel learned wood etching and made one with a religious theme for a niece having a quinceañera. First, he practiced in sessions and then transitioned this skill set to his home as leisure, for increased initiative and independence. He incorporated an array of strategies, all transferable to his job: a start-up checklist to organize his workspace; a project sheet for skills, supplies, and competitive employment carryover; a chart for session end times; a phone alarm for time management; his electronic datebook for follow-­through of memory assignments; and Google Drive on his iPad for note-­taking. Applicable prework behaviors were regularly discussed, including gains in fine-motor abilities, attention to detail, time management, and openness to suggestions and trying new pursuits. His fluctuations in note-­taking were underscored to avoid missteps at work. CTN research has found that injury chronicity does not impact productivity; whether participants enter holistic neurorehabilitation early or years after their ABI, they can look forward to a productive existence (Perumparaichallai et al., 2020). Samuel exemplified this principle, as he began the job search process 2.75 years post-TBI. The generalization of lots of compensations, namely, a datebook, procedural checklists, and note-­taking, bodes well for

262

Transfer of Skills

competitive employment up to 30 years postdischarge (see Chapter 10; Perumparaichallai et al., 2020). Critical preparation is a situational assessment, which is a therapist-­monitored volunteer position that captures strengths and challenges pertinent to cogent decision making about employment directions (Klonoff, 2010). Positive working alliances with patients and their families remain a central ingredient for optimal work outcomes, as does eagerness to become productive (Klonoff et al., 1998). Financial disincentives, like compensation seeking, can negatively impact motivation and employment outcomes; this must be considered before investing substantial resources in holistic neurorehabilitation (Klonoff et al., 1998).

Protocols Situational Assessments

The situational assessment is a fundamental step toward competitive employment and is instrumental in assessing transferable skills and ascertaining the patient’s readiness to assume the responsibilities of competitive employment (Klonoff, 2010). All elements stress work preparation and empower him or her to be as independent and effective as possible. This includes specific job duties, but more importantly, the formation of awareness, acceptance, and realism about work potential, limitations, and usefulness of compensations. Our program has two situational assessment locations: in-house at CTN or within the larger hospital affiliated with our center; and community-­based placements. The team is continually expanding potential community resources to create the most meaningful and valuable arrangements. Sometimes, an employer will allow the survivor to participate in work simulations that are unpaid in advance of resuming his or her competitive employment position. This can be a very worthwhile way to assess skills and plan treatment. Figure 7.7 lists some common situational assessment options in a variety of settings. Every attempt is made to link the locale and demands with the survivor’s job goals. For example, a future gym or therapy assistant might simulate analogous cleaning duties in our department or another outpatient rehabilitation environment. The survivor may shadow different positions to make an informed decision and boost buy-in. Samuel chose selling cards and bookmarks to practice his customer service skills and to bond with the milieu. Utilization of checklists is prioritized; see Figure 7.8 for a sample of the checklist Samuel used. As is interwoven within the holistic model, situational assessment coaches are selected based on the match between their expertise and the needs of the patient, vis-à-vis physical, functional, cognitive, language, behavioral, mood, and interpersonal considerations. Once a position is chosen, the patient and therapists follow a specific situational assessment checklist to be sure all steps are completed sequentially and accurately (see Figure 7.9). Family members and other third parties, including physicians and case managers, are kept abreast of every milestone with an open invitation for input. Typically, participants start with 1.5- to 2-hour shifts once or twice per week and they increase hours and duties incrementally. Ordinarily, this translates to adding 30–60 minutes every 2–3 weeks, until the patient is engaged for anywhere from 4 to 6 hours per week to up to 15 to 20. Monitoring is individualized, but starts as full-time for every shift and, over time, dissipates based on the competency and confidence of the survivor (Klonoff et al., 2000).



Transfer of Skills to Home, Community, and Work 263 At CTN • Helping to coordinate food and gift drives, including back-to-school supplies, Easter baskets, Thanksgiving and Christmas donations • Library organization and shelving books • Assisting with write-ups of therapists’ professional biographies to share with the milieu • Circulating a coffee cart during break time • Creating cards and bookmarks to sell in the lobby • Organizing and selling CTN T-shirts • Inventory checks in the kitchen and overall unit for supplies • Mock scheduling/phone calls using therapists as clients for receptionist positions • Assisting with copying and filing generic paperwork • Data entry (e.g., Excel lists of the song and color of the week from milieu sessions) • Creating and taking patient polls about topics of interest to enrich the milieu • Updating patient news on the unit whiteboards like the quote of the week and community activities for brain injury survivors • Putting together simple furniture (e.g., bookshelves) for patient use • Pseudo-technician duties: | Helping to take blood pressures, heart rates, and weights of therapists | Checking dates on fire extinguishers | Verifying charge levels of the automated external defibrillators | Tidying up the lobby | Checking and refilling water dispensers | Tallying and organizing dumbbells by weight in the physical and occupational therapy gyms Hospital Settings • Medical library • Information desks • Patient transportation • Publications department • Data entry and special projects: | Foundation (for donor-related projects, such as thank-you cards and phone calls) | Volunteer services | Human resources | Finance department | Marketing department | Other departments as needed • Technician assistant duties in an outpatient rehabilitation department • Arts and crafts with children at pediatric clinics • Packet making on hospital floors • Assisting in fall-risk assessments (by patients with a medical background) • Gift shop • Cafeteria • Mailroom • Central supplies department Community Settings • Animal shelters • Non-profit agencies • Cafés • Clothing shops • Gyms/Boys and Girls Clubs • Adaptive sports centers (continued)

FIGURE 7.7.  Situational assessment options.

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Transfer of Skills

• Food banks/distributors • Churches • Bakeries • Museums/science center • Concert venues • Libraries • Elementary and middle schools • After-school programs • Salons • Hospice settings

FIGURE 7.7.  (continued)

Date:

Date:

• Set a timer for     minutes before the end of your session to allow for cleanup. • Bring the cart to the lunchroom. • Put supplies on the cart: | Cash

box and calculator

| Cash

register with extension cord

| Announcement | Inventory | Clipboard | Cards,

signs

sheet (put your name and date at the top of the sheet) with a pencil

bookmarks, envelopes, bags

| Sanitizing

wipes, Windex wipes, gloves

• Take supplies to the lobby and arrange the display so it looks nice. • Ask the therapist to retrieve the bookmark tree from the supply closet in the lobby: | Refill

the bookmark tree as bookmarks are sold.

| Leave

bookmarks on the tree between shifts.

• Sell cards and bookmarks to visitors: | Follow

sales scripts.

• When your alarm sounds, finish the current transaction. • Balance the cash drawer and make sure the money and inventory sheet match. • Turn in the money and inventory sheet to the therapist. • Return the bookmark tree to the supply closet. • Pack supplies on the cart and take it back to the lunchroom. • Put supplies away in their designated locations. • Return the cart to the storage room.

FIGURE 7.8.  Procedural checklist for selling cards and bookmarks.

Date:



Transfer of Skills to Home, Community, and Work 265 Date Completed • Team and patient (with family input) decide which situational assessment is best for the patient: | Discuss

any restrictions (mobility, lifting, hours, etc.).

| Schedule

shadow experience if needed to aid decision making.

| Collaborate

with the tiers of support.

• Medical release of information must be signed by the patient or representative. • Request a prescription from the physiatrist to participate in a situational assessment (include restrictions, limitations, number of hours, etc.). • Prepare for an interview: | During

therapy, the patient creates and practices a script about goals, strengths, challenges, and the role of the job coach.

| Remember

to inquire about the dress code and expectations.

• Schedule an interview during a therapy session to ensure the therapist can attend. • Determine the schedule and tentative start date. Confirm with the family. • Plan for the patient to receive assistance in individual therapy sessions related to: | Completion

of paperwork, including background checks

| Creating

and practicing potential compensations

| Memory

assignments of what to bring to the situational assessment

| Directions

and transportation arrangements

| Making

sure phone numbers, address, and supervisor contact information is available to the CTN coaches, patient, and family

| Deciding

where notes will be taken at the site

• Patient begins situational assessment position. • Update and practice compensations during individual therapy sessions. • Increase hours and duties as appropriate. • Have the patient, situational assessment coach, and supervisor fill out situational assessment rating scales every 2–4 weeks. • Review the Situational Assessment Rating Scale with the patient, family, therapists, case manager, and relevant medical providers and provide written copies as appropriate. • Add time incrementally to shifts and/or decrease therapist monitoring as the patient demonstrates mastery. • Share information regularly with the patient, team, family, physician(s), and case manager.

FIGURE 7.9.  Situational assessment checklist.

266

Transfer of Skills

When patients are placed in hospital and community settings, the situational assessment coach helps with advocacy, inclusion of accommodations, compensation establishment and implementation, and education of relevant personnel, for instance, the supervisor and coworkers. The patient is empowered to take as much of a leadership role as possible, amalgamating the nature and extent of neurological difficulties. The worksite is always kept abreast of how and when the job coach is involved, with an emphasis on a close collaborative relationship. Supervisors are highly encouraged to present verbal and written information directly to the survivor; this carries much more weight than the therapist acting as the “middleman.” Clinical experience has shown that patients will more readily dismiss the therapist’s opinions than those from outside people at work. Situational assessment ratings scales are used to obtain written feedback; they are completed by the survivor, situational assessment coach/therapist, and supervisor. A generic format can be used (see Form 7.4) or a customized one (see Samuel’s Situational Assessment Rating Scale in Figure 7.10; a colorized version of it appears at the book’s companion website), based on what is most beneficial to the patient, therapists, and third parties (Klonoff, 2010; Klonoff et al., 2000). These are completed once or twice monthly, and every attempt is made to ensure this process is expeditious, given how busy most work environments are. Copies are also reviewed with the survivor, support network, and third parties (e.g., physicians and case managers) as well as the entire team in staff meetings. It is noteworthy that the therapist/situational assessment coach’s ratings are frequently indicative of greater deficits than those of the survivor and supervisor. Reasons for this include organic unawareness or other psychological factors in the patient, including denial and defensiveness, and/or a lack of in-depth knowledge or keen observational skills in the supervisor, as a result of time constraints or inexperience with the aftereffects of brain injury. In Samuel’s case, his emerging awareness affected some ratings, while his supervisor’s perceptions were close to those of the situational assessment coach, as he had prior experience working with our program participants. Nonetheless, all ratings should be carefully considered, with the intent of concordance to best inform and support the patient. Of note, most situational assessments last approximately 6–8 weeks to enable proficiency; at that point, active changeover to competitive employment begins. On occasion, a patient will move to a second situational assessment placement, based on the need for additional skill attainment prior to switching to competitive employment and/or the added advantages of another preemployment exposure. Decision Making about Competitive Job Directions

Individual psychotherapy sessions explore postinjury competitive work prospects in the context of evolved awareness, acceptance, and realism (Klonoff, 2010). This includes any barriers such as reluctance to modify job duties and/or directions. Adjustment factors are fortified during group psychotherapy meetings, whereby survivors share preadmission “goit-alone” employment foibles, namely, “hiding” brain injury sequelae, not keeping up with the work pace and demands, the impact of physical challenges (e.g., ataxia, lower endurance) on job performance, and problems learning new protocols. To improve awareness, acceptance, and realism and counteract poor decision making and compound failures, topics to be



Transfer of Skills to Home, Community, and Work 267 Date:  8-15-21

Completed by: Su p e rviso r (S) Completed by: S.A. Coach (C) Completed by: Patient (P)

Selling Cards and Bookmarks How would you rate yourself/this person in the following areas on a scale of 1–10? (1 is “unsatisfactory,” 5 is “average,” 10 is “outstanding”)  1. Work Pace/Speed/Endurance:

1 2 3 4 5 6 7 8 9 10

Comments: S: Sa m u e l’s s p eed is a lit t l e slo w fo r wha t wo ul d b e req u i red a t wo rk bu t is i m provin g. His en d uran c e is bett e r th a n w h e n h e started .

C: Samuel’s work pace is below average but has come along, as has his endurance. P: I feel that I’m keeping up well.  2. Accuracy:

1 2 3 4 5 6 7  8  9 10

Comments: S: Protoc ols h a v e b e e n fo l lo w ed co rrec t l y.

C: Better attention to detail and accuracy. P: I’ve learned to balance speed with accuracy.  3. Focus/Concentration:

1 2 3 4 5 6  7 8 9 10

Comments: S: Ap pears to focus w e l l o n t h e custo m e r.

C: Samuel is able to remain focused on the customer, but sometimes loses focus when calculating prices and making change. P: I feel like I’m concentrating well.  4. Following Directions:

1  2  3 4 5 6 7 8 9 10

Comments: S: I c a n t e l l Sa m u e l s t ruggles wi t h n e w ins t ruc tions .

C: Samuel has trouble with new and complicated directions. P: I think I’m getting the hang of new instructions but sometimes I have problems.  5. Interactions with the supervisor/job coach:

1 2 3 4 5 6 7 8 9 10

Comments: S: Sa m u e l is o p e n to feedbac k bu t do es not a lways fo l lo w t hrough wi t h a d vi c e.

C: Samuel is mostly open to feedback but needs extra explanation and reminders when learning new compensations, like his scripts. P: I am trying to be open to feedback and I think I’m improving with this.  6. Interactions with customers:

1 2 3 4 5 6 7 8 9 10

Comments: S: Sa m u e l is p leas an t bu t co ul d sho w a lit t l e mo re “zes t ” fo r his jo b. I t h i n k t his migh t b e part of his bra i n i n ju ry.

C: Samuel has been practicing the different conversation starters. This is contributing to the quality of his interactions. His affect seems blunted and sometimes he seems anxious, but he is aware of this and is trying to be more animated. P: I get a little nervous trying to make small talk, but I’m really trying hard. (continued)

FIGURE 7.10.  Samuel’s Situational Assessment Rating Scale.

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Transfer of Skills

 7. Asking Questions When Unsure:

1 2 3 4 5 6 7 8 9 10

Comments: S: Sa m u e l cla rif ies o r asks q ues tions if wha t I s a y s e ems confus in g.

C: When in doubt, Samuel asks. P: I feel comfortable asking questions when I need to.  8. Taking Feedback

1 2 3 4 5  6 7 8 9 10

Comments: S: Sa m u e l has i m proved i n lis t e n in g to m y feedbac k .

C: Samuel occasionally needs time to process the information secondary to his slower speed of processing. Occasionally, he gets frustrated. P: I try to be open to feedback, but it does irritate me sometimes.  9. Problem Solving and Multitasking:

1  2  3 4 5 6 7 8 9 10

Comments: S: This s e ems to b e Sa m u e l’s bigges t diffic ul t y; i t is h ard fo r h i m

to alt e rnat e be t w e e n diffe ren t custo m ers an d t h e o t h e r s t eps, l i k e co m puta tions an d baggin g t h e it ems . Th e mo re peo p l e wai t in g i n l i n e, t h e mo re h e s e ems to beco m e ov e rw h e l med .

C: Switching between activities and customers is a major challenge. P: I think I’m coming along with this. 10. Memory for Routine:

1 2 3 4 5 6 7 8 9 10

Comments: S: It ta kes so m e t i m e to lea rn n e w t h ings, bu t wi t h prac ti c e Sa m u e l catc hes o n .

C: Samuel needs additional time to learn new things, but he improves with repetition if he takes good notes. P: I know that I struggle with my memory, but as I get the hang of the duties, I’m remembering more. General Comments: S: Sa m u e l has co m e a lon g wa y s in c e start in g t his si tua tion a l ass ess m en t a mon t h ago. I t h i n k h e def i nit e l y has t h e s ki l ls to wo rk i n a custo m e r s e rvi c e posi tio n, as lon g as i t is n’t s u p e r bus y mos t of t h e t i m e.

C: Samuel is a hard worker and has demonstrated improvements in his use of scripts, compensations, and confidence in his interactions. This position is great practice for a customer service job! P: This situational assessment has helped me a lot, especially with practicing my compensations and learning new things. The thoughts my psychotherapist put in my head turn out to be true! I am enjoying this opportunity!

FIGURE 7.10.  (continued)



Transfer of Skills to Home, Community, and Work 269

addressed in individual and group psychotherapy topics include (see Chapter 10; Klonoff, 2010; Klonoff et al., 1998, 2007; Perumparaichallai et al., 2020): • Research data on return to work for same versus different positions • Outcome evidence indicating the value in using multiple compensations in maintaining long-term employment • Reasons survivors are not successful in resuming work: | Motivational difficulties like secondary gain | Inability to make realistic choices regarding job domain and complexity of duties • Value in close partnering with clinicians, physicians, and relatives (his or her advisory board) and other third parties (e.g., vocational rehabilitation counselors, workers’ compensation case managers, physiatrists, psychiatrists) for their expertise, with an emphasis on fostering awareness, defined as knowing work-­related strengths and obstacles; acceptance through lessening grief and loss and other disappointments; and realism as in making good selections regarding job opportunities and parameters • Goal of obtaining “a job” versus “the job”; a steppingstone approach of gradually re-­entering the workforce and building on achievements. Patients are encouraged to remain in their first placement obtained through their neurorehabilitation at least 1 year to bolster skills, compensation practice, and confidence. Getting the support network “on board” with sensible job options and the role of the treatment team in this regard is critical to the survivor’s effective move to employment; this is a focus of family sessions as well as in family group. In Samuel’s case, because of the “hard knocks” that brought him to CTN, he and his support network were keen to “trust the process” about job direction decisions. Job Development

Table 7.6 summarizes patient information pertinent to the work re-entry process, amalgamating personalized purposes and goals; attainments and interests; health status variables; physical, cognitive, language, social/emotional strengths and challenges; compensations; and transportation. Brainstorming about this is initiated in both individual and group psychotherapy; however, all therapy disciplines, medical providers, the survivor, and the support network weigh in with ideas. Samuel’s choices are also listed in Table 7.6. All clinicians keep the generalization of principles to future jobs at the forefront. They back the patient while simultaneously teaching self-­advocacy. Material on strengths and hurdles and implications for employment are also interwoven from psychoeducation group (see Chapter 3); cognitive retraining (see Chapter 3); and vocational group (see Chapter 5). A draft document is produced with each participant. A beneficial exercise is to review the personalized list; have him or her rate the level of buy-in on a “green” (good), “yellow” (fair), or “red” (poor) spectrum; and then share this with his or her core team and in group psychotherapy for peer contributions. This allows self-­reflection amalgamated with outside perspectives. See Table 7.6 for Samuel’s self-­rating of buy-in for each category.

270

Transfer of Skills

TABLE 7.6.  Considerations for Competitive Employment Patient self-rating of level of buy-in Purpose and goals • Return to same versus different job based on what is attainable and my “new reality.”

Green

Samuel’s choice: I need a different job. • Find a job that prepares me for a new career interest. Attainments and interests (examples) • Preinjury educational and work achievements • Helping others • Working outdoors

Green

Samuel’s choices: I loved working outdoors and ran my own pool business for 10 years. Health status (examples) • Health benefits (e.g., Social Security Disability [SSDI], short- and long-term disability) • Medical restrictions due to seizures, cardiac status, and the like • Part-time versus full-time capacity • Unsupervised time • Day versus night shifts • Indoor versus outdoor work • Lifting restrictions

Green

Samuel’s choices: I have SSDI; now I need to work part-time indoors; I have a seizure disorder. Physical strengths and challenges (examples) • Right- or left-sided weakness • Coordination • Strength • Fine-motor skills • Balance • Endurance • Vision • Hearing • Fatigue/sleep problems • Pain

Green

Samuel’s choices: strengths: vision; hearing; building stamina challenges: left-side weakness; balance; coordination; fatigue Cognitive/language strengths and challenges (examples) • Word finding • Thought generation • Expressive communication (talking) • Comprehension (understanding) • Communication pragmatics (e.g., hyperverbal, tangential, bluntness) • Concentration • Attention to detail • New learning and memory

Yellow/green

(continued)



Transfer of Skills to Home, Community, and Work 271

TABLE 7.6. (continued) Patient self-rating of level of buy-in • Speed of information processing • Executive functions (e.g., planning, problem solving, multitasking, impulse control, organization, flexible thinking)

Samuel’s choices: strengths: communication pragmatics; talking; comprehension challenges: concentration; new learning and memory; speed of information processing; multitasking Social/emotional strengths and challenges • Friendly • Hard working and motivated • Helpful • Kind • Optimistic/positive attitude • Family support • Anxiety • Depression • Emotional lability (i.e., “ups and downs”) • Frustration and irritability • Self-doubt/low confidence • Self-critical • Judgmental

Green

Samuel’s choices: strengths: friendly; hardworking; motivated; helpful; family support challenges: some anxiety and sometimes overwhelmed Use of compensations (examples) • Datebook • Checklists • Alarms

Yellow/green

Samuel’s choices: datebook; checklists; alarms Distance and transportation (examples) • Preferences of proximity of home to work based on transportation availability and limitations • Driving • Public transportation (e.g., bus, light rail) • Cab service • American with Disabilities Act (ADA) options • Family assistance

Green

Samuel’s choice: driving to a job fairly close to home

Job Search and Interview Process SAME JOB OR EMPLOYER

If it is determined that the survivor can return to the same employer, medical releases are signed to enable communication between CTN therapists and on-site employers/managers and often the Human Resource Department. A job description is obtained and reviewed by the team, relevant physicians, and other third parties to be sure that the patient can perform the essential functions. Ideally, a face-to-face appointment is scheduled with the employer, survivor, and CTN job coach to further discuss the nature of the ABI; necessary strategies;

272

Transfer of Skills

potential assistive technology and accommodations; essentiality of a job coach for support and education of the survivor, supervisor, and co-­workers; pay rate; job benefits, also in relation to payments such as workers’ compensation, SSDI, and health-­care coverage; and workforce characteristics. At that time, the possibility of modified duties on a temporary or permanent basis is investigated, if needed. DIFFERENT JOB AND EMPLOYER

Job search procedures for new positions are holistic in nature. A multitude of venues are explored, including online postings; contacts from participants, relatives, and friends; job fairs; and trade journals/magazines. Figure 7.11 is a letter provided to prospective employers to acquaint them with the CTN program and work re-entry process for our survivors so as to build community bridges. Interdisciplinary clinicians, with the leadership of the vocational specialist, are integrated, based on whose expertise most closely matches the survivor’s circumstances. With medical stipulations in mind, a speech therapist mostly takes the lead in finding potential employment opportunities for those recovering from aphasia, while the physical/occupational therapists navigate the physical requirements for a “right job” fit. Job search status is regularly updated as part of team meetings. Appendix 7.2 on the book’s companion website delineates the sequential protocol for assisting with the job development, search, and interview process; Appendix 7.3 also on the companion website lists potential online job search resources for easy team access. Form 7.5 is a Work Re-Entry Intake document and Form 7.6 is a Prejob Search Questionnaire that the patient completes; both of these necessitate caregivers’ input and a go-ahead. Checklists and logs are invaluable tools to compensate for memory difficulties during the search. For instance, patients should notate usernames and passwords for all online applications. Form 7.7 is a Job Search Tracking form, and Form 7.8 is a procedural checklist for the participant to follow during job search sessions. Samuel was assisted in completing his own renditions of these forms. Through brainstorming with Samuel and collateral input from his doctors and family, he decided to pursue part-time employment at a pool supply company in customer service, given his extensive knowledge and career history. Job Interviews and the Application Process

Preparation for job interviews is embedded in the holistic model; community formats are one-on-one with the interviewer, by panel, or by phone/video. Patients participate in mock interviews with speech/vocational and occupational therapists as well as their psychotherapists as often as needed to prepare for actual interviews; typically, this is two to three 45-minute sessions per week. They review a purpose sheet for mock interviews that specifies the value of developing communication skills and experiencing various interview styles before a real-world exposure. Participants create scripts that they rehearse to boost facility and confidence. They receive in-­session feedback about areas they did well in and how to improve, which they take notes about for future reference. Appendix 7.4 on the book’s companion website lays out interview procedures; an employer phone contact script; common interview questions for job applicants with examples

Transfer of Skills to Home, Community, and Work

273

Dear Employer: Thank you for your potential interest in hiring an individual from the Center for Transitional Neuro-Rehabilitation Program (CTN). This is an intensive outpatient program at the Barrow Neurological Institute that has been in operation for 38 years. It is designed to assist survivors of acquired brain injuries (e.g., traumatic brain injuries, strokes) return to competitive employment. These individuals have survived and conquered life-altering experiences and are extremely eager to return to purposeful work. Please know that you are giving these survivors a "second chance" as they greatly want to be productive and fulfilled! The role of the CTN job coaches is to assist the potential employee and employment setting in creating a successful and collaborative working relationship. CTN job coaches work carefully to find job positions that are a "right fit," meaning they allow the employee to perform the essential functions of the job and be an asset to the company. This can be on a part-time or full-time basis. All of our program participants have first undergone one to two situational assessment positions, which are unpaid precursor work positions to enhance work behaviors and prepare the individual to be successful in a paid position. CTN job coaches assist them in finding and succeeding in these roles. If you are willing to hire one of our program participants, CTN job coaches will accompany the prospective employee to the job interview. If an individual is hired, the job coaches can assist with the onboarding process to ease the workload on the job supervisor. Job coaches will also help your new employee develop and use strategies (i.e., compensations) so as to perform their job duties as efficiently and effectively as possible. Examples include taking notes, creating and using checklists, and a datebook system. At the beginning, job coaches may be onsite for most or all of the work shift; every attempt is made to be nonintrusive and maintain the privacy of the patient and working operation of the worksite. As the employee demonstrates proficiency, job coaches reduce the frequency and amount of monitoring. Periodically (every four to six weeks), we would appreciate written feedback in the form of a rating scale to help your employee and his or her treatment team maximize work performance and behaviors. Job coaches are also available anytime to provide input and support to your company related to the employee's work habits. We have an extremely high success rate (close to 100%) in employing our program participants. They go on to maintain employment indefinitely, often through promotions due to their strong work ethic and great motivation to be functioning members of society. Thank you for considering this person for your worksite, and we look forward to working with you.

FIGURE 7.11. Letter to prospective employer.

of patient responses; and a bank of other possible interview questions that can be practiced. Valuable considerations are a list of reasons for leaving previous employment, whether voluntary or due to termination, and gaps in employment after the ABI. A sample of Samuel’s answers is also furnished in Appendix 7.4. Additionally, interview practice occurs in vocational group (see Chapter 5 for more details). Peer contributions as well as video recordings (Medical Memory at www.themedicalmemory.com) enable additional analysis and skill refinement. Areas for review are the content of answers, but importantly, also general preparedness and use of premade scripts, skill in responding to both scripted and unscripted questions, nonverbal communication like eye contact and posture, level of attentiveness and

274

Transfer of Skills

enthusiasm, as well as overall professionalism, accuracy, reasonableness, and conciseness of responses. Samuel received extensive rehearsal of interview questions through all of these venues and progressed nicely. Given that his speech therapist was bilingual, he also practiced answering questions in Spanish. Individual and group psychotherapy meetings are utilized to discuss the pros and cons of brain injury disclosure, as this can pose angst. This is also addressed through family sessions and in family group. The explanation hinges on the expectation of transparency so that the employer is aware of the applicant’s circumstances and is willing to provide a nurturing and accommodating environment. It also ameliorates the inherent stress when “hiding” challenges that are negatively impacting job interviews and/or work performance, thereby further compromising focus and emotional well-being. Therapists guide patients once they apply for jobs. This includes careful review of online applications to be sure information is accurate and thorough. There is close follow-­up on the receipt of applications, and follow-­up phone calls are made as a therapeutic exercise on the status of applications. If an interview is granted, the patient enquires regarding the opportunity for a job coach to join. He or she functions as a patient advocate, for emotional support, and to help guide the applicant to a realistic job position. Figure 7.12 more fully explains the role of a job coach based on what a patient might present during the interview and information provided by the job coach. Samuel received calls for interviews from three pool supply companies. He was able to bring a job coach to two of the three interviews and after the final interview landed a position as a part-time sales associate. His employer was impressed with Samuel’s eagerness to work and bilingual proficiency for making sales. Samuel and everyone else were ecstatic. Job Placement and Coaching

Once the survivor is offered a position of competitive employment, a member of the job coaching team confirms with relevant physicians that the job is the “right fit” and, if needed, medical restrictions are articulated in writing. Then the patient liaises with a clinician to verify the accommodation of on-site job coaching with the employer. The discipline(s) with the closest expertise to the job duties accompanies the patient; sometimes this means two types of clinicians participate, for instance, a physical therapist to evaluate physical demands, vis-à-vis lifting and endurance requirements, safety, and so on, while a speech therapist supports the cognitive, language, and interpersonal elements (Klonoff, 2010). CTN job coaches commonly attend onboarding and training and are present for early full shifts to capture essential job functions, help promote reasonable accommodations, obtain real-life information, help the new employee acclimate to the setting, and best equip him or her with strategies. They facilitate natural supports through education and support for the supervisor and coworkers, as appropriate. At times, at the request of the employer and with the permission of the survivor (and knowledge of the doctors and family), short in-­services focusing on psychoeducation about brain injury and necessary accommodations are jointly provided by the participant and job coach (see https://askjan.org/a-to-z.cfm?cssearch=3046237_1 for resources; see also Klonoff, 2010).



Transfer of Skills to Home, Community, and Work 275 General Information about a CTN Job Coach Provided by the Patient What is the CTN? • The Center for Transitional Neuro-Rehabilitation is a work re-entry program for people with brain injuries. What is a job coach? • A job coach functions as a free, extra trainer to help me learn job responsibilities, and develop any tools needed to help me be successful in completing job duties. • If possible, the job coach attends my initial orientation and training sessions in order to have a good understanding of job duties and company policies. • If company policy allows, it is helpful for the job coach to be present during some of my work shifts while I learn the responsibilities of my position. • The job coach would be happy to answer any questions you (the employer) have about my job performance. What role will the job coach play in the interview? • He/she will be present to observe and support me. The job coach will take some notes to understand the job responsibilities and how I can be successful. • The job coach is also happy to answer any questions you have about my application and skills for this job.

CTN Job Coach Information for Employers Thank you for partnering with us. We are here to create a “win–win” situation for your company and your employee. There is no cost for job coaching for the employer. Here’s How We Help! Assist with Orientation and Training Job coaches assist with the onboarding process to ease the workload for the supervisor. • We attend initial orientation and training shifts to help the employee with the thinking and physical parts of the job and use his or her compensations. • A compensation is a tool or strategy to help someone perform a task well. • Examples include taking notes, creating and using checklists, and a datebook system. • We help your employee create step-by-step checklists to improve accuracy, efficiency, and safety. Recommend Reasonable Accommodations • We recommend reasonable accommodations to help your employee’s success and productivity. Offer Emotional Support • We give your employee support and encouragement as they transition into their role. Provide Education to Supervisors (and Relevant Coworkers) • We are happy to provide education about the employee’s strengths and challenges and which job duties are the best fit for him or her (with his or her permission, of course). (continued)

FIGURE 7.12.  Job coach information for employers.

276

Transfer of Skills

Here’s How You Can Help! Allow Job Coaching and Training • Initially, the job coach is on-site for most or all of the work shift; as your employee gains proficiency, our on-site presence reduces. • The number of job coaches are limited and are assigned based on their expertise in your position’s essential job functions. • Job coaches will be nonintrusive and will maintain the privacy of the employee and your work operations. Provide Feedback and Support • Please consider and approve reasonable accommodations, if needed. • Please encourage the employee to use their compensations. • We encourage you to provide direct feedback to the employee about their performance while a job coach is present. Collaborate with Job Coaches • Please let job coaches know what is going well at work and if there are areas where the employee can improve. • Every 4 to 6 weeks, the job coach will request written feedback on the brief Work Trial Rating Scale, which pertains to key work skills. • This information is shared with the employee so as to maximize job performance. Thank you!

FIGURE 7.12.  (continued)

Supplemental in-­clinic sessions are utilized to debrief about observed strengths and limitations at the job site, and particularly compensation development, usually checklists and reminder cards. Assistive technology is also practiced if pertinent to the job duties, such as Dragon speech recognition (see Chapter 6 for more information on this). As the survivor gains competency and confidence, the job coach systematically fades out visits, while still attending for germane and complicated components, namely, learning new tasks, and/or shift openings and closures. If needed, using medical paperwork, the job coach and survivor advocate for accommodations, even job modifications or elimination of nonessential parts in a “niche position,” at the same time being mindful of not imposing undue hardship on the employer. Should an unfortunate situation emerge where the patient is terminated, either for cause or as a result of work circumstances, job coaches (in combination with collateral inputs) are reenlisted to assist, including helping the survivor find another position, or if necessary, pursuing other options, like volunteer work. Crucial for the participant’s assimilation of job expectations and in line with improving awareness, acceptance, and realism of this phase of his or her adaptation is verbal and written feedback from the employer (Klonoff, 2010). This occurs 4–6 weeks after starting the job, to allow sufficient time for the supervisor to gather impressions. Follow-­up ratings are obtained on approximately a monthly basis. To make this task easier for the supervisor, a prefabricated Work Trial Rating Scale (WTRS) is provided. If preferred, the therapist and patient can partner in developing a shortened or tailored version of a WTRS that better mirrors more specialized job requirements.



Transfer of Skills to Home, Community, and Work 277

The patient and job coach also complete separate written WTRSs, whereupon a comparison is made between the ratings of all parties to discover areas of concordance and discrepancy. These are shared with relevant outside parties (e.g., relatives, physicians, vocational rehabilitation counselors, and workers’ compensation case managers). Supervisors’ ratings are often better due to an encouraging stance and less expertise in brain injury intricacies. However, as a rule of thumb, “red flags” are present when the patient’s ratings are three or more points higher (indicative of overestimation of abilities) or lower (suggesting underestimation of capabilities) than the job coach and/or supervisor. Then a post hoc analysis is done in order to inform everyone about the areas in which the patient is excelling and struggling, how he or she fares relative to the supervisor’s point of view, and recommended corrective action by the patient. Form 7.9 contains a generic WTRS version with user-­friendly clarifications (see also Klonoff, 2010) as well as Samuel’s completed version in Figure 7.13, amalgamating his, the supervisor’s, and the job coach’s ratings and input. Samuel’s overall rating concordance was good; follow-­up discussion focused on using compensations for challenges with memory and executive functions. (A colorized version of Figure 7.13 is available at the book’s companion website.) Generally, the return-­to-work process necessitates 2–4 months of job monitoring. By the time of discharge, on-site visits have typically reduced to once every 2 weeks or phone call check-ins. The employer is given fair notice that the job coach is phasing out, to be sure all queries and/or concerns are addressed. Extensive updates and preparation have also been given to the family, health-­care providers, and third-party payers. All of this transpired for Samuel. At the time of therapy termination, he received rave reviews from his supervisor and job coach after working for 4 months with this company. At “cake day,” Samuel shared this with the milieu and his family: “Thanks to my brain injury, I realized that going to work is not the standard, but rather a privilege. . . . Every day I’m at this job I am grateful. . . . My life motto now is what could have broken me, built me.”

LE S SO N S LE A R N E D 1. Survivors view resumption of driving as integral to self-­sufficiency. Occupational therapists, in conjunction with holistic evaluations and interventions, facilitate driving readiness in the physical, visual/visuoperceptual, cognitive, communication, and emotional domains and coordinate with relevant third parties, including caregivers, physicians, and the state. Driving simulators using virtual environments and clinical off-road/on-road examinations by specialized driving evaluators should be the standard of care. 2. Comprehensive neurorehabilitation should prioritize restoring parents with ABI to the highest level of childrearing responsibilities possible, through eclectic and personalized compensations, collaboration with co-­parents and other key caregivers, and implementation of age-­appropriate tasks in a stepwise progression, with medical input and clearance. Pertinent arenas are unsupervised time with children, checklists, and activities. Psychotherapists manage the emergent, intense

278

Transfer of Skills

emotional sequelae in the survivor parent and his or her family and provide practical psychoeducation and community resources with a goal of reconstituting harmonious and rebalanced marital and tiers of support interactions. 3. With medical guidance and under the auspices of a vocational specialist, the return to competitive employment after ABI requires multidisciplinary evaluations and then interdisciplinary and transdisciplinary individual and group treatment with family involvement for generalization of compensations, adequate emotional and interpersonal adjustment, and prework situational assessments. This transitions to job development for determination of “right fit” employment, guided job search, and practice with job interviews and applications, followed by therapist-­mediated job placement and on-site coaching. Partnering with community employers for opportunities, obtaining physician medical releases, advocating for reasonable accommodations, integrating regular constructive feedback, and utilizing rating scales are all vital to the survivor’s successful acquisition and longevity at competitive employment.



Transfer of Skills to Home, Community, and Work 279 Date:  11/30/21

Completed by: Su p e rviso r (S)

Job Position:  Pool Supply Customer Service Member

Completed by: Job Coach (J)

Number of Months Working:  1.5

Completed by: Patient (P)

How would you rate yourself/this person in the following areas on a scale of 1–10? (1 is “unsatisfactory,” 5 is “average,” 10 is “outstanding”)  1. Work Pace/Speed:

1 2 3 4 5  6 7 8 9 10

Comments: S: Sa m u e l ta kes i ni tia t i v e to ga t h e r n ee ded s u p p l ies to co m p let e

assign ed tasks as bes t h e c a n . He wo rks a t a s ligh t l y slo w e r pa c e bu t gi ves qu a li t y s e rvi c e to t h e custo m e r.

J: Samuel’s speed has increased as he gains familiarity with tasks. P: My work pace is improving with practice.  2. Accuracy:

1 2 3 4 5  6  7 8 9 10

Comments: S: Sa m u e l’s acc urac y is go od; i t is e vi d en t h e kn ows t h e poo l in dus t ry.

J: Overall accuracy is good for all tasks with only occasional cueing to correct errors. P: Accuracy is important to me and I’m really trying not to make mistakes.  3. Focus/Concentration:

1 2 3 4  5 6 7 8 9 10

Comments: S: At t i mes, Sa m u e l n eeds to b e re m in ded, bu t h e t ries to sta y focused o n tasks .

J: Some distractibility but has gradually reduced. P: Sometimes I get distracted; I talk to my co-workers, so sometimes it’s hard to stay on task.  4. Following Directions:

1 2 3 4 5 6 7 8  9 10

Comments: S: I’m i m p ress ed tha t Sa m u e l ta kes notes an d re peats bac k wha t I s a y to b e s u re h e un d erstands .

J: Samuel listens well and uses the read-back and verify strategy and note-taking app on his phone. P: I try to do what my supervisor asks and my tools help.  5. Interactions with Coworkers:

1 2 3 4 5 6 7  8 9 10

Comments: S: Sa m u e l wo rks effec t i v e l y wi t h i n a tea m e n viro n m en t.

J: Samuel is friendly and socially appropriate. P: I like interacting with them; they’re like a second family.  6. Endurance:

1 2 3 4  5 6 7 8 9 10

Comments: S: Sa m u e l is lea rn in g to un d erstan d his l i mits; h e t ries to k e e p go in g fo r t h e f u l l 4-ho u r s hift.

J: Samuel appeared somewhat fatigued when he first starting working, but this is improving. P: I’m working on this and my physical therapy home program is helping. (continued)

FIGURE 7.13.  Samuel’s Work Trial Rating Scale.

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Transfer of Skills

 7. Asking Questions When Unsure:

1 2 3 4  5 6 7 8 9 10

Comments: S: Sa m u e l do es not hesitat e to as k fo r guidan c e o r d i rec tio n w h e n n ee ded .

J: Samuel asks questions, but I’m encouraging him to think things through and also check his notes. P: When I’m not sure of things, I try to figure them out myself or ask for help.  8. Taking Feedback:

1 2 3 4 5 6 7 8  9 10

Comments: S: Sa m u e l wants to do his bes t an d is a lways rec ep t i v e to feedbac k .

J: Consistently good with hearing feedback from the therapist and supervisor. P: I like feedback because it helps me take it to the next level. I try to respond respectfully and get the job done well.  9. Problem Solving and Multitasking:

1  2 3 4  5 6 7 8 9 10

Comments: S: Sa m u e l is ev o l vin g i n t hes e a reas . He s t ruggles mo re w h e n i t ’s bus y, an d h e has to t h i n k o n his fee t an d h an d l e mo re th a n o n e t h in g a t a t i m e.

J: When there are variations in routine, Samuel sometimes needs help and cueing. Right now, Samuel benefits from assistance with problem solving and juggling duties. He improves when given several options to choose from. P: I have a lot of things to do—I’m still working on multitasking and handling new situations. 10. Memory for Routine:

1 2 3 4 5 6 7 8 9 10

Comments: S: Re pe ti tio n h e l ps Sa m u e l un d erstan d assign ed tasks; h e s t ri ves to lea rn mo re. Th e lo w e r s t ress s hifts an d re pe ti tio n h e l p to k e e p h i m o n trac k .

J: This is still an area of challenge, but he has progressed well. He did recall a task that he hasn’t completed for almost a month. P: The routine is stabilizing in my brain! Sometimes I need reminders for new tasks. Other General Feedback: S: We a re s o h app y Sa m u e l is part of o u r tea m. Th a n k yo u to t h e jo b coac hes fo r yo u r s u pport.

J: Samuel is coming along nicely at work; this job is clearly a “right fit” position. P: I’m so happy I’m finally working and supporting my family. Concerns: S: Jus t wan t Sa m u e l to con t i n u e to lea rn an d fe e l comforta b l e h e re.

J: We’ll focus more on problem solving and multitasking. P: I know I need more practice with complicated things. Requests: S: App reciat e jo b coac hes s t i l l co m in g on c e o r t wi c e a w e e k .

J: Another WTRS in 4 weeks will be very helpful. P: None

FIGURE 7.13.  (continued)

FORM 7.1

Parenting Rating Scale Version 1 Date:    Completed by:      1. Judgment/safety awareness

Good

Room for Improvement

2. Consistency

Good

Room for Improvement

3. Planning

Good

Room for Improvement

4. Communication (with spouse and children)

Good

Room for Improvement

5. Impulse control

Good

Room for Improvement

6. Multitasking

Good

Room for Improvement

7. Realistic self-appraisal

Good

Room for Improvement

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

281

FORM 7.1

Parenting Rating Scale Version 2 Date:

  Completed for:      Completed by:     

How would you rate yourself/this person in the following areas on a scale of 1 to 10? (1 is “unsatisfactory,” 5 is “average,” 10 is “outstanding”)  1. Work pace:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  2. Preparing area before starting:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  3. Following checklist(s) completely:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  4. Answering children’s questions:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  5. Problem solving:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  6. Attending to each child:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  7. Awareness of where each child is:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  8. Monitoring all children:

1 2 3 4 5 6 7 8 9 10 NA

Comments:  9. Mental and physical energy:

1 2 3 4 5 6 7 8 9 10 NA

Comments: 10. Impulsivity:

1 2 3 4 5 6 7 8 9 10 NA

Comments: 11. Remembering important things:

1 2 3 4 5 6 7 8 9 10 NA

Comments: 12. Taking feedback:

1 2 3 4 5 6 7 8 9 10 NA

Comments: 13. Giving appropriate consequences for misbehavior:

1 2 3 4 5 6 7 8 9 10 NA

Comments: From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

282

FORM 7.2

A Sample Plan for Increasing Unsupervised Time with Children Name:   Date:      Stay at current level until the following criteria are met (for a minimum of 2 weeks): 1. Accurate self-assessment: • Able to identify areas of strength and difficulty that the [patient] and support network [spouse, Tier 2 support network, personal assistant], and speech and occupational therapists observe. • [Patient’s], spouse’s, [and possibly Tier 2 support network, personal assistant’s] weekend rating scale disagree only by 1 number. 2. Meal planning: • Recipes are planned based on everyone’s schedule. • Healthy food choices are made. • Grocery list is created. 3. Meal preparation is completed smoothly: • All steps are followed in the correct order. • All steps are completed accurately. • No safety issues arise. 4. There is harmony at home: • The [support network] is treated kindly when giving constructive feedback. • No one feels as if they are “walking on eggshells.” • There is “give and take” in relationships. 5. Better communication/tag teaming with the spouse: • The spouse is aware of the patient’s schedule because he/she shows it to him/her at the biweekly family milieu meeting. 6. More consistency: • The patient, spouse, and other support network members (Tier 2 and/or a personal assistant) score 8 or above in all areas on rating scales. • Special attention is given to one-on-one time with the younger children [number or name]. Current level: Dinner

[X] nights/week

Laundry [X] loads/day

[X] days/week

Prepare lunch for all or [number] children.

[X] days/week

Clean and maintain adult bathroom and bedroom [X] times/week.

[day(s) of the week]

Clean and maintain kids’ bathroom [X] times/week.

[day(s) of the week]

Unsupervised time with oldest children [number or name]

[X] hours/week

Unsupervised time with all or [number or name] children

[X] hours/[day of the week] [X] minutes every day

Unsupervised time with the youngest children [number or name]

[X] minutes/hours [day(s) of the week]

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

283

FORM 7.3

Co‑Parenting Checklist Mon. Tasks

Tues.

Wed. Thurs.

Fri.

Sat.

Sun.

[Date] [Date] [Date] [Date] [Date] [Date] [Date]

Make sure        [patient name] has enough procedural checklists in [his/ her] binder. Review weekly and monthly schedules; look daily for any changes. Cue as needed to maintain data on the app for        [baby or toddler’s name] (e.g., feedings, diaper changes, naps, baths). Review daily schedule and checklists for completion. Check if        [patient name] had one-on-one time with each child. Check schedules to make sure        [patient name] is not overscheduled. Watch for overload; this could be due to dehydration, meal skipping, visual clutter, too many distractions, children seeking attention or being demanding. Provide regular downtime or breaks.

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

284

FORM 7.4

Situational Assessment Rating Scale Name:   Date:  How independent was I/he/she in the following areas? Ratings: 1 = I/he/she could not have done certain tasks without help from the therapist/supervisor. 2 = I/he/she needed a fair amount of help from the therapist/supervisor. 3 = I/he/she needed a little help from the therapist/supervisor. 4 = I/he/she did not need any help from the therapist/supervisor. Skill Area

SelfRating

Therapist’s Supervisor’s Reasoning/ Rating Rating Comments

1.  Memory/new learning

2.  Focused attention

3.  Speed of processing/work pace

4.  Accuracy/attention to detail

5.  Time management/prioritization

6.  Openness to feedback

7.  Decision making/planning

8.  Use of compensations

9.  Overall productivity

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

285

FORM 7.5

Work Re‑Entry Intake Name:   Date:  Work History: Previous employment:  Do you have a current résumé?  Y / N Benefits: Have you had benefits counseling?  Y / N   Date:    Outcome:  Current Strengths, Challenges, and Compensations: Strengths/job skills: Challenges: Compensations:  Positions: Position(s) desired:  Locations: Location for search:  Willing to travel     miles/minutes from home address:     Transportation: Will be traveling to work via:  car  bus  light rail  taxi  paratransit Schedule: Part time  or  Full time Number of hours desired per week:  min:      max:     Hours available per day: Sun.

Mon.

Tues.

Wed.

Thurs.

Fri.

Sat.

A.M. P.M. Other Information:  Companies to Apply to:  From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

286

FORM 7.6

Prejob Search Questionnaire Name:   Date:  Complete these questions with your therapist and family in order to best prepare for the job search process: 1.  Do you have any legal or criminal history?

 Yes (please explain)  No

        2.  Have you ever been terminated from a job?

 Yes (please explain)  No

        3.  Are you using medical marijuana or any other substances that might show up on a drug screen (e.g., pain medications, stimulants, muscle relaxants)?  Yes (please explain)  No     4.  Do you have gaps in your work history?

 Yes (please explain)  No

        5.  Do you have any physical concerns regarding employment?  Yes (please explain)  No         6.  Would you have any concerns about someone contacting any of your prior employers as a reference?  Yes (please explain)  No         If you answered “yes” to any of these questions, work with your therapists to script how to explain these situations if/when asked on applications or during interviews.

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

287

FORM 7.7

Job Search Tracking Name:   Date: 

Company and Location

Position

Username and Password

Application/ Résumé Date Submitted

Contact Person

Follow-Up

Comments

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

288

FORM 7.8

Job Search Procedures Name:

Date

Date

Date

Search for positions that have been approved by your therapy team/physician/family. Apply to positions that have been approved by your therapy team/physician/family. Check your tracking form for details of whom to call. Make calls to follow up on applications (about a week after they are submitted) with your therapist. Check your voicemail and follow up on any messages with your therapist. Check your work email and follow up with your therapist. Make sure your job search tracking form is up-todate and includes enough detail.

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

289

FORM 7.9

Work Trial Rating Scale Date: 

Completed by:

Job Position: 

Completed by:

Number of Months Working: 

Completed by:

How would you rate yourself/this person in the following areas on a scale of 1–10? (1 is “unsatisfactory,” 5 is “average,” 10 is “outstanding”)  1. Work Pace/Speed:

1 2 3 4 5 6 7 8 9 10

Example: Does XX complete the task quickly enough? Does he/she mix up steps or duplicate steps that result in a longer completion time? Comments:

 2. Accuracy:

1 2 3 4 5 6 7 8 9 10

Example: Does XX complete each step accurately? Does he/she use his/her checklist correctly? Does he/she require assistance due to attention to detail errors? Comments:

 3. Focus/Concentration:

1 2 3 4 5 6 7 8 9 10

Example: Does XX get distracted? Does he/she require verbal prompts to get back on track? Comments:

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

290

Work Trial Rating Scale  (page 2 of 3)  4. Following Directions:

1 2 3 4 5 6 7 8 9 10

Example: Does XX follow directions without repetition or reminders? Does his/her understanding break down with more complex instructions? Comments:

 5. Interactions with Coworkers:

1 2 3 4 5 6 7 8 9 10

Example: Is XX polite? Abrupt? Get along with others? Initiate professional conversation? Use appropriate language and topics? Comments:

 6. Endurance:

1 2 3 4 5 6 7 8 9 10

Example: Does XX appear tired? Does he/she run out of steam before the end of the shift? Comments:

 7. Asking Questions When Unsure:

1 2 3 4 5 6 7 8 9 10

Example: Does XX come to you to get clarification? Too often? Not often enough? Comments:

 8. Taking Feedback:

1 2 3 4 5 6 7 8 9 10

Example: If requiring reminders or feedback about his/her work, does XX politely accept feedback? Does he/she make excuses? Comments:

(continued)

291

Work Trial Rating Scale  (page 3 of 3)  9. Problem Solving and Multitasking:

1 2 3 4 5 6 7 8 9 10

Example: Can XX keep track of/juggle two or more things at once? Is he/she able to figure out solutions to problems when they arise? Comments:

10. Memory for Routine:

1 2 3 4 5 6 7 8 9 10

Example: Does XX need redirection/extra time to remember where he/she left off from the last shift? Is he/she able to learn new things? Is he/she taking and using notes independently? Comments:

Other General Feedback:

Concerns:

Requests:

From Klonoff (2010). Copyright © The Guilford Press. Adapted by permission.

292

8 Post-Acute Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry with Alicia Blank, Meghan Grange, and Amy Helmuth

C LI N I C A L V I G N E T TE Paul was age 18 when he suffered a right frontal parietal intracerebral hemorrhage due to a ruptured arteriovenous malformation (AVM) for which he underwent an embolization procedure on June 3, 2020. He had just graduated from high school and was planning to enroll in community college classes locally in the fall. He lived with his divorced father, Max. Paul made good progress during his acute hospitalization and attended outpatient therapies three times per week for 4 months, primarily focusing on his deficits in visuoperception, lower extremity gait, stamina, and balance, as well as left upper extremity spastic hemiparesis. Five months postevent, he began the School Re-Entry Program at CTN; his neurorehabilitation was overseen by his physiatrist. Paul’s cognitive (processing speed, executive functions, memory, and attention), anxiety, organic unawareness, and communication pragmatics problems required attention before active re-entry into his social and academic world. To make matters worse, Paul felt “left in the dust” as his girlfriend had just broken up with him and his close friends had precipitously disappeared. Holistic milieu-­oriented neurorehabilitation encompasses a unique culture, whereby patients from diverse sociocultural backgrounds form relationships predicated on humanism and empathy (see Perumparaichallai & Klonoff, 2015, for a review). This chapter first focuses on medically necessary therapeutic techniques to enrich community-­based interpersonal connections, especially friendships and dating relationships for survivors of acquired brain injuries (ABIs), including the milieu session, ambassador program, and socialization group. Mechanisms for reconstructing quality of life are illuminated using recreational therapy approaches. See also Chapter 4 for more specifics related to individual and group treatment to improve communication pragmatics, social skills, and emotional health and well-being, 293

294

Transfer of Skills

and Chapter 5 for an overview of community outings group, all of which lay additional groundwork to facilitate social adaptation. Next, a current events group is described that incorporates both preacademic and socialization objectives. Then the return-­to-­school process is explained, starting with in-­clinic considerations, and ending in the classroom. Lastly, the graduation ceremony is highlighted, as a symbol of the laudable completion of holistic goals and reintegration into the community.

Socialization and Friendships after ABIs in Post‑Acute Neurorehabilitation Healthy adolescents are able to think abstractly, hypothetically, and logically; can self-­ assess and problem-­solve; have insight and perspective taking; and abide by the Golden Rule morality (Institute for Human Services, Ohio Child Welfare Training Program, 2007; Kambam & Thompson, 2009). ABI at a younger age can cause “arrested development,” translating to cognitive/language dysfunction (e.g., attention, memory, executive functions, intellect), academic struggles, and poor communication pragmatics, as well as mental health and behavioral problems (e.g., depression, anxiety, suicidality, impulsivity, and aggressivity) (Anderson et al., 2012; Ewing-Cobbs et al., 2008; Ilie et al., 2014). Other consequences in adolescents after ABI are social maladjustment, peer victimization, in-­person and cyberbullying, as well as rejection and stigmatization at school; these compound depression, loneliness, and social isolation (Hung et al., 2017; Ilie et al., 2014; Wiseman-­Hakes et al., 1998). All of this culminates in compromised self-­esteem, social dysfunction (e.g., exclusion and rejection), maladaptive behavior, reduced self-­regulation, and lower social cognition, affecting emotion perception, social competence, and social problem solving in the formative years (Anderson et al., 2012; Ryan et al., 2013; see Rosema, Crowe, & Anderson, 2012, for a review). Research and clinical experience indicate that regardless of age, ABI survivors experience alterations in their social circles due to disruptions in life paths, personality, mood, behavior, cognition, and social communication (Bertram, Power, Douglas, & Togher, 2020; Carulli, Olney, Degeneffe, & Conrad, 2018; Eberle, Dams-O’Connor, et al., 2022; Flynn et al., 2019; Klonoff, 2010, 2014; Salas, Casassus, Rowlands, Pimm, & Flanagan, 2018). Over time, challenges with physical and mental fatigue, memory, executive functioning, active listening skills, information transfer, hyperverbality, self-­awareness, egocentric behavior, and perspective taking alienate others, resulting in barriers to social engagement (Carulli et al., 2018; Eberle, Dams-O’Connor, et al., 2022; Salas et al., 2018; see Behn, Marshall, Togher, & Cruice, 2019, for a review). Paul exhibited these problems, and his lack of insight prior to CTN left him baffled and disgruntled about his empty social life. Family and social systems are also disturbed. Without therapeutic guidance, parents can experience denial about the seriousness and implications of the brain injury, skew family dynamics with excessive attention to the injured child versus the sibling(s) and spouse, and create a false expectation that the individual will “catch up” developmentally, cognitively, and socially and may even be “fixed” by neurorehabilitation (Klonoff, 2017). In the case of an injured spouse, neurological changes can reverberate into disturbed chemistry



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 295

with other couples postinjury (Klonoff, 2014). Functionally, the patient often cannot endure social activities that span into evening hours, especially in noisy and overstimulating environments (Klonoff, 2014). Other salient themes of social disconnection in chronic recovery phases are the loss of old friends who cannot handle the “new me” (Douglas, 2020; Klonoff, 2010; Salas et al., 2018). This is compounded by the survivor’s difficulty constructing new friendships and dating relationships because “outsiders” do not comprehend injury aftereffects along with interpersonal missteps (Douglas, 2020; Klonoff, 2010; Salas et al., 2018). Friendships either softly or abruptly disappear, compounding feelings of abandonment in the patient, primary caregiver, and family at large (Klonoff, 2014; Salas et al., 2018). Paul’s father, Max, stood by feeling powerless about the social alienation Paul was experiencing, even though he could see some underlying reasons why. He, too, felt alone, as the social activities he had engaged in with Paul crumbled. Yet, studies indicate that having friends and dating relationships after ABI enhances physical and mental health, self-­concept, identity, the return-­to-work process, life satisfaction and purpose, as well as self-­realization (Bertram et al., 2020; Douglas, 2020; Exell, Hilari, & Behn, 2021; for reviews, see Carulli et al., 2018; Flynn et al., 2019). Thus, a major target should be educating and training friends/significant others as communication partners, as well as group therapy utilizing individualized goal setting, training manuals, video-­ recorded stimuli, compensation training to increase self-­awareness, self-­monitoring, self-­ regulation, metacognition, and group feedback and discussions (Behn et al., 2019; Bertram et al., 2020; Klonoff, 2010). Patients’ hobbies and recreational interests can also be adversely affected, resulting in radically compromised quality of life (Carulli et al., 2018; Klonoff, 2014). This is frequently due to physical and functional sequelae that make it infeasible for them to resume certain sports and gratifying pastimes. The emotional aftermath of anxiety, depression, embarrassment, feelings of inferiority, and altered self-image exacerbates social isolation and withdrawal (Klonoff, 2010; Salas et al., 2018). Although Paul was tentative about additional therapy helping him with his current aspirations, he agreed to “give it a try.” Max was more hopeful as he desperately wanted his son to recover more and reintegrate into the community.

The Milieu Session at the CTN General Overview and Goals Milieu sessions at the CTN are the “hub” of the holistic culture and promote a cohesive community and interpersonal connectedness (Perumparaichallai & Klonoff, 2015). A “luvfesty,” humanistic feeling is infused into a safe, sensitive, and protected setting. Inclusive empathy creates a curative Gestalt by being part of a community where members truly matter to each other (Klonoff, 2010). All patients and therapists gather to discuss programmatic business, progress, and concerns (Klonoff et al., 2000). Given survivors’ proneness to social isolation postinjury, this is also a structured and therapeutic chance to build self-­assurance with group interactions. It also simulates other “real-world” environments that require social skills, teamwork, and meaningful relationships.

296

Transfer of Skills

Structure and Process Milieu meetings occur 4 days per week: Monday through Wednesday for 15 minutes, from 12:15 to 12:30 P.M., and on Thursdays from noon to 12:30 P.M. (Perumparaichallai & Klonoff, 2015). All attendees meet in a large group room. Relatives are invited to attend, especially on Thursdays, following which they join their loved ones for a communal lunch. The milieu session is facilitated by a neuropsychologist; however, survivors lead the meeting on a rotating and voluntary basis (Klonoff et al., 2000; Perumparaichallai & Klonoff, 2015). All patients (up to 30) and available therapists (up to 20) in the unit participate. In addition to breeding togetherness, milieu sessions are a robust opportunity for attendees to practice speech and language, cognitive (e.g., paying attention, speed of processing), interpersonal/communication pragmatics (e.g., limiting hyperverbality, tangentiality, and bluntness), and emotional regulation (e.g., snarkiness, anxiety) skills. It enables those with communication impairments to heighten comfort with augmentative and alternative communication (AAC) while at the same time inculcating compassion and patience in others.

Protocol Milieu sessions have protocols and traditions (Perumparaichallai & Klonoff, 2015). Each day, the clinician/facilitator asks for a patient volunteer to lead. This provides a great chance for the leader to remediate deficits, including receptive and expressive aphasia, memory, such as remembering names; visual scanning like noticing who has raised his or her hand; and communication pragmatics, namely, inhibiting off-color comments or jokes. Importantly, confidence is boosted by interacting with others in a safe and supportive setting that is then transferable to community connections. The first step of milieu meetings is to review the purpose after which the leader walks through a structured script (see Figure 8.1). New members are welcomed through a roundrobin scripted introduction given by all attendees. Paul joined the milieu 1 week after admission and provided his introduction (see Figure 8.1). He told his psychotherapist a few days later that this made a big difference as he felt the inclusive welcome to the “CTN family.” Max was present and became teary-eyed seeing and hearing about the tragedies that had befallen other same-age peers of his son, juxtaposed with their inviting spirits and optimism. Participants state updates regarding their datebook and Home Independence Checklist (HIC) scores; information about community outings, for instance, their jobs and goals; and patient-­led projects, such as food and gift drives for the underprivileged in the community (Klonoff, 2010; Perumparaichallai & Klonoff, 2015). If warranted, patients are aided in preparatory speech and/or psychotherapy sessions to generate scripts related to business (e.g., scores), updates, and achievements; this is particularly advantageous for survivors with aphasia and/or anxiety (see Figure 8.1 for examples). Applause for accomplishments is inherent to the group process. When contending with lower scores on their compensations, patients are invited to take ownership for this by describing what they intend to do to make gains. This enlightens others and teaches personal accountability, both of which are key for quality relationships. Get-well cards for sick members are initiated by a caring cohort. On a monthly basis, feedback and suggestions



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 297 Protocol to Lead Milieu As the milieu leader, you will need to ask two different people (by name) the following questions: Q: A:

What is the name of this group? Milieu.

Q: A:

What is the purpose of this group? To come together as a community to discuss business, progress, and concerns.

Q:

Does anyone have any business, progress, or concerns?

*Call on people by name as they raise their hands. Complete each of the following based on the day: MONDAYS: • Circle of Positives: Something about this past weekend TUESDAYS: • Circle of Positives: Updates on home independence, situational assessment, work, or school WEDNESDAYS: • Circle of Positives: Acknowledge or express gratitude or appreciation for their fellow milieu members or other important people in their life. • Quote of the week • Ask someone to volunteer for next week’s quote. THURSDAYS: Complete the following: • Circle of Positives: Something related to therapy • Song of the week • Ask someone to volunteer for next week’s song. • Review this week’s color. • Ask someone to pick next week’s color. • Ask people to please stay in their seats until they receive their schedules. *After everyone has finished, it is your job to dismiss the group. CTN Patient Introductions We request you mention the following information when you introduce yourself: 1. Your name 2. Type of injury 3. Date of injury 4. Program (e.g., Home Independence, Work/School Re-Entry, Transitional) 5. What you were doing prior to your injury (job, school, etc.) For example: Hi. My name is Paul. I had a stroke from an arteriovenous malformation, which is a tangle of blood vessels that burst in my brain on June 3, 2020. I’m in the School Re-Entry Program. Before my brain injury, I had graduated from high school and was planning to start community college. Please write your introduction below: (continued)

FIGURE 8.1.  Milieu protocol and scripts.

298

Transfer of Skills Sample Datebook and HIC Scores Announcement

My weekly datebook score is 95% for the week and 92% for the month. My weekly HIC score is 90% for the week and 85% for the month.

Sample Milieu Circle of Positives Script Week of:     /    /      Monday: Something related to the weekend: Example: “I cooked dinner for my family and saw a movie.” My update:  Tuesday: Update on home independence: Example: “I am getting better at using my datebook.” My update:  Wednesday: Gratitude: Example: “I appreciate John for asking me to join him at his lunch table.” My update:  Thursday: Something related to progress in my therapy: Example: “I am getting better at balancing speed with accuracy on my cognitive retraining tasks.” My update: 

FIGURE 8.1.  (continued)

are solicited concerning all individual and group therapies; this emulates other social circumstances where self-­advocacy, and having a voice and opinions, are valued (Klonoff et al., 2000). Milieu meetings are also utilized to assign “ambassadors” to new enrollees to foster a welcoming atmosphere. This is a mentorship or “buddy” program, whereby “seasoned” survivors volunteer to integrate newcomers by sitting with them during milieu sessions and at lunch, introducing them to other participants (and relatives), and assisting them in finding their way around the unit. They acquaint them with the CTN milieu culture and hearten them that intensive neurorehabilitation has merit. Therapists identify a “good fit” mentor, usually for injury etiology, personality style, similarity of aspirations, and other demographic factors such as gender and age. This protocol adds to the nurturing ambience. At first, another “upperclassman” stroke survivor volunteered to be Paul’s ambassador; 2 months later, Paul adopted the “pay it forward” attitude and mentored a new patient hoping to return to college. To augment spirits, positivity, and harmony, each day the leader initiates a “circle of positives” (see Figure 8.1 for the specifics and patient examples; see also Perumparaichallai & Klonoff, 2015). This allows peers to get to know one another by sharing their progress toward therapy objectives and serves to simulate “real-life” conversations and interests between friends, like weekend activities, music preferences, and gratitude toward peers. The color of the week breeds teamwork, important for friendships and life skills in general.



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 299

Each week, volunteers are solicited for the following week’s motivating quote, as well as color and song of the week; this opens the door for quieter or shier survivors to get involved. Culturally diverse contributions add to the richness of interchanges (Perumparaichallai & Klonoff, 2015). To bolster bonding during milieu, attendees’ birthdays are celebrated by providing a card signed by the other patients (and therapists) and singing happy birthday (Klonoff et al., 2000). As Paul’s mood and confidence improved, he became an active milieu member, describing it as a “bright spot in his day.” Embracing all facets was an invaluable bonding experience that foreshadowed good things to come in his social life. Perhaps the most profound and inspirational aspect of milieu are graduation rituals during “cake days,” to which the graduate and his or her support network, including the family and work supervisor, are invited. Verbal presents are provided by peers and clinicians in the form of congratulatory remarks and memorable anecdotes, following which the graduate (and sometimes a family representative) recapitulates personal impressions and triumphs with the milieu (see Klonoff, 2010, for a review). See Figure 8.2 for Paul’s “cake day” speech.

Socialization Group at the CTN General Overview and Goals Research and clinical experience at the CTN indicate that after ABI, survivors employ face-to-face meetings, phone calls, emails, social media, text messages, and letters for promoting friendships (Baker-Sparr et al., 2018; Flynn et al., 2019). Skill building in these arenas is embedded in our interventions implementing a person-­centered approach so that technology, training, and mastery are tailored to the patient (Baker-Sparr et al., 2018; ­Brunner, Palmer, Togher, & Hemsley, 2019; Ketchum et al., 2020). Maintaining a romantic relationship or re-­entering the dating world is also a priority for well-­rounded quality of life (Exell et al., 2021). Although beyond the scope of this chapter, the topics of dating, sexuality, and intimacy should be further explored in psychotherapy sessions. Resources include those available at https://msktc.org/tbi/factsheets/sexuality-­after-­traumatic-­brain-­injury; www.headway.org.uk/about-brain-­injury/individuals/brain-­injury-­and-me/dating-­afterbrain-­injury; www.biausa.org/brain-­injury/about-brain-­injury/adults-­what-to-­expect/ relationships-­after-brain-­injury; www.sralab.org/lifecenter/resources/dating-­and-­social-­ resources-­people-­disability (see also Sander, Sandel, Moreno, & Delmonico, 2022). Survivors, also at CTN, report greater comfort in making new friends with others who have sustained brain injuries, as they feel such individuals are “in the same boat” (Carulli et al., 2018; Salas et al., 2018; Ylvisaker, Urbanczyk, & Feeney, 1992). Nonetheless, treatment for all kinds of social relationships at CTN prioritizes a repertoire of positive social and cognitive communication behaviors, starting with acquisition (e.g., modeling, shaping, cueing, fading, reinforcing, role-play, and scripting), followed by stabilization and generalization to the real world (e.g., in vivo coaching, repetitive practice/habituation, and homework) using metacognition and executive functions (e.g., heightening social knowledge, awareness of social situations and others’ intent, as well as self-­questioning, monitoring, and behavior regulation) (Exell et al., 2021; Ylvisaker et al., 1992). CTN approaches are strength-­based and promote a culture of success, validation, and self-­advocacy (Kennedy, 2020; Ylvisaker et al., 1992).

300

Transfer of Skills

Robert Fulghum might have learned all he needed to know in kindergarten; but I think I learned all I need to know about my life post-stroke at CTN. Now, at this point, I feel I “get it,” so I’ve combined my thank-you’s with a list of 10 “to-do’s” to share with all of you—Robert Fulghum style.    First, have patience with yourself and others. The road to recovery can be long and twisted. You’ll make great gains; just not always in the time frame you were hoping for.    Second, surround yourself with lots of help or as they say here, “tiers of support.” My father, CTN buddies, outside newfound friends and classmates, are a huge part of my successes. I want to acknowledge Molly, my new girlfriend, for enriching my life.    Third, use your datebook. I always used something for high school, but now I use it for EVERYTHING.    Fourth, you can always improve! Look for the building blocks of change! Remember, your therapists help you move from “getting by” to true mastery at home and in the community.    Fifth, persevere. There were times I questioned the process here and myself and felt like it wasn’t worth it. But my therapists and my father turned around my thinking to “the best I can be.” From what I see, CTN patients persevere more than anyone imaginable.    Sixth, have fun! Like many of us, I liked recreational therapy, but initially thought it was a nice “break” from therapy. Ha! As Pam K. would say, “Everything is therapy.” To my recreational therapists, I’m not sure if I became an expert artist and gardener, but I learned to have fun again.    Seventh, find your “new normal.” All the education and life lessons have helped my “new normal” unfold, which I realize is an ever-evolving process, with natural ups and downs.    Eighth, challenge yourself. Thank you everyone for making my independence, driving, and getting back to school a reality. At first, I couldn’t really ever visualize that happening. Here, in the protective cocoon of CTN, there are opportunities for you to continue to push. Remember your therapists have your best interests at heart. Here, you can safely take the type of risks that lead to recovery.    Ninth, learn to accept yourself. A huge thank-you to my psychotherapist for working with me to realize that I am enough and that I can have a great life. And thank you again to my father who has always accepted me for who I am and celebrated each bit of the journey with me. I love you and I don’t know where I’d be without your massive support and guidance.    Tenth, continue to believe in yourself and a better future. “Trusting the process” and believing that “things take time” at first seemed like too big of a leap of faith and frankly just CTN buzzwords. BUT, I’ve come to see that putting one foot in front of another (literally and figuratively) has opened closed doors, first a crack and now wide open, letting the brightness of day into my life—I wish and believe the same for all of you!

FIGURE 8.2.  Paul’s cake day speech.

The purpose of socialization group is to provide patients across all CTN programs with education, training, and experience on topics relevant to cultivating and keeping relationships, including with peers and dating relationships. This is accomplished by increasing effective communication. Specifically, they are taught to move from a passive position of feeling abandoned by friends/significant others (Exell et al., 2021; Salas et al., 2018) to dynamic partners who embody empathy and other-­mindedness. Approaches incorporate didactics, peer discussions and guided feedback to one another, and role-play exercises in groups. This evolves to social interactions in less structured settings, such as lunchtime on the unit, and mini, mock “meet-ups” at nearby restaurants and coffee shops. Eventually, participants are assisted in generalizing new learning into personalized community connections, including when dating.



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 301

Structure and Process Socialization group has several subcomponents, including the maintaining and strengthening friendships and dating relationships module, and three application groups for more naturalistic opportunities: lunchtime milieu group, lunchtime chat group, and hang-out group. Figure 8.3 summarizes the purpose and etiquette for the socialization group module and three application groups. Role-play activities in structured and unstructured environs focus on initiation skills for greeting others and introducing oneself; nonverbal communication; active listening; topic selection; perspective taking; conversational balance/turn taking; entering and exiting verbal exchanges; and social problem solving. This group also stimulates insight into the social impact of survivors’ behavior and trains self-­monitoring to enhance social communication. This opportunity was a great fit for Paul.

Purpose 1. Understand how the effects of our brain injuries affect relationships and friendships in the community. 2. Increase effective communication behaviors by participating in discussions, video modeling, and role playing. 3. Improve relationships by having meaningful conversations and using appropriate social problem-solving skills in the community. Why Is This Important? • Strong social skills will help us make and keep friends and dating relationships. • Good communication pragmatics will help us be successful through various stages of our lives. Module • Maintaining and strengthening friendships and dating relationships Applications • Lunchtime groups: | Lunchtime milieu group | Lunchtime chat group • Community: | Hang-out group Group Protocol/Etiquette • Respect the opinions of others. • Use proper communication pragmatics (e.g., socially appropriate language, turn taking, perspective taking, openness to new ideas). • Be sensitive when giving feedback and avoid comments that are blunt, irritable, or inflexible. • Personal disclosures are confidential and should not be shared outside of the group. • A therapist has been assigned to each participant to collaborate and provide support (e.g., answer questions, help with note-taking, fill out socialization logs). Partner with him/her and remain open to feedback.

FIGURE 8.3.  Socialization group.

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Transfer of Skills

Protocols Maintaining and Strengthening Friendships and Dating Relationships Module

This module is scheduled for one or two 45-minute sessions per week for 8 weeks. This group is facilitated by a speech therapist and neuropsychologist or rehabilitation psychologist. Typically, there are four to eight participants with a 2:1 patient-­to-­clinician ratio. With input from the speech therapist and psychotherapist, they develop three or more personalized goals, which are regularly revisited at the outset of the group. Form 8.1 and Figure 8.4 offer a prototype for a personal goal sheet and Paul’s completed version of it, respectively. Appendix 8.1 on the book’s companion website contains didactics on developing and sustaining friendships and dating relationships; this material can be placed on PowerPoint slides and handouts for the group. As with other groups in the holistic milieu (see Chapters 3 and 5 as examples), some or all of the information can be incorporated based on participants’ needs and objectives. Group discussions and role-play exercises are vital to reinforcing concepts and building mastery. Topics pertain to losses and changes in friendships and dating relationships postinjury; who constitutes the current tiers of support; the essential social and emotional capabilities for establishing and preserving relationships; and potential places to meet people. Early on and at the end of the module to show growth, members complete a Tiers of Support and Social Spheres worksheet, which is regularly referenced relative to the application of principles (see Form 8.2 for a sample worksheet). Emphasis is on how to create new relationships by starting a dialogue, handling casual interfaces, and deepening bonds. Another aspect is the situational use of language, including the dos and don’ts of navigating tricky conversations with appropriate compensations and how to implement polite phrasing. Lastly, there is a section on how to best use text messaging, emails, and social media with friends. By the end of this module, survivors have a personalized toolkit of knowledge and strategies to broaden their social circles in worthwhile ways. In Paul’s case, with the extra tools in his toolkit, there was a blossoming of new friendships and a fresh dating relationship with Molly, whom he met through his church group. (See Figure 8.5 for his revived tiers of support and social spheres. Note that a colorized version of this figure and Form 8.2 are available at the companion website for the book.) Lunchtime Groups Applications

Peer interactions during lunchtime take two forms: lunchtime milieu group, offering informal observations during lunchtime for patients with mostly satisfactory social skills, and a lunchtime chat group for those requiring more remediation. LUNCHTIME MILIEU GROUP

Milieu members with better abilities and comfort level, who respond well to subtle reminders to maintain social appropriateness, are informally observed while they eat lunch, usually for up to 12 weeks, depending on strengths and challenges. Multidisciplinary therapists



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 303 Name:  Paul  Date:  1/20/21 During my participation in socialization group, I would like to work on the following goals: Initiation of conversation: • Share comments or encouraging words to build friendships. • Initiate conversation starters with group members. My Goal:  Use one of the conversation starters I have practiced at least three times. Active listening: • Maintain eye contact and nonverbally communicate that I am listening to what others are saying. • Summarize what a peer has said to ensure that I am listening. My Goal:  Nod my head and make eye contact when someone else is speaking. Turn taking/turn length: • Allow others the opportunity to respond before I do (take turns). • Refrain from talking about one subject for too long (hyperverbality). My Goal:  Wait and give others a chance to answer questions before I do. Maintaining conversations: • Avoid making too many comments about my own experiences (being egocentric). • Talk about topics that are of interest to my peers in the group (topic selection). • Ask questions of others that show I am thinking about them (perspective taking). My Goal:  Think ahead of time and ask someone a question about a recent trip, his/her family, or work. Nonverbal communication: • Sound friendly and smile when talking to group members. • Nod my head and maintain eye contact when listening. My Goal:  Smile and use friendly greetings at the beginning of at least three activities. Other:   Lunchtime Chat Group Log This week, I want to focus on:  initiating and maintaining conversations. To work toward this goal, I will:  use one conversation starter plus a follow-up question to learn more about others

during lunch this week. Comments:  I will also focus on my eye contact and active listening. Hang-Out Group Log I went to  a coffee shop   with a CTN peer. My goal was to

start and maintain a conversation about golf and demonstrate turn taking, and it went  well .  Score =  4   (1 = needs work; 5 = excellent). Comments:  I did a better job with turn taking and was able to ask a follow-up question to continue the conversation. FIGURE 8.4.  Paul’s Goals Sheet for Socialization Group.

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Transfer of Skills

Patient

Tier 1 1. Molly_(girlfriend)

Tier 1 Close people seen often

2. Robert (next-door neighbor) 3. CTN buddies (Tom, Matt, and Janet)

Tier 2 Friends seen weekly to twice per month

Tier 2 1. CTN graduate buddies (Danny and Zach) 2. Community college friends (Bill, Kris, and Stephanie)

Tier 3

Tier 3 Acquaintances and friends seen once a month

1. Golf partners (Jeremy and Aaron) 2. Molly’s friends (Patrick and Annie)

FIGURE 8.5.  Paul’s Tiers of Support and Social Spheres. From Klonoff (2014). Adapted with permission of Springer Nature.



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 305

are interspersed at the tables with a 3:1 patient-­to-­therapist ratio and provide hints for topic initiation and maintenance, for instance, hobbies, weekend activities, social events, and family happenings. Communication pragmatics skills are monitored, such as turn taking and active listening, as well as managing hyperverbality, tangentiality, egocentrism, and disinhibition. A built-in benefit is the chance for clinicians to model suitable social behaviors, while also keeping professional boundaries. Those participants with social interactions logs or other communication-­tracking devices receive input and corrective feedback from therapists present at lunchtime, especially when there are lapses into controversial or potentially offensive topics (e.g., religion, politics, violence). (See Chapter 4 for more information and Form 8.3 for a sample Social Interactions Log that Paul used daily for 6 weeks to assist with self-­monitoring and regulation.) Patterns are further addressed in one-on-one speech and psychotherapy sessions. An added layer to the lunchtime milieu group is socialization activities. Ideally, a patient works with his or her speech therapist and psychotherapist to launch this project on a rotating basis. First, a survey is circulated among milieu members about their music and game preferences. Next, a “CTN playlist” is generated and played during lunch. Conversation starters with selected follow-­up queries are posted in the lunchroom and referenced to spark discourse (see Figure 8.6). Fun recreation is available, like Trivial Pursuit, card games, Jenga, cornhole, and ladder ball. All of this serves to cultivate healthy and enjoyable interrelationships as a valuable precursor to community fellowship. Paul actively embraced these interventions and received peer and therapeutic input to refine his social interaction skills. LUNCHTIME CHAT GROUP

Patients needing more intensive socialization coaching participate in a structured lunchtime chat group. See Figure 8.7 for the structure of the group. Although empathetic, it is a flexible and naturalistic arena to refine social communication abilities. It is normally scheduled for one 60-minute session during the lunch hour for 5–6 weeks. To simulate realworld social gatherings, the group consists of four to six attendees as well as one speech therapist and psychotherapist. Video recordings are useful for later analysis. While eating lunch, participants first reread the group purpose (Figure 8.3), their personalized goal sheet (see Form 8.1 and Figure 8.4 for Paul’s goals), and their tiers of support and social spheres diagram (see Form 8.2 and Figure 8.5 for Paul’s rendition of it). They then receive education via a short video clip examining a specific component of social skills; this segment takes 10–15 minutes. Following that, they participate in peer interactions asking one another various prefabricated questions and sharing thoughts and feelings (see Figure 8.7). The last 10 minutes are spent digesting input from each other and the facilitators of what went well versus what areas to refine, which survivors write down for future reference. Personal aims are set for the week and reminders are put in their datebooks (also to review with their personal speech therapist, psychotherapist, and caregivers), especially before participating in social events.

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Transfer of Skills

What good movies have you seen lately? • Favorite/least favorite genres, directors, and/or actors and actresses • Favorite soundtracks Do you have a favorite music genre or artist? • Favorite song • First live concert • Artists you would like to see live Do you have a favorite sport? • Favorite athlete • Favorite team • Sports you play, have played, or want to play Do you have any pets? • Did you grow up with pets? • Is there a kind of pet you hope to get? Do you ever read for fun? • Favorite/least favorite genres, authors, and/or series Where did you go to school? • Favorite/least favorite subjects in school What was your first job? • How did you become interested in [subject]? • What’s your dream job? What hobbies/leisure/relaxation do you enjoy? • Have you picked up any new hobbies lately? • What are you working on in recreational therapy? • What is your favorite way to relax? • Have you tried any good restaurants nearby? • What is your favorite dessert? • What would a perfect weekend be for you? • Do you have a favorite holiday or holiday tradition? Do you like to travel? • Can you tell me about one of your favorite trips? • Where would you like to travel?

FIGURE 8.6.  Conversation starters.

Community Application HANG‑OUT GROUP

This opportunity moves clinic-­based socialization lessons to the community. Frequency of participation varies based on patients’ symptoms, but generally takes place two to three times. The mix should change to allow novel and eclectic exchanges. Ordinarily, two to three participants with one to two therapists (speech therapist(s) and a psychotherapist, as needed) decide a destination, using attained capabilities, including perspective taking, active listening, and social problem solving. Possible locations are a coffee shop, restaurant, museum, or park. Prior to leaving, each patient identifies and discloses one to two



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 307 Week Topic 1

Activities Video Clip: The Big Bang Theory—Please Pass the Butter www.youtube.com/watch?v=p1jzdSzGHnA

Active Listening

Video Discussion Questions: What does Sheldon miss? How does Amy’s mood change throughout the conversation? What could Sheldon have done to be a better active listener? What active listening strategies do you like? Therapist-Facilitated Conversation: Choose one or two active listening strategies to implement as you discuss one of the following topics with a peer: • Hobbies • Sports • The past weekend Group Processing: What went well? What could be improved? What goal would you like to set for the week? 2

Conversation Topic Selection

Video Clip: My Big Fat Greek Wedding—Aunt Voula www.youtube.com/watch?v=UfE8CA8EJWA Video Discussion Questions: Did Aunt Voula pick an appropriate topic? Why or why not? What was the couple thinking and feeling during the conversation, and how could you tell this? What are some appropriate topics to discuss with new acquaintances? Therapist-Facilitated Conversation: With a peer, generate one appropriate topic to discuss with a new acquaintance, and use it to begin a conversation. Group Processing: What topic did you discuss? What did you like about your conversation? What went well? What could be improved? What goal would you like to set for the week?

3

Conversational Video Clip: Defending Your Life—Tram Ride Turn Taking www.youtube.com/watch?v=GEsrQkS81QY Video Discussion Questions: Who is dominating the conversation? What do you think the man is thinking and feeling? What tells you the man is feeling this way? What strategies do you use to maintain balanced exchanges? Therapist-Facilitated Conversation: In groups of two or three peers, use conversation starters (see Figure 8.6) to talk with each other, keeping in mind the importance of balanced exchanges. (continued)

FIGURE 8.7.  Lunchtime chat group topics and activities.

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Transfer of Skills

Week Topic 3

Activities

Conversational Facilitator Strategies: Discuss any strategies patients are using to support appropriate turn Turn Taking taking in conversations. (continued) Group Processing: What strategies did you or your partner use to support balanced turn taking? What went well? What could be improved? What goal would you like to set for the week?

4

Entering and Exiting Conversations

Video Clip: Groundhog Day—Phil and Ned www.youtube.com/watch?v=7JEryd3Y_G8 Video Discussion Questions: How did Ned initiate the conversation? What were Ned’s feelings during the conversation? What were Phil’s feelings during the conversation? What did Phil do to communicate that he wanted the conversation to end? Would this conversation strengthen or weaken a friendship? Therapist-Facilitated Conversation: As a group, generate phrases to greet and start a conversation appropriately, such as “Hello, it’s good to see you. Is now a good time to talk?” Then create phrases to signal the end of a conversation, for instance, “It’s been great to catch up with you! I have to go, but I hope we talk again soon.” Facilitator Strategies: In groups of two or three peers, use the generated phrases, in conjunction with conversation starters (see Figure 8.6) to initiate, maintain, and end conversations. Group Processing: How did your conversations go? What strategy or phrase seemed most helpful to you? What went well? What could be improved? What goal would you like to set for the week?

5

Social Problem Video Clip: Ghostbusters—Louis and Dana Solving www.youtube.com/watch?v=D2CZLtoYLWw Video Discussion Questions: Prior to watching the video clip, ask, “What is the difference between an acquaintance and a friend?” Are Louis and Dana friends or acquaintances? Does Dana really want to accept Louis’s invitation, and what tells you this? What should Louis have done differently? Have you recently received or extended any invitations to “hang out” with others? (continued)

FIGURE 8.7.  (continued)



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 309 Week Topic 5

Activities

Social Problem Therapist-Facilitated Conversation: As a group, generate a list of appropriate activities to invite an Solving acquaintance to join. (continued) Provide group members with a list of simple scripts for extending, accepting, and declining invitations. Help individuals identify three activities they can invite an acquaintance to do from the group-generated list, and record this at the bottom of their list of scripts. Facilitator Strategies: Pair patients in groups of two and use the activity ideas and scripted phrases to practice extending, accepting, and declining invitations. Group Processing: How did your conversations go? What went well? What could be improved? Can you think of an acquaintance or friend you would like to invite to an activity? Write a memory assignment to discuss your idea with your psychotherapist and speech therapist.

FIGURE 8.7.  (continued)

objectives on the Hang-Out Group Log (see Form 8.1 and Figure 8.4 for Paul’s version of it) with the therapists and peers, based on prior education and practice in the lunchtime groups. During the experience, therapists provide real-time feedback. After returning to the clinic, patients self-­evaluate their interactions and discuss the experience with one another with therapeutic direction. Again, afterward, they establish personal goals for the week, with datebook cues to update their personal speech therapist, psychotherapist, and family. Through the course of exposure to psychoeducation, modeling, role-play exercises, and experiential learning in and outside of the clinic, Paul felt equipped to rebuild his social life. He and Max reported substantial gains in active listening, turn taking, initiation and maintenance of appropriate topics, and perspective taking. Paul’s social connections and sense of belonging expanded and deepened both with male and female friends and his wondrous romance with Molly. He expressed gratefulness for the rekindled insight, mastery, and self-­assurance.

Recreational Therapy at the CTN and Community Socialization General Overview and Goals Recreational therapy is an indispensable conduit to leisure and social activities and is available to all CTN patients based on needs and interests. See Chapter 5 for a description of community outings; these are germane forerunners to fruitful social experiences in the community. However, individual and small-group sessions also afford vital perks. The goals

310

Transfer of Skills

of recreational therapy are the rekindling of prior and/or new leisure and hobbies based on questionnaire data, experiential learning, and compensation training. Physical, cognitive, language, emotional, and communication pragmatic strengths and challenges are addressed, with an emphasis on safety awareness, creativity, and life satisfaction. Patients will also receive education about community leisure resources to expand their quality of life. Family involvement and ratification by medical providers is inherent to treatment benefits.

Structure and Process Patients generally participate in recreational therapy for 2–6 months depending on their neurological status and neurorehabilitation goals. Early sessions are one-on-one for 45 minutes, starting with completing a Recreational Therapy Leisure Interest Survey (see Form 8.4) that reveals leisure pastimes that pinpoint residual strengths and future quality of life. Ideas are solicited from the support network, so as to personalize choices based on culture, lifestyle, and other demographic and psychosocial considerations. During recreational therapy, survivors progress to small groups (two to four patients) for 45-minute sessions doing various games and leisure activities. Often new hobbies and leisure interests are introduced, especially when the brain injury precludes prior activities. Upcoming activities are inevitably tied to overarching program goals, such as home independence, school, and employment. Paul completed the Leisure Interest Survey; preinjury, he gravitated to higher-­risk outdoor sports, namely, downhill and cross-­country skiing, and waterskiing. As these were not considered medically safe or feasible, he expressed interest in golf, light hiking, and yoga with Molly. He was also open to exploring art, as he had developed an interest in sketching and painting in high school. The recreational therapist also obtained input from Max and Molly and provided community resources in their mutual interest areas, like concerts and sports events. During the participants’ treatment, recreational therapists also highlight community activities during individual and milieu sessions. Brain injury support group activities are accentuated, and flyers are provided to survivors and their families to spur follow-­through and purposeful involvements.

Protocol Recreational therapy nicely simulates get-­togethers with friends due to the leisure and socialization experiences. Typically, two projects are done, one of which is a gratitude gift to a family member or friend to reinforce compassion toward others. Challenges are identified and compensations are built to maximize performance and enjoyment (see Table 8.1 for a list). The recreational therapists monitor topics and interactions and provide input to help with communication pragmatics objectives, also filling out social interaction logs. They additionally liaise with the speech therapist and psychotherapist about observations and guidelines that are pertinent to outside friendships in relation to cognition, language, mood, and behavior. Paul first worked on a desert landscape painting for his father and then branched out to beading, creating a beautiful bracelet for Molly’s birthday. He focused



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 311

TABLE 8.1.  Recreational Therapy Project Skills and Compensations Sample home and community independence challenges

Sample compensations

Physical • Hemiparesis • Fine-motor coordination and dexterity • Vision • Right or left visual neglect • Hearing

• Other hand/arm as an assist • Adaptive hoop/needle threader for sewing • Automatic card shuffler • Built-up handle or grip on a paint brush or other art tools • C-clamps/weights to hold a project in place • Dot roller tape • Dycem® or shelf liner to hold projects in place • Upright easel • Any item to raise a project (e.g., a 3- to 4-inch step) • Slanted clipboard • Bright line at the edge of the right or left side of the page • Enlarged or darkened font • Good lighting (natural or clip-on table lights for focused lighting) • Magnifying sheets and lights • Seating placement due to hearing loss

Cognitive/language • Attention and concentration • Attention to detail • Visual scanning • Visuoperceptual skills • Executive functions (initiation, planning, problem solving, organization, impulse control, multitasking, decision making, followthrough) • Memory • New learning and recall • Safety awareness

• Start-up checklist • Working in a quiet area • Chart for session end times • Phone alarms • Checklist of procedural steps (with a photo, if needed) • Highlighters to mark important points or completed work • Line guides • Datebook and notes • Simpler projects • Medical Memory or a video on a smartphone • YouTube tutorials for games • Choice of safe leisure projects (e.g., no power tools)

Communication • Following verbal/procedural directions • Verbal expression/word finding • Communication pragmatics

• Notability • Professional behaviors log • Interacting in small groups

Emotional • Confidence • Mood (anxiety, depression)

• Practice • Coping techniques from psychotherapy (e.g., deep breathing) • Enjoyment of new/old hobbies

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Transfer of Skills

on compensations such as phone alarms for time management and his datebook and note-­ taking for memory. The Social Interactions Log (see Form 8.3) was completed during smallgroup interactions as a carryover of communication pragmatic principles he was working on. Caregivers are invited to attend these sessions periodically to learn how activities generalize to the home and community. This way, relatives can foster leisure and friendships for their loved ones. Both Molly and Max availed themselves of this opportunity and enjoyed learning how to play Rummy Q. At discharge, each patient completes a questionnaire (see Form 8.5 for a sample and Paul’s completed version in Figure 8.8). He or she is provided with a community resource folder based on interests and neurological strengths and difficulties. Examples of hobbies, adaptive leisure outlets, and social websites that facilitate socialization and meaningful undertakings are contained in Figure 8.9. Nationwide, survivors are encouraged to access their local brain injury support groups, sports, gyms, and other sources; low-cost and free leisure prospects; wellness and therapeutic apps. All material is reviewed with the support network to enable generalization. Family milieu agendas should incorporate these social .

Discharge Assessment

Paul’s Feedback

• Recreational/leisure activities you are • Gardening, yoga, light hiking*, golf*, sports events, concerts, doing now movies, sketching, painting

• New recreational/leisure activities you • Swimming*, games with my father, Molly, and friends (e.g., plan to pursue Cribbage, Sequence, Rummy Q), kayaking*, traveling, adaptive

skiing*

• What are the benefits you experience from leisure in your life?

• Fun, happiness, relaxation, and time with family, friends, and

• What do you enjoy most in life?

• Spending time with my CTN buddies, college friends, and Molly.

Molly

Trying interesting new community activities and being outdoors.

• Do you have a good understanding of • Yes, local hang-outs, the gym, campus activities and examples of available community resources in the area in which you live? • Have you found recreational therapy to be beneficial?

• Yes, it helped me a lot. I learned new projects and activities that I

got to show my father, Molly, and other friends.

Those activities that have a higher level of risk and require a physician’s release are denoted with an asterisk (*).

FIGURE 8.8.  Paul’s Recreational Therapy Discharge Questionnaire.



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 313 Activity

Resource

Listening to audiobooks

Audible.com Play.google.com OverDrive.com (also where to get the Libby app) Hoopladigital.com

Sports/adaptive sports

Google “city parks and recreation” or “city adaptive parks and recreation” www.moveunitedsport.org Ability360: http://ability360.org/sports (Phoenix, AZ) 360Outdoors: www.ability360.org/360outdoors (Phoenix, AZ) Arizona Disabled Sports: www.arizonadisabledsports.com (Phoenix, AZ) Arizona Adaptive Watersports: azadaptivewatersports.org Adaptive Sports & Recreation for Veterans: www. woundedwarriorproject.org/programs/adaptive-sports

Access pass to national parks

Article and application: https://lifehacker.com/people-with-disabilities-are-entitled-to-afree-lifetim-1832699399?platform=hootsuite store.usgs.gov/recreational-passes

Hiking

www.moveunitedsport.org www.alltrails.com www.traillink.com

Fishing

www.moveunitedsport.org

Art projects (e.g., latch hook, diamond art, painting, scrapbooking, card making, glass etching, jewelry beading)

Hobbylobby.com Michaels.com (classes and events) Amazon.com Shutterfly (online scrapbooking and card making) https://www. shutterfly.com

Drawing/sketching

YeDraw (step-by-step tutorials) www.youtube.com/channel/ UCP3BzSRYpgx2FPEATi88RKQ https://art.royalbrush.com/art-activities/sketching-made-easystandard

Cooking/baking/art

Pinterest.com

Sudoku

http://sudoku.com www.puzzles.ca/sudoku

Word Search puzzles

https://thewordsearch.com Paper/pencil puzzles; purchase a book from your local Dollar Store, Target, or Walmart.

Other cognitive games

Words With Friends Boggle With Friends Word Search: Play With Friends Crosswords With Friends Scrabble GO—New Word Game UNO Draw Something Classic Yahtzee with Buddies Dice

FIGURE 8.9.  Leisure activities and resources.

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Transfer of Skills

and leisure pastimes so that a regular routine and quality of life are established for the loved one with and without relatives (see Form 8.6 and Paul’s completed version in Figure 8.10).

Post‑Acute Neurorehabilitation for School Re‑Entry Adolescents and young adults with ABI prioritize the resumption of high school, community college, and higher education at the university level. They want a sense of purpose for academic and then vocational aspirations (Carulli et al., 2018). A self-­narrative encompasses a quest for knowledge, degree completion, social engagement, and transition to employment (Carulli et al., 2018). Limitations in speed of information processing, attention, reading, writing, word retrieval, mathematics, spelling, verbal comprehension and expression, working memory, learning and recall, and psychomotor skills, as well as executive functions, interfere with completion of schoolwork (Dinnes, Hux, Holmen, Martens, & Smith, 2018; Edwards & Parks, 2015; Jantz, Davies, & Bigler, 2014; Kennedy, 2020). Physical, emotional, behavioral, and social ramifications also should be managed (Edwards & Parks, 2015; Jantz et al., 2014; Klonoff, 2010; Wehman & Targett, 2014). Educators should avoid labeling students and instead get to know their needs and triggers, as well as provide a safe atmosphere in which to flourish (Wehman & Targett, 2014). Therefore, contact with school personnel should start early during neurorehabilitation and bridge medical and academic cultures (Kennedy, 2020; Wehman & Targett, 2014). A priority is the assessment of realistic education objectives; some rehabilitation entities have employed a college simulation experience, and/or online classes that are monitored closely by speech therapists (Klonoff 2010; MacLennan & MacLennan, 2008). Holistic milieu treatment aids patients and relatives in gleaning attainable academic aspirations through enhanced awareness, and acceptance of ABI-­related strengths and weaknesses. Targeted interventions, under the lead of speech therapists, focus on: • Building relationships with school personnel, also encompassing education and training • Developing individualized accommodations • Creating compensatory strategies, including assistive technology (AT) • Boosting study skills and test-­taking behaviors • Improving time management and decision making • Implementing stress-­management techniques • Overseeing symptoms and progress during school re-entry (Carulli et al., 2018; ­Ciccia, 2018; Edwards & Parks, 2015; Jacobs et al., 2017; Klonoff, 2010; Minton et al., 2017) For wide-­ranging material on school-­based interventions for students with ABI, see the publications by Jantz et al. (2014) and Kennedy (2017).



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 315 Name:  Paul 1. Social events for the week of  3/1/21 a. With  Bill and Stephanie

: , where  meet for lunch ,

when  after class on Wednesday, 3/3/21, 12:30 p.m.

, transportation plan  on campus

.

b. With  Molly , where  dinner and a concert , when  Friday 3/5/21, 6:00 p.m. , transportation plan  Molly to drive

.

c. With  Robert , where  a local hike , when  on Saturday 3/6/21, 9:00 a.m. , transportation plan  Robert to drive

.

d. Document in datebook:  Yes 2. Family events and commitments for the week: a. With  Dad , where  go to church , when  Sunday, 3/7/21, at 9:00 a.m. , transportation plan  Dad will drive

.

b. With  Molly , where  go to the gym , when Tuesday 3/2/21 and Thursday 3/4/21, 4:00 p.m.

, transportation plan  Molly will drive

.

a. With  Dad , where  primary-care physician for check-up

,

when  on Monday 3/1/21, 11:00 a.m. , transportation plan  Dad will drive

.

c. Document in datebook:  Yes 3. Upcoming medical appointments for the week:

b. Document in datebook:  Yes 4. Review school-related business for each class: a. Current grades and missing assignments:  “A” on my test; no missing assignments. b. Correspondence and feedback from instructors and/or school:  Good class participation. c. Upcoming due dates for assignments and tests:  Paper due on Tuesday; test on Friday. d. Plans for study and assignment completion:  Yes e. Arrangements for tutoring and accommodations:  Academic accommodations in place and going well. f. Other academic needs (e.g., registration, needed materials):  No g. Document in datebook and/or assignment tracker:  Yes 5. Socialization and school-related topics to discuss during CTN speech therapy sessions:

Discuss how I feel my communication is going with Molly and college friends. Review my recent grades and an   upcoming essay for English and get input on my outline.   a. Document in datebook:  Yes 6. Topics for psychotherapy sessions related to school, friendships, leisure, and quality of life:

Sometimes, I feel overwhelmed juggling my social life, school, and exercise schedule.     a. Document in datebook:  Yes FIGURE 8.10.  Paul’s Family Milieu Meeting Form.

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Transfer of Skills

Current Events Group at the CTN General Overview and Goals The rationale and protocol for current events group have been described previously (Klonoff, 2010; Klonoff et al., 2000). This venue has a dual purpose: to train socialization behaviors and as a “real-life” preamble to return to school and employment by remediating cognitive and language impairments. It combats becoming narrow or boring conversationalists postinjury, which then generalizes to all sorts of community settings because the survivor has an armamentarium of ways to connect with others (Klonoff, 2010). Specifically, this group tackles crucial cognitive/communication abilities, namely, reading, writing, verbal comprehension and expression, communication pragmatics, speech intelligibility, voice, verbal abstract reasoning, speed of information processing, attention, working memory, and new learning (Klonoff et al., 2000). Executive functions are also interwoven, for instance, decision making about which article to choose, as well as planning and organizing when and how to complete a write-up and follow time lines. This potpourri of skills is essential for academic functioning in high school, college, and a university as well as at work and is therefore most pertinent to participants in the School Re-Entry Program and some patients in the Work Re-Entry Program whose neurological sequelae and work demands match the aims of the group. Given Paul’s academic ambitions, this group was considered a valuable therapeutic steppingstone for him. Critical capabilities are initially practiced in the safety of the clinic by reading and grasping current events articles, writing a summary and opinion, explaining the material to peers, and comparing personal viewpoints versus those of other group members, incorporating appropriate communication pragmatic skills (Klonoff, 2010). The group also addresses proofreading, note-­taking, planning, and organization by utilizing their datebook systems, and implementation of AT in a more naturalistic environment. Once mastery is attained, there is a shift to community, social, educational, and employment opportunities.

Structure and Process Current events group is scheduled for one 45-minute session per week for 8 weeks (two 4-week cycles). This group is led by speech therapists, as it is highly language-­based. Mostly, there are four to five participants with a 2:1 patient-­to-­clinician ratio, based on the nature and severity of survivors’ ABIs. The interactive experience stimulates camaraderie and teaches topics that the patients can use during a variety of contexts, such as during car rides, at school with other students, and social or work gatherings. Knowledge of current events can decrease egocentrism and facilitate more natural conversation in a myriad of social circles. Proper communication pragmatics skills are taught, such as active listening, turn taking, reading social cues, and diminishing concreteness, disinhibition, bluntness, hyperverbality, and tangentiality (Klonoff, 2010; Klonoff et al., 2000). The experience catalyzes other-­mindedness, which helps retain friendships, as well as bolstering family, school, and workplace relations. Teamwork and academic abilities are emphasized by having one member describe an article while other attendees take notes. When disagreements happen, they are enlightened concerning



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 317

how best to convey dissenting thoughts in a socially acceptable and respectful manner; role playing is utilized to illustrate techniques (Klonoff, 2010). Notably, current events group also widens patients’ outlooks through metacognition, that is, flexible and analytical thinking, and self-­appraisal, which are mandatory for educational and vocational achievements. It is also an ideal setting for survivors to become comfortable in public domains using AT, including note-­taking apps (see Chapter 6 for more details). This bodes well for boosting scholastic and work performance and expanding socialization capabilities by heightening self-­assurance via upgraded communication options and effective compensations.

Protocol At the outset of every group, its purpose is revisited as well as group etiquette (see Figure 8.11). Attendees devise personal goals and discuss these with their peers on a weekly basis (see Form 8.7 for a sample worksheet and Figure 8.12 for Paul’s goals). During the first week, participants read and highlight an article for homework that has been selected by the speech therapist. They then write a paragraph explaining their opinion, which breeds preformulation and self-­initiative. During the group, patients proofread a facilitator-­written synopsis. The use of strategies to improve this ability is explored. Participants then state their viewpoints. They are expected to employ appropriate active listening and communication pragmatics skills like turn taking, concise and on-topic statements, and respectful

Purpose • Summarize articles and my opinion in writing and orally. • Practice important cognitive and language skills, such as understanding what I hear and read, remembering new information, and writing and explaining ideas clearly. • Plan and organize effectively to complete tasks. • Share information appropriately and self-monitor how I come across. • Practice friendship-building behaviors. Why Is This Important? • To keep up-to-date with the news and world events • To broaden my outlook • To prepare to return to community life (e.g., leisure, school, and work) • To have tools for developing friendships and relationships in the home and community Group Etiquette • Respect the opinions of others. • Use proper communication pragmatics (e.g., turn taking, perspective taking, openness to new ideas). • Be sensitive when giving feedback and avoid comments that are blunt, irritable, or inflexible. • Personal disclosures are confidential and should not be shared outside the group. • A therapist has been assigned to each participant to collaborate and provide support (e.g., answer questions, help with note-taking, fill out socialization logs). Partner with him/her and remain open to feedback.

FIGURE 8.11.  Current Events Group.

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Transfer of Skills

interactions. Peers are encouraged to incorporate tag phrases like “I understand you believe X, and I agree/disagree based on Y.” Cognition is addressed by remembering the content, working memory of in-the-­moment dialogue, as well as confirming comprehension and abstract thinking by utilizing read back and verify and concise encapsulation of core messages. Each week, participants are given memory assignments to converse about a current event with a communication partner, such as peers at lunch or during family dinners (Klonoff, 2010). They complete a Current Events Log (see Form 8.7 for a sample log and Figure 8.12 for Paul’s completed version of it) and then verbalize their foibles versus successes at the next meeting. At the end of the first session, the speech therapist proposes articles of potential interest, based on group contributions. Survivors then vote on a selection and write memory assignments to read and write summary and opinion paragraphs for the second meeting. Strategies for reading comprehension and writing are discussed. In the second week, each patient shares the article’s main idea. This addresses the capacity to concisely provide an outline and to see the big picture, which are instrumental for ameliorating hyperverbality. Camaraderie increases as group members provide each other with feedback, accept input, and self-­reflect on ways to improve. The remainder of the time is spent exploring viewpoints and the protocol from the first week is repeated to refine skills. During the third and fourth weeks, the attendees preselect their own article to learn ways to locate and expand knowledge of news affairs. They are encouraged to prescreen their selection with their speech therapist. Certain parameters are defined, namely, no disturbing topics, for instance, violence or suicide. However, given the likelihood that politics or religious material may emerge in real-life peer discussions, members can consider these. Each participant then writes two brief paragraphs, incorporating his or her stance. They each present their main idea. The group member with the topic that is voted most interesting then presents his or her synopsis. Conversing about brand-new ideas in real time allows more immediate thought generation, which generalizes to community experiences. Patients are discharged from the current events group after they have met their personal objectives for the group, which normally occurs within the 8-week cycle. Paul met his goals and later stated he saw carryover of this group to a college communications class.

Interventions for Return to School at the CTN General Overview and Goals The School Re-Entry Program at the CTN is designed to reintegrate students back to the classroom, whether that is a high school, community college, or university (Klonoff et al., 2000). It mitigates the disruption of academic pursuits and the associated social implications, in that survivors feel “left behind” by peers individuating from the immediate family and moving away to attend a community college, college, or university. Interventions focus on resuming school, assistance while enrolled in classes, and laying the groundwork for future attainments. This takes extraordinarily close collaboration with the survivor, treatment team, pertinent medical providers, caregivers, and school to ascertain readiness;



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 319 Name:  Paul  Date:  March 18, 2021 During my participation in current events group, I would like to work on the following goals: Participation and initiation (getting tasks started): • Initiate sharing comments or opinions related to the topic. • Initiate the use of compensations or assistive technology. My Goal:  Initiate a comment at least twice during the session and take notes in my Notability app. Comprehension and active listening: • Use the “read back and verify” strategy. • Ask questions when unsure about information presented. • Accurately summarize a peer’s opinion or statement to show I have been listening. My Goal:  Use the read back and verify strategy once and accurately summarize a peer’s opinion once

during each session. Turn taking/turn length: • Allow others the opportunity to respond before I do (take turns). • Keep comments short and on topic. My Goal:  Track the frequency of my comments using sticky notes; limit to three per session. Verbal expression (speaking): • Be clear and concise when commenting or asking questions to the group. • Accurately summarize the current event or my opinion to my peers. My Goal:  Use my compensation of creating scripts to make my summaries more concise. Communication pragmatics (style of communication): • Be open to the opinions of others. • Use appropriate and respectful language when disagreeing with a person’s opinion. My Goal:  Calmly express my opinion and monitor my inflexibility.



Skill building (academic and work-related): • Proofread my work and catch errors. • Take detailed notes on what my peers are saying. • Write a concise summary and opinion. • Use my datebook to create a plan and complete my assignments on time. My Goal:  Proofread and turn in my current event summary on time and with less than two errors. Other:   Get back to being more in touch with local current events so I can have more interesting conversations

with others. Weekly Current Events Log I talked to  my Dad  at dinner about the change in communication since COVID-19 and it went  well .  Score =  4

  (1 = needs work; 5 = excellent).

Comments: I used my notes to help me remember the details and my Dad said it was fascinating.

FIGURE 8.12.  Paul’s Personal Goals Sheet for Current Events Group.

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Transfer of Skills

set realistic objectives; access a wealth of supports; unearth cognitive, language, physical, communication, and interpersonal weaknesses; as well as teach compensations and study skills to optimize scholastic performance. A by-­product is carryover of social skills training to form deeper friendships in the academic setting. Patients returning to high school may receive neurorehabilitation in some form until graduation, pending medical necessity, insurance coverage, and/or services provided through the school. Community college, college, and university students may receive up to several months of therapy, with completion of at least one semester to be sure grades and study habits are sufficient for future success. Outcome research from this center reveals impressive return-­to-­school statistics, even up to 30 years after discharge, underlining the value of the holistic milieu approach (Klonoff et al., 2001; Perumparaichallai et al., 2020). Paul’s speech therapist took a leadership role and guided him toward academic success in his entrée to community college.

Structure and Process The first step back to the classroom is comprehensive evaluations, especially by speech therapists and neuropsychologists. Findings are combined into a holistic analysis, including the patients’ condition, emotional stability, and eagerness to restart educational endeavors. Of note, although concerted efforts are made to be sure they complete high school, it is not a guarantee of the requisite capabilities for education beyond high school. Therefore, using test results, a frank but compassionate heart-to-heart is held with the patient and caregivers regarding his or her aptitude for college-­level classes. Sometimes, additional healing is proposed before undertaking such a challenging enterprise. Nonetheless, because being productive is paramount postinjury, other viable interim alternatives are offered, for instance, interest classes at a local community college, trade school, and/or some form of employment (see Chapter 7 for work re-entry considerations). Once a survivor is deemed ready to re-enter high school or pursue postsecondary studies, fundamental language, communication, cognitive, emotional, and interpersonal impairments are remediated in conjunction with compensation development to enable scholastic success. Contributions from the family and treating physicians and collaboration about educational aims are continually interwoven throughout this process.

Protocols General Preparation to Return to School

Appendix 1.1 in Chapter 1 (see the book’s companion website) summarizes a broad list of assessment tools in all therapy disciplines used to make recommendations regarding school readiness. In particular, the Woodcock–­Johnson IV (Tests of Oral Language, Tests of Cognitive Abilities, and Tests of Achievement) (Schrank & Wendling, 2018) and the Nelson–­Denny Reading Test (Brown, 1960) inform therapists about the student’s academic capabilities. Figure 8.13 depicts a flowsheet of the collaborative and stepwise progression in working with the patient, support network, clinicians, physician(s), and relevant school personnel



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 321

Complete comprehensive evaluations in the areas of speech therapy, neuropsychology, occupational therapy, and physical therapy: • Ascertain strengths and challenges as they relate to school with the interdisciplinary team. • Obtain school transcripts and review academic history. • Determine the student’s current school status (new or returning student).

Collaborate with the patient, family, physician(s), and interdisciplinary team to determine school readiness. If not ready for school:

If ready for school re-entry:

• Address barriers and explore alternative goals.

• Educate the family about the basic return to school process. • Make an initial contact with the school and explore options. • Obtain a medical release from the physician to return to school with medical restrictions. • Provide the family and school with neurorehabilitation records. • Schedule a planning meeting with the school.

High School Re-Entry • Family initiates meeting with the Special Education Department to discuss:  Eligibility process  IEP versus 504 plans  Potential placement options  Available supports (e.g., a brain injury specialist)

College Re-Entry • Student initiates meeting with Disability Resource Services to discuss:  Eligibility process  Accommodations  Available supports (e.g., tutoring)

Collaboratively finalize school re-entry plan: • • • •

Determine placement and/or class setting. Select appropriate classes. Formalize accommodations, curriculum modifications (high school), and/or additional supports. Establish a plan for continued coordination between patient, family, school personnel, and outside providers.

Provide ongoing clinic-based treatment supporting school re-entry: • • • • • •

Assist with tasks to be completed prior to the first day of school (e.g., obtaining books). Provide ongoing therapies and compensation training. Coordinate with school personnel to maximize the student’s success. Continue to provide family education. Gradually delegate duties to the student and family to increase independence. Prepare the student for future academic courses through self-reliance on a personalized toolkit.

FIGURE 8.13.  Process to return to school.

322

Transfer of Skills

for those resuming high school or college. Key elements are current neurological status and realistic goal setting with “course corrections” based on actual grades. Importantly, prior history such as grade and marks achieved, attendance records, and the existence of prior learning or behavioral disabilities should be gathered, including access to preinjury school transcripts and writing samples, so that current suggestions are placed in the proper context. Collateral information and partnering with family members are imperative with respect to preinjury academic factors and postinjury expectations concerning timing, pacing, and attainable objectives (Klonoff, 2014). Fortunately for Paul, test results indicated he had the capability for community college material, albeit with provisos due to his AVM sequelae. Academic history indicated that Paul had no preexisting learning or behavioral problems growing up. He was a good student in high school with a GPA of 3.4 at the time of graduation, good attendance, and involvement in the school newsletter club. Transcripts and Max’s collateral input verified Paul’s self-­report. Paul stated he enjoyed school and was eager to continue his postsecondary education. Prior to his stroke, Paul intended to start at a local community college for completion of basic prerequisites and then transfer to a local university. He wanted to pursue a degree in English so as to continue his writing avocation and hopefully teach at a high school in the future. Max stated he was “gung-ho” for Paul to continue his mission. Paul and Max were relieved to hear that this remained a viable goal; however, they were cautioned that the pathway would merit new considerations. After obtaining medical input and releases, the speech therapist spearheads a collaboration between the patient, caregiver, and school. If necessary, an introductory letter is sent to pertinent school personnel employing user-­friendly language on the speech therapist’s role, the student’s strengths and injury-­related deficits, and intended accommodations (see Form 8.8). Educational options and available resources should be explored; possibilities include those available online or in person, or a hybrid. The number and type of classes are carefully decided, with a “start small and simpler, build on success” orientation. Our usual protocol is for the patient to begin with an online class during speech therapy sessions, as this affords easy oversight, clinical observations about learning styles, and strategy training for errorless learning (Wilson, 2009), competency, and confidence (Klonoff, 2010). The survivor is frequently advised to begin with electives and/or classes that capitalize on strengths and minimize deficiencies. Table 8.2 covers common academic challenges associated with various cognitive, language, physical, and emotional/behavioral sequelae after ABI and sample accommodations and strategies (for more information, see Edwards & Parks, 2015, Jantz et al., 2014; Kennedy, 2017). Table 8.3 (pp. 326–327) presents the same kind of information for Paul. In conjunction with speech therapy, individual and family psychotherapy are instrumental in educating the patient and the support network regarding the benefits of accessing all available academic backup. This often necessitates resolving hesitations and/or stigma with regard to disclosing the effects of the brain injury and wanting to opt for the “trial-anderror” go-it-alone versus the better “planning and prevention” pathway of lining up suitable supports (Kennedy, 2020). Catchy phrases like “The proof is in the pudding” and “Show me the marks” underscore the validity of increasing awareness, acceptance, and realism, in that decision making is predicated on actual scholastic performance (Klonoff, 2010). Paul’s



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 323

TABLE 8.2.  Brain Injury Sequelae, Academic Challenges, and Accommodations/Strategies Brain injury sequelae

Academic challenges

Examples of accommodations and strategies

Auditory comprehension

• Understanding lectures • Following instructions

• Copy of instructor’s lecture notes/ PowerPoint slides • Copy of peer’s notes • Recorded lectures (e.g., Mic Note©)

Reading comprehension

• Comprehending academic text • Following the syllabus • Accurately understanding written instructions and exam questions

• Text-to-speech software (e.g., Kurzweil©) • E-books • Audiobooks • Graphic organizers • Outlines and study guides • Highlighting

Written communication

• Taking notes and summarizing information • Generating ideas and organizing thoughts when writing essays or composing answers to test questions

• Text-to-speech software for proofreading (e.g., Prizmo Go©) • Graphic organizers • Speech-to-text software for writing (e.g., Dragon Naturally Speaking©)

Verbal communication

• Word retrieval • Speech intelligibility • Thought organization • Working memory

• Scripts • Lists of strategies to maximize speech intelligibility • Augmentative and alternative communication (AAC) • Notecards and outlines for oral presentations • Role playing

Attention

• Paying attention during lectures • Focusing while completing assignments and exams • Accurately completing assignments (e.g., math, writing)

• Rest breaks • Visual reminders for strategies • Clutter-free study space • Copy of instructor’s lecture notes/ PowerPoint slides • Copy of peer’s notes • Quiet environments for test taking • Double-checking work

Processing speed

• Keeping up with lectures and classroom discussions • Taking notes efficiently • Reading quickly • Finishing tests in the allotted time

• Recorded lectures (e.g., Mic Note©) • Copy of instructor’s lecture notes/ PowerPoint slides • Copy of peer’s notes • Audiobooks • Extra time for completing assignments and exams

Prospective memory

• Completing assignments by due dates • Attending scheduled meetings with teachers and peers

• Datebook • Alarms • Smart speaker • Family milieu meetings

Cognitive/language

(continued)

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Transfer of Skills

TABLE 8.2. (continued) Brain injury sequelae

Academic challenges

Examples of accommodations and strategies

New learning/ recall

• Retention of new academic material • Remembering course content also for examinations

• Note-taking system • Recorded lectures (e.g., Mic Note©) • Quizlet© app and website • Notecards • Outlines and study guides • Tutors • Labs, offices hours, and study groups • Self-questioning • Test-taking strategies

Communication pragmatics

• Maintaining socially appropriate behavior with peers and instructors

• Scripts • Social skills toolbox • Feedback from instructors and therapists

Initiation

• Starting homework and study sessions • Initiating accommodations/compensations • Accessing instructors and tutors during office hours

• Checklists/written protocols • Datebook • Alarms • Smart speaker • Recurring appointments with instructors and tutors

Follow-through

• Completing assignments in a timely manner • Adhering to plans to study or complete assignments

• Datebook • Alarms • Checklists/written protocols • Assignment-tracking system • Smart speaker • Study groups • Family milieu meetings

Abstract reasoning

• Comprehending higher-level concepts • Application of new ideas

• Tutoring and therapy to simplify concepts

Prioritization/ planning

• Deciding when and in what order to complete assignments

• Assignment-tracking system • Datebook • Family milieu meetings

Time management

• Selecting the correct number of classes at the best times • Estimating how much time to allow for specific tasks • Getting to class/meetings on time

• Realistic and balanced schedule • Conferring with family, therapists, and academic advisors to optimize schedule • Assignment-tracking system • Time-estimation guide • Campus transportation

Organization

• Keeping schoolwork accessible and organized

• Personalized system for notes, assignments, and school papers • Clearly labeled backpack, binders, and/or folders

Executive functions

(continued)



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 325

TABLE 8.2. (continued) Brain injury sequelae

Academic challenges

Examples of accommodations and strategies

Impulsivity

• Turning in homework and tests without errors • Proofreading or double-checking work prior to submission • Completing all the steps of assignments

• Strategies for multiple-choice tests • Schoolwork proofread by someone else • Double-checking work before submitting • “Stop and think” strategy

Multitasking/ complex attention

• Simultaneously listening to lectures, taking notes, and participating in discussions • Switching between tasks

• Recorded lectures (e.g., Mic Note©) • Copy of instructor’s lecture notes/ PowerPoint slides • Copy of peer’s notes • Minimizing unnecessary distractions • Juggling based on priorities

Problem solving

• Resolving common academic issues (e.g., making up missed work, advocating for accommodations, requesting clarification)

• Trusted advisors (e.g., family, therapists) • A designated place to record questions to ask instructors, peers, and/or therapists • Reference page with solutions to common problems

Gait and balance

• Navigating the campus and classroom

• Campus transportation • Early dismissal from class to allow more time • Considering location when registering for courses

Vision

• Seeing the board/PowerPoint slides • Reading textbooks and assignments

• Preferential seating and lighting • Enlarged font size • Assistive technology

Physical

Emotional/behavioral Self-regulation

• Emotional control

Frustration

• Tendency to get upset or abandon academic responsibilities

Depression

• Low motivation to engage in the academic process • Giving up easily

Anxiety

• Nervousness about academic performance; avoidance

Catastrophic reactions

• Upset about abilities and grades relative to preinjury levels

Awareness

• Overestimating abilities • Underestimating need for compensations • Student and/or family preference for a “wait and see,” rather than a proactive approach

• Attainable goals regarding number and type of courses (i.e., start small and simpler) • On-campus counseling • School/DRS counselor • Psychotherapist and psychiatrist • Trusted advisors (e.g., family) • Compensations and assistive technology • Learning from successes and failures • Study groups and other supports (e.g., tutors) • Mindfulness and relaxation techniques • Psychoeducation using grades and actual academic performance to guide decisions • Compensation training • Consideration of Plan A versus Plans B and C • Collateral input from rehabilitation graduates and their caregivers about academic re-entry

326

Transfer of Skills

TABLE 8.3.  Paul’s Brain Injury Sequelae, Academic Challenges, and Accommodations/Strategies Brain injury sequelae

Academic challenges

Examples of accommodations and strategies

Cognitive/language Written communication

• Organizing thoughts when writing essays or composing answers to test questions

• Graphic organizers

Verbal communication

• Thought organization • Working memory

• Scripts • Notecards and outlines for oral presentations • Role playing

Attention

• Paying attention during lectures • Focusing while completing assignments and exams • Accurately completing assignments (e.g., math, writing)

• Rest breaks • Copy of peer’s notes • Quiet environments for test taking • Double-checking work

Processing speed

• Keeping up with lectures and classroom discussions • Taking notes efficiently • Reading quickly • Finishing tests in the allotted time

• Recorded lectures (e.g., Mic Note©) • Copy of peer’s notes • Extra time for completing assignments and exams

Prospective memory

• Completing assignments by due dates

• Datebook • Alarms • Family milieu meetings

New learning/recall

• Retention of new academic material • Remembering course content also for examinations

• Note-taking system • Recorded lectures (e.g., Otter.ai app©) • Quizlet© app and website • Notecards • Outlines and study guides • Labs, offices hours, and study groups • Self-questioning • Test-taking strategies

Communication pragmatics

• Maintaining socially appropriate behavior with peers and instructors

• Scripts • Social skills toolbox • Feedback from therapists

Initiation

• Starting homework and study sessions • Initiating accommodations/ compensations

• Checklists/written protocols • Datebook • Alarms

Follow-through

• Completing assignments in a timely manner • Adhering to plans to study or complete assignments

• Datebook • Alarms • Checklists/written protocols • Assignment-tracking system • Study groups • Family milieu meetings

Executive functions

(continued)



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 327

TABLE 8.3. (continued) Examples of accommodations and strategies

Brain injury sequelae

Academic challenges

Prioritization/ planning

• Deciding when and in what order to complete assignments

• Assignment-tracking system • Datebook • Family milieu meetings

Time management

• Selecting the correct number of classes at the best times • Estimating how much time to allow for specific tasks

• Realistic and balanced schedule • Conferring with family, therapists, and academic advisors to optimize schedule • Time-estimation guide

Multitasking/complex attention

• Simultaneously listening to lectures, taking notes, and participating in discussions • Switching between tasks

• Recorded lectures (e.g., Mic Note©) • Copy of peer’s notes • Minimizing unnecessary distractions • Juggling based on priorities

• Navigating the campus and classroom

• Campus transportation

Anxiety

• Nervousness about academic performance; avoidance

Catastrophic reactions

• Upset about abilities and grades relative to preinjury levels

Awareness

• Overestimating abilities • Underestimating need for compensations

• Attainable goals regarding number and type of courses (i.e., start small and simpler) • Psychotherapist and psychiatrist • Trusted advisors (e.g., family) • Compensations and assistive technology • Learning from successes and failures • Mindfulness and relaxation techniques • Psychoeducation using grades and actual academic performance to guide decisions

Physical Gait and balance Emotional/behavioral

psychotherapy and psychiatry sessions focused on addressing his anxiety and catastrophic reactions (CRs) due to the perceived gargantuan gaps in his postinjury scholastic abilities relative to his preinjury standards. His acceptance and coping mechanisms about the pace and complexity of classes also needed tweaking; physiatry suggestions were helpful in this regard. Max attended conjoint sessions for psychoeducation and support and also utilized family group to commiserate and brainstorm with other parents of students re-­entering school after ABI (see Chapter 9 for more information). Although pathways for resuming high school versus college intersect, there are some significant differences as described next. HIGH SCHOOL

Patients returning to high school through the CTN is complex because of disparities in ­cultures, philosophies, and logistics (Perumparaichallai & Klonoff, 2015). Pertinent factors are:

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Transfer of Skills

• Variations in education systems, including experience and expertise related to ABI and availability of resources • Allocation of the student’s time between classroom instruction, school-­based services, and in-­clinic therapies • Partitioning of duties and roles for the clinicians, namely, a medical orientation versus school personnel who have an academic focus • Placement decisions regarding classroom type (e.g., mainstream, resource room, self-­ contained, or out-of-­district) (Wehman & Targett, 2014) • Criteria for the student’s eligibility for school support services (e.g., speech therapy) that are academically driven and directed toward access to the curriculum Resuming high school after ABI is normally driven by patients’ parents who then mediate between their sons or daughters and the Special Education Department. The CTN speech therapist tries to function as a consultant and advocates for the student’s needs, gives pointers to relatives and the school, and, with appropriate permission and releases, supplies applicable medical evaluations and documentation for special education services or accommodations based on the specific category of disability. Form 8.9 lists standard questions for parents meeting with high school personnel to elucidate a return to academic studies for their sons or daughters. The CTN speech therapist and other disciplines (a neuropsychologist/rehabilitation psychologist, physical and occupational therapists) try to attend the initial appointment with the student, parents, and designated members of the Special Education Department, such as a brain injury specialist, to provide input related to academic planning. CTN clinicians have a working knowledge about various governmental protections, such as the Individuals with Disabilities in Education Improvement Act (IDEIA; 2004) and the Americans with Disabilities Act (ADA; 1990), as survivors with moderate to severe brain injuries re-­entering high school should qualify for services through an individualized education plan (IEP) or a Section 504 plan (Jantz et al., 2014). During the school meetings, CTN clinicians suggest accommodations and/or modifications to the curriculum based on the patient’s evaluation results and clinic functioning. They guide placement options, such as homebound services, a full versus reduced academic schedule, online versus in-­person classes, tutoring, and summer school. The speech therapist also helps him or her develop scripts for speaking with education personnel, so as to teach self-­advocacy and practical problem solving. When the student resumes school, the CTN speech therapist is available to educate teachers and other staff, coordinate the procedure to obtain feedback regarding classroom performance, observe him or her in the classroom, and gain valuable insights concerning other issues to tackle in the clinic. COLLEGE

Given that there are no IEPs or 504 plans in college, the student has a much more active role in his or her college academics. The CTN speech therapist guides him or her when navigating a return to college and liaises with the Department of Disability Resource Services



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 329

(DRS) to choose classes, obtain and implement accommodations, and access resources, such as tutoring. The CTN clinician concurrently educates the support network on how to aid the student. The first step in college re-entry is the patient (or designee) authorizing school personnel to communicate with the family and treatment team. In this case, he or she launches the process utilizing CTN speech therapy in the realms of: • Completing applications • Creating phone call scripts • Navigating school websites • Locating the DRS on campus • Scheduling an appointment with an academic/DRS advisor • Ascertaining accommodations and available AT • Registering for courses • Obtaining books • Exploring financial aid • Investigating tutoring options Communicating/meeting with the DRS on community college and university campuses is expedient for facilitating the necessary accommodations, social and emotional support, and transition planning (Davies, Crenshaw, & Bernstein, 2019). The patient, family member, physiatrist, and speech therapist should coordinate efforts. This is especially significant since neurorehabilitation services are not routinely offered by colleges, so students are expected to initiate their accommodations and be proactive about obtaining tutoring and other assistance. Medical records should be provided, including evaluations germane to functioning at school. He or she should liaise with an academic advisor in combination with neurorehabilitation clinicians to produce a doable education plan to reach end goals, dictated by the aftereffects of the ABI, like an associate degree. Form 8.9 outlines standard questions when students meet with DRS to glean salient aspects of a successful college reintegration, which Paul also utilized when exploring his options. Therapeutic input is provided on the benefits of a full or partial schedule, eligibility for full-time equivalency, and online versus on-­campus courses. Obtaining AT (e.g., Kurzweil©, Otter.ai, Smart Pens) is prioritized prior to the onset of classes. Other considerations are ancillary service availability, namely, tutoring, alternative test-­taking options, on-­campus transportation and parking options, and preferred classes or professors. The student is given maximum responsibility (within his or her capabilities) to self-­advocate for accommodations and academic support (Kennedy, 2020). This exemplifies the generalization of the awareness, acceptance, and realism process; Paul was able to self-­advocate for the accommodations and strategies from Table 8.3 for an introductory English class. Functioning in the High School and College Environments

The speech therapist ordinarily meets with the student three times per week at the beginning of the school term, fluidly adjusting the frequency based on the number of classes, the number of semesters therapy is provided, and actual performance. Assistance gradually

330

Transfer of Skills

fades once the patient is more self-­sufficient. For those in high school, the speech therapist also intermittently liaises with school therapists, teachers, and tutors and encourages the survivor to do the same, to optimize academic achievements (Klonoff et al., 2000). The first step is to review scholastic expectations and the syllabus, mapping out a treatment plan. Ideally, up-front guidance is maximized to enable errorless learning and proficiency, also with compensations. Case in point, recorded lectures have proven superior to peers’ notes, which can be hampered by inconsistent attendance by the note-taker, insufficient accuracy and detail, and the slow distribution of notes. In addition to a collection of strategies and accommodations, speech therapists help the patient navigate online platforms (e.g., Blackboard, Canvas, and Google Classroom, as well as course websites and blogs). There is also a sampling of useful AT; for more information, see the journal Assistive Technology and the Association of Assistive Technology Act Programs (ATAP) website (www.ataporg.org). Other interventions (also applicable for Paul) are to: • Go over school notes and materials. • Apply organization methods. • Implement individualized study strategies. • Communicate with education personnel and other students. • Teach self-­advocacy also using scripts for inquiries. • Review approaches for group projects. • Practice tools for speech clarity. • Check grades and possible missing assignments. • Analyze compensations that are and are not efficacious and modify any accordingly. • Observe the patient taking a test and assess performance and time-­management abilities. • As needed for high school students, obtain weekly feedback forms and/or monthly rating scales completed by the teachers (and the patient, when appropriate) so as to refine collaboration (see Forms 8.10 and 8.11 for examples of each). • Educate his or her relatives during speech therapy and family psychotherapy regarding specific academic needs and scaffold their evolution as “coaches” through the return to school. For survivors transitioning to in-­person classes, a physical therapist can first accompany the patient beforehand, to assess and help with route finding, parking, mobility around the campus and in the classroom, and proper seating and positioning. Likewise, an occupational therapist might evaluate vision/visuoperceptual factors in the classroom. The psychotherapist and psychiatrist are integrally involved in maximizing confidence, self-­advocacy capabilities; proffering thoughts with regard to sleep schedules, and other elements of holistic health; promoting emotional stability and motivation, as well as troubleshooting any emotional and/or behavioral impairments, for instance, CRs, anxiety, depression, and social conundrums. Discipline-­related input about organizational items is solicited. Practical examples are the advantages of a backpack versus a rolling bag, and best options for notebooks, binders, and folder composition. Interdisciplinary feedback on time management is



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 331

also imparted to the survivor and caregiver, for example, avoiding overscheduling outside commitments and balancing the demands from the clinic, home life, academic pursuits, with socialization and extracurricular activities (on and off campus). Other than the physical therapist’s suggestion that Paul utilize campus transportation related to his ambulation challenges, the emphasis was on his emotional adjustment to being on campus, which was a combination of excitement and apprehension about being accepted by his peers. Referencing “lessons learned” about ways to disclose his brain injury and social skills tackled through psychotherapy, speech therapy, socialization group, and group psychotherapy eased his nerves and bolstered his emotional wherewithal. Both Max and Molly joined family psychotherapy sessions for psychoeducation and support about Phase 6 of the patient and family experiential models (PEM and FEM) of recovery, especially as related to the application of Paul’s social and academic CTN tenets to the “real world.” Often, speech and other relevant therapies are intensified during transitions, for example, shifting from online to in-­person instruction, advancing from one class to multiple, handling changes in majors or programs, or moving to a different in-state geographic location. In these scenarios, access to teletherapy between the CTN speech therapist and student (and his or her family) can be an important lifeline to ensure successful navigation into new scholastic territories. Interventions consist of checking the use of compensations (e.g., planning entries into the datebook for upcoming assignments and tests), general psychoeducation to the patient and his or her support network (e.g., reasons why performance is suffering relative to specific cognitive and language limitations), and remediation of glitches (e.g., confusion about and/or breakdown of accommodations, explanations for poor grades on quizzes and tests). When the student is actively taking classes, all therapists regularly collaborate with the support network about mutual observations and remedies. Specifically, psychoeducation ensures comprehension and application of strategies to all settings (the clinic, home, and school), other therapeutic recommendations, and scholastic expectations. Ways that caregivers can “cue, not do” tasks are explained, to stimulate self-­reliance. Other areas to be monitored include attendance, level of independence with compensation usage, the schedule for assignments and exams, and potential psychotherapy topics to ease the adjustment to busier schedules. Listing these categories on family milieu meeting forms streamlines communication and formalizes study schedules and routines, thereby maximizing the survivor’s follow-­through (see Form 8.6 and Paul’s version in Figure 8.10). A handy supplement is a CTN “study group” made up of several patients taking classes (Klonoff, 2010). Typically, this group meets weekly for 2–3 hours (generally on Friday afternoons). Participants tackle specific school assignments with assistance from a speech therapist and/or neuropsychologist. Students also can trade ideas regarding compensations, study techniques, and socially interact, which simulates school camaraderie (Klonoff, 2010). This venue paves the way for study group opportunities on campus with other classmates. Analysis of academic performance with the patient, relatives, and treating doctor(s) (e.g., physiatrist) based on grades and the nature and amount of help warranted, enables realistic planning for upcoming semesters. To prepare for postdischarge scholastic attainments, procedure checklists are fashioned related to course registration and accommodations for

332

Transfer of Skills

independent future use. Ultimately, through individual and group treatment, the student with ABI has honed awareness, acceptance, and realism and can be self-­reliant with the resources and strategies in his or her toolkit for both immediate or proximal academic endeavors as well as longer-­range, distal educational aspirations (Kennedy, 2020). Paul methodically planned his next semester composed of two classes, namely, firstyear algebra and a communications class. His friend Bill took the algebra class, too, and they formed a weekly study group. In preparation for his upcoming “cake day,” his speech therapist monitored his use of accommodations and compensations for optimized energy conservation, social behaviors, and study skills. Paul felt launched for academic success. Psychotherapy helped Paul, Molly, and Max sidestep the vicissitudes of slippage and flight into health in preparation for “cake day.” They celebrated the growth under their belts in their awareness, acceptance, and realism in key life domains. Paul and his tiers of support felt equipped for Phase 7 of the PEM and FEM! (See Form 8.12 for a generic PEM template and Figure 8.14 for Paul’s collaboratively constructed personalized version of Phase 7. Note that a colorized Form 8.12 is available at the companion website.)

CTN Graduation General Overview and Goals Graduation ceremonies represent the culmination of the toils of survivors across the spectrum of CTN programs and a chance for celebration of this momentous milestone with their families and the entire CTN staff. Others in their support network are invited, as well as hospital administrators and community members who are affiliated with the center, such as physicians, therapists across the continuum, referral sources, case managers, third-party payers, employers, and coworkers. It represents a festive, real-life socialization opportunity of translatable, acquired skills as well as closure and solidification of peer bonds (Klonoff, 2010).

Structure and Process Graduations happen semiannually (February and October) and are held in a large hospital venue to accommodate up to 200 people. Anyone who has successfully completed their objectives and “cake day” is invited, along with their tiers of support. It represents a time for reflection, both retrospectively about hurdles overcome as well as prospective plans and hopes for the future. The number of graduates range from 15 to 25. Importantly, current participants and their relatives are invited to attend, to foreshadow “the light at the end of the tunnel” based on others’ insights and achievements. The recreational therapists and department manager take the lead in planning the event, and the dietitian is responsible for choosing and deciding on light snacks and desserts. A therapist work group is assembled, and patients are solicited to assist with various tasks that have therapeutic value, such as addressing and preparing invitations and event-day greeters. A newsletter is prepared through the newsletter group, in which the graduating patients and selected clinicians contribute (see Chapter 5 and Appendix 5.2 on the companion website for more information).

333

》Some possibilities are: • Gradually add classes • Transfer to university 》Use my compensations and accommodations

Explore my Options for School

》Stay close to my father: • Remember he provides great guidance! 》Use my HIC 》Continue family milieu meetings

Find Support and Structure

》Take time to digest information 》Live a balanced, value-driven life 》Remember I have grit 》I am loved and loveable 》Embrace the future with lessons learned from awareness, acceptance, and realism

The Future Needs Me to be Present Now

》 Keep up with my gym exercises and my HEP 》 Use good sleep hygiene 》 Eat healthy foods

Remember my Healthy Habits

• Remember: 》Things Take Time! 》Trust The Process! 》I am comfortable in my own skin 》Confidence = Consistency + Competency

Acknowledge my Goals and my Accomplishments

FIGURE 8.14. Paul’s Individualized PEM Template.

》 Participate in brain injury support groups 》 Develop scripts as needed 》 Enjoy friends from CTN, school, and church

Build my Social Life

》Focus on proper communication pragmatics 》It’s a 2-way street!

Cultivate my Dating Relationship

》Psychotherapy and physiatry 》Attend CTN Aftercare Group 》Engage in adaptive sports and leisure

Follow Up with New Therapists and Resources

Paul’s Experiential Model of Recovery after Brain Injury ( P EM-2): Phase 7

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Transfer of Skills

Festivities begin at 4:30 P.M. with a 60-minute social hour, enabling mingling, informal social recognition of accomplishments, and partaking of hors d’oeuvres. Following that is a 1.5- to 2-hour ceremony encompassing guest speakers, therapists’ and graduates’ speeches, finishing with a slide show about the graduates. Just recently, the social hour was moved to after the graduation ceremony.

Protocol A subset of clinicians take ownership for planning and implementing the graduation. They partner with various survivors, as these are highly relevant and useful therapeutic activities (see Figure 8.15 for a breakdown). The overall emphasis is designing a joyous event, founded on teamwork among patients and therapists, and an uplifting and memorable social rite of passage. An agenda is developed for graduation day; a survivor aids in the formulation of this in conjunction with his or her therapist (see Form 8.13 for a sample). Recognition and tributes are the underpinning, encircling the graduate and family, clinicians, involved administrators

• Devise a time line for event preparation (examples): | Reserve the auditorium. | Contact catering. | Decide on the list of graduates. | Set time line for the newsletter group (see Chapter 5). | Prepare plaques and diplomas. | Set dates to send invitations and receive RSVPs: —Completed by the department manager and therapist work group. • Produce a guest list and addresses of hospital and community representatives: —Completed by the department manager and therapist work group. • Create designs for the invitations and front page of the newsletter by one or two patients in conjunction with a speech therapist. The themes are pertinent and “luvfesty.” • Choose snack foods: —Completed by the dietitian and department manager, with input from the therapy team. • Identify two or three outstanding persons (one laudable team member and one or two worthy community supporters) to receive plaques. • Select a standout patient to be the emcee and one exemplary family member to give short speeches based on team consensus. • Furnish therapeutic assistance by speech therapists and psychotherapists in writing 1- to 2-minute speeches for the emcee and patient graduates. • Create a slide show set to music selected by the therapists, based on pictures taken over the course of the year of patient graduates engaged in various therapy activities. • Assign therapists and patients as day-of-the-event facilitators to: | Set up the auditorium, including reserving front row seats for graduates, their families, and other patients who need physical assistance. | Be greeters. | Help during the social hour. | Clean up postevent.

FIGURE 8.15.  Graduation group protocol.



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 335

and physicians, the milieu, and other community believers. Based on a team consensus, one graduate is invited to be the emcee and deliver a welcome speech. Then the clinical director and department manager followed by a rehabilitation administrator welcome attendees and give a brief overview regarding holistic milieu treatment for those who may be unfamiliar with the model. Each staff member is then introduced, including front office coordinators and drivers who tirelessly transport our population. The clinical director and department manager then furnish an engraved gratitude plaque to one of our unsuspecting colleagues on a rotating basis, based on team nominations commending superlative talents and devotion. Appointed therapists then bestow a plaque to two or three community enthusiasts, for instance, case managers and employers. These champions have “gone the extra mile” for reintegration of patients, based on staff consensus. A preinvited family representative is asked to speak for a few minutes concerning the experience of helping a loved one recover from an ABI; this heartfelt depiction resonates with all caregivers and the general audience. Following this, designated clinicians deliver a brief introductory speech featuring background history, treatment progression, and accomplishments. The accolades of each graduate and his or her support network are underscored, and a diploma is presented to every graduate (see Form 8.13). Upon its receipt, each graduate gives a short speech “from the heart” depicting his or her arduous journey and acknowledging tiers of supports. See Figure 8.16 for Paul’s graduation speech. The evening peaks with a slide show depicting various memorable therapeutic activities graduates engaged in, both in the clinic and community. Typically, tears of joy and poignancy flow freely among all attendees, especially when recounting some of the excruciating pain and meanderings of the graduates, counterbalanced with their metamorphosis and heroic victories. After the graduation, a debriefing occurs with the team in a staff meeting, patients during a milieu session, and relatives in family group. Suggestions are recorded and upgrades are integrated into upcoming events. Some examples are the start and end times, incorporating quotes into the slideshow, and having the social hour after versus before the ceremony, to allow more time for socialization. Then, it is back to the daily hustle with renewed zest and vigor all around.

LE S SO N S LE A R N E D 1. Key elements of recovery and neurorehabilitation are enriching survivors’ interpersonal relationships, especially peer friendships, dating relationships, and re-­creating quality of life and productivity through leisure and school re-entry. Caregiver training remains central. 2. The milieu session is the “hub” of the holistic experience, infused with a “luvfesty” feeling, humanism, camaraderie, and joint purpose. It fosters the social, cognitive, and language capabilities and self-­assurance necessary for successful community reintegration. Survivors take a leadership role, display personal accountability, and participate in a daily “round of positives,” and the quote, color, and song of the

336

Transfer of Skills

Fellow patients, ladies and gentlemen, friends, family, doctors, and therapists: As we all know, life can shatter in an instant. Coming to CTN has been the hardest yet most rewarding thing I have done so far. When I came here, I was a lost soul. I was unaware of my challenges and viewed my existence with fear and uncertainty. Today, because of CTN, I am confident and ever hopeful. I see a bright future for myself academically and personally. CTN got me there through hard work, dedication, and occasional nudging! My family and community supporters also helped me heal and embark upon my new life. They each contributed a part of what I needed to remake myself. I have so many to thank: • Medical technology and the doctors and nurses who saved my life. • Other doctors who make sure my physical and mental health needs are met. • Therapists teaching me how to restore life skills and pursue my dreams. • Friends, new and old, who are there for myself and my family. • And teachers who have welcomed me back to the classroom with open arms. But without my father, none of this would be enough. Really, he’s the most important person to thank. Next to him is Molly. Without their endless love and patience, I’d never be where I am today. I have undying gratefulness, and hope to continue to make them proud through my words and actions. When you gather together all of these people, it becomes a patchwork quilt with many interwoven pieces that come together to cover me. Under this patchwork quilt, I feel supported, loved, and strong. I’ve begun to mend a colorful and sturdy life. I will also use it as my shield as I go out into the wider world now that I’m leaving CTN. Tonight, as I graduate and express my boundless gratitude, I know that the road to recovery is never-ending. But I’m proud that I have journeyed this far; with time, grace, and continued support, I know I will succeed.

FIGURE 8.16.  Paul’s graduation speech.

week to lift spirits. Ambassadors welcome new participants and the atmosphere is bonding. Birthdays and “cake days” add a celebratory flavor. 3. Socialization group provides education, training, and experience on topics pertinent to cultivating and maintaining peer and dating relationships. Steppingstone structured and unstructured (lunchtime) clinic-­based therapies and small community “hang-out” outings allow the generalization of core behaviors required for meaningful connections. Small-group projects and provision of community outlets during recreational therapy are fundamental for reconstructing fun leisure and social activities. 4. School re-entry interventions are for patients striving to reacclimate to their academic studies. Multidisciplinary assessments pave the way for clinic-­ based interventions, including a current events group that emulates social and preacademic skills and online classes. When timely, speech therapists collaborate closely with the student, relatives, treatment team, high school or college personnel, and physicians to ensure a smooth and effective transition to the



Neurorehabilitation for Socialization, Quality of Life, and School Re-Entry 337

classroom. Teaching self-­advocacy, compensation training, family education, and access to accommodations are prioritized for these momentous milestones. 5. Graduation from holistic milieu-­oriented neurorehabilitation is the culminating rite of passage whereby patients’ (and the families’/community support networks’) toils are commemorated by a festive gathering, sharing of survivors’ epic journeys, and presentations of well-­earned awards and diplomas. It epitomizes the triumphs, deep attachments, and power of the healing process.

FORM 8.1

Goals Sheet for Socialization Group Name:   Date:  During my participation in socialization group, I would like to work on the following goals: Initiation of conversation: • Share comments or encouraging words to build friendships. • Initiate conversation starters with group members. My Goal:  Active listening: • Maintain eye contact and nonverbally communicate that I am listening to what others are saying. • Summarize what a peer has said to ensure that I am listening. My Goal:  Turn taking/turn length: • Allow others the opportunity to respond before I do (take turns). • Refrain from talking about one subject for too long (hyperverbality). My Goal:  Maintaining conversations: • Avoid making too many comments about my own experiences (being egocentric). • Talk about topics that are of interest to my peers in the group (topic selection). • Ask questions of others that show I am thinking about them (perspective taking). My Goal:  Nonverbal communication: • Sound friendly and smile when talking to group members. • Nod my head and maintain eye contact when listening. My Goal:  Other:   (continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

338

Goals Sheet for Socialization Group  (page 2 of 2) Lunchtime Chat Group Log This week, I want to focus on:  To work toward this goal, I will:  Comments: 

Hang-Out Group Log I went to   with a CTN peer. My goal was to and it went .  Score = 

  (1 = needs work; 5 = excellent).

Comments: 

339

FORM 8.2

Tiers of Support and Social Spheres Name:___________ Patient

Date:___________

Tier 1 1. __________________ 2. ______________________ 3. ________________________

Tier 1

4. _________________________

Close people seen often

5. _________________________ 6. ________________________ 7. _____________________

Tier 2 Friends seen weekly to twice per month

8. _______________

Tier 2 1. _________________ 2. _____________________ 3. _______________________ 4. _______________________ 5. _______________________ 6. ______________________ 7. ___________________ 8. ____________

Tier 3 Acquaintances and friends seen once a month

Tier 3 1. __________________ 2. _______________________ 3. ________________________ 4. _________________________ 5. _________________________ 6. ________________________ 7. _____________________ 8. ______________

From Klonoff (2014). Adapted with permission of Springer Nature. From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

340

FORM 8.3

Sample Social Interactions Log Name:  Goal 1: Did I listen carefully? Did I avoid interrupting?

Time:

Goal 2: Were my conver­ sations balanced?

Goal 3: Did I maintain a pleasant demeanor?

Goal 4: Were my eye contact and nonverbal communi­ cation appropriate?

Goal 5: Did I avoid being selfcentered?

Date: Date:             Thera­ pists’ initials

Thera­ pists’ initials

8:15– Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA 9:00 A.M. 9:00– 9:45

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

Break

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

10:00– 10:45

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

10:45– 11:30

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

11:30– 12:15

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

Milieu

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

Lunch

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

1:15– Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA 2:00 P.M. 2:00– 2:45

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

2:45– 3:30

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

3:30– 4:15

Y / N / NA Y / N / NA Y / N / NA Y / N / NA Y / N / NA

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

341

FORM 8.4

Recreational Therapy Leisure Interest Survey Name:   Date:  Please  box(es) to indicate what leisure interests you liked in the past and/or currently; are interested in trying, and/or have participated in postinjury. The recreational therapist will review your answers with you and your family. Social/Cultural Activities

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Attending sporting events Ballet/plays Concerts Dining out Library/bookstores Movies Museums/galleries Playing an instrument Religious services Shopping Traveling Volunteering Other Sports (Circle “p” if you like to participate in the sport and/or “w” if you like to watch the sport.) Archery ( p  or  w ) Baseball ( p  or  w ) Basketball ( p  or  w ) Biking ( p  or  w ) Billiards/pool ( p  or  w ) Bowling ( p  or  w ) Cross-country skiing ( p  or  w ) Downhill skiing ( p  or  w ) Fitness training ( p  or  w ) (continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

342

Recreational Therapy Leisure Interest Survey  (page 2 of 4) Sports (continued)

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Football ( p  or  w ) Golf ( p  or  w ) Jet skiing ( p  or  w ) Jogging ( p  or  w ) Kayaking ( p  or  w ) Miniature golf ( p  or  w ) Running ( p  or  w ) Snorkeling ( p  or  w ) Snowboarding ( p  or  w ) Soccer ( p  or  w ) Swimming ( p  or  w ) Tennis ( p  or  w ) Walking ( p  or  w ) Water skiing ( p  or  w ) Yoga ( p  or  w ) Other Outdoor Recreation Boating Camping Fishing Hiking Horseback riding Hunting Mountain biking Nature walks Sailing Other High-Adventure Activities Amusement parks Karate (continued)

343

Recreational Therapy Leisure Interest Survey  (page 3 of 4) High-Adventure Activities (continued)

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Range shooting Rock climbing Skydiving Surfing Zip lining Other Creative Arts Calligraphy Card making Ceramics Complex coloring designs Diamond art painting Drawing Glass etching Jewelry making Latch hook Needle craft/stitchery Online scrapbooking Painting Pinterest Scrapbooking Sketching Other Home Activities Baking Cake decorating Cooking Gardening Home decorating Journaling (continued)

344

Recreational Therapy Leisure Interest Survey  (page 4 of 4) Home Activities (continued)

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Like Like Interested Participated (past) (current) in trying in postinjury

Notes

Listening to music Online news Pet care Reading (e.g., books, audiobooks, magazines, newspapers) Renting movies/streaming services Social media Television Other Games Cards Checkers Chess Crossword puzzles Jigsaw puzzles Kings Corners Monopoly Pictionary PlayStation Scattergories Scrabble Sequence Solitaire Sudoku puzzles Tablet games Video games Wii Word search puzzles Xbox Other

345

FORM 8.5

Recreational Therapy Discharge Questionnaire Name:   Date:  Discharge Assessment

Patient Feedback

• Recreational/leisure activities you are doing now

•

• New recreational/leisure activities you plan to pursue

•

• What are the benefits you experience from leisure in your life?

•

• What do you enjoy most in life?

•

• Do you have a good understanding of • and examples of available community resources in the area in which you live? • Have you found recreational therapy to be beneficial?

•

Those activities that have a higher level of risk and require a physician’s release are denoted with an asterisk (*).

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

346

FORM 8.6

Sample Family Milieu Meeting Form for Students Name:  1. Social events for the week of 

:

a. With , where  , transportation plan  when

, .

b. With , where  , transportation plan  when

, .

c. With , where  , transportation plan  when

, .

d. Document in datebook:  2. Family events and commitments for the week: a. With , where  , transportation plan  when

, .

b. With , where  , transportation plan  when

, .

c. Document in datebook:  3. Upcoming medical appointments for the week: a. With , where  , transportation plan  when

, .

b. Document in datebook:  4. Review school-related business for each class: a. Current grades and missing assignments:  b. Correspondence and feedback from instructors and/or school:  c. Upcoming due dates for assignments and tests:  d. Plans for study and assignment completion:  e. Arrangements for tutoring and accommodations:  f. Other academic needs (e.g., registration, needed materials):  g. Document in datebook and/or assignment tracker:  5. Socialization and school-related topics to discuss during CTN speech therapy sessions:

  a. Document in datebook:  6. Topics for psychotherapy sessions related to school, friendships, leisure, and quality of life:

   a. Document in datebook:  From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

347

FORM 8.7

Goals Sheet for Current Events Group Name:   Date:  During my participation in current events group, I would like to work on the following goals: Participation and initiation (getting tasks started): • Initiate sharing comments or opinions related to the topic. • Initiate the use of compensations or assistive technology. My Goal:  Comprehension and active listening: • Use the “read back and verify” strategy. • Ask questions when unsure about information presented. • Accurately summarize a peer’s opinion or statement to show I have been listening. My Goal:  Turn taking/turn length: • Allow others the opportunity to respond before I do (take turns). • Keep comments short and on topic. My Goal:  Verbal expression (speaking): • Be clear and concise when commenting or asking questions to the group. • Accurately summarize the current event or my opinion to my peers. My Goal:  Communication pragmatics (style of communication): • Be open to the opinions of others. • Use appropriate and respectful language when disagreeing with a person’s opinion. My Goal: 

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

348

Goals Sheet for Current Events Group  (page 2 of 2) Skill building (academic and work-related): • Proofread my work and catch errors. • Take detailed notes on what my peers are saying. • Write a concise summary and opinion. • Use my datebook to create a plan and complete my assignments on time. My Goal:  Other:   Weekly Current Events Log I talked to   at  about and it went  .  Score =  Comments: 

349

  (1 = needs work; 5 = excellent)

FORM 8.8

Sample Introductory Letter to School Personnel [Letterhead] [Date] Department of Special Education or Disability Resources Services [Name of school] [Address] Dear Mr./Ms.: I am a speech therapist at [Name of Hospital] working with [Patient Name]. [Patient Name] is anticipated to begin courses on [date]. [Patient Name] started at the [Name of Neurorehabilitation Program] on [date] secondary to sustaining a [state injury, e.g., traumatic brain injury]. He/she is currently a full-time patient, receiving interdisciplinary therapies, including speech therapy, physical therapy, occupational therapy, and neuropsychology under physician care. A detailed evaluation summary completed by [Patient Name]’s therapists is attached for your review. The [Name of Neurorehabilitation Program] team seeks to provide holistic, coordinated care. Your insights into [Patient Name]’s strengths and challenges would be highly valued. I am looking forward to collaborating with you to help support [Patient Name]’s academic success and to determine placement, possible supports, and accommodations. Considering [Patient Name]’s current cognitive, language, and physical status at our clinic, he/she would benefit from the following accommodations: 1. [Patient Name] has difficulty with [list deficit(s)], and therefore would benefit from [list accommodation(s)]. 2. [Patient Name] has difficulty with [list deficit(s)], and therefore would benefit from [list accommodation(s)]. 3. [Patient Name] has difficulty with [list deficit(s)], and therefore would benefit from [list accommodation(s)]. Please feel free to call me [phone number] at the [Name of Neurorehabilitation Program] should you have any questions. Sincerely, [Speech therapist name] [address] From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

350

FORM 8.9

Sample Inquiry Questions for School Re‑Entry Parents’ Questions for the High School Special Education Department   1. How do I initiate a request for a meeting to discuss the process for returning my son/daughter to school?   2. Is a brain injury specialist available through the school, school district, or the state Board of Education?   3. What documentation can I provide to help determine eligibility for services?   4. Will you need to complete additional assessments to determine eligibility and the appropriate placement for my son/daughter? How long does that process take and when might we hold the eligibility meeting?   5. What placement options are available within our district (i.e., homebound, online, in-person, or hybrid instruction; inclusion or self-contained or special education classrooms; pull-out academic support services; or out-of-district programs)?   6. What is the difference between an IEP and a 504 plan? Which would be better for my son/ daughter?   7. How will part-time attendance and/or other placements impact my son’s/daughter’s graduation pathway?   8. Is there a class focusing on study strategies or an after-school study hall program where my son/daughter can receive additional support?   9. How can we best communicate and receive feedback from the teacher(s) and support staff? 10. What accommodations are offered for parking and on-campus mobility? 11. What assistive technology is available through the school, and who will complete the training? 12. How do I request a future meeting if the need arises? Students’ Questions for Disability Resource Services   1. What documentation should I give you to determine my eligibility for accommodations?   2. What is the difference between the demands of an online versus an in-person class?   3. How would a reduced course load impact my scholarship and/or financial aid? What is the process for obtaining a full-time equivalency status?   4. Do you have a recommendation for a good “starter” class?   5. Are there any courses available on study strategies or college success?   6. What accommodations exist for parking and on-campus mobility?   7. What are my options for accessing an e-book, peer’s or instructor’s notes, and assistive technology?   8. Do you have someone on campus who would help me learn to use the assistive technology?   9. How do I communicate my accommodations to my instructors? 10. How do I request additional time or an alternative testing setting for assessments?

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

351

FORM 8.10

High School Feedback Checklist Name:   Date:  Dear Teachers: Thank you for all your efforts to help [Patient Name] be successful in your class. Your input and observations are highly valued as we try to help him/her with executive functions, memory, and learning across settings and situations. I am hopeful that this form will be an efficient and easy-touse tool, allowing you to communicate some of the things you observe. Please complete and initial this form at the end of each week and return it to [Patient Name]. Thanks so much for all your help! Homework/Assessments Tests/Quizzes/Assignments for This Week

Accommodations Used

Grade

Missing Work

Makeup Due Date

Comments

Performance impacted by (examples): † Attention to detail errors † Procedural errors † Memory † Comprehension challenges

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

352

High School Feedback Checklist  (page 2 of 2) Classroom Behaviors † Good test-taking strategies

† Impulsive, rushing to complete work

† Attentive

† Inattentive/distracted

† Open to assistance and requests for accommodations

† Difficulty accepting help and requesting accommodations

† Comments concise and relevant

† Inappropriate interjection of jokes, off topic

† Taking notes

† Not taking notes

Comments:

Instructor’s initials:          

353

FORM 8.11

Monthly High School Rating Scale Date:  Completed for:  Completed by:  Regarding some or all of the questions below, how would you rate yourself/this person in the following areas on a scale of 1–10? (1 = “unsatisfactory,” 5 = “average,” 10 = “outstanding”)  1. Work Pace/Speed:

1 2 3 4 5 6 7 8 9 10

Example: Does XX properly complete schoolwork at a good rate? Does he/she rush through work and make careless mistakes? Does he/she work too slowly and not have enough time to finish? Comments:   2. Accuracy:

1 2 3 4 5 6 7 8 9 10

Example: Does XX complete schoolwork and homework accurately? Does he/she follow the instructions accurately? Does he/she require assistance due to attention to errors in details? Comments:   3. Focus/Concentration:

1 2 3 4 5 6 7 8 9 10

Example: Does XX get distracted in the classroom? Does he/she require verbal prompts to pay attention? Comments:   4. Following Directions:

1 2 3 4 5 6 7 8 9 10

Example: Does XX follow verbal and written directions without repetition or reminders? Comments:   5. Interactions with Peers/Teachers:

1 2 3 4 5 6 7 8 9 10

Example: Is XX polite when talking to teachers? Get along with others? Use appropriate language and topics? Comments:   6. Endurance:

1 2 3 4 5 6 7 8 9 10

Example: Does XX appear tired? Does he/she run out of steam by the end of the day? Comments: 

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

354

Monthly High School Rating Scale  (page 2 of 2)  7. Asking Questions When Unsure:

1 2 3 4 5 6 7 8 9 10

Example: Does XX ask for clarification on assignments/schoolwork? Too often? Not often enough? Comments:   8. Accepting Feedback:

1 2 3 4 5 6 7 8 9 10

Example: Does XX openly accept feedback? Does he/she make excuses for errors? Does he/ she become easily frustrated? Comments:   9. Multitasking:

1 2 3 4 5 6 7 8 9 10

Example: Can XX complete two or more things at once? Can he/she listen and take notes at the same time? Comments:  10. Memory for Routine/Grasping New Concepts:

1 2 3 4 5 6 7 8 9 10

Example: Does XX need redirection to remember what he/she is supposed to be doing? Is he/ she able to learn new concepts and recall them on assignments and tests? Is he/she taking and using notes independently? Comments:  11. Planning/Organization/Time Management:

1 2 3 4 5 6 7 8 9 10

Example: Does XX turn in homework and assignments when they are due? Does he/she write assignments in his/her planner? Is he/she using his/her time appropriately in the classroom? Comments:  What accommodations/compensations is XX using? Other General Feedback:

Concerns:

Requests:

355

356

EM-2): Phase 7

[Patient first initial]

Experiential Model of Recovery after Brain Injury (

From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2-materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

Patient to choose border based on personal significance

[Patient’s Name]

Individualized PEM Template

FORM 8.12

FORM 8.13

Sample Graduation Program and Diploma [Name of Neurorehabilitation Program] Graduation Date Time

Welcome [Patient Name]

Opening Remarks [Department Administrator(s)]

Staff Introductions and (Surprise) Staff Plaque [Department Administrator(s)]

Presentation of Special Awards to Community Supporters [Therapists]

Family Perspective [Family Member Name]

Presentation of Diplomas Therapists to Patient Graduates

Slide Show Graduates Engaged in Therapeutic Activities

(continueed) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

357

Sample Graduation Program and Diploma  (page 2 of 2) The following program participants will be honored:

Graduates [List of Graduates]

The entire staff at the [Neurorehabilitation Program] would also like to acknowledge the contributions of the families and community supporters of the participants being honored this evening. Throughout the process of accommodating a neurological injury, there are many adjustments that must be made and hardships that must be endured. We believe these experiences are transformational for patients and their families. The rehabilitation successes presented here tonight reflect the dedication and perseverance of the patients, family members, friends, and community supporters alike.

Sample Diploma

[Neurorehabilitation Name] Awarded to

Patient Name For increasing Awareness, Acceptance, and Realism This [Date] This certificate represents the successful completion of the rigors and rituals of the [Name of the Neurorehabilitation Program], for which you are entitled to all the privileges and obligations thereto, namely to continue to strive for awareness while being acceptant and realistic about the progress you have made, the compensations you have learned, and the gains still to come.

[Department Administrator]

358

[Department Administrator]

9 Holistic Interventions for Families and Tiers of Support and Aftercare with Edward Koberstein and Sarah Rajda

C LI N I C A L V I G N E T TE Chapter 4 illustrated Rachel’s journey through the CTN insofar as her trials and triumphs related to her communication pragmatics and emotions. Understandably, her parents and older sister, by 2 years, suffered “collateral damage” from Rachel’s stroke and their topsyturvy existence. Luckily, they were excited to accompany her literally and figuratively through her neurorehabilitation travails and were essential tiers of support. They had been tackling Rachel’s predicament on their own beyond her acute rehabilitation care, translating to 12 years of “going it alone” in their seemingly never-­ending grind. They verbalized feeling like they were hanging by a thread after being the forever “operations managers of recovery” with no blueprint. They were caught up in a negative, overprotective cycle of doing everything for Rachel, but she resented their help, manifested by circular quarreling and defiance. She would then encounter more failures and her family would further “tighten the reigns.” Although Rachel had spent a few hours here and there unsupervised in the home, her parents were on “pins and needles” that her judgment would lead her to take unsafe actions, so they mostly curtailed this practice. Her sister felt guilty going out and having fun, knowing that Rachel was bored and lonely at home. Her family was burnt out from contending constantly with catastrophic reactions (CRs), CRs by proxy, and “walking on eggshells.” They were consumed by grief and loss and feelings of “what if?” They were plumb out of new ideas to make the situation viable for Rachel and themselves. This sad state of affairs became very evident to Rachel’s assigned occupational therapist and psychotherapist during her intake process, so they galvanized integrated, holistic efforts to reduce the burdens of her care in the home, buttressed by a burgeoning working alliance. Fortunately, all three relatives as “hidden patients” were extremely open and collaborative about home system modifications as they saw this as a “win-win” for Rachel’s self-­sufficiency and their collective mental and physical health. 359

360

Transfer of Skills

Rachel’s occupational therapist set to work by completing a home visit pronto and then personalizing an electronic Home Independence Checklist (HIC) for Rachel and her caregivers and a datebook system based on joint input. Together with the psychotherapist, Rachel and her family created a family milieu meeting form and eagerly met weekly to plan the week. Gradually, Rachel was assisted in increasing her periods of unsupervised time with a dos and don’ts list to help structure her time. Meanwhile, Rachel’s family embarked on conjoint sessions with Rachel and her psychotherapist and psychiatrist, weekly attendance at the family group, and periodic “relatives’ days” to immerse themselves in the neurorehabilitation process. Initially, her psychotherapist was the firewall navigating heated attacks and counterattacks between Rachel and her family (Wen-Yu Cheng, personal communication, February 8, 2022). They also sought out their own community counselors for additional help. Psychoeducation used the family and patient experiential models (FEM and PEM) of recovery (Klonoff, 2010) as guides. Integrative psychotherapeutic approaches tackled underlying feelings of sorrow and heartbreak fueled by ruminations about ambiguous loss and partial death. The family’s dominant feelings of anxiety, compassion fatigue, and fearfulness about life’s uncertainties transformed into emotional sustenance and zest for a fulfilled future for themselves and Rachel. In the bosom of a “safe haven,” family group provided the much-­needed lessons on respite and the sacred space of self-care. They remarked during the group that they now realized they could hold grief in one hand and posttraumatic growth in the other. The family’s inclusion in Rachel’s interdisciplinary therapies from her physical, speech, and recreational therapists, and the dietitian optimized Rachel’s functional recovery and quality of life, all of which was heartening to her support network. Although Rachel’s stroke precluded her from driving, 6 months later, with her physiatrist’s “green light” and the assistance of the social worker’s expertise, she moved close to the library where she worked, residing in a small studio apartment. Her occupational therapist continued home visits on a diminishing frequency as her mastery blossomed. Rachel’s sister and parents alternated in twice weekly visits and helped monitor her finances. By the time of program discharge, a therapist-­trained personal assistant was on-site twice weekly to help buttress Rachel’s self-­sufficiency through preplanning her week, a healthy diet, and reinforcing the use of all compensations, including in-home checklists. In part, through active embracement of the aftercare groups, Rachel and her family reveled in their meaningful gifts: reconstruction and learned optimism.

Holistic Interventions for the Support Network This chapter’s initial focus is on holistic training, education, and compensations for the caregiver and overall support network associated with optimizing patients’ functional independence across the spectrum of all CTN programs. These occur in the clinic as well as at home and include the HIC; datebook system; family milieu meetings; pointers for healthy eating habits to support the loved one’s brain injury recovery; and considerations regarding living alone versus with relatives. Psychological interventions are highlighted in the form of family psychotherapy and family group. Postdischarge patient and caregiver aftercare groups are described so as to promote maintenance of therapeutic accomplishments and competencies for the long haul. Interventions are pertinent to general family roles (spouse, parent, sibling,



Interventions for Families, Tiers of Support, and Aftercare 361

extended family, etc.). Further role delineation and applicable psychotherapy techniques, psychoeducation, and instruction under special circumstances can be found in Chapter 7 for parents with acquired brain injuries and in Klonoff (2014).

Caregiver Education for the Home Environment during Post‑Acute Neurorehabilitation The reality of sequelae of moderate to severe brain injuries is that it is not a “one and done” phenomenon with a permanent plateau within the first 1–2 years, but actually a chronic condition that is dynamic (see Hart et al., 2018). Interprofessional collaboration with an emphasis on emotional support, education, and training is a necessity for the survivor/family unit (Backhaus, Bergquist, Ibarra, & Kreutzer, 2022; de Goumoëns, Rio, Jaques, & Ramelet, 2018; Shapiro-­Rosenbaum et al., 2022; Wilson & Betteridge, 2019). This improves self-­ efficacy and motivation for neurorehabilitation and optimizes the patient’s recovery and autonomy (Backhaus et al., 2022; Hart et al., 2018). To this end, a central component of community integration is independent living and reacquisition of functional life skills (­Callaway, Sloan, & Willer, 2019). Examples include reducing supervision and enhancing agency and self-­sufficiency, improving safety awareness, as well as resuming chores in and around the home (Klonoff, 2010). A needs assessment should be conducted (Malec, 2016; Mateer et al., 2022); evaluation techniques include semistructured interviews (e.g., The Community Integration Questionnaire—­Revised [CIQ-R; Callaway et al., 2016]; Craig Handicap Assessment and Reporting Technique [CHRT; Whiteneck et al., 1992]; the Canadian Occupational Performance Measure [COPM; Law, 1991]; the Mayo–­Portland Adaptability Index [MPAI-4; Malec, 2005]); self-­report responses; and structured observations in the clinic and at home (Callaway et al., 2019; Fleming & Dawson, 2016; Klonoff, 2010, 2014; Mateer et al., 2022). Critical to successful treatment and outcomes are collateral feedback from relatives living with the patient or in proximity (Callaway et al., 2019; Fleming & Dawson, 2016; Klonoff, 2010, 2014). This also includes proper nutrition and weight management to offset obesity and new comorbid diagnoses, for example, hypertension, diabetes, and heart failure (Danahy, 2018; Dreer et al., 2018). Through a collaborative style, dose-based services should be established that target individualized and valued goals for basic (self-care), more complex (instrumental) activities in real-life settings, and overall physical health and well-being (Callaway et al., 2019; Cid, Acevedo, & Loewenstein, 2022; Dreer et al., 2018; Fleming & Dawson, 2016; Malec, 2016). A useful resource is Lagatree (2003) for a compendium of life skill checklists.

The CTN Approach to Caregiver Education for the Home Environment General Overview and Goals At CTN, the occupational therapists, with adjunct contributions from physical therapists, take the lead in assessing and formalizing survivors’ strengths, challenges, and compensations to build mastery and confidence with respect to activities of daily living (ADLs) and

362

Transfer of Skills

instrumental activities of daily living (IADLs). In addition, interdisciplinary input comes from neuropsychologists/rehabilitation psychologists who consider cognitive, perceptual, behavioral, and mood factors and speech therapists who evaluate potential language deficits, especially in instances of significant receptive and expressive aphasia. Both short-term (spanning 4–6 weeks) and long-term (at the time of discharge, up to 1 year) goals are identified through collaboration with the patient, his or her support network, and medical providers. (See Chapter 1 for specifics of the evaluation process.) CTN research has demonstrated the essentiality of increasing the family’s awareness, acceptance, and realism about the loved one’s brain injury, functional limitations, and establishing the best possible working alliance (Klonoff et al., 1998; Prigatano et al., 1994). This embodies new terminology, strategies, and coping techniques within the milieu culture (Perumparaichallai & Klonoff, 2015). Nevertheless, holistic therapies must ultimately be embedded in the survivor’s physical environs (Callaway et al., 2019; Klonoff, 2010, 2014). Protocols for useful teaching tools for the survivor and their support networks have been described elsewhere, specifically the HIC, a datebook system, and family milieu meetings (see Chapter 6; Klonoff, 2010, 2014). These are designed to compensate for difficulties with attention, memory, and executive functions by implementing structured routines and procedures that are effective for the patient, yet accessible and user-­friendly for the caregiver. Other common objectives are to institute home-based healthy eating habits and prepare him or her to live independently in the least restrictive circumstances, including financial self-­reliance (with varying levels of family support). Achieving home independence is data-­driven, with distinct and measurable indices and close liaison with treating physicians, including the CTN psychiatrist. This alliance enhances awareness, acceptance, and realism and undercuts the potential risks of “too much too soon” advancements versus impeded headway due to problems with fear, anxiety, and/or mutual dependency in the survivor/caregiver dyad.

Structure and Process Upon admission to CTN, patients are assigned a core team made up of an occupational, a physical, and a speech therapist; a psychotherapist (neuropsychologist or rehabilitation psychologist); and a recreational therapist. The dietitian is a valuable resource for healthy living as well as the psychiatrist, who stabilizes mood and addresses emotional barriers during recovery and neurorehabilitation. The social worker is instrumental for community and financial resources (see Chapters 2 and 5 for more details). Using a plan of care, the treating team prioritizes active and ongoing collaboration with the patient and relevant relatives throughout the course of neurorehabilitation, fluidly recalibrating interventions and goals to maximize home independence. Caregiver feedback is obtained via the initial occupational therapy appointment and a home visit vis-à-vis home independence. Given a relative’s unique and vital role and perspective, and the urgency of starting training, it is essential that he or she be present in all contexts. Once interdisciplinary, community integration goals are pinpointed, therapists initiate treatment in close tandem with support and instruction for the support network. All procedures emphasize errorless learning, procedural learning, and executive functions



Interventions for Families, Tiers of Support, and Aftercare 363

such as initiation, follow-­through, sequencing, planning, problem solving, organization, prioritization, judgment, decision making, and multitasking. Each therapist submits a weekly schedule request whereby he or she recommends the preferred frequency of patient and conjoint (with the family) sessions and pertinent group interventions. Typically, patients are seen three to four times per week in 45-minute sessions by the occupational therapist to address home and community goals. Supplemental home visits are 60–90 minutes long and the number is based on patients’ needs and goals. There is a domain-­specific auxiliary team presence at home visits, always with caregiver input prioritized. Medical recommendations and clearance by involved physicians is obtained at each stage. Session and home visit frequencies decrease as goals are met; often, patients receive services for up to 6 months.

Protocols Home Independence Checklists

The HIC has emerged as a beneficial tool so that survivors can become self-­sufficient at home by selecting relevant tasks, organizing them, and providing easy reference so as to avoid memory failures (Klonoff, 2010, 2014; Klonoff et al., 2003). It also gives a concrete stepwise representation and information for families as they witness their loved one’s progression from dependency to proficiency, self-­reliance, and empowerment (Klonoff, 2010, 2014). Importantly, the HIC lessens the caregiver’s workload and inculcates a normalizing “team player” atmosphere (Klonoff, 2010, 2014). The occupational therapist will liaise with the patient and primary caregiver(s) and together devise a first-step, shorter list that incorporates items that are most doable and hopefully palatable, so as to increase the likelihood of their completion. Germane domains on the HIC are self-care, household chores, therapy homework, exercise, leisure, and family milieu meetings. Then through collaborative input from the patient, caregiver(s) and therapist, the HIC evolves as treatment unfolds and independence builds. Figure 9.1 delineates skills that everyday undertakings tackle to aid neurological recovery. From this, a hard-copy or electronic grid HIC format is developed, based on treatment goals and preferences. The layout should be clear-cut for the patient and caregivers and include the week number of using the HIC and the dates completed. Form 9.1 is a sample Patient’s Paper HIC, and Form 9.2 is a version of it to be customized with relatives as they monitor the progress of their loved one in meeting the HIC. (See Klonoff, 2010, Figures 6.4 and 6.6; Klonoff, 2014, Figure 4.7, for patients’ and support networks’ HICs; and Klonoff, 2014, Figure 6.3, for a HIC for survivors with aphasia.) Color coding certain sections differentiates morning, afternoon, evening, weekly, and monthly responsibilities. Electronic versions are accessible through apps on Apple and Android systems (e.g., Reminders, Google Docs). Form 9.3 is a template for a patient’s electronic HIC; Form 9.4 is a duplicate for the caregiver to complete. Figures 9.2 and 9.3 (p. 366) represent Rachel’s and her family’s electronic versions, respectively, of these forms. Note the set-up is daily in the morning, lunch, and evening, in addition to weekly and monthly to-do’s. (Colorized versions of Forms 9.1 through 9.4, as well as Figures 9.2 and 9.3, are available at the companion website.)

364

Transfer of Skills

Strength and Proprioception: • Loading and unloading the dishwasher • Taking out the garbage • Making beds • Removing sheets, blankets, and pillowcases off beds • Loading the washer and dryer with clothes • Washing the floor • Vacuuming • Yard work Bilateral Coordination: • Washing dishes • Cooking (especially stirring and pouring tasks) • Sweeping the floor • Folding laundry • Pet care Visual and Cognitive Skills: • Following a recipe • Making and packing snacks/lunches • Putting away groceries • Unloading the dishwasher and putting away the dishes/silverware • Setting the table • Putting away laundry, matching socks • Sorting mail • Paying bills Fine-Motor Skills and Hand Strength: • Managing medications (e.g., filling a pillbox) • Cooking (e.g., opening packages or jars; cutting food) • Washing anything using a sponge or cloth that needs to be squeezed out (e.g., dishes, floor, windows, car) • Folding laundry • Tidying up the house • Watering plants with a spray bottle • Cleaning up and sorting materials Midline Crossing: • Dusting/wiping down tables or counters • Sweeping and mopping • Cleaning windows • Washing the car • Raking or shoveling

FIGURE 9.1.  Physical, visual, motor, and sensory skills associated with household tasks.



Interventions for Families, Tiers of Support, and Aftercare 365 Date: Week of 8/23/21 DAILY TASKS Tasks: MORNING

Sun.

Mon.

Tues.

Wed. Thurs.

Fri.

Sat.

Take a.m. medication.















Review electronic datebook in a.m.















Fill out sleep diary.















Complete breakfast log.





























Complete dinner log.















Review and update your datebook in p.m.















Pack lunch for CTN.















Journal about my day.















Take p.m. medications.







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





Sun.

Mon.

Tues.

Fri.

Sat.





LUNCH Complete lunch log. EVENING

WEEKLY TASKS Tasks: Meditate 4×/week.

Wed. Thurs.





Check the mail 4×/week.



Do strength/stretch/balance exercises 2×/ week.



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Do cardio/aerobic exercises 2×/week.

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Fill pillbox 1×/week.

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Clean bathroom 1×/week.

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Complete laundry 1×/week.

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Write out weekly expenditures 1×/week.

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MONTHLY TASKS Tasks:

Week 1

Refill medication prescriptions 1×/month.

Week 2

Week 3

Week 4

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Review expenditures and budget 1×/month. Signature: 

FIGURE 9.2.  Rachel’s Electronic HIC.

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Week 5

366

Transfer of Skills

Date: Week of 8/23/21 OBSERVE ALL TASKS AND NOTATE ON THE GRID DAILY TASKS Tasks: MORNING

Sun.

Mon.

Tues.

Wed. Thurs.

Fri.

Sat.

Take A.M. medication.

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Review electronic datebook in A.M.

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Fill out sleep diary.

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Complete breakfast log.

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Complete dinner log.

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Review and update your datebook in p.m.

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Pack lunch for CTN.

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Journal about my day.

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Take P.M. medications.

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Sun.

Mon.

Tues.

Fri.

Sat.

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LUNCH Complete lunch log. EVENING

WEEKLY TASKS Tasks: Meditate 4×/week.

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Wed. Thurs. 

Check the mail 4×/week.

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Do strength/stretch/balance exercises 2×/ week.

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Do cardio/aerobic exercises 2×/week.

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Fill pillbox 1×/week.

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Clean bathroom 1×/week.

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Complete laundry 1×/week. Write out weekly expenditures 1×/week.

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MONTHLY TASKS Tasks:

Week 1

Refill medication prescriptions 1×/month.

Week 2

Week 3

Week 4

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Review expenditures and budget 1×/month. Signature: 

FIGURE 9.3.  Rachel’s Caregivers’ Electronic HIC.



Week 5



Interventions for Families, Tiers of Support, and Aftercare 367

CTN therapists help to navigate interference by cognitive difficulties (e.g., attention, comprehension, procedural memory, speed of thinking, initiation, sequencing, follow-­ through, visual scanning, flexible thinking); physical factors (e.g., hemiparesis, ataxia, balance, or fatigue); and/or attitudinal, mood, or behavioral issues (e.g., frustration, feeling overwhelmed, decreased motivation, excessive dependency) to maximize HIC usage. Relatives are thoroughly educated on the nuances of the HIC with regard to the content and protocol. With patients’ significant executive system dysfunction, caregivers should provide guidance, such as verbal reminders, and operate as “auxiliary frontal lobes” (Klonoff, 2014), at least until the patient can be more self-­directed. Families are educated to “cue, not do” the duties. They monitor the “do it, mark it” rule and caution their loved one to avoid “prechecking” the task before it is actually completed and/or “back-­checking” items that were accomplished, but not properly marked immediately afterward (Klonoff, 2010, 2014). Caregivers learn that more often than not, breaking the sequence results in their loved one’s mistakes from memory lapses. To promote mastery, the percentage of task completion is tallied each week by the occupational therapist for the paper and electronic versions. Beginning expectations are approximately 70% to foster a learning curve (Klonoff, 2010). Patients report these scores in the daily milieu session to cultivate accountability and edification for peers, as they are asked to share upcoming strategies to improve low scores. Performance is also regularly reviewed with the support network, including external case managers and medical personnel, to keep them abreast of the learning curve and/or lapses. To stimulate “errorless learning,” at first, usually the primary caregiver signs off on the HIC. As the survivor acquires know-how and confidence (characterized by scores in the 90–100% range), signoffs are discontinued predicated on consensus between the patient, family, and core therapy team (Klonoff, 2010). With competent execution of either form of the HIC, there can be migration to a list layout in the paper or electronic datebook. Ultimately, consistent, independent completion of the HIC bodes well for higher-­level objectives, including a return to school and/or competitive employment. Datebook Training and Family Milieu Meetings

Datebook usage is a prerequisite for the survivor’s long-term successful community reintegration (Klonoff, 2010, 2014). See Chapters 3 and 6 and Klonoff (2010, 2014) for more details regarding “low-tech” paper and pencil and “high-tech” electronic versions, along with caregiver training procedures. Suffice it to say, this is vital for long-range backup, especially once patients complete their neurorehabilitation and are at risk for slippage and flight into health. This entails regular family appointments with core team members and the patient, for example, the speech and occupational therapists, and psychotherapist to learn about unique properties, supplemented by general information provided during family group (see below). As has been suggested previously, family members like to adopt a similar datebook system for mutual consistency, follow-­through, and accountability. It also normalizes its benefits so that survivors feel less stigmatized (Klonoff, 2014). Family milieu meetings are structured, regular get-­togethers to converse about suitable duties, activities, dialogue, needs, roles, troubles, and even disagreements (see Form

368

Transfer of Skills

9.5 for a generic agenda and Rachel’s version of it in Figure 9.4; Chapter 8, Figure 8.10; see also Klonoff, 2010, p. 145, and Klonoff, 2014, pp. 140–141, for other samples). Family milieu meetings are invaluable for coordinating routines as well as enabling a loved one to feel integral to home life. Generating an agenda is a joint endeavor between the patient, primary caregiver(s), and psychotherapist, with adjunct input from speech and occupational therapists. The topics are personalized and often pertain to weekly phone calls/emails, household tasks, meal planning, exercise, medical appointments, social events, finances, school and work responsibilities, and topics for upcoming psychotherapy appointments. Primary caregiver adults attend, and if helpful, children join for a portion to consolidate plans and add cohesiveness. This larger family forum is effective for brainstorming and allocating age-­ appropriate chores and responsibilities to children, even using a simplified version of their own HIC. The support system should empower the patient to lead the discussion, also allowing sufficient time for note-­taking in his or her datebook for suitable follow-­up. This is a prototype for creating two-way street communication, reciprocal relationships, and family harmony, thereby rebuilding everybody’s sense of self-­efficacy and welfare (Klonoff, 2010, 2014). Healthy Eating

Education by a dietitian on the importance of proper nutrition and hydration is interwoven in the CTN holistic milieu model (see the “Healthy Living Module” section in Chapter 3). Hence, a focal area of instruction is healthy eating; this is especially salient when a loved one lives with the family, as shopping, meal planning, and eating habits are conglomerated. Physical well-being is a precursor for everyone’s optimized emotional and functional status. Figure 9.5 and handouts (e.g., Headway, n.d.) summarize materials the dietitian imparts to relatives and patients in conjoint sessions. Typically, there is coordination with the occupational therapist for carryover to compensations, the psychotherapist for emotional influences, and education is imbedded in family group. Home Visits, Unsupervised Time, Personal Assistants, and Transition to Living Alone

A home visit is normally performed during the first 2–3 weeks of the evaluation period. The premise is the necessity to have the patient demonstrate skills, rather than rely only on self-­report. It is mandatory for the primary caregiver(s) to weigh in with collateral feedback. Joint involvement sets the stage for education and training. Home visits are especially critical for survivors newly discharged from an inpatient neurorehabilitation setting with 24/7 supervision. Although occupational therapists take the lead, other clinicians participate based on medical referral queries. This includes a physical therapist related to motoric factors such as ambulation and climbing stairs; a speech therapist when there are profound communication difficulties; and a neuropsychologist/rehabilitation psychologist to observe family dynamics. Figure 9.6 lists generic domains the home visit addresses that are also relevant to unsupervised time; this was additionally used for Rachel’s initial home visit. Important aspects



Interventions for Families, Tiers of Support, and Aftercare 369 Name:  Rachel  Date:  8/22/21 1. List phone calls, emails, and other to-do’s for the week: Schedule my labs and gynecology appointment; send an email to Samantha regarding my gratitude letter to Bubbie; plan lunches.

1a. Who is responsible? I am responsible for scheduling my medical appointments; I will email Samantha; Mom and I will work together on planning lunches on Sunday.

  Document in datebook. 1b. What information is needed? Lab order from my doctor; datebook for scheduling; lunch menu handout from my dietitian.

  Document in datebook. 1c. Create a script: Yes, for my lab and doctor’s appointments.

  Document in datebook. 2. Set times for my Home Exercise Program (HEP)—cardio portion in the pool: HEP times are set up in my datebook.

  Document in datebook. 3. Check in about the Home Independence Checklist (HIC)—if there are snags: Journaling has hit a snag. Will try to incorporate a bedtime routine.

  Document in datebook. 4. Spot-check datebook for completion and avoidance of forwarding assignments (limit = 3/ week): First time met my limit of forwarding no more than three assignments.

5. Review Rachel’s

and parents’

schedules (including social events and holidays):

Will fill out absentee slips from CTN for Rosh Hashanah and Yom Kippur. Plan to go grocery shopping on Tuesday.

  Document in datebook. 6. Discuss finances/budget: My parents and I will work on a budget for SSI payments on Sunday.

  Document in datebook. 7. Topics for next psychotherapy appointment: Emotional/impulsive component to eating. Show my psychotherapist my family milieu forms.

  Document in datebook.

FIGURE 9.4.  Rachel’s Family Milieu Meeting Agenda.

370

Transfer of Skills

include safety awareness, home modifications, adaptive equipment, functional compensations, energy conservation techniques, emergency preparedness, and community mobility (Reilly, n.d.). The Supervision Rating Scale categorizes the level of requisite support and is useful for the support network and loved one to readily refer to (Boake, 1996). (See also other resources on home visits from local brain injury associations; Seel et al., 2016; www. thiscaringhome.org.) Data from the initial home visit inform content included in the HIC, safety specifications and restrictions in and around the home, workarounds, as well as functional home designs (Reilly, n.d.). Follow-­up home visits are conducted to update objectives and recommendations; this translates to modified HIC responsibilities. Through mutual dialogue that includes the patient, and guidance by the therapists and physicians, the caregiver can ascertain the “have to’s/non-­negotiables” for close oversight related to the loved one’s safety and wellbeing, like medication and cooking, versus the “can do’s/negotiables” of more leeway in carefully spreading one’s wings, also known as “dignity of risk” (Klonoff, 2010). Crafting a “dos and don’ts” list is a good idea (see Form 9.6 for a sample template and Figure 9.7 for a version of it as customized for Rachel).

Factors after Brain Injury That Affect Weight Management • Memory such as forgetting what/when the patient ate • Decreased sense of smell and taste • Reduced sense of satiety • Medication side effects • Less physical activity • Mood factors like anxiety and depression • Insufficient structure in the day • Poor planning and then overeating • Social isolation and decreased quality of life Suggestions • Follow the 80/20 rule: It is what you eat most of the time that counts! • Engage in interval eating: Eat evenly spaced meals and snacks during the day. • Do not skip meals. • Focus on “lean and green” produce. • Remember that glucose = brain food. • Consume a balanced diet, with adequate protein, fruits, vegetables, whole grains, low-fat and non-fat dairy, seafood, and nuts. • Supplement with protein snacks. • Water is best to drink; aim for 64 ounces per day. • Practice moderation. • Be mindful of environmental control: Keep unhealthy, bulk foods out of the house. • Avoid falling prey to restaurant “upselling,” as quantities are bigger. • Limit added sugars, saturated fats, and salt intake. • Reduce red and processed meats. • Stay away from “trigger” foods. • Steer clear of “fad” diets. • Work with a dietitian and physicians for individualized goals and recommendations.

FIGURE 9.5.  Family training for healthy eating and hydration.



Interventions for Families, Tiers of Support, and Aftercare 371 Functional Mobility • Impact of potential difficulties with balance, ataxia, and hemiparesis on activities of daily living (ADLs; e.g., grooming, bathing) and instrumental activities of daily living (IADLs; e.g., route finding in the neighborhood, Home Exercise Programs) • Level of independence navigating in the home, including the bathroom and stairs • Safety awareness related to clutter, obstructing items, and floor coverings • Consider: | Grab bars | Shower seat | Mobility devices | Spring-loaded hinges for cabinets | Soft and nonslip flooring (e.g., rubber, vinyl, linoleum, and carpet) | Lever-style knobs for doors and faucets | Scald-proof faucets Vestibular Skills • Impact of vertigo (e.g., dizziness, nausea, and sense of spinning) on getting out of bed, standing, and walking • Risk of falls during mobility, bathing, and object retrieval • Consider strategies: | Place items within reach from a seated position. | Avoid bending, stooping, and overhead reaching. | Raise pet dishes, washer, dryer, and clothes sorting and folding spaces. | Utilize rollout or drop-down shelving. Vision • Assess impact of visual neglect, visual field cut, and double vision on managing the environment: | Remove throw rugs. | Rearrange furniture so as to create clear pathways. • Incorporate layered lighting to minimize shadows and glare. • Use night lights. • Emphasize contrast to improve perception (white colors) and minimize patterns. • Consider SMART technology (e.g., for carbon monoxide/smoke detectors). • Organize personal items for ADLs: | Place important objects on the side of space without visuoperceptual/field problems. | Rearrange clothes in the closet and drawers. • Ensure safe storage and use of sharp and dangerous objects (e.g., knives, guns). Memory • The need for cupboard labels • Designated location for important items (e.g., keys) • Ability to cook safely (cold and hot meal preparation) • Compensations such as a timer for cooking, a “whistling” tea kettle, reminder signs when leaving the home, checklists for ADLs and IADLs • Independence in managing medications related to forgetfulness • Capacity to handle finances (continued)

FIGURE 9.6.  Considerations for home visits and unsupervised time.

372

Transfer of Skills

Executive Functions • Assess judgment, problem solving, impulse control, initiation, follow-through, and multitasking, related to safety scenarios: | Decisions related to medication compliance, including risk for mismanagement | Telemarketer and/or scam phone calls | Fire starting in the kitchen | Glass breakage | If a smoke detector goes off | If a stranger comes to the door | Someone outside yelling for help | Getting up on a stepladder | Location of toxic household cleaners | Self-control related to budget and spending | “Medi-alert” system for emergencies (e.g., Alexa, Google Assistant) Energy Conservation • Develop good sleep hygiene, diet, hydration, and exercise schedule. • Limit screen time (e.g., checking emails, social media). • Space out/pace activities. • Listen to your body. • Preplan and prioritize. • Reduce overstimulation. • Balance demands with reserves. Safety Awareness/Emergency Preparedness • Extraneous medications around the house • The need for and follow-through with locked containers for medication • Preprogrammed phone numbers for emergencies • Location of flashlights, fire extinguisher • Evacuation procedures (due to gas leak, fire) • Smoke detector maintenance • Leaving extra key with a trusted member of the support network • Up-to-date portable health profile • Identification of medical and financial powers of attorney • Completion of advanced directives Overall Awareness of Strengths and Challenges • Willingness to use compensations • Healthy confidence level • Openness to accepting outside help • Ability to modify plans and goals based on changing circumstances Community Mobility • Safety with route finding in the neighborhood • Appropriate transportation options: | Driving | Public transportation | Taxis or car services/apps | Family and/or friends | Personal assistant/hired driver | Paratransit

FIGURE 9.6.  (continued)



Interventions for Families, Tiers of Support, and Aftercare 373 Dos

Don’ts

• Maintain supervision restrictions until medically cleared to increase hours.

• Rely on using sticky notes for reminders.

• Rely on memory alone—plan to forget! • Complete items on your Home Independence • Use sharp objects. Checklist (HIC). • Use the stove or oven. • Check your datebook three times per day. • Carry large or heavy items. • Add all appointments to your datebook when • Bend all the way down to the ground with you receive phone calls. your head below your heart. • Record notes in your datebook under the • Use the pool without supervision. “daily notes” section. • Go on the treadmill. • Call your family if any problems occur. • Answer the door. • Wear your smartwatch. • Answer phone calls from unknown numbers. • Keep your phone on your person. • Take the dog for a walk by yourself. • Use the microwave. • Complete daily home exercise programs and therapy homework. • Sit down when using TheraBand. • Use a tall pooper scooper when cleaning up after the dog. • Read three times per week. • Do brain games three times per week. • Work on your latch hook and scrapbook. • Write in your journal. These recommendations have been developed by your CTN therapists based on your current status. Your physician, Dr. Smith, has also reviewed these recommendations and is in agreement. These recommendations will be reevaluated and updated regularly based on your progress.

FIGURE 9.7.  Rachel’s Dos and Don’ts List When Home Alone.

Clinical observations in the home and nearby environs dictate when unsupervised time should increase both for being home alone and supervising children (see also Chapter 7 for more information). This requires buy-in and a comfort level in the support network as well as medical approval from at least the treating physiatrist, but possibly also a neurologist monitoring factors like seizure status, and a psychiatrist who considers emotional stability and risk for self-harm. “Go/no go” criteria are the survivor’s capability of safely managing all medications and willingness/ability to consistently use compensations. Fundamental tools are pillboxes with various appendages, for instance, alarms and electronic dispenser versions, as well as programmable smartphones and watches with reminders (Klonoff, 2014). The survivor’s ability to FaceTime with his or her primary caregiver and in-home cameras also afford crucial backup and even more self-­sufficiency. Personalized supplemental checklists are conjointly developed and implemented. See Form 9.7 for sample pillbox, laundry, and home exit checklists and Figure 9.8 for Rachel’s completed version of them. See Form 9.8 for a comprehensive Tier 2 (“second-­string”) Support Network Checklist; notice that the level of supervision can range from monitoring to cueing, dependent on the patient’s neurological status.

374

Transfer of Skills Filling a Pillbox Date 9/5/21

Date 9/12/21

Date 9/19/21

 1. Fill pillbox on Sunday evenings after taking Sunday night meds.

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 2. Before filling, all of the pillbox slots should be empty.

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 3. Place all bottles to the left of the pillbox.

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 4. Fill up A.M. slots for the entire week.

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 5. Close all A.M. slots.

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 6. Move all completed pill bottles to the right of the pillbox.

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 7. Fill up noon slots.

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 8. Close all noon slots.

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 9. Fill up P.M. slots for the entire week.

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10. Close all P.M. slots.

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a. 6 pills in the A.M. slots.

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b. 5 pills in the noon slots.

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c. 1 pill in the P.M. slots.

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Date 9/5/21

Date 9/12/21

Date 9/19/21

1. Take dirty clothes in the hamper to the laundry room.

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2. Sort clothes into two piles (darks and lights).

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3. Check pockets and put the first set of clothes in the washer.

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4. Pour in detergent and fabric softener to the maximum line.

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a. “Regular wash”

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b. Temperature is on hot or cold

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c. Spin cycle is on medium

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d. Set “end cycle” alarm

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11. Double-check your work. There should be:

Laundry Checklist

5. Set to:

(continued)

FIGURE 9.8.  Rachel’s Pillbox, Laundry, and Home Exit Checklists.



Interventions for Families, Tiers of Support, and Aftercare 375 6. Dryer: Move clothes from the washer to the dryer.

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a. Clean lint basket.

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b. Place dryer sheets in the dryer.

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c. Set “timed dry” (40 minutes).

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d. Set “finish cycle” alarm on.

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a. Close dryer door, leaving clothes inside.

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b. Turn dryer dial to “touch up” (20 minutes).

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c. Make sure dryer alarm is set to “LOUD.”

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d. Press and hold start button.

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8. When alarm goes off, remove the clothes from dryer, fold, and put away.

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9. Repeat the same steps with the second load of laundry.

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Date 9/13/21

Date 9/14/21

Date 9/15/21

 1. Did I take my morning meds?

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 2. Did I put deodorant on?

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 3. Did I feed my dog/cat?

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 4. Is my wallet in my pocket?

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 5. Is my phone in my pocket?

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 6. Get lunchbox out of fridge.

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 7. Fill up 64-ounce water bottle.

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 8. Make sure to take my cane.

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• Therapy binder

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• Datebook

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• Snack

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• Lunch

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• Keys

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7. If clothes are still moist or wet:

Home Exit Checklist

 9. Check if my backpack contains the following:

10. Check to make sure I locked the door on the way out.

FIGURE 9.8.  (continued)

376

Transfer of Skills

Our method is to raise unsupervised time by 1–2 hours at safe increments based on the overall neurological condition. Higher-­functioning survivors may proceed more rapidly, say, by 4 hours every 2–3 weeks. A major determinant is whether he or she is deemed ready to stay overnight by him- or herself, without other home occupants present. If this goes well, patients can consider advancing to living independently, either by themselves or with a roommate, if appropriate. Construction of a pros and cons list/cost–­benefit analysis to aid with this weighty decision is worthwhile, using feedback from the core team, physicians, and of course the family (Klonoff, 2014). If the survivor moves out, therapeutic home visits continue during this time to ensure a smooth transition. Regular check-ins by informed “advisory board” persons also ensure ongoing success with additional freedoms (Klonoff, 2010). Concomitant with greater independence and living outside of the family’s home is the ability to handle finances. (Also see the section on vocational group in Chapter 5 for a description of this education.) The occupational therapist teaches strategies to the patient and relatives, including setting a realistic budget, a mechanism to track expenditures, use of prepaid credit cards to curb impulse splurging, automatic bill-­paying systems, and debt consolidation (Klonoff, 2014). Extra assistance from our social worker, a designated financial power of attorney, fiduciary, and/or financial planner is advantageous. Respite and delegation through utilization of external helpers are deemed essential for the emotional sustenance of relatives. Therapist and medical contributions from physiatrists, neurologists, and psychiatrists are vital in determining the optimum balance of family-­ based care for the loved one versus the need for outside reinforcements, using personal safety and protection as the benchmarks (Klonoff, 2014). In severe cases of acquired brain injury (ABI), survivors may require an assessment of decision-­making capacity (­Karlawish, 2021; Owen, Freyenhagen, Martin, & David, 2017; Whyte & Summers, 2020) to guide the support network. Supervision should be conceptualized as a spectrum, ranging from 24/7 oversight to a few hours per day, several hours per week, to limited and distant monitoring for the highest-­functioning survivors. Those who require guardianship do not have the overall neurological capability to live unassisted and ought to have more external resources, whereas those who are able to drive and work full-time have better potential for self-­ sufficiency. Other considerations are (Klonoff, 2014; Seel et al., 2016): • Medical complications (e.g., uncontrolled seizures, fall risk) • Comorbid diagnoses (e.g., substance abuse) • Deteriorating conditions (e.g., brain tumors) • Severity of difficulties with: | Cognition (i.e., amnestic syndromes and profound executive dysfunction) | Physical capacity | Aphasia | Mood/behavioral disturbances (e.g., impulsivity, judgment, aggression, self-­ regulation, risk of harm to self or others) | Self-­perception of susceptibility to unintentional external harm or danger Through collaborative dialogue, our interdisciplinary team takes seriously the matter of articulating the amount and nature of outside support needed and then aiding the patient



Interventions for Families, Tiers of Support, and Aftercare 377

and relatives in finding and instructing a personal assistant. Some survivors may be eligible for paid support in the home if they qualify for government programs such as state longterm care services. Alternatives are to hire therapy students studying to become therapists from local universities, reputable contacts through friends or the community like a place of worship, referrals from local brain injury associations, and agency caregivers. Potential resources may be found in the general resources list available at the book’s companion website. All therapy disciplines participate in the training process based on a needs analysis and obtain preferences from the patient and family; this occurs both in and outside of the clinic. Form 9.8 provides a generic Tier 2 support network checklist, and Figure 9.9 is a version of it as customized with Rachel and her “buddy” or personal assistant to use. Note the multiplicity of ways this helper can enhance therapeutic carryover to the home and community

Date 11/15/21

Date 11/18/21

Attend trainings with CTN therapists.





Monitor that Rachel uses her datebook. It should be open and accessible at home.

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If you ask Rachel to do or remember something, please monitor that she has written it down immediately in her datebook. Cue her as needed to read notes back to you to make sure the information is accurate.

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Assist Rachel in creating scripts for phone calls.

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Monitor that Rachel takes notes in her datebook for appointments and meetings.

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Monitor that Rachel records in her datebook WHAT she does each day.

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Encourage/supervise Rachel’s exercise schedule to ensure safety (join her and have fun).

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Cue Rachel to schedule extra household tasks and community errands in her datebook.

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Encourage Rachel to drink water throughout the day.

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Help Rachel with meal planning and preparation.

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Encourage Rachel to follow the portion nutrition guidelines and to record meals in the food log in the datebook before or immediately after eating.

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Assist Rachel with transportation (drive her) and/or help set up paratransit rides.

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Cue and assist Rachel with her scrapbook and other hobbies.

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Assist Rachel in registering for community art/interest classes.

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Monitor Rachel as she fills her pillbox and assist with obtaining refills.

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Participate in monthly milieu meetings with Rachel and her parents to promote communication and effectiveness.

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Place an “X” in the corresponding box when each step is completed.

FIGURE 9.9.  Personal Assistant’s Checklist for Rachel.

378

Transfer of Skills

as well as overall quality of life. Written materials as well as HIPAA-­compliant apps to video-­record medical appointments (e.g., Medical Memory, www.themedicalmemory.com) are highly advised. Periodic reevaluations are important, as capabilities may improve or deteriorate, which will translate to rethinking external support requirements, always in accordance with the least restrictive environment (Seel et al., 2016).

Family Psychotherapy in Post‑Acute Neurorehabilitation The negative aftereffects of brain injury on relatives have been described as “collateral damage”; yet ultimately, it is a “family affair” that is pervasive, not episodic (Lezak, 1988; ­Livingston, 1990; Prince, 2017). Caregivers have been described as “hidden patients” (Fengler & Goodrich, 1979), who often experience secondary trauma, characterized by the discontinuity of the postinjury versus preinjury identity and inordinate grief and loss (­Townshend & Norman, 2018). Of note, defining “family” for each survivor is pivotal, as the support network may or may not include blood relations (Prince, 2017; Summers, G ­ ooday, Whyte, & Herbert, 2020). The assessment of families’ circumstances and predicaments should be multimodal and include standardized and nonstandardized instruments, interview data, and clinical observations (see Backhaus et al., 2022, and Klonoff, 2014, for more information). Historical research indicates that the emotional and behavioral changes are the most burdensome and magnify psychological distress and global social dysfunction (Backhaus et al., 2022; see Livingston, 1990, for a review). There are reverberations on all aspects of the family system, also affecting caregivers’ mood and adjustment, role delineation, marital harmony (including sexual relations), sibling and children’s relationships, external social supports, finances, prior daily routines, and physical health and wellness (Backhaus et al., 2022; Heart and Stroke Foundation of Canada, 2020; Muir, Rosenthal, & Diehl, 1990; for reviews, see Klonoff, 2014; Yeates, 2009). Nonetheless, easing the family’s hardships is a prerequisite for exemplary holistic care (Klonoff, 2014; Townshend & Norman, 2018). Psychological well-being in the patient and support network is symbiotic, as research shows that family coping, cohesion, and resiliency are associated with a positive adjustment when there is adequacy of service supports and ongoing care (Migliorini, Callaway, Moore, & Simpson, 2019). Specifically, it is imperative to build expertise in the support network; remediate its members’ emotional distress, including depression and anxiety, through coping skills; and teach problem solving and self-­advocacy so as to maximize the survivor’s neurorehabilitation, recovery, and community reintegration (Colantonio et al., 2016; Fisher, Bellon, Lawn, & Lennon, 2020; Klonoff, 2010, 2014; Malec, 2016; Shoaib, Dagar, & Reyaz, 2017). Family therapy unfurls via a variety of formats, such as individual therapy for the caregiver, marital therapy, inclusion of the whole family unit, and group therapy for multiple families (Backhaus et al., 2022; Ben-­Yishay & Diller, 2011; see the next section; see also Klonoff, 2014, for a review). Theoretical schools and intervention types include (Butera-­ Prinzi, Charles, & Story, 2014; Klonoff, 2014; Klonoff & Piper, 2020; Klonoff et al., 2017; Prince, 2017; see Yeates & Ashworth, 2020, for a review):



Interventions for Families, Tiers of Support, and Aftercare 379

• Psychoanalytic • Attachment-­based psychotherapy • Self-­psychology • Behavior modification • Family systems • Cognitive-­behavioral/family schemas • Psychoeducation and skills training • Assistive technology • Mind–body, mindfulness, and relaxation therapies • Narrative therapy • Personal construct psychology • Acceptance commitment therapy (ACT) • Compassion-­focused therapy • Positive psychology • Existential psychotherapy • Integrative psychotherapy • Support groups and workshops • Family autobiographic approaches using books and articles • Resources (e.g., leaflets, online websites) Regardless of the preferred method and home life composition and circumstances, family therapy and psychoeducation are a “must do” to face painful realities, ameliorate turmoil, provide coping mechanisms, and fashion a new workable equilibrium defined by reconfigurations, restabilization, hardiness, and hopefulness (Ben-­Yishay & Diller, 2011; Klonoff, 2010, 2014; Rao & Vaishnavi, 2015; Tramonti, Bongioanni, Bonfiglio, Rossi, & ­Carboncini, 2017). Avoiding complicated jargon, and normalizing and containing suffering in safe spaces, are overarching principles (Klonoff, 2014; Summers et al., 2020). The loved one’s and relatives’ progress also hinges on addressing any of the family’s resistance, negative transference reactions, and patterns of triangulation (Klonoff, 2014; Klonoff & Piper, 2020; Tramonti et al., 2017). This portion of the chapter will explore family psychotherapy principles, as well as CTN-based family group and aftercare groups for survivors and their support networks. The constructs are relevant to adult family members and older adolescent and adult patients; see prior publications for a more in-depth analysis of various ages and roles (e.g., children, adolescents, parents, siblings, significant others) (Klonoff, 2014; Klonoff et al., 2017).

Family Psychotherapy at the CTN General Overview and Goals Family psychotherapy is a cornerstone of the holistic milieu model across all CTN programs. As stated in Chapter 1, psychotherapy with the family/support network of a patient with a brain injury has been defined as “three-­tiered, multi-­person, collaborative, and dynamic working relationships between the psychotherapist, the primary caregiver(s), and other

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committed relatives and community individuals (including and on behalf of their loved one with the brain injury) to increase the whole support network’s internal awareness, acceptance, and realism about their own as well as the loved one’s postinjury existence, while at the same time creating renewed personal adjustment, meaning, and quality of life, within an external nourishing community” (Klonoff, 2014, pp. 15–16). See Klonoff (2014) for a thorough discussion of psychotherapy for families after ABI. As illustrated in Figures 9.10 and 9.11, previous publications have delineated an interactive model of psychotherapy after brain injury and the three tiers of support made up of the primary caregiver(s), the second string of other immediate or extended family and/ or friends, and the broader community support system (Klonoff, 2014, Figures 1.1 and 1.2 on pp. 13–14). In tandem with the PEM (see Chapter 3), Figure 9.12 depicts the relatives’ experiential journey in a “roadmap” format after ABI in the FEM (Klonoff, 2014; Klonoff et al., 2008). Emotional support and psychoeducation are the pillars of the interventions. (Colorized versions of Figures 9.11 and 9.12 are available at the companion website.) A paramount aim of family therapy is to alter the trajectory of inner and external chaos and reestablish life satisfaction in the entire family unit (see Klonoff, 2014). Importantly, clinical observations and empirical data from the CTN indicate that relatives’ pressures and stresses lessen in accordance with a positive working alliance, improved awareness, acceptance, realism, and self-­sufficiency in the loved one (Klonoff, 2014; Klonoff et al., 2017; Rubin et al., 2020). As one survivor said to his wife at his “cake day,” “You carried me on your shoulders—­literally and figuratively—­you can put me down now” (Stephen Barnes, Psychotherapist wo r k ing a ce

nc e

lli a n

a lli a

working alliance

wo r k in g

history psychodynamics culture

aspirations Tier 1

Loved One’s Awareness Acceptance Realism

environment

Tier 2

spirituality Tier 3

Awareness Acceptance Realism

values behavior emotions

social context personality

cognitions motivations

FIGURE 9.10.  An interactive model of psychotherapy after brain injury and the roles of three tiers of support. From Klonoff (2014). Used with permission of Springer Nature.



Interventions for Families, Tiers of Support, and Aftercare 381

FIGURE 9.11.  Artist’s rendition of the three tiers of support. From Klonoff (2014). Used with permission of Springer Nature.

personal communication, May 10, 2018). Ultimately, by remedying the caregiver’s woes, and integrating positive attributes of caregiving, all parties can experience togetherness, deeper connections, fulfillment, wisdom, existential growth, resourcefulness, grittiness, and a value-­driven existence (see Klonoff, 2014, for a review). These altruistic pursuits produce the rippling of good deeds across society at large (Yalom, 2009; see Klonoff, 2014, for a review).

Structure and Process Typically, relatives meet conjointly with the patient and the psychotherapist weekly for 45 minutes for support and psychoeducation; alternatively, the caregiver joins halfway through a single session with the survivor. As the patient approaches discharge, the appointment frequency gradually decreases. When feasible, the support network meets privately with the

382

PHASE 0

• Life as it was.

Reference Point

Preinjury

O N E ‘ S

L O V E D

PHASE 1

PHASE 2

PHASE 3

• Mourn the losses • Expectations are adjusted • “Things take time” • Family learns compensations for themselves and patient • Accepts patient for who he/she is now • New relationships are formed • Family gains perspective

Compensations

• Parent/spousal • Tentative yet • Family learns to role switches to hopeful cope with their caregiver/advocate • Family increases own emotional • Family is reluctant their awareness of reactions but allows a select the effects of the • Motivated to few to get involved brain injury learn, monitor, • Transforms feel• Family construcand support their ings of helplesstively manages loved one’s use of ness into proactive grief, sadness, compensations behavior worry, and protec- • Actively interacts • Family realizes tiveness; becomes with the therapists they can’t manless overwhelmed and participates in age the “injury and recognizes goal setting aftermath” without these feelings are • Family feels a further treatment universal sense of emotional • May feel a sense bonding and of relief or respite camaraderie in while the patient relatives’ group attends therapy • Family resolves to “count their

• Sacrifices personal needs in favor of patient’s care • Family succumbs to intense emotions, with islands of resiliency • Family is frightened but begins to ask questions and hear information about the prognosis • Nervous about patient’s progression through the hospital but gradually tolerates • Worries that something else “bad”

• Holistic assessment and documentation of the patient’s neurological condition • Learns appropriate vocabulary and terminology about the injury sequelae (“c.r. by proxy”) • Unpredictability about the future • Family recognizes they need help and are not alone • Realizes the patient may think he/she doesn’t need therapy or will experience a “honeymoon period”

Confronting Reality

ACCEPTANCE

AWARENESS

PHASE 5 Retraining

PHASE 4 Holistic Treatment Starts

• Shock, disbelief • Horrified • Distraught • Fleeting composure vacillating with panic and helplessness • Chaos • Terrified • Guilt, anger • Operating on “automatic pilot” • Why us? Why them? What if? • Will they survive? • They will recover • So many questions, so few answers • Life is surreal

How to Cope

Seeks Help

• “24/7” • What will happen now? • Financial setbacks hit • Schedule and life upheaval • Family receives the brunt of their loved one’s dependency and negativity • Family member feels segregated with loved one within the family system • Physical, mental, and emotional exhaustion • Looking for treatment resources

Initial Problems

Early Adjustment

• Inpatient neuro­ • Witnessing and/ rehabilitation/ or notification of home/outpatient injury neuro­rehabilitation • Bombarded by • Meandering in a information foggy reality • ICU • Undertakes “insur• Acute care ance trauma” • Misses their loved • Family begins to one; core lonelibelieve that the ness injury occurred • Constant vigil at • Orchestrates and bedside facilitates their • Prayers and barloved one’s medigaining cal and self-care • “Instant expert” on needs loved one • Family wants their • Disturbed family loved one to “beat routines the odds” and • Family in “crisis expects instant mode” results • Social seclusion

Sudden Impact of Brain Injury

Time of Injury

PHASE 6

The Real World

Future ∞

PHASE 7

• Family collaborates with the patient and the therapists toward community reintegration • Supportive yet realistic about their loved one’s level of independence, productivity, and socialization skills • Constructively manages fears and trepidations about discharge • Develops selfconfidence in their skill attainment • Family expands

• Family more intuitively evolves the strategies and tools learned in rehab to accommodate and enhance their loved one’s quality of life • “Door is always open” for further help and support if needed • Over time, family finds a balance between different roles and has a healthy social network for support • Regularly

• The new reality • Observes patient’s sets in new freedoms and • Family and loved independence one maintain a col• Family prepares laborative dialogue themselves to about the brain assume more injury effects and postprogram compensations responsibility for • Things aren’t their loved one the same but • Family juggles everyone can live work schedule, a meaningful and finances, and productive life caregiving • Life is ever-changing and evolving

Approaching Discharge

REALISM

Transition from Therapy

Discharge

383

C O N D I T I O N

• Family wishes the injury had never happened • Family feels hopeless, bitter, and resentful • Becomes overprotective or overly controlling of the patient’s predicament • Won’t accept outside help; pushes others away • Family feels inadequate and helpless; lapses into a passive state • Feels depressed, overwhelmed, and alone; oppressed by sole responsibility for the patient • Develops disruptive stressinduced ailments • “Second tier” of family and outside help dwindles

• Family uses prolonged denial, disavowal, resistance, anger, or blaming to avoid facing the effects of the brain injury • Are overprotective or underinvolved • Family’s intense emotions interfere with their own and their loved one’s progress in the program • Feels misunderstood, dissatisfied, and mistrustful toward the therapists and the treatment process • Becomes detached from others

• Family becomes disgruntled with the complexities and limitations of the recovery process • Family is passively engaged and lacks follow-through with support of compensations; inconsistent or no attendance at relatives’ groups or family meetings • May become locked in a “power struggle” with therapists and wants to “prove the experts wrong” • Family’s essential emotional, mental, and physical energies are sapped • Struggles to fulfill multiple roles of caregiver, family life, and work

• Insufficient knowledge negatively impacts the patient’s progress and goal attainment • Family under- or overestimates (“flight into health”) the effects of the injury on independence, productivity, and/ or relationships • Exhibits selfdoubts, anxieties, and inadequate coping techniques • Unable to focus on personal needs and aspirations • Unwilling or unable to develop a social network • Sets unrealistic goals • Unprepared functionally and emotionally for the discharge and transition process because their loved one isn’t 100%

their support system • Family finds inner strength and courage through facing adversity

• Family observes their loved one’s slippage in his/her use of compensations but is ill equipped to provide constructive feedback or assistance • Less likely to seek help or support for themselves • Unresolved skewed roles • Become burned out, disengaged, and socially isolated

­schedules respite time

Absence of critical therapeutic interventions or premature and abrupt abandonment of treatment. Life implodes. Refusal to become aware and acceptant; negation of reality. Overcome with rage, anguish, despair, and helplessness. Apathy and self-defeating behavior. Work failure and financial ruin. Social alienation. Neglect, fragmentation, and/or dissolution of family life.

Period of Disintegration

• Deprives oneself of any enjoyment because the patient is suffering • Family is too anxious and afraid to ask questions • Too overwhelmed to digest feedback and suggestions • Family may feel the doctors and others are not doing enough • Family overtaxes or overindulges their loved one • Do not want to discuss and/ or believe the seriousness of the injury • Family is lost in regret and/or avoidance and denial

­blessings”

FIGURE 9.12.  Family experiential model of recovery after brain injury. From Klonoff et al. (2008). Copyright © The Menninger Foundation. Reprinted with permission from The Guilford Press.

 Fluctuations

 Rotation

  Crisis Zone

 Warning   Zone

  Coping Zone

 Phases

Legend

could happen, but trusts that the professionals will do their best • Family lovingly encourages their loved one

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psychotherapist (with the knowledge and consent of the patient), for an unfettered opportunity to reveal deeper apprehensions and angst without potentially upsetting or angering the loved one (Klonoff, 2010, 2014; Klonoff et al., 2017). In our model, family members represent the collateral support system, not the identified patient (Klonoff, 2014; Klonoff et al., 2017). However, it is crucial to attend to the support network’s care needs, as mostly, they do not have the knowledge or choice for this complex undertaking (Collins & Swartz, 2011; Degeneffe, 2001). Outside resources to alleviate feelings of subjective burden are routinely proffered, including a personal psychotherapist, social worker, financial planner, respite support, and an attorney to name a few (Klonoff et al., 2017). (See Figure 9.13 for more ideas about self-care.) Besides the nature and severity of the ABI, fundamental considerations include the socioeconomic background, overall family health (pre- and postinjury), social microcosm, expectations, traditions, gender identity, roles, and responsibilities, cultural diversity factors, religious sensitivity, and receptivity/engagement in treatment (Klonoff, 2014; Summers et al., 2020; Tramonti et al., 2017; see Yeates, 2009, for a review). Key relatives serve as allies of the therapists, hopefully bridging inevitable disruptions and eruptions during therapy by reinforcing the value of “trusting the process” as well as being “willing students” so as to bring out the best in their loved one (Ben-­Yishay & Diller, 2011; Klonoff, 2014). The necessary intervention principles on the part of the psychotherapist are to (­Backhaus et al., 2022; Gan, Kreutzer, & Agyemang, 2019; Klonoff, 2014; Klonoff et al., 2017; Moreno et al., 2017; Summers et al., 2020; Tramonti et al., 2017): • Create a partnership with the support network and survivor, meeting the relatives where they are. • Understand the benefits of a family system approach that also examines subsystems. • Appreciate the unique characteristics of the family, including relevant background history, family rituals, and historical coping mechanisms. • Take into account the effect of the patient’s interrupted developmental trajectories and blockades in the family life cycle evolution. • Help the support system manage expectations using active listening and set attainable short-term goals. • Teach healthy communication skills for the caregivers/survivor. • Model empathic relatedness and perceptiveness regarding potential disparities in the perceived realities of the patient and family vis-à-vis brain injury sequelae and goal setting. • Validate and normalize loss and grief and their emotional spectrum and roller coaster. • Recognize and tolerate the emotional upheaval that may be unleashed on the therapist without “taking it personally.” • Adopt a strengths-­based resilience to focus and reinforce adaptive behaviors. • Offer realistic hope for the future. • Respect professional boundaries and adhere to limits of clinical expertise. • Navigate and collaborate with medical and therapist systems while advocating for the family (and the survivor).



Interventions for Families, Tiers of Support, and Aftercare 385 Emotional Sustenance Resources • Family and aftercare groups • Family mentorship in the neurorehabilitation center and outside get-togethers with peers • Retreats with other caregivers (sometimes gender-specific, e.g., “Sisterhood/Brotherhood of Caregivers”) • Community social support groups that include caregivers (in-person and online) • Support group for siblings • Conferences about brain injury • State Brain Injury Alliance programs • CaringBridge website (www.caringbridge.org) Self-Empowerment • Keep a structured schedule but do not overschedule. • Develop strategy-generation skills and action plans. • Create scripts for explaining the loved one’s brain injury and recovery course to tiers of support. • Set boundaries about requests and commitments (have a “say-no” list). • Be nice, forgiving, and gentle with yourself. • Give permission to yourself to acknowledge and experience genuine feelings of angst and watch for self-judgment. • Don’t personalize when the loved one uses you as a scapegoat. • Avoid self-blame and do not feel guilty about listening/attending to your own needs. • Hold debriefings about difficult experiences/emotions with trusted confidants. • Replace living on pins and needles with trusting the process and things take time (T.T.T.). • Remember the Serenity Prayer. • Learn to be a self-advocate. • Decide if caregiving is the exclusive rewarding role in your life. • Do not measure success by being busy, but instead by quality time. • Diversify interests and create meaningful projects. • Establish a purpose to the day, accomplish tasks, and take pride in them. • Find your personal balance in life. Emotional Replenishment • Get outside personal counseling and consider psychotropic medication. • Undergo family therapy with your children. • Remain open to new ideas. • Emphasize progress and healing and recognize that things will improve. • Use guidance to course-correct. • Know when/how to ask for help. • Engage in self-renewal (e.g., retreats). • Carve out “me time” and remember the “oxygen mask” analogy (Pais, 2002). • Find joy in laughter and humor. • Get a pet for companionship. • Engage in verbal venting with trusted confidants. • Socialize with people you enjoy (go for coffee, a manicure, to restaurants, shopping). • Schedule phone calls/FaceTime with friends and your tiers of support. • Make time for dating. • Do spiritual readings. (continued)

FIGURE 9.13.  Ideas for self-care.

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Transfer of Skills

• Practice meditation, relaxation, and deep breathing or other stress-reduction techniques. • Take yoga classes. • Listen to podcasts about well-being (e.g., Rick Hanson; www.rickhanson.net/being-wellpodcast/; https://www.calmmoment.com/wellbeing/11-best-podcasts-for-wellbeing). • Build a hearty advisory board for input and support. • Envision a better future. Neurorehabilitation Ideas and Compensations • Rely on educational tools (e.g., the family experiential model [FEM] of recovery, reference points diagram). • Utilize family milieu meetings to coordinate schedules and meet your personal needs. • Use the neurorehabilitation program as a lifeline. • Embrace process over outcome and dignity of risk, with a “small r.” • Remember the “door is always open” for future therapies. Practical Suggestions • Explore federal and state government programs and benefits (financial, housing, rent, nutrition, child care, medical, and behavioral assistance; Social Security Disability, Short- and Long-Term Disability, workers’ compensation; Family and Medical Leave Act). • Craft your personalized “survival kit” and remove unnecessary stressors. • Practice proper diet and hydration and good sleep hygiene (helpful apps: Sleep Cycle, Sleep Time, Noisli, Calm). • Address your own physical health. • Coordinate respite care and outside help (“grace in receiving”): | Share the load and delegate to willing family and friends. | Create a rotating schedule with other families with an injured loved one. | Accept “good-enough” support. • Simplify responsibilities: | Do your grocery shopping (e.g., Instacart) and make general purchases online. | Use the Earny app/prepaid credit cards/automatic payments to simplify financial management. | Streamline meal preparation (e.g., Crock-Pots, slow cookers, air fryers). | Suggest potlucks or catering for get-togethers. | Simplify holiday celebrations—smaller and shorter. | Avoid being the “middleman” between your loved one and nonsupportive others. • Hire someone to help out: | In-home health-care provider | Babysitters and tutors | Home organizer | House cleaner | University students/therapists in training as personal assistants | Transportation services (carpools, taxis, car services) | Insurance case manager | Personal assistant | Attorney | Financial planner | External guardian/conservator (continued)

FIGURE 9.13.  (continued)



Interventions for Families, Tiers of Support, and Aftercare 387 Activities • Housework and home improvement projects • Spa day • Sports • Exercise • Date nights • Engage with nature (go for evening walks, take a drive) • Game nights (even via the Zoom app) • Work (on a competitive or volunteer basis) • Community college classes • Vacation/travel (short and long) • Religious outlets • Hobbies and interests (movies, journaling, arts and crafts, book club, scrapbooking, reading)

FIGURE 9.13.  (continued)

Protocol Family therapy sessions are utilized to give updates regarding the patient’s treatment and goals, provide psychoeducation about the aftereffects of the ABI across neurological and functional domains, and delve into the myriad of emotional and psychosocial consequences in each party. Topic areas are also drawn from salient themes and occurrences that are shared during staff meetings about both the survivor and family. A helpful tool is to create agendas with the caregiver(s) and survivor separately and in advance before conjoint sessions to avoid the parties feeling “ambushed.” Careful attention is paid to the timing and pacing of feedback, prioritizing “bite-sized” pieces, and an emphasis on gains and mastery in all concerned (Klonoff, 2014). Note-­taking by all parties and handouts are staples of these sessions. The emphasis is the “here and now,” with an active avoidance of “crystal ball” prognoses that can often be inaccurate and/or demoralizing. Table 9.1 summarizes common topics and treatments for family therapy. Supplemental interventions include attendance at monthly family meetings with the core team to update progress, challenges, and goals as well as regularly scheduled “relatives’ days” to actively observe therapies and learn strategies (Klonoff, 2010, 2014; Klonoff et al., 2017). Families’ characterological makeup, behaviors, and mood factors that jeopardize the working alliance with themselves and the patient are explored. Supplemental meetings with some combination of the clinical director, psychotherapist, psychiatrist, physiatrist, and family member (with or without the patient) are useful in remediating blockages to the therapeutic process, with probationary status as a possible tool in situations where family members are derailing treatment objectives for their survivor (see Chapter 1). Nonetheless, psychoeducation and empathic responsiveness unearth the relatives’ tumult, doubts, and collective heartache, especially concepts of shattering of the assumptive world, defined as the uprooted taken-for-­granted realities (Kauffman, 2002; Neimeyer & Sands, 2011); ambiguous loss, as in the open-ended grief and lack of closure about profound alterations in the loved one (Boss, 2006; Boss, Roos, & Harris, 2011); partial death from changes in who the survivor formerly was to who he or she is postinjury (Muir et al., 1990);

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TABLE 9.1.  Family Therapy Topics and Interventions Topics

Interventions

Catastrophic reactions (CRs) by proxy Klonoff (1997, 2014); Roos (2002); Schwaber (1979); Yalom (2002)

• Understand the triggers. • Employ empathic responsiveness. • Strike while the iron is cold. • Anticipate the “shifting sands” of fluidity and progression/ setbacks in recovery. • Adjust your lifestyle and expectations to be attainable.

Walking on eggshells Demark and Gemeinhardt (2002); Gregory (2007); Klonoff (2010, 2014); Sherwood, Given, Doorenbos, and Given (2004)

• Solicit the assistance of a psychotherapist. • Differentiate between skill (effects of the brain injury) versus will (effort). • Implement the sandwich technique. • Do not personalize scapegoating and verbal attacks. • Use pros and cons lists to problem-solve. • Fall back on the idea of “planting the seed.”

Grief and loss Boss (2006); Buchholz (1990); Doka and Martin (2010); Duckworth (2016); Joseph (2011); Kauffman (2002); Klonoff (2010, 2014); Klonoff et al. (2017); Linge (1990); Linley and Joseph (2004); McColl et al. (2000); Peterson, Park, Pole, D’Andrea, and Seligman (2008); Roos (2002); Seligman (2006); Teel (1991); Triplett, Tedeshi, Cann, Calhoun, and Reeve (2012); Verhaeghe, Defloor, and Grypdonck (2005)

• Emote with the psychotherapist in a safe holding environment. • Accept the inevitability of early and intermittent chaos, emotional wounds, a roller coaster of emotions and experiences, and the unpredictability of the future. • Identify types of grieving (e.g., instrumental vs. intuitive). • Explore these concepts: the shattering of the assumptive world, ambiguous loss, living loss, partial death, chronic sorrow, episodic loss, loss spirals, stuck grief, the universality of suffering, and lingering sadness. • Find healing constructs such as adversarial growth, learned optimism, a wake-up call, and silver linings. • Remember to consider the reference points of immediately before and after the brain injury when gauging progress. • Recalibrate thinking that recovery is not time-limited and continues indefinitely. • Role of hard work, commitment, and discipline to think positively. • Foster inner resilience, grit, and empowerment. • Rely on the pillars of faith, hope, and love.

Burnout Collins and Swartz (2011); Hanks, Rapport, and Vangel (2007); Klonoff (2010, 2014); Klonoff and Prigatano (1987); Kreutzer, Kolakowsky-Hayner, Demm, and Meade (2002); Kreutzer, Marwitz, Godwin, and Arango-Lasprilla (2010); Perrin, Heesacker, Stidham, Rittman, and Gonzalez-Rothi (2008)

• Be honest with yourself and others about your limits and limitations. • Embrace the concept of compassion fatigue. • Learn to pick your battles. • Take care of your own physical and mental health. • Create an armamentarium of self-care and self-compassion activities to “recharge the battery.” • Expand your tiers of support. (continued)



Interventions for Families, Tiers of Support, and Aftercare 389

TABLE 9.1. (continued) Topics

Interventions

Adjustment Ben-Yishay and Diller (2011); Bettelheim (1987); Cavallo and Kay (2011); Elbaum (2019b); Harvard Health Publications (2011); Hein (2004); Jumisko, Lexell, and Söderberg (2007); Klonoff (2010, 2014); Klonoff et al. (2008, 2017); Kreutzer et al. (2010); Man (2002); Napoli (2011); Seligman (2006); Wells, Dywan, and Dumas (2005)

• Partner with specialists to maximize your loved one’s independence and community reintegration. • Utilize the family experiential model (FEM) of recovery as a guide to enhance your awareness, acceptance, and realism. • Avail yourself of expert help for your loved one and yourself in all arenas. • Tackle potential denial, disavowal, anxiety, depression, and fears and combat with coping mechanisms. • Differentiate between helping versus enabling. • Recognize when to be the “auxiliary frontal lobes” for your loved one’s protection and your peace of mind. • Set short-term, bite-sized, incremental goals and remember, “Things Take Time.” • Own and use compensations for the long haul, such as family milieu meetings and your own datebook system. • Know all of the tools in everyone’s toolkit. • Address “collateral damage” in family members. • Reconstruct healthy and balanced family relations. • Do not idealize the past. • Be open to alternatives to Plan A outcomes (e.g., Plan B and Plan C) for you and your loved one. • Adopt the “good enough” outlook as a caregiver and for your loved one and accept imperfections. • Fashion a “new normal” and make peace with what is. • Remember the dignity of risk. • Reconstruct a renewed sense of self and identity. • Mindfully reengage in outside purposeful and meaningful activities and quality of life. • Find new dreams and life frontiers. • Recognize the positive elements of caregiving. • Strive for self-actualization, gratefulness, and a “pay it forward” stance. • Plan for neurorehabilitation discharge with a lifeline orientation.

and episodic loss reactions and loss spirals that are recycled anguish because of periodic reminders of vanished possibilities (Roos, 2002; Williams, 1991). Family therapy is equally essential for furnishing coping skills and breeding overall adaptability, resiliency, emotional sustenance, self-­efficacy, personal transformation, meaning reconstruction, learned optimism, valued living, and posttraumatic growth using methods such as ACT, mindfulness, positive psychology, and narrative psychology (Neimeyer & Sands, 2011; see Klonoff et al., 2017, for a review). The FEM and PEM are compasses for this epic journey, especially the concepts of awareness, acceptance, and realism (Klonoff, 2010, 2014; Klonoff et al., 2008). (See Figure 9.12 for a copy of the FEM and Chapter 3 for more information on the PEM.) Adjunct multimedia resources illuminate the juxtaposition of loss and hope, for instance, the lyrics from the song “Sorrow”: “[F]or in our great sorrow, we learn what joy means” (O’Neal, 2019).

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Transfer of Skills

Family Group during Post‑Acute Neurorehabilitation Post-acute holistic milieu neurorehabilitation programs recognize the value of groups in which family members, friends, and other caregivers participate (Ben-­Yishay & Diller, 2011; Prince, 2017; Yeates, 2009). Purposes include learning about the treatment process; understanding the brain injury; learning coaching and compensatory techniques; conversing with others in a similar position for validation and sense making of their predicaments; undertaking a parallel course of awareness, acceptance, and realism regarding long-term home and community implications; offloading stress; and mitigating social isolation (Ben-­Yishay & Diller, 2011; Butera-­Prinzi et al., 2014; Klonoff, 2010, 2014; Prince, 2017; Yeates, 2009). “Outsider witnessing,” whereby former family members visit the group to share experiences and provide inspirational advice, is highly effective (Klonoff, 2010, 2014; Prince, 2017). Frequency of contact ranges from weekly (Klonoff, 2010, 2014) to every 6 weeks (Yeates, 2009). Participation ranges from optional (Yeates, 2009) to mandatory (Klonoff, 2010, 2014) and group duration can be fixed (e.g., 6 weeks) or more open-ended (Prince, 2017).

The CTN Family Group General Overview and Goals The historical philosophy, objectives, and set-up of family group at CTN are elucidated elsewhere (Klonoff, 1997, 2010, 2014; Klonoff et al., 2000). Briefly, this group provides psychotherapeutic support, psychoeducation, and peer sharing/mentoring for support networks in a “safe haven,” judgment-­free setting (Klonoff, 2010, 2014). Weekly/regular attendance is considered mandatory across all CTN programs, pending infrequent extenuating circumstances. Attendees represent multiple relationships, mostly parents and spouses, but also siblings, grandparents, and close friends. The overall intent is to provide vital teachings on recovery and neurorehabilitation, while normalizing the oscillations of postinjury befuddlement and grief, counterbalanced with optimism and personal and familial reconstitution (Klonoff, 2010, 2014). Often, attendees report this is the ideal forum to divulge inner angst and consternations, receive solace and emotional nourishment, compare and contrast practicalities and experiences, tackle grief and loss, and nurture social bonds and hopefulness during the post-acute phase of their loved one’s recovery (Klonoff, 2014).

Structure and Process Family group operates weekly; it remains open-entry, open-exit, which augments peer exchanges from various external vantage points based on where the survivor and support network are in their journeys, as well as diverse injury etiologies, chronicities, and psychosocial backgrounds (Klonoff, 2010). Relatives are invited to lunch with the patients prior to the group to build community camaraderie. Light desserts and beverages are served at the family group, which is held right after lunch on Thursdays for 90 minutes. Prior to anyone new starting the group, informed consents are obtained from the patient (or his or her designee). At the outset of each group, proper etiquette is reviewed in the form of handouts,



Interventions for Families, Tiers of Support, and Aftercare 391

especially the requirement of confidential exchanges, no outside conversations with third parties to avoid unwanted dissemination by “word of mouth,” and respectful exchanges, also with sensitivity to turn taking (Klonoff, 2014). Group facilitators are neuropsychologists/rehabilitation psychologists, with up to 20 attendees, 18 years and older, and a family-­to-­therapist ratio of 5:1 (Klonoff, 2010). Psychotherapists integrate new members, who often are reticent and tearful about their circumstances. They also monitor the depth of dialogue, as some more personal matters are better dealt with outside of the group (Klonoff, 2014). Therapists amalgamate both “heavier” and “lighter” topics so as to facilitate emotional reconstitution before the group ends. Relatives enjoy recounting enlightening and humorous vignettes and foibles that others can relate to, reinforcing the healing power of humor (Klonoff, 2010). The session is divided into three 30-minute segments of didactic lectures, emotional support, and round-robin updates (Klonoff, 2010). It is advisable to monitor the size and composition of the group to enable comfort in self-­disclosure. Mixed meetings with the support network and survivors take place on selected occasions, such as when patient and caregiver graduates are invited to impart their CTN and postdischarge events or for special projects (e.g., the mask project referenced on p. 393), all of which fosters mutual perspective taking, insight, and empathy.

Protocols Education Segment

All of the interdisciplinary team members rotate into the group as presenters. The program social worker regularly presents, given her expertise in helping families navigate complex insurance and other postinjury hassles. Attendees are regularly canvassed on subjects of interest, both informally during the group and through at least yearly questionnaires. Proclaimed indispensable and pertinent topics have been delved into previously in the following areas (Klonoff, 2014): • Common emotions from the brain injury until outpatient treatment starts • Practical worries and general advice • CRs by proxy • “Why me?” and grief and loss • Overprotectiveness and letting go • Family system disruption, social isolation, and loneliness • Uncertainty about the future and “what ifs” • Burnout • Rites of passage and the future Presently, education covers a broad array of topics: • Overview of the principles and process of holistic neurorehabilitation at CTN • Basic neuroanatomy • Explanation of specific therapy modalities and methodologies

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• The rationale and implementation of compensations • Steps toward community reintegration • Typical emotional and adjustment challenges for the survivors and their families • Coping and adaptation strategies for relatives and their loved ones • How to eliminate burnout and foster self-care • Various community resources to address day-to-day, financial, social, and future planning inquiries Appendix 9.1 on the book’s companion website contains a more detailed list of family group educational topics covered from 2013 to mid-2023, from which the facilitators can choose to optimize global instruction. There is also a general resources list in the book’s companion website for future planning resources related to legal, health, and financial advisors. Handouts are provided of each educational presentation, following which the content is uploaded into a hospital portal for easy access. The FEM and PEM are regularly revisited, with laminated copies of the FEM strategically placed around the room. Often, there is a flow from the educational topic to the support segment as attendees self-­reflect on the content. Support Segment

The second component of family group is emotional support by only the psychotherapists, whereby caregivers can freely commiserate and bolster one another. Facilitators employ open-ended questions about how caregivers are faring; they take more of a listening stance, inserting occasional tidbits to encapsulate themes. Attendees are reminded to take the necessary time to delve into their predicaments as there is a tendency to lapse into exclusive focus on their loved one, sometimes as a defense mechanism for inner reflection and self-­disclosure of excruciating sentiments (Klonoff, 2010, 2014). Emotional outpourings and venting range from worries, fears, and inevitable vexations to expressions of relief, glee, and gratitude (dubbed “thankful Thursdays”) (Klonoff, 2014). Frequently, others reference the value and appreciation of sharing with those who “are in the same boat” (Klonoff, 2010, 2014). If applicable, break-out sessions are available, like splitting the relatives into groups based on the unique roles of parents versus spouses, and the like. Peer advice is a powerful therapeutic tool, especially when more seasoned members can encourage disillusioned and overwhelmed newcomers. Case in point, earlier on, relatives express dismay when patients resort to scapegoating behavior and other squabbles with them and/or exhibit resistance and an inability to generalize therapeutic constructs to the home and community environments. Family mentors provide reassurance that these tendencies dissipate over time, thereby boosting faith in the therapeutic process. Appendix 9.2 on the book’s companion website contains verbalizations collected during family group since 2013; distributing subsets of these facilitates self-­reflection and catharsis. These have been first categorized according to themes of emotional challenges and dissolution in the caregiver compared with the survivor. Of note, the most frequent sentiment articulated by participants is the feeling that they are on a “roller coaster.” Other refrains are general wear and tear of the longevity of the issues, feeling alone in contending with the totality of the



Interventions for Families, Tiers of Support, and Aftercare 393

situation, and struggles in adapting to the myriad of differences in the survivor as well as life’s disruptions. Second are verbalizations related to the emotional reconstitution in the caregivers based on observations about the loved one and themselves. Themes pertain to the value of being part of the family group experience and a gradual (re)building of skill sets and coping mechanisms in all parties. One wife proclaimed her resiliency as “bouncing forward, not back.” Third, revelations are collated according to feelings of hopefulness for a bright future for all entities, albeit one that is different and punctuated by life’s episodic disequilibrium. Questionnaire data show that attendees find that listening to prior family graduates and their loved ones’ stories regarding triumphs, adversities, and resolutions is very worthwhile. Special projects are bonding for the relatives (and their loved ones), for example, a mask project sponsored by the Brain Injury Alliance nationwide (unmaskingbraininjury. org). Families were invited to create a mask depicting their journey after the brain injury. Then the relatives and patients met conjointly to present their masks to the group and explore the masks’ symbolism. Themes included making the invisible injury visible, releasing emotional turbulence, grief, loss, and loneliness; beauty emerging from tragedy; commonalities of the journeys; and gratitude for others’ kindheartedness. See Figure 9.14 for a sample mask of a caregiver and the associated loved one’s fabrication, with their respective write-ups (a colorized version appears at the book’s companion website). Review of 11 years of group content yields the most helpful conversations circulate around how to incorporate self-care. Figure 9.13 formalizes ideas for self-care centered on (Klonoff 2010, 2014; Klonoff et al., 2008; Klonoff & Prigatano, 1987; Paris, 2002): • Emotional sustenance resources • Self-­empowerment • Emotional replenishment • Neurorehabilitation ideas and compensations • Practical suggestions • Activities Round‑Robin Updates

The final segment of family group is round-robin updates. At this time, other interdisciplinary therapists rejoin, so as to provide richer sources of input, keeping the support network more “in the loop” (Klonoff, 2010, 2014). The emphasis is on general feedback that is positive and reflects gains. More problematic matters are relegated to private meetings. Hearing the progress of each other’s loved ones sets the stage for feats to come and is both informative and ultimately inspiring to the support network (Klonoff, 2010).

Aftercare Groups during Post‑Acute Neurorehabilitation Longer-­range resources for survivors and their support networks are crucial, as brain injuries are a lifetime matter. Long-­running support groups serve as a lasting lifeline. Although

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Transfer of Skills

Injury:  Severe Traumatic Brain Injury (TBI). My son Alec was in a roll-over car accident and was found unconscious with a right-sided skull fracture and severe shearing of the brain. He had a trach and feeding tube. He was hospitalized for 97 days.

Injury:  TBI. I hit a curb and blew a tire because I was speeding. My car flipped and ended up in a ditch on the side of the road. I suffered a severe TBI.

Explanation of mask:  My mask has bars on it because I feel trapped. The bars are supposed Explanation of mask:  Road—symbolizes my to represent that I feel like I am in a prison journey with it winding into the storm and then wanting to be FREE. It just feels like everyone into a beautiful sunny day. Very traumatic but is telling me what I can and can’t do. My mask also grateful. Cloud—is in the shape of a brain also has a four leaf clover on it to show how and it is showing a storm. The rain turns into lucky I am. It could have been a lot worse and my tears to symbolize the sadness that I feel for I might not even be alive. So I have a lot to be Alec. Sun rays—the joy that I’m feeling that Alec grateful for. is still here with us and from the rain the sun will shine down on us and new growth begins. HEART—although my heart feels broken it is larger than ever with gratitude for all who have saved my son.

FIGURE 9.14.  Mask project.



Interventions for Families, Tiers of Support, and Aftercare 395

these can be in person and range from regularly to intermittent, best practice recommendations now suggest use of telephone visits, telemedicine, or virtual groups as effective alternatives, especially when the relatives cannot travel or access care and services (Klonoff, 2014; Mountain et al., 2020; Winstein et al., 2016; Yeates, 2009).

Aftercare Group for Patients and Families at the CTN General Overview and Goals The rationale, composition, and objectives of the aftercare group for patients and their support networks are explained elsewhere (Klonoff, 2010, 2014). The goal is to come together to expand knowledge, receive emotional support, and share feelings, concerns, and accomplishments in a judgment-­free atmosphere. This invaluable resource is provided for graduates of the CTN program and their relatives so as to provide ongoing emotional sustenance, peer mentoring and socialization, as well as psychoeducation and resource dissemination for the long haul, as they face various life vicissitudes (Klonoff, 2010, 2014). In the context of unity and diversity, a common thread is mingling and sharing with colleagues who “walk in their shoes” (Klonoff, 2010). With the recent COVID-19 pandemic, the CTN aftercare groups temporarily transferred to an online format, which was a so-so substitute, but may also be more feasible in certain communities and situations. Prior publications have delineated educational topics for both aftercare groups (Geard, Kirkevold, Løvstad, & Schanke, 2020; Walsh, 2016; see Klonoff, 2010, 2014, for more details), which typically recirculate to: • Various survivor problems such as executive functions, abandonment of compensation usage, and ways to course-­correct • Practical worries as in providing for the loved one’s future needs when the primary caregiver becomes unavailable; financial stressors • The snags and evolution of coping and adjustment related to either progress or regression; lingering sadness, grief, and loss; alterations in sense of self; contemplating new career, school, and relationship prospects; and shifts in personal definition, roles, aspirations, and quality of life while finding a life balance • Community reintegration, socialization, and resources for each party like driving, adaptive sports, updated computer cognitive tasks for the patient, mutual self-­ sufficiency, and friendships • Existential considerations of resourcefulness, resiliency, transformation, meaning making, intentions, hope, self-­actualization, posttraumatic growth, and silver linings

Structure and Process Our aftercare groups run monthly and are open-entry open-exit. They have been in operation since 2006 and a number of “regulars” have been there since their inception, breeding strong attachments (Klonoff, 2010). They are facilitated by one neuropsychologist and one

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Transfer of Skills

rehabilitation psychologist as a backup. Dinner is served before and after the group; this is often where some of the best exchanges and collaboration spontaneously unfold. Each group accommodates 12–16 members, 18 years and older, and lasts an hour (Klonoff, 2010, 2014). Topics are solicited from attendees, although an armamentarium of backup instructional and multimedia options sparks discussions, also emanating from group psychotherapy and/or family group (see Chapter 4, Figure 4.12, and Appendix 9.1 on the companion website; Klonoff, 2010, 2014). Often, the dialogue is fairly unstructured, as everyone seems to enjoy revealing anecdotal information about achievements, missteps, and stressors (Klonoff, 2010).

Protocol The groups run consecutively: the relatives’ portion first from 5:00 to 6:00 P.M. to accommodate work schedules, followed by the survivor segment from 6:00 to 7:00 P.M. Sometimes, the groups are combined, for example, for guest speakers (from the team dietitian and social worker or prior patient and family graduates) and special art projects. At the outset of the groups, we review the group purpose and etiquette. A review of the importance of confidentiality is followed by brief introductions and general updates on intervening events between meetings. New arrivals are warmly welcomed by the seasoned veterans, with the promise of enduring camaraderie from likeminded others who “get it” (Klonoff, 2014). Attendees regularly reflect on how they find the time invaluable, including: • Feeling of returning to “home base” and staying “plugged in” • Reminders of core CTN treatment philosophies, interventions, and compensations • Chance to share new and intentional joyfulness • “Life saver” supply of support and socialization • Source of self-care and a way to get recharged • Lifeline to brainstorm solutions to annoyances, dilemmas, pitfalls • Meaningfulness of being with others with overlapping life stories and revelations Given the groups’ sophistication and closeness, often the facilitators take a “back seat,” allowing free-­flowing and unhindered disclosure, venting, and emotional reconstitution (Klonoff, 2014). Families and patients resonate with misfortune and relate to emotional and functional downturns in one another, which are powerful therapeutic tools for peer accountability and empathic responsiveness (Klonoff, 2010, 2014). Based on material spanning from 2012 to mid-2023, Appendix 9.3 on the book’s companion website summarizes recurring topics in the family aftercare group that juxtapose practical and existential matters pertaining to the family unit’s ongoing disquiet and recuperation. Appendix 9.4 at the same site offers relatives’ verbalizations that predominantly reflect the evolving healing and adjustment processes for the foreseeable future as well as their sentiments of gratefulness. The saliency of their self-care is always highlighted (see Figure 9.13) and peers can apply “therapeutic pressure” when the survivors or support network are struggling to commit to self-­preserving behaviors (Klonoff, 2010).



Interventions for Families, Tiers of Support, and Aftercare 397

Appendix 9.5 on the book’s companion website summarizes common topics and multimedia resources jointly spawned by survivors and the psychotherapist(s) in the patient aftercare group. These are categorized according to awareness, acceptance, communication and social skills, as well as realism and adjustment. There is fluid, deep exchanges and mentorship between peers; often, they pledge to actualize take-home messages through personal acts of kindness and integrity. Topics range from tribulations to triumphs in their everyday lives along the theme of “no challenge, no change” and “transforming surviving to thriving,” citing lyrics like “from the dark end of the street to the bright side of the road” (Morrison, 1979). Certain traditions occur in both the patient and family aftercare groups. Time is reserved to review upcoming community events, for instance, support, social, and athletic events; and conferences, with peer encouragement to expand horizons and try new outlets. Mindfulness exercises are interspersed for inner attunement. Both groups conclude with a “circle of positives,” whereby members comment on something that has transpired or that they are looking forward to. In the spirit of social consciousness, attendees of both aftercare groups are not billed through insurance for this group; instead, if affordable, they make a $10 donation to assist others to receive neurorehabilitation (Klonoff, 2010).

LE S SO N S LE A R N E D 1. Holistic training, education, and compensations for the caregiver and support network are integral to the patients’ neurological recovery, progress in neurorehabilitation, growth in agency and self-­sufficiency, and maintenance of therapeutic gains and competencies for the long haul. The family’s contributions and buy-in are imperative in this regard. The FEM and inclusion of tiers of support pave the road for healing and reconstitution. 2. A multimodal approach is ideal with clinic and home-based interventions to maximize functional independence; occupational therapists take the lead, but all disciplines and pertinent physicians weigh in using their expertise to collaborate with the patient and caregiver(s). Key are the patients’ individualized HIC, datebook, and checklist systems with associated relatives’ versions. Family milieu meetings focus on basic home responsibilities and breed twoway communication, reciprocal relationships, and interpersonal harmony. Healthy eating tips from a dietitian are beneficial for the whole family, so as to promote everyone’s physical well-being, translating to the highest emotional and functional status. 3. Home visits are invaluable and collaboration with the patient, relatives, interdisciplinary team, and treating physicians is a prerequisite for increasing independence, also related to reducing supervised time. The severity of physical, cognitive, emotional factors, and practical considerations (e.g., finances) will determine the need for more external supervision, versus procurement of the

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Transfer of Skills

services of an external personal assistant, versus living independently, always with an emphasis on the survivor’s safety in all arenas. 4. Psychological treatment for the support network is critical for long-­lasting knowledge about ABI and maximal emotional reserves. Useful venues are family therapy and a family group that incorporates education, emotional support, and round-robin updates. Aftercare groups for the program graduates and their relatives provide infinite long-­lasting learning opportunities, connectedness, peer mentoring, socialization, and emotional sustenance and are a fortifying resource for optimized productivity, gratefulness, joy, and ultimately life’s beauty and meaning.

FORM 9.1

Patient’s Paper Home Independence Checklist Name:  Week #   Sun. Mon. Tues. Wed. Thurs. Fri. Sat. MORNING (date) (date) (date) (date) (date) (date) (date) Take A.M. meds daily. Make bed daily. Review datebook daily. Log breakfast daily. Fill up water bottle daily. Feed dog/cat daily. AFTERNOON Complete Home Exercise Program (HEP): • Speech therapy 3×/week • Occupational therapy 2×/week • Physical therapy 2×/week Make dinner 3×/week. Do dishes 3×/week. Fold laundry 2×/week. Take out trash/recycle bin(s) 2×/week. EVENING Review datebook daily. Set out clothes for the next day Monday–Friday. Shower daily. Journal at least 3×/week. Take P.M meds.

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

399

Patient’s Paper Home Independence Checklist  (page 2 of 2) WEEKLY

Sun. Mon. Tues. Wed. Thurs. Fri. Sat. (date) (date) (date) (date) (date) (date) (date)

Water plants 1×/week. Fill pillbox 1×/week. Write out weekly expenditures 1×/week.

MONTHLY

Week 1 (date)

Refill medication prescriptions 1×/month. Review expenditures and budget 1×/month. Signature: 

400

Week 2 (date)

Week 3 (date)

Week 4 (date)

Week 5 (date)

FORM 9.2

Caregiver’s Version of the Patient’s Paper Home Independence Checklist Name:  Week #   Sun. Mon. Tues. Wed. Thurs. Fri. Sat. MORNING (date) (date) (date) (date) (date) (date) (date) Cue/observe [patient] taking A.M. meds daily. Cue/observe [patient] making bed daily. Review datebook with [patient] daily. Cue/observe [patient] logging breakfast daily. Cue/observe [patient] filling up water bottle daily. Cue/observe [patient] feeding the dog/cat daily. AFTERNOON Observe/assist [patient] completing the Home Exercise Program (HEP): • Speech therapy 3×/week • Occupational therapy 2×/week • Physical therapy 2×/week Cue/observe [patient] making dinner 3×/ week. Cue/observe [patient] doing dishes 3×/ week. Cue/observe [patient] folding laundry 2×/ week. Cue/observe [patient] taking out trash/ recycle bin(s) 2×/week.

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

401

Caregiver’s Version of the Patient’s Paper Home Independence Checklist  (page 2 of 2) EVENING Review datebook with [patient] daily. Cue/observe [patient] setting out clothes for the next day Monday–Friday. Cue/observe [patient] showering daily. Cue/observe [patient] journaling at least 3×/week. Cue/observe [patient] taking P.M. meds daily.

WEEKLY

Sun. Mon. Tues. Wed. Thurs. Fri. Sat. (date) (date) (date) (date) (date) (date) (date)

Cue/observe [patient] watering plants 1×/ week. Cue/observe [patient] filling pillbox 1×/ week. Cue/observe [patient] writing out weekly expenditures 1×/week.

MONTHLY

Week 1 (date)

Cue/observe [patient] refilling medication prescriptions 1×/month. Cue/observe [patient] reviewing expenditures and budget 1×/month. Signature: 

402

Week 2 (date)

Week 3 (date)

Week 4 (date)

Week 5 (date)

FORM 9.3

Electronic HIC: Patient Template Name:  Date: Week of DAILY TASKS Tasks: MORNING

Sun.

Mon.

Tues.

Wed. Thurs.

Fri.

Sat.

Sun.

Mon.

Tues.

Wed. Thurs.

Fri.

Sat.

Take a.m. medication(s). Review electronic datebook in a.m. Fill out sleep diary. Complete breakfast log. LUNCH Complete lunch log. EVENING Complete dinner log. Review and update your datebook in p.m. Pack lunch. Journal about my day. Take p.m. medications. WEEKLY TASKS Tasks: Meditate 4×/week. Check the mail 4×/week. Do strength/stretch/balance exercises 2×/ week. Do cardio/aerobic exercises 2×/week. Fill pillbox 1×/week. Clean bathroom 1×/week. Complete laundry 1×/week. Write out weekly expenditures 1×/week.

(continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

403

Electronic HIC: Patient Template  (page 2 of 2) MONTHLY TASKS Tasks:

Week 1

Refill medication prescriptions 1×/month. Review expenditures and budget 1×/month. Signature: 

404

Week 2

Week 3

Week 4

Week 5

FORM 9.4

Electronic HIC: Caregiver Template Name:  Date: Week of OBSERVE ALL TASKS AND NOTATE ON THE GRID DAILY TASKS Tasks: MORNING

Sun.

Mon.

Tues.

Wed. Thurs.

Fri.

Sat.

Sun.

Mon.

Tues.

Wed. Thurs.

Fri.

Sat.

Take a.m. medication(s). Review electronic datebook in a.m. Fill out sleep diary. Complete breakfast log. LUNCH Complete lunch log. EVENING Complete dinner log. Review and update your datebook in p.m. Pack lunch. Journal about my day. Take p.m. medications. WEEKLY TASKS Tasks: Meditate 4×/week. Check the mail 4×/week. Do strength/stretch/balance exercises 2×/ week. Do cardio/aerobic exercises 2×/week. Fill pillbox 1×/week. Clean bathroom 1×/week. Complete laundry 1×/week. Write out weekly expenditures 1×/week. (continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

405

Electronic HIC: Caregiver Template  (page 2 of 2) MONTHLY TASKS Tasks:

Week 1

Refill medication prescriptions 1×/month. Review expenditures and budget 1×/month. Signature: 

406

Week 2

Week 3

Week 4

Week 5

FORM 9.5

Family Milieu Meeting Agenda Name:   Date:  1. List phone calls, emails, and other to-do’s for the week:

1a. Who is responsible?   Document in datebook. 1b. What information is needed?

  Document in datebook. 1c. Create a script:

  Document in datebook. 2. Set times for my Home Exercise Program (HEP)—cardio portion in the pool:

  Document in datebook. 3. Check in about the Home Independence Checklist (HIC)—if there are snags:

  Document in datebook. (continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

407

Family Milieu Meeting Agenda  (page 2 of 2) 4. Spot-check datebook for completion and avoidance of forwarding assignments (limit = 3/ week):

5. Review and

schedules (including social events and holidays):

  Document in datebook. 6. Discuss finances/budget:

  Document in datebook. 7. Topics for next psychotherapy appointment:

  Document in datebook.

408

FORM 9.6

Dos and Don’ts List When Home Alone Name:   Date:  Dos

Don’ts

• • • • • • • • • • • • • • • • •

• • • • • • • • • • • • • • • • •

These recommendations have been developed by your therapists based on your current status. Your physician, Dr. [name], has also reviewed these recommendations and is in agreement. These recommendations will be reevaluated and updated regularly based on your progress. From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

409

FORM 9.7

Pillbox, Laundry, and Home Exit Checklists Name:  Filling a Pillbox Date

Date

Date

Date

Date

Date

 1. Fill pillbox on Sunday evenings after taking Sunday night meds.  2. Before filling, all of the pillbox slots should be empty.  3. Place all bottles to the left of the pillbox.  4. Fill up a.m. slots for the entire week.  5. Close all a.m. slots.  6. Move all completed pill bottles to the right of the pillbox.  7. Fill up noon slots.  8. Close all noon slots.  9. Fill up p.m. slots for the entire week. 10. Close all p.m. slots. 11. Double-check your work. There should be: a. [X] pills in the A.M. slots. b. [X] pills in the noon slots. c. [X] pills in the P.M. slots. Laundry Checklist

1. Take dirty clothes in the hamper to the laundry room. 2. Sort clothes into two piles (darks and lights). 3. Check pockets and put the first set of clothes in the washer. 4. Pour in detergent and fabric softener to the maximum line. 5. Set to: a. Regular wash b. Temperature is on hot or cold c. Spin cycle is on medium d. Set “end cycle” alarm (continued) From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

410

Pillbox, Laundry, and Home Exit Checklists  (page 2 of 2) 6. Dryer: Move clothes from the washer to the dryer. a. Clean lint basket. b. Place dryer sheets in the dryer. c. Set “timed dry” (40 minutes). d. Set “finish cycle” alarm on. 7. If clothes are still moist or wet: a. Close dryer door, leaving clothes inside. b. Turn dryer dial to “touch up” (20 minutes). c. Make sure dryer alarm is set to “LOUD.” d. Press and hold start button. 8. When alarm goes off, remove the clothes from dryer, fold, and put away. 9. Repeat the same steps with the second load of laundry. Home Exit Checklist Date  1. Did I take my morning meds?  2. Did I put deodorant on?  3. Did I feed my dog/cat?  4. Is my wallet in my pocket?  5. Is my phone in my pocket?  6. Get lunchbox out of fridge.  7. Fill up a 64-ounce water bottle.  8. Make sure to take my cane.  9. Check if my backpack contains the following: • Therapy binder • Datebook • Snack • Lunch • Keys 10. Check to make sure I locked the door on the way out.

411

Date

Date

FORM 9.8

Tier 2 Support Network Checklist Name:   Date:  Place an “X” in the corresponding box when each step is completed.

Extended Family

Friend

Personal Assistant

Attend trainings with CTN therapists. Monitor/cue [patient] to use [his/her] datebook throughout the day every day. Keep it open and accessible at home. If you ask [patient] to do or remember something, please make sure [he/she] has written it down immediately in [his/her] datebook. Cue [him/her] to read notes back to you to make sure the information is accurate. Monitor/assist [patient] in creating scripts for phone calls. Monitor/cue [patient] to always take notes in [his/her] datebook for appointments and meetings. Monitor/cue [patient] to record in [his/her] datebook WHAT [he/ she] does each day. Monitor/encourage/supervise [patient’s] exercise schedule to ensure safety (join [him/her] if appropriate and have fun). Monitor/cue [patient] to schedule weekly household tasks in [his/ her] datebook. Monitor/encourage [patient] to drink water throughout the day. Monitor/help [patient] with meal planning and preparation. Monitor/encourage/cue [patient] to follow the portion nutrition guidelines and to record meals in the food log in the datebook before or immediately after eating. Assist [patient] with transportation (e.g., drive [him/her]) and/or help set up rides (e.g., paratransit, taxi, car service). Monitor/cue/assist [patient] with [his/her] home hobby/quality-oflife activities. Assist [patient] in registering and taking community leisure/ learning classes. (Attend with [him/her] if appropriate.) Monitor/cue [patient] as [he/she] fills the pillbox on Sunday and assist with obtaining refills. Participate in weekly/monthly milieu meetings with [patient] and primary caregivers to promote communication and effectiveness. From Holistic Neurorehabilitation: Interventions to Support Functional Skills after Acquired Brain Injury by Pamela S. Klonoff. Copyright © 2024 The Guilford Press. Permission to photocopy this material, or to download and print additional copies (www.guilford.com/klonoff2materials), is granted to purchasers of this book for personal use or use with patients; see copyright page for details.

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Index

Note. f or t following a page number indicates a figure or a table. Abstract reasoning, 63, 324t Academic functioning, 64. See also School re-entry Acceptance assessment and treatment planning and, 10–16, 12f, 14f–15f cognitive rehabilitation and, 55, 58, 73f, 74f communication pragmatics and, 144f–149f groups for cognitive rehabilitation and, 64 overview, 7–8, 42 PEM glossary, 72f psychotherapy techniques and, 134f, 139 return-to-work process, 266, 269 working definition of, 5–6 Accommodations, 238. See also Compensations Accountable care organizations (ACOs), 34 Acquired brain injuries (ABIs) cognitive rehabilitation and, 60–61 overview, 5 parenting skills and, 244–259, 248t, 249f, 250f, 251t, 252f–254f, 256t, 257f realism and, 8–9 return-to-driving process, 236– 244, 238t, 240t–241t, 243f self-awareness and, 7 technology for physical impairments and, 204–205 working alliance and, 18 Active engagement, 63

Active learning, 63 Active listening, 115f, 307f. See also Communication pragmatics Activities of daily living (ADLs) caregiver education for the home environment and, 361–362, 371f compensation aids, 216, 218, 219 parenting skills, 244–259, 248t, 249f, 250f, 251t, 252f–254f, 256t, 257f technologies for physical impairments and, 206 See also Instrumental activities of daily living (IADLs); Parenting skills Adaptability, 20–21, 28, 144f–149f Adaptation assessment and treatment planning and, 114 cognitive rehabilitation and, 60, 97 external adaptation, 139 family psychotherapy, 392 generalization, 54 group psychotherapy and, 14f, 16, 144f–148f overview, 48, 294 parenting skills, 247 realism and, 8, 11, 28, 144f–148f return-to-work process, 276 working alliance construct and, 22 Adaptive tai chi, 173–175, 175t, 197 Adaptive yoga, 14f, 175–177, 176t, 197 Adjustment acceptance and, 8 communication pragmatics and, 144f–149f

438

family psychotherapy, 389t realism and, 8–9, 28 return-to-work process, 266, 269 See also Functional competence Adjustment disorders, 160. See also Psychiatric disorders Administrative factors, 33–39, 36f–37f, 48 Admission criteria, 40, 41f, 48–49 Adolescents, 294–295 Aftercare groups, 393, 395–397 Agitation, 21, 158, 162t Alarms, 217t, 219–220. See also Memory compensation Alcohol cognitive rehabilitation and, 80f intake consultation and, 42 medications and, 162t psychiatric care and, 157 psychoeducation regarding, 161 screening and, 25f, 41f See also Substance abuse Alliance deterioration, 21, 23–24, 25f. See also Working alliance Alter ego, 20, 135f Ambidextrous leadership, 24–25, 28 Americans with Disabilities Act (ADA), 328 Anger, 77f, 88f, 134f, 142, 145f, 158f, 172, 382f–383f Anticipatory awareness, 7, 13. See also Awareness Anxiety and anxiety disorders medications and, 162t psychiatric care during post-acute neurorehabilitation and, 160

psychotherapy techniques and, 137–138 school re-entry and, 325t, 327t See also Psychiatric disorders Aquatic therapy, 14f, 171–173, 173t, 197 Art therapy, 16, 150, 151f Assessment awareness, acceptance, and realism and, 6, 10–16, 12f, 14f–15f caregiver education for the home environment and, 361 communication pragmatics and, 114, 119f, 121–129, 122f, 123f, 124f–125f, 126f, 163 constructing neurorehabilitation programs and, 32 functional skills and, 171 psychiatric care and, 157, 158f–159f return-to-driving process, 239–242, 240t–241t return-to-work process, 262, 263f–265f, 266 self-awareness and, 7 technologies for physical impairments and, 205–206, 210 Assistive Technology Act Programs (ATAP), 216, 330 Assistive technology (AT) current events group and, 316 overview, 205, 228 school re-entry and, 330 See also Augmentative and alternative communication (AAC); Memory compensation; Technology in neurorehabilitation Association of Assistive Technology Act Program (ATAP), 216, 330 Attention functioning communication pragmatics and, 119f school re-entry and, 323t, 325t, 326t, 327t working alliance construct and, 21 See also Cognition and cognitive challenges Audio recording, 13 Auditory comprehension, 3, 14f, 179, 184, 222, 224, 226f, 231t Auditory processing, 119f. See also Language Augmentative and alternative communication (AAC), 213–218, 214t, 217t, 228. See also Technology in neurorehabilitation Auxiliary ego, 20 Awareness assessment and treatment planning and, 10–16, 12f, 14f–15f cognitive rehabilitation and, 54, 55, 58, 73f, 74f

Index 439 communication pragmatics and, 119f, 144f–149f groups for cognitive rehabilitation and, 64 overview, 6–7, 28, 42, 170 PEM glossary, 72f psychotherapy techniques and, 134f, 139 return-to-work process, 266, 269 school re-entry and, 325t, 327t working alliance construct and, 20 working definition of, 5–6 See also Functional competence Awareness Questionnaire (AQ), 7 Balance adaptive tai chi and balance groups and, 173–175, 175t adaptive yoga and, 175–177, 176t cognitive rehabilitation and, 87f–89f Behavior logs, 13, 120f Behavioral problems probation and, 24, 25f psychotherapy techniques and, 134f school re-entry and, 325t, 327t working alliance construct and, 21 Bilateral coordination, 364f Bookmarks and greeting cards work project, 196–197, 203 Boot camp, 72f, 73f Bottom-up restorative/retraining, 54, 97 Boundary setting, 135f, 137 Brain structures and functions, 77f–80f Burnout, 134f, 388t Cake day, 72f, 141f. See also Graduation; Termination Calendar, 217t, 220. See also Datebook use Career functioning. See Employment functioning Caregiver education for the home environment Home Independence Checklist (HIC), 363–367, 364f–366f overview, 361–378, 364f–366f, 369f, 370f, 371f–372f, 373f, 374f–375f, 377f, 397. See also Support networks Caregiver participation, 120f. See also Caregiver education for the home environment; Family participation; Support networks Case management, 24–27, 26f, 134f Catastrophic reactions (CRs) awareness and, 6 cognitive rehabilitation and, 56, 73f family psychotherapy, 388t

group psychotherapy, 145 overview, 16, 359 parenting skills and, 258 PEM glossary, 72f psychotherapy techniques and, 258 school re-entry and, 325t, 327, 327t Catastrophic reactions (CRs) by proxy, 145, 258, 359, 382f, 388t, 391 Center for Transitional NeuroRehabilitation (CTN), 40–48, 41f, 43f, 46f–47f. See also Holistic milieu environment Challenges. See Strengths and challenges Characterological factors, 20, 21, 24, 137, 138, 157, 387 Checklists parenting checklists, 251, 253f–254f, 255 return-to-work process, 262, 264f–265f self-awareness and, 127 See also Assessment Childrearing skills, 244–259, 248t, 249f, 250f, 251t, 252f–254f, 256t, 257f Chores, 31, 41f, 91f, 213, 256t, 361, 363, 368. See also Independence; Living alone; Real world “Circle of positives,” 298–299, 298f Clinical director job duties, 46f Clinical leadership, 35, 38 Coaching, 20–21, 85, 89 Cognition and cognitive challenges caregiver education for the home environment and, 364f case example, 53 cognitive rigidity, 56 communication pragmatics and, 115f, 119f parenting skills, 248t post-acute neurorehabilitation and, 53–55 recreational therapy and, 311t return-to-driving process, 238t school re-entry and, 323t, 326t technologies for, 213–218, 214t, 217f, 223–228, 225f, 226f, 227t, 229f–230f, 230t–231t See also Attention functioning; Executive functions; Information processing; Memory; Strengths and challenges; Working memory Cognitive compensations. See Compensations Cognitive distortions, 113, 135f, 258 Cognitive rehabilitation group therapies and, 60–64 memory compensation group, 85, 89, 91f–96f, 96–97, 98f–99f

440 Cognitive rehabilitation (cont.) overview, 53–60, 57f, 59f, 61f, 97 psychoeducation group and, 64–85, 65f, 67f–68f, 70f–72f, 73f–76f, 77f–80f, 81f–84f See also Cognitive retraining Cognitive retraining cognitive rehabilitation and, 97 overview, 11, 14f, 42, 53, 54 protocols for, 58–60, 59f, 61f See also Cognitive rehabilitation Collaboration goal attainment scaling and, 9 groups for cognitive rehabilitation and, 63 overview, 19 psychotherapy techniques and, 135f staff meetings and, 24–27, 26f Collateral data, 136f, 361 College re-entry, 321f, 328–332. See also School re-entry Communication pragmatics assessment and, 114–129, 115f–120f, 122f, 123f, 124f–125f, 126f, 128f awareness, acceptance, and realism and, 10, 128 case example, 112–113 cognitive rehabilitation and, 55 communication pragmatics group, 129, 130f–131f current events group and, 316–317 overview, 115f–120f, 163 parenting skills, 248t PEM glossary, 72f post-acute neurorehabilitation and, 113–114 recreational therapy and, 311t school re-entry and, 326t socialization groups and, 305 treating using logs, 121–129, 122f, 123f, 124f–125f, 126f, 128f treatment planning and, 114–121, 115f–120f See also Communication skills; Language Communication pragmatics logs, 121–129, 122f, 123f, 124f–125f, 126f Communication skills, 20, 55, 64, 120f, 124f, 272, 384. See also Communication pragmatics; Skills training Community functioning, 31, 33, 55 Community mobility, 372f Community outings hang-out group and, 306, 309 overview, 14f, 186–189, 187f, 188f, 190f–191f, 197 See also Recreational therapy; Socialization group

Index Community reintegration adaptive yoga and, 176 aftercare groups, 395 assessment and treatment planning and, 116f, 128–129 awareness, acceptance, and realism and, 14f cognitive rehabilitation and, 58, 60, 64, 72, 97 compensation aids, 211, 215, 219 cooking group and, 177 datebook use and, 367 family psychotherapy, 378, 382f, 389t, 392 group psychotherapy and, 16 overview, 7, 189, 213, 335 psychiatric care and, 156–157 Community settings, 31. See also Constructing neurorehabilitation programs; Holistic milieu environment Comorbid diagnoses, 43t, 45, 134f, 161, 163, 237, 361, 376 Compensation training coaching, 11, 62 cognitive rehabilitation and, 54, 73f, 97 constructing neurorehabilitation programs and, 33 overview, 10 psychiatric care and, 161 See also Compensations; Generalization Compensations acceptance and, 7–8 aftercare groups, 396, 397 assessment and treatment planning and, 14f–15f, 127, 129 caregiver education for the home environment and, 373 cognitive rehabilitation, 56–58, 61f, 62, 63, 67f–68f, 70f–71f, 72, 73f–74f, 80–81, 81f, 82f–84f, 223–224 community outings and, 186, 188f, 192f cooking group and, 177 current events group and, 317 family psychotherapy, 382f–383f, 386f, 389t, 392, 393 friendships and dating relationships module and, 302 generalization, 54, 170 group psychotherapy, 145f–146f healthy eating and, 368 initial consultation and, 43t memory compensation aids and, 216–218, 217t milieu sessions and, 296 overview, 28, 31, 42, 53, 97, 277, 278 parenting skills, 246–247, 249f, 255, 256t

PEM glossary, 72f recreational therapy and, 310–312, 311t return-to-driving process, 237 return-to-work process, 260–262, 265f, 269, 271t, 273f, 275f–276f school re-entry and, 320, 330–332 vocational groups and, 191 See also Compensation training; Generalization; Memory compensation; Real world Complex attention, 325t, 327t Comprehension, auditory. See Auditory comprehension Comprehensive outpatient rehabilitation facility (CORF), 31 Comprehensive programs. See Constructing neurorehabilitation programs; Holistic milieu environment Computerized cognitive and language activities, 223–228, 225f, 226f, 227t, 229f–230f, 230t–231t Confidentiality aftercare groups and, 396 family group and, 391 group psychotherapy and, 150 groups for cognitive rehabilitation and, 63 overview, 10 return-to-work process, 271–272 Consolidation, 91f, 93f Constructing neurorehabilitation programs case example, 40–48, 41f, 43f, 46f–47f choosing a model for, 30–33 implementing and managing, 33–39, 36f–37f overview, 30, 48–49 See also Holistic milieu environment; Multimodal treatment approach Consultation, 40, 42, 43t Conversation, 115f, 302–309, 303f, 304f, 306f, 307f–309f. See also Communication pragmatics Cooking group, 14f, 177–178, 197, 198 Coordination, 173–175, 175t Co-parenting, 255, 257, 257f. See also Parenting skills Coping mechanisms acceptance and, 7–8 cognitive rehabilitation and, 73f–74f, 88f constructing neurorehabilitation programs and, 33 parenting skills and, 258–259 psychotherapy techniques and, 135f, 136f Cost-effectiveness, 32, 48

Countertransference, 24, 134f Cultural factors, 17, 134f Culture in holistic milieu neurorehabilitation settings, 22. See also Holistic milieu environment Current events group, 14f, 316–318, 317f, 319f, 348–349 Daily living activities. See Activities of daily living (ADLs); Instrumental activities of daily living (IADLs) Datebook use alarms and, 219–220 community outings and, 187, 187f current events group and, 316 memory compensation and, 85, 89, 92f, 93f–95f, 218–219 milieu sessions and, 296 overview, 220–222, 221f, 222f return-to-work process, 261–262 school re-entry and, 331 support network and, 360–361, 362, 367–368 when to initiate systems for, 220 See also Note-taking Dating relationships, 144, 295, 333f, 335. See also Socialization group Decision making augmentative and alternative communication and, 214–215, 214t caregiver education for the home environment and, 363 constructing neurorehabilitation programs and, 38 memory compensation aids and, 218–220 return-to-work process, 266, 269 technology for computerized cognitive and language tasks and, 224 See also Executive functions Denial cognitive rehabilitation and, 74f definition, 137 overview, 11 PEM glossary, 72f working alliance construct and, 21 Department manager job duties, 46f–47f Depression medications and, 162t psychiatric care during postacute neurorehabilitation and, 156–161, 158f–159f, 162t psychotherapy techniques and, 137–138 school re-entry and, 325t Diet. See Nutrition Differential diagnosis, 20

Index 441 Difficulties. See Strengths and challenges Disability Resource Services (DRS) on college campuses, 328–329 Disavowal, 11, 72f, 74f Discharge from the program, 25f, 41f, 48–49. See also Graduation; Termination Disintegration, period of, 71f, 74f, 383f Disorientation, 20–21, 41f Distributed practice, 62, 218 Diversity, 9, 17, 18, 19, 134f, 384, 395 Documentation, 39, 42, 45, 46f, 48, 188f, 206, 210, 328 Dog Biscuits work project, 196. See also Vocational group Driving, returning to. See Return-todriving process Dysexecutive Questionnaire (DEX), 7 Eating healthy. See Nutrition “Echo technique,” 120f Education, 15f, 193–194, 195f. See also Psychoeducation; School re-entry Effectiveness, 32, 34 Egocentrism, 116f–117f, 129, 305, 316 Electronic datebook. See Datebook use; Technology in neurorehabilitation Electronic memory compensation aids. See Compensations; Memory compensation; Technology in neurorehabilitation Embedded supervision, 139 Emergency preparedness, 372f Emergent awareness, 7. See also Awareness Emotional challenges emotional brittleness, 21 emotional control and, 115f, 170 empathy and, 17 overview, 8 parenting skills, 248t post-acute neurorehabilitation and, 113–114 recreational therapy and, 311t return-to-driving process, 238t school re-entry and, 325t, 327t See also Mental health challenges; Psychiatric care Emotional/behavioral regulation, 54 Empathic responsiveness family psychotherapy, 387, 389 psychotherapy techniques and, 134f working alliance and, 17–18 Empathy constructing neurorehabilitation programs and, 33 family groups, 391

holistic milieu environment and, 293 milieu sessions and, 295, 300 overview, 28 parenting skills, 248t psychotherapy techniques and, 133, 137, 142, 143 working alliance and, 17–18, 20 Employment functioning, 64, 91f. See also Return-to-work process; Vocational group Encoding, 91f Energy conservation, 372f Environmental contexts, 55, 119f Error analysis, 55, 60 Error corrections, 13 Errorless learning caregiver education for the home environment and, 362–363 cognitive rehabilitation and, 60, 62 memory compensation group and, 92f overview, 13 PEM glossary, 72f Event planning, 14f, 179–180, 181f–183f, 197, 199 Evidence-based practice, 32, 97, 121 Executive functions caregiver education for the home environment and, 362–363 communication pragmatics and, 115f, 119f considerations for home visits and unsupervised time and, 372f dysfunction in, 21 PEM glossary, 72f school re-entry and, 324t, 326t–327t See also Cognition and cognitive challenges Existential assimilation, 8–9, 28, 139, 144f–149f Experiential models. See Family experiential model of recovery (FEM); Patient experiential model of recovery (PEM) Expressive language skills, 119f. See also Language Family experiential model of recovery (FEM) case example, 360 family groups, 392 family psychotherapy, 380, 389 overview, 4, 74f, 380, 382f–383f, 397 psychoeducation group and cognitive rehabilitation and, 66 working alliance construct and, 23 Family functioning. See Parenting skills

442 Family milieu meetings caregiver education for the home environment and, 362, 367–368, 369f overview, 397 See also Family participation Family participation datebook use and, 221–222, 222f family groups, 13, 14f, 16, 42, 390–393, 394f family meetings, 10–11 overview, 21, 397 psychotherapy and, 378–389, 380f, 381f, 382f–383f, 385f–387f, 388t–389t technology for computerized cognitive and language tasks and, 230t–231t See also Caregiver education for the home environment; Caregiver participation; Family milieu meetings; Support networks Family psychotherapy, 378–389, 380f, 381f, 382f–383f, 385f–387f, 388t–389t Family systems, 294–295 Fast-Track Program, 44. See also Return-to-work process Feedback caregiver education for the home environment and, 361 communication pragmatics and, 120f groups for cognitive rehabilitation and, 63 overview, 13 working alliance construct and, 20 Field trips. See Community outings Films. See Movies Financial factors, 34, 36f–37f, 38–39, 48, 376 Fine-motor skills, 364f “Flight into health,” 72f, 74f Follow-through, 324t, 326t, 363. See also Executive functions For-profit models, 38–39. See also Financial factors Friendships, 294–295, 302, 335 Functional competence adaptability and, 54 adaptive tai chi and balance groups and, 173–175, 175t adaptive yoga and, 175–177, 176t aquatic therapy and, 171–173, 173t assessing and treating, 171 communication pragmatics and, 116f community outings and, 186–189, 187f, 188f, 190f–191f compensation and, 31

Index constructing neurorehabilitation programs and, 31 cooking skills and, 177–178 event planning and, 179–180, 181f–183f functional mobility, 371f initial consultation and, 43t newsletter group and, 180, 184–185, 185f overview, 170, 197 technology for computerized cognitive and language tasks and, 223 vocational groups and, 189, 191–197, 195f working alliance construct and, 21 See also Adjustment; Awareness; Compensations; Goal setting; Instrumental activities of daily living (IADLs); Mastery; Stepwise goal setting Functional electrical stimulation (FES), 204–205. See also Technology in neurorehabilitation Future, 73f, 74f, 144f–149f Games, 120f, 204–205, 210, 223, 227t Gender identity, 18–19, 134f. See also Identity Generalization, 54, 61–62, 170. See also Real world Goal setting cognitive rehabilitation and, 54, 61, 85 communication pragmatics and, 119f community outings and, 186–187, 187f overview, 9, 28, 170 See also Functional competence Go/no-go choices, 42 Google Calendar, 220. See also Datebook use Graduation, 332, 334–335, 334f, 336f, 337, 357–358. See also Cake day; Termination Grief, 16, 134f, 388t Group facilitators, 62, 64. See also Therapist qualities Group interventions, 32–33 Group psychotherapy, 14f, 42, 142–152, 144f–149f, 151f, 152f, 153f–155f, 163. See also Individual psychotherapy; Psychotherapy Group therapies, 13–16, 14f–15f, 60–64, 74f. See also Group psychotherapy; individual groups

Growth, personal. See Personal growth Guilt, 131, 134f, 137, 145f, 257, 382f, 385f Hand strength, 364f Hang-out group, 306, 309. See also Community outings; Recreational therapy Healthy living, 64, 85, 86f–89f, 90f–96f. See also Nutrition High school re-entry, 321f, 327–328, 329–332. See also School re-entry Hobbies. See Recreational therapy Holistic milieu environment case example, 40–48, 41f, 43f, 46f–47f, 359–360 family psychotherapy, 379–380 overview, 11, 13–16, 14f–15f, 28, 32–33, 293–294 psychiatric care and, 156–157 psychotherapy and, 133, 135f staff meetings and, 24–27, 26f working alliance construct and, 19–24, 23f See also Constructing neurorehabilitation programs; Multimodal treatment approach Home environment caregiver education for, 361–378, 364f–366f, 369f, 370f, 371f–372f, 373f, 374f–375f, 377f memory compensation group, 91f technology for computerized cognitive and language tasks and, 223–228, 225f, 226f, 227t, 229f–230f, 230t–231t Home Exercise Program (HEP), 223, 224–228, 225f, 226f, 227t, 229f–230f, 230t–231t Home Independence Checklist (HIC) caregiver education for the home environment and, 362, 364f–366f case example, 360 datebook use and, 221–222, 222f Home Independence Checklist (HIC), 363–367 milieu sessions and, 296 parenting skills, 246 support network and, 360–361 Home Independence Program, 40, 41f, 44 Home visits, 368, 370, 371f–372f, 373, 397–398 Home-based programs, 30, 31, 212 Homework assignments, 74f, 77f, 120f Honeymoon period, 72f, 73f

Hope, 5, 9, 132, 135f, 137f, 139, 142, 147f, 163, 384, 388t, 389, 395 Hospital settings. See Constructing neurorehabilitation programs; Holistic milieu environment Identity, 5–6, 8–9, 16, 18–19, 27, 28, 134f–135f, 139, 142, 143, 159f, 186, 246, 259, 295, 378, 384, 389t Implementing a post-acute neurorehabilitation program, 33–39, 36f–37f, 48–49. See also Constructing neurorehabilitation programs Impulsivity, 115f, 325t In-class assignments, 74f, 77f Independence, 31, 54. See also Chores; Living alone; Real world; Unsupervised time Independent living, 373, 374f–375f, 410–411 Individual psychotherapy, 131–141, 134f–136f, 137f, 140f–141f, 142f, 163. See also Group psychotherapy; Psychotherapy Individualized education plan (IEP), 328 Individuals with Disabilities in Education Improvement Act (IDEIA), 328 Information processing, 63, 119f. See also Cognition and cognitive challenges Initiation caregiver education for the home environment and, 363 cognitive rehabilitation and, 77f communication pragmatics and, 115f community outings and, 186 parenting skills and, 251 psychoeducation group and cognitive rehabilitation and, 64, 65f recreational therapy and, 311f school re-entry and, 324t, 326t socialization group, 301 technology for computerized cognitive and language tasks and, 231f See also Executive functions Insomnia, 162t. See also Sleep Instrumental activities of daily living (IADLs) caregiver education for the home environment and, 362 constructing neurorehabilitation programs and, 31 parenting skills, 244–259, 248t, 249f, 250f, 251t, 252f–254f, 256t, 257f

Index 443 return-to-driving process, 236– 244, 238t, 240t–241t, 243f See also Activities of daily living (ADLs) Interactive model of psychotherapy, 380, 380f Interdisciplinary approach assessment and treatment planning and, 27, 114, 123 augmentative and alternative communication and, 214, 228 caregiver education for the home environment and, 362, 376–377 cognitive rehabilitation and, 61f family groups, 391 functional skills and, 179, 197 group therapies and, 62–63 overview, 19, 48, 397 parenting skills, 245, 247 post-acute neurorehabilitation and, 206 psychiatric care and, 156–157 return-to-driving process, 237, 242 return-to-work process, 261, 272, 278 school re-entry and, 321f, 330–331 working alliance construct and, 22, 33 See also Transdisciplinary approach Interpersonal trust, 17. See also Working alliance Interventions communication pragmatics and, 120f, 121, 131 parenting skills, 245–259, 248t, 249f, 250f, 251t, 252f–254f, 256t, 257f psychotherapy techniques and, 132–141, 134f–136f, 137f, 140f–141f, 142f return-to-driving process, 237– 234, 238t, 240t–241t, 243f for the support network, 360–361 See also individual interventions Intrapsychic assimilation, 139, 144f–149f Irritability cognitive rehabilitation and, 77f, 88f communication pragmatics and, 115f, 119f community outings and, 186 medications and, 162t parenting skills, 248t post-acute neurorehabilitation and, 131, 158f return-to-driving process, 238t return-to-work process, 271t working alliance construct and, 21 iWordQ Pro, 219. See also Notetaking

Judgment caregiver education for the home environment and, 363 considerations for home visits and unsupervised time and, 372f event planning and, 184 functional skills and, 179 overview, 3, 5 parenting skills, 251 psychiatric care and, 161 return-to-driving process, 237, 242, 244 See also Executive functions Karate Kid functional approach, 10 “Kill the messenger,” 72f, 74f Language current events group and, 316 groups for cognitive rehabilitation and, 63 overview, 115f, 119f parenting skills, 248t recreational therapy and, 311t school re-entry and, 323t, 326t technologies for, 213–218, 214t, 217t, 223–228, 225f, 226f, 227t, 229f–230f, 230t–231t See also Communication pragmatics Learning new information, 93f, 324t, 326t Leisure activities. See Recreational therapy Linguistics, 119f. See also Communication pragmatics Listening, 18, 115f, 120f, 307f. See also Communication pragmatics Living alone, 373, 374f–375f, 410– 411. See also Independence; Real world; Unsupervised time Loneliness, 113, 116f, 142, 143, 294, 382f, 391, 393 Long-term memory, 92f. See also Memory Loss, 16, 134f, 388t Lunchtime groups, 302, 305, 306f, 307f–309f, 336. See also Lunchtime milieu group Lunchtime milieu group, 301, 301f, 302, 305, 306f, 336 Managing a post-acute neurorehabilitation program, 33–39, 36f–37f. See also Constructing neurorehabilitation programs Marginalization, 19 Market analysis, 36f Mask activity, 393, 394f

444 Mastery caregiver education for the home environment and, 361–362 cognitive rehabilitation and, 55 current events group and, 316 datebook use and, 367 family psychotherapy, 387 functional skills and, 16, 197 holistic milieu environment and, 299, 300f, 302, 360 parenting skills, 246, 255 post-acute neurorehabilitation and, 113 psychoeducation group and cognitive rehabilitation and, 66 psychotherapy techniques and, 139 realism and, 8 return-to-work process, 261 transfer of skills and, 170 working alliance construct and, 19 See also Functional competence Medical status. See Return-to-driving process; Return-to-work process Medications psychiatric care and, 157, 159f, 160–161, 162t psychotherapy techniques and, 134f, 138 Memory cognitive rehabilitation and, 56, 61–62 communication pragmatics and, 115f, 119f compensation aids, 216–218, 217t considerations for home visits and unsupervised time and, 371f overview, 91f–92f school re-entry and, 323t technology for computerized cognitive and language tasks and, 223 See also Cognition and cognitive challenges; Memory compensation Memory compensation cognitive rehabilitation and, 54, 85, 89, 96–97, 98f–99f compensation aids, 216–223, 217t, 221f, 222f family groups, 15f See also Compensations; Memory; Technology in neurorehabilitation Memory compensation group, 85, 89, 91f–96f, 96–97 Mental health challenges case example, 112–113 post-acute neurorehabilitation and, 113–114 psychotherapy techniques and, 134f See also Emotional challenges; Psychiatric care

Index Metacognition, 7, 55, 61–62, 63. See also Awareness Mic Note app, 219. See also Memory compensation; Note-taking Microaggressions, 18 Microinsults, 18 Microinvalidations, 18 Milieu. See Center for Transitional Neuro-Rehabilitation (CTN); Holistic milieu environment Milieu lunchtime group. See Lunchtime milieu group Milieu sessions, 15f, 42, 295–299, 297f–298f, 300f, 335–336 Mindfulness therapy, 15f, 135f. See also Adaptive yoga Minimization, 56, 258 Modifications to tasks or environments. See Compensations; Environmental contexts; Task modifications Mood, 119f. See also Emotional challenges Mood disorders medications and, 162t psychiatric care during postacute neurorehabilitation and, 156–161, 158f–159f, 162t See also Depression Motivation, 21, 131–132 Motivational interviewing, 131–132 Motor functioning, 15f, 364f Movies group psychotherapy and, 152, 153f–155f, 168–169 incorporating into treatment, 16 Multidisciplinary approach, 11, 22, 27, 31, 33, 40, 48, 156–157, 163, 261, 278, 302. See also Interdisciplinary approach; Transdisciplinary approach Multidisciplinary Evaluation Representative, 11, 12f, 29, 327t Multimodal treatment approach, 21, 30–31, 48, 397. See also Constructing neurorehabilitation programs; Holistic milieu environment Multitasking, 325t, 363. See also Executive functions Narcissistic injury, 6, 9, 16 Naturalistic, 13, 114, 121, 186, 301, 305, 316. See also Real world Needs analysis, 35, 36f Negative bias, 18 Neural plasticity, 31 Neuroanatomy, 64, 69, 72, 76–81, 77f–80f, 81f–84f, 105 Neurocognitive disorders, 160. See also Psychiatric disorders Neuroimaging, 55, 79f

New learning. See Learning new information Newsletter group, 15f, 180, 184–185, 185f, 197 Non-profit models, 38–39. See also Financial factors Nonverbal communication, 115f, 118f–120f, 127. See also Communication pragmatics Notability, 217, 219. See also Memory compensation; Note-taking Notes app, 219. See also Memory compensation; Note-taking Note-taking current events group and, 316 group psychotherapy and, 150 groups for cognitive rehabilitation and, 63 memory compensation group and, 85, 89, 92f, 95f, 96–97 note-taking formats, 217t, 219 overview, 11, 217t, 222–223 psychotherapy techniques and, 136f return-to-work process, 261–262 when to initiate systems for, 220 See also Datebook use Nutrition caregiver education for the home environment and, 368, 370f cognitive rehabilitation and, 86f–87f cooking skills and, 177–178 psychiatric care and, 161 See also Healthy living Occupational therapy, 10, 206, 362–363 OneNote, 217, 219. See also Memory compensation; Note-taking Organic unawareness, 56, 72f, 74f, 134, 266 Organization caregiver education for the home environment and, 363 current events group and, 316 memory compensation group and, 96f school re-entry and, 324t See also Executive functions Otter app, 217, 219, 326, 329. See also Memory compensation; Notetaking Outings, community. See Community outings Outpatient programs assessment and treatment planning and, 262 bridge between holistic milieu environment and, 35 family psychotherapy, 391 overview, 30, 31, 48, 62

post-acute neurorehabilitation and, 33–34, 38–39, 156 technology in, 204 “Own best expert,” 72f Paranoia, 21, 162t Parent participation, 120f. See also Caregiver education for the home environment; Support networks Parental participation. See Caregiver participation Parenting skills overview, 244–259, 248t, 249f, 250f, 251t, 252f–254f, 256t, 257f, 277–278 parenting checklists, 251, 253f–254f, 255 Patient Competency Rating Scale (PCRS), 7 Patient experiential model of recovery (PEM) case example, 360 cognitive rehabilitation and, 64, 70f–72f, 73f–74f communication pragmatics and, 137–138, 137f family groups, 392 family psychotherapy, 380, 389 overview, 4 PEM glossary, 72f psychoeducation group and cognitive rehabilitation and, 66–69, 67f–68f working alliance construct and, 22, 23 Patient factors, 36f, 42, 134f–136f Peer support constructing neurorehabilitation programs and, 33 family groups and, 392 groups for cognitive rehabilitation and, 63 overview, 170 working alliance construct and, 21 See also Support networks Period of disintegration, 71f, 74f, 383f Personal assistants, 373, 376–378, 377f, 412 Personal growth, 19, 142, 144f, 163 Person-centered orientation, 18, 44–45 Perspective taking assessment and treatment planning and, 116f–118f, 129 family groups, 391 group psychotherapy and, 143, 150 hang-out group and, 306 overview, 15f, 294 parenting skills and, 258 socialization group and, 301 working alliance and, 20

Index 445 Physical challenges caregiver education for the home environment and, 364f parenting skills, 248t recreational therapy and, 311t return-to-driving process, 238t school re-entry and, 325t, 327t See also Strengths and challenges Physical therapy, 10, 11, 33, 172, 206, 212 Planning caregiver education for the home environment and, 363 current events group and, 316 memory compensation group and, 96f See also Executive functions Positive psychology, 16, 131, 136f, 389 Post-acute neurorehabilitation, 19–24, 23f Posttraumatic stress disorder (PTSD) spectrum, 162t Prioritization, 324t, 327t, 363. See also Executive functions Probation, 24, 25f Problem solving caregiver education for the home environment and, 363 constructing neurorehabilitation programs and, 33 groups for cognitive rehabilitation and, 63 overview, 11 school re-entry and, 325t socialization groups and, 308f–309f See also Executive functions Procedural checklists, 92f, 262, 264f Procedural learning, 362–363 Procedural memory, 56, 92f. See also Memory Process education, 54, 60 Processing speed communication pragmatics and, 115f medications and, 162t school re-entry and, 323t, 326t Productivity assessment and treatment planning and, 114 cognitive rehabilitation and, 54 constructing neurorehabilitation programs and, 31 functional skills and, 197 overview, 5, 10, 335, 398 post-acute neurorehabilitation and, 39 psychotherapy and, 132–133, 134f psychotherapy techniques and, 141 return-to-work process, 259, 261–262 Prospective memory, 92f, 323t, 326t. See also Memory

Prospective reinvention and reinvigoration, 113, 133, 135f, 138–139, 163 Psychiatric care, 156–161, 158f–159f, 162t, 163 Psychiatric disorders, 156–161, 158f–159f, 162t, 163. See also Anxiety and anxiety disorders; Depression; Emotional challenges; Mental health challenges; Psychiatric care Psychoeducation aftercare groups, 395 caregiver education for the home environment and, 361–378, 364f–366f, 369f, 370f, 371f–372f, 373f, 374f–375f, 377f cognitive rehabilitation and, 54, 55, 64–85, 65f, 67f–68f, 70f–72f, 73f–76f, 77f–80f, 81f–84f, 97 for employers regarding the returnto-work process, 274, 275f–276f family groups, 391–392 family psychotherapy, 387, 389 memory compensation group and, 85, 89, 91f–96f overview, 11, 15f, 21, 42 parenting skills and, 258–259 psychotherapy techniques and, 134f, 136f school re-entry and, 331 working alliance construct and, 20, 21 See also Psychoeducation group Psychoeducation group, 15f, 16, 42, 54, 64–85, 65f, 67f–68f, 70f–72f, 73f–76f, 77f–80f, 81f–84f, 97, 178, 269. See also Psychoeducation Psychological factors, 119f, 360–361 Psychosocial functioning, 33, 132 Psychotherapy family psychotherapy, 378–389, 380f, 381f, 382f–383f, 385f–387f, 388t–389t overview, 163 parenting skills and, 257–259 return-to-work process, 266, 269 support network and, 360–361 working definition of, 5–6 See also Group psychotherapy; Individual psychotherapy Psychotropic medication. See Medications Quality of life aftercare groups, 395 cognitive rehabilitation and, 54 communication pragmatics and, 121 community outings and, 187 constructing neurorehabilitation programs and, 33

446 Quality of life (cont.) family psychotherapy, 378, 380 functional skills and, 197 holistic milieu environment and, 293–294, 295, 299 overview, 5, 8–9, 28, 213, 335 parenting skills, 247 psychiatric care and, 156 psychotherapy techniques and, 132, 136f, 139 recreational therapy, 310 return-to-work process, 259 technology and, 228 See also Post-acute neurorehabilitation; Return-towork process; School re-entry Racial microaggressions, 18 Rapport, 18, 23, 62–63 Real world cognitive rehabilitation and, 61f, 62, 64, 67f, 69, 70f, 80–81, 223 communication pragmatics and, 120f, 121 community outings and, 186 family groups, 13 group psychotherapy and, 145f holistic milieu environment and, 295, 299 overview, 6, 28, 272 parenting skills, 255 psychotherapy and, 382f psychotherapy techniques and, 136f staff meetings and, 26 technologies for physical impairments and, 212 transfer of skills and, 170 See also Compensations; Independence; Living alone; Return-to-driving process; Return-to-work process; School re-entry Realism assessment and treatment planning and, 10–16, 12f, 14f–15f cognitive rehabilitation and, 55, 58, 73f, 74f communication pragmatics and, 144f–149f groups for cognitive rehabilitation and, 64 overview, 8–9, 28 PEM glossary, 72f psychotherapy techniques and, 134f, 139 return-to-work process, 266, 269 working definition of, 5–6 Receptive language skills, 119f. See also Language Reconstruction of sense of self. See Sense of self

Index Recreational therapy overview, 309–314, 311t, 312f, 313f, 315f return-to-work process, 261 See also Community outings; Socialization group Red zone, 69, 72f, 74 Refresher Program, 44. See also Return-to-work process Rehearsal, 61, 73f, 120f Relaxation adaptive tai chi and balance groups and, 173–175, 175t adaptive yoga and, 175–177, 176t Residential settings, 30, 31 Resistance, 11, 21, 23–24, 25f, 137 Retrospective memory, 92f. See also Memory Retrospective stuckage, 133, 134f–135f, 163 Return-to-driving process, 236–244, 238t, 240t–241t, 243f, 277 Return-to-work process overview, 259–277, 263f–265f, 267f–268f, 270t–271t, 273f, 275f–276f, 278 supported employment and, 31–32 See also Employment functioning; Vocational group Robotics, 204–205, 211. See also Technology in neurorehabilitation Role reversal exercises, 13 Role-play activities, 13, 301 “Rolling with resistance,” 131–132 Round-robin updates, 393 Safety, 54, 371f, 372f School re-entry, 40, 44, 314, 318, 320–332, 321f, 323t–327t, 333f, 336–337 Scripts assessment and treatment planning and, 117f, 127 communication pragmatics and, 120f group psychotherapy and, 146f lunchtime groups and, 309f milieu sessions and, 296, 297f–298f overview, 272–274 school re-entry and, 328, 329, 330 technology for computerized cognitive and language tasks and, 226f vocational groups and, 193 Self constructs. See Sense of self Self-awareness, 6–7, 28, 61–62. See also Awareness Self-Awareness of Deficits Interview (SADI), 7

Self-care aftercare groups, 396 case example, 360 cognitive rehabilitation and, 89f family groups and, 392, 393 overview, 384, 385f–387f parenting skills and, 258–259 psychotherapy techniques and, 135f Self-esteem adaptive tai chi and balance groups and, 173–174 cognitive rehabilitation and, 80 group psychotherapy and, 142 overview, 19, 28, 163, 294 parenting skills, 246 post-acute neurorehabilitation and, 131 psychotherapy techniques and, 135f, 139 realism and, 8 return-to-work process, 261 Self-introspection, 20 Self-regulation caregiver education for the home environment and, 376 constructing neurorehabilitation programs and, 33 group psychotherapy and, 149 holistic milieu environment and, 295 overview, 294 return-to-driving process, 242 school re-entry and, 325t vocational groups and, 194 working alliance construct and, 21 Sense of self, 5–6, 9, 10–16, 12f, 14f–15f, 28 Sequencing, 178, 251, 255, 259, 363, 367. See also Executive functions Service demands, 35 Sexual orientation, 18–19, 134f Short-term memory, 92f. See also Memory Situational assessments, 262, 263f–265f, 266, 267f–268f, 285. See also Assessment Six sigma methodology, 34 Skills training cognitive rehabilitation and, 55, 97 cooking skills training and, 177 group psychotherapy and, 143 post-acute neurorehabilitation and, 131 psychotherapy techniques and, 134f–136f school re-entry and, 320 See also Communication skills Sleep, 87f, 89f, 161, 162t

Slippage, 72f, 74f SMART (specific, measurable, actionoriented, reliable, time-based) goal setting, 85. See also Goal setting Smart home technology, 219–220. See also Memory compensation Social activities. See Recreational therapy Social cognition, 119f Social history, 43t Social integration, 31, 305, 312, 341 Social life, 74, 309, 333 Social skills communication pragmatics and, 116f, 119f, 124f–125f, 144f–149f overview, 294–295, 335 parenting skills, 248t treatment planning and, 114 See also Communication pragmatics Social systems, 294–295 Socialization, 294–295, 316 Socialization group lunchtime groups, 302, 305, 306f, 307f–309f overview, 15f, 299–309, 301f, 303f, 304f, 306f, 307f–309f, 336 See also Community outings; Recreational therapy Speech therapy, 10, 127–128, 224, 225f, 226f Speech-generating device (SGD), 214, 214t. See also Augmentative and alternative communication (AAC); Technology in neurorehabilitation Staff meetings, 24–27, 26f, 28 Staffing considerations, 34–35, 38, 45–47, 46f–47f, 48, 49 Stepwise goal setting, 170. See also Functional competence; Goal setting Strengths and challenges caregiver education for the home environment and, 364f cognitive rehabilitation and, 58, 64, 72, 76, 80–81, 82f–84f considerations for home visits and unsupervised time and, 372f See also Cognition and cognitive challenges; Physical challenges Stress management, 87f–89f, 173–174 Stuckage, 133, 134f–135f, 137–139, 137f Substance abuse, 24, 41f, 42, 113, 133, 138, 156, 157, 162t, 376. See also Alcohol Substance use, 161, 162t Suicidality, 16, 21, 131, 134, 138, 157, 158, 294, 318

Index 447 Support networks aftercare groups, 393, 395–397 caregiver education for the home environment and, 361–378, 364f–366f, 369f, 370f, 371f–372f, 373f, 374f–375f, 377f case example, 359–360 family groups, 390–393, 394f family psychotherapy and, 378–389, 380f, 381f, 382f–383f, 385f–387f, 388t–389t holistic interventions for, 360–361 Home Independence Checklist (HIC), 363–367, 364f–366f overview, 397–398 working alliance construct and, 21 See also Caregiver participation; Family participation Support staff, 45–47, 46f–47f. See also Staffing considerations Supported employment, 31–32. See also Return-to-work process Tai chi, 173–175, 175t Task analysis, 11, 61 Task lists, 217t Task modifications, 55 Team-based approach case example, 40 constructing neurorehabilitation programs and, 34–35, 36f staff meetings and, 24–27, 26f staffing and, 34–35, 38 working alliance construct and, 19–24, 23f Technology in neurorehabilitation for cognition and language, 213–218, 214t, 217t, 223–228, 225f, 226f, 227t, 229f–230f, 230t–231t memory compensation aids and, 218–219 overview, 204, 207t–209t, 228 for physical impairments, 204–206, 210–213 See also Augmentative and alternative communication (AAC); Memory compensation Termination, 139–141, 140f–141f, 144f–149f. See also Cake day; Discharge from the program; Graduation Theory of mind, 119f Therapeutic alliance, 33. See also Working alliance Therapeutic balance group, 15f, 173–175, 175t Therapeutic reading group (book club), 15f Therapist experiential model of treatment (TEMT), 21, 138

Therapist qualities group facilitators, 62, 64 overview, 18 psychotherapy techniques and, 134f, 135f, 138 working alliance construct and, 20 Time management, 324t, 327t Timers, 219–220. See also Alarms; Memory compensation Top-down compensatory/substitutive approach, 54, 97. See also Compensation training Transdisciplinary approach community outings and, 186 constructing neurorehabilitation programs and, 33 functional skills and, 197 group therapies and, 62–63 overview, 10, 40, 47, 48–49 return-to-work process, 261, 278 treatment planning and, 27 working alliance construct and, 22 See also Interdisciplinary approach Transfer of skills case example, 235–236 driving, 236–244, 238t, 240t–241t, 243f generalization, 54, 61–62, 170 parenting skills, 244–259, 248t, 249f, 250f, 251t, 252f–254f, 256t, 257f See also Generalization Transference, 24, 135f Transformational leadership style, 24–25, 38, 48 Transgender and gendernonconforming (TGNC) people, 18–19, 134f Transitional program, 44 Traumatic brain injury (TBI), 79f. See also Acquired brain injuries (ABIs) Treatment planning, 10–16, 12f, 14f–15f Turn taking, 115f, 117f, 307f–308f. See also Communication pragmatics Unstick stuckage, 133, 134f–135f Unsupervised time, overview, 371f–372f, 373, 373f, 374f–375f, 376, 397–398. See also Independence Upper extremity group, 15f Value-based models, 34 Value-driven life, 136f, 146f, 333f, 381 Verbal functioning, 13, 119f. See also Language Vestibular skills, 371f Vicarious functioning. See Functional competence

448 Video games, 204–205, 210, 223. See also Technology in neurorehabilitation Videotaping, 13, 120f Virtual reality, 204–205, 210, 212–213. See also Technology in neurorehabilitation Visual/visuoperceptual components caregiver education for the home environment and, 364f considerations for home visits and unsupervised time and, 371f parenting skills, 248t return-to-driving process, 238t school re-entry and, 325t

Index Vocational group, 15f, 189, 191–197, 195f. See also Employment functioning; Return-to-work process Word retrieval, 119f. See also Language Work, 15f, 91f. See also Return-towork process Work re-entry, 40, 44, 191–197, 195f, 316. See also Employment functioning; Return-to-work process; Vocational group Working alliance application of in post-acute neurorehabilitation, 19–24, 23f

overview, 10, 16–19, 28 staff meetings and, 24–27, 26f Working memory, 92f, 119f. See also Cognition and cognitive challenges; Memory Work/School Re-Entry Program. See School re-entry; Work re-entry Writing formulation technologies, 214t, 215. See also Augmentative and alternative communication (AAC); Technology in neurorehabilitation “Yeah, buts,” 72f, 74f Yoga. See Adaptive yoga

SU PPLEM ENTA L CH AP TER

10 Holistic Neurorehabilitation Efficacy and Outcomes Research with Kavitha Perumparaichallai, Rivian Lewin, Susan Rumble, and Edward Koberstein

The aim of this chapter is to provide a summary of holistic neurorehabilitation efficacy

and outcomes research. We will begin by providing a broad review of post-acute studies. Literature will cover short- and long-term outcome investigations related to functionality, such as regaining independence, emotional, cognitive, and psychosocial functioning, and productivity. We will then shift to research conducted at the Center for Transitional NeuroRehabilitation (CTN), first providing an historical overview, followed by recent studies that assessed (1) a subset of data from a 30-year prospective outcome study comparing the outcomes of acquired brain injuries (ABIs) as a result of different etiologies, namely, traumatic brain injury (TBI), cerebrovascular accidents (CVA), anoxia, brain tumors, epilepsy, and neuro-infections; (2) the relationship between certain process variables (therapeutic alliance, utilization of compensations, and family involvement) and community reintegration; and (3) caregiver experiences of grief. Finally, we will provide suggestions for future directions in holistic post-acute neurorehabilitation outcome research. A comprehensive review of neurorehabilitation outcome literature is beyond the scope of this chapter. Hence, the current literature review includes the citations that met the following criteria: 1. Studies reporting post-acute outpatient holistic neurorehabilitation outcomes including productivity, driving, quality of life, caregiver grief, and psychosocial aftereffects, as well as treatment process variables such as the working relationship between patients and therapists 2. Participants who were adult survivors of ABI 3. Studies published from 2010 to 2023

This is a supplementary resource to Holistic Rehabilitation by Pamela S. Klonoff. Copyright © 2024 The Guilford Press.

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As can be seen in Table 10.1, outcome research evaluated several variables, such as employment, psychosocial functioning, cognition, and motor skills. Findings over the last 13 years revealed the following: (1) Comprehensive neurorehabilitation programs yield the greatest improvements and are the standard recommendation after ABI; (2) the shorter the duration between injury and treatment initiation, the better the outcomes at discharge and maintenance of gains at later follow-up; and (3) clinical and demographic variables (e.g., age, initial GCS score) often impact results. Taken together, the research demonstrates the benefits of comprehensive holistic neurorehabilitation in addition to other cognitive therapies after ABI. Table 10.2 summarizes short- and long-term post-acute neurorehabilitation outcome studies conducted at CTN that assessed the rates of return to work and driving, as well as progress in attaining independence and psychosocial adaptation of program patients at discharge and several years later. Data were also included from investigations of the clinical, demographic, intervention, and neuropsychological factors predicting driving and productivity in survivors at discharge and various follow-up periods. Table 10.3 encapsulates CTN research that explored the relationship between the productivity and driving statuses and selected process variables, including working alliance (WA), work eagerness, and the behavioral approach to tasks, for example, compensation use. As can be seen in Table 10.4, based on CTN research, caregivers of loved ones with an ABI experience various forms of grief, burden, and longing for preinjury circumstances. Furthermore, variables such as the relationship between caregivers and survivors as well as the survivors’ self-awareness influence levels of caregiver burden.

Overview of CTN Studies: Long-Term Outcome Study, Process Variables Study, and Caregiver Grief Study Setting The CTN is a holistic, milieu-oriented outpatient neurorehabilitation center that has been in operation since 1986. Prior to 1993, it was called the Adult Day Hospital for Neurorehabilitation (ADHNR).

Intervention Other chapters summarize the CTN programs and approaches that are translatable to our efficacy and outcomes research. However, in short, the CTN encompasses a Home Independence Program to enhance the participants’ capacity to manage basic self-care and activities of daily living, increase unsupervised time at home and in the community, establish independent transportation, and explore resources to engage in leisure and meaningful pastimes. The goals of the Work and School Re-Entry Programs are to help patients return to structured volunteer work, competitive employment, and/or school. The Transitional Program is for those who have accomplished elements of home independence but require additional interventions before transferring to the Work and/or School Re-Entry Programs. The Refresher Program aims to update, review, and strengthen the compensatory strategies

Holistic Neurorehabilitation Efficacy and Outcomes Research

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TABLE 10.1. Literature Review of Non-CTN Post-Acute Comprehensive Neurorehabilitation Outcome Studies from 2010 to 2023 Authors

Participants

Variables

Results and conclusions

Cattelani, Zettin, & Zoccolotti (2010)

Adults with acquired brain injuries (ABIs) (review)

Reviewed the treatment efficacy and clinical effectiveness of neurobehavioral rehabilitation programs

Comprehensive holistic neurorehabilitation programs (CHRP) resulted in overall improvement in psychosocial functioning. Consequently, CHRP can be recommended as a treatment standard for individuals with psychosocial and behavioral issues after ABI.

Micklewright, Yutsis, Smigielski, Brown, & Bergquist (2011)

Adults with ABIs

Explored the relationship between point of entry into a comprehensive day treatment program and outcomes

78% of patients starting the neurorehabilitation program early (0–6 months postinjury) lived and worked independently at the time of discharge and sustained their gains at 1-year follow-up. However, 25–45% of patients who started later than 6 months postinjury lived and worked independently at the time of discharge and at 1-year follow-up. Overall, patients who began neurorehabilitation within the first 6 months postinjury showed greater improvement in their neurobehavioral problems as well as residential and vocational independence; whereas patients who started later than 6 months postinjury demonstrated modest treatment gains and sustained the gains.

León-Carrión, Machuca-Murga, Solís-Marcos, León-Domíngus, & DomínguezMorales (2013)

Patients with severe traumatic brain injuries (TBIs)

Retrospectively examined outcomes for survivors of severe TBI who completed at least 4 months of integral and multidisciplinary neurorehabilitation using the Functional Independence Measure (FIM) and Functional Assessment Measure (FAM)

Significant improvements were noted in the domains of cognition, motor, communication, and psychosocial functioning.

Ford et al. (2016)

Adults with ABI

MPAI-4 scores following 18 weeks of treatment

Participants demonstrated significant improvements on functional outcome measures of the MPAI-4 (Ability, Adjustment, and Total Scores) at the end of the 18-week treatment period.

Malec & Kean (2016)

Data on adults with ABIs from the National Institutes of Health Outcome National Database

Compared outcomes from intensive residential, community-based outpatient, and supported living programs using MPAI-4 measures

Participants in both the intensive residential and community-based outpatient groups showed functional improvements that were significantly greater than the supported living group after controlling for clinical variables such as age, treatment duration, and time since injury.

Adults with ABIs

Symptom Checklist–90, Beck Depression Inventory–II, Hospital Anxiety and Depression Scale, and Quality of Life in Brain Injury

Holleman, Vink, Nijland, & Schmand (2018)

The best predictors for functional neurorehabilitation outcome are duration between injury and treatment, age of the patient, Glasgow Coma Scale (GCS) scores, and duration of treatment.

Time since injury had a significant impact on the positive functional outcome of both the intensive residential and community-based outpatient programs. Participants demonstrated significant progress in the domains of general psychological well-being, depressive symptoms, anxiety, and quality of life following a comprehensive neurorehabilitation program. (continued)

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TABLE 10.1. (continued) Authors

Participants

Variables

Results and conclusions

Sarajuuri, Vink, & Tokola (2018)

Adults with moderate to severe TBIs

Patient productivity, association between the patients’ subjective appraisal of their outcomes with objective neurorehabilitation outcomes

Postdischarge, 67% of the patients were engaged in competitive work, 22% in subsidized work, and 11% in sheltered or volunteer work. The level of work attained was significantly related to the subjective rating of the patient’s ability to engage in intimate relationships; however, the subjective appraisal was not significantly related to the level of work they attained.

Cicerone et al. (2019)

Patients with TBIs and stroke (review)

Reviewed clinical literature and updated evidence based clinical recommendations for cognitive rehabilitation of survivors of TBI or stroke

In addition to other cognitive rehabilitation treatment methods, post-acute comprehensiveholistic neuropsychological rehabilitation has been recommended as a practice standard to reduce cognitive, psychosocial, and functional deficits after traumatic and nontraumatic brain injuries.

Shany-Ur et al. (2020)

Adults with ABIs

Long-term maintenance of employment, community integration, and perceived quality of life (PQoL)

At 3-year follow-up, 61% of the participants were employed. The overall community integration score and PQoL of the participants improved significantly after treatment and at the 3-year follow-up. However, the percentage of participants who endorsed mood problems persisted throughout the study period.

Williams, Martini, Jackson, Wagland, & Turner-Stokes (2020)

Adults with ABIs

Progress made on outcome measures of MPAI-4 and the U.K. Functional Assessment Measure (U.K. FIM + FAM) and their relationship with duration between brain injury and starting staged communitybased brain injury rehabilitation (SCBIR)

All the participants demonstrated significant progress on the measures of MPAI-4 and U.K. FIM+FAM total and subscales at the time of discharge from treatment. Participants who started treatment earlier (within a year postinjury) made the greatest progress on all outcome measures. Participants who started treatment 1–2 years postinjury made significant improvements on all outcome measures except the MPAI-4 Adjustment subscale. Participants who started treatment greater than 2 years postinjury made significant progress on all U.K. FIM + FAM subscales and the MPAI-4 Participation subscale.

Villalobos, Caperos, Bilbao, López-Muñoz, & Pacios (2021)

Adults with ABIs

Impact of executive function and memory on self-awareness before and after neuropsychological rehabilitation

Verbal fluency was the best predictor of self-awareness at the time of admission to rehabilitation and discharge, whereas inhibition, cognitive flexibility, and episodic memory predicted self-awareness after rehabilitation. The authors attributed the progress in executive measures and memory to neuropsychological rehabilitation, which influenced the metacognitive capacity of survivors of ABIs.

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TABLE 10.2. Literature Review of CTN Post-Acute Neurorehabilitation Outcome Studies Authors

Participants

Variables

Results and conclusions

Short-term outcome studies Klonoff et al. (1998)

N = 64 patients with ABIs

Productivity outcome

At the time of discharge, 89.5% of the participants were productive (including volunteers); 62.5% returned to work and/or school; 15.6% returned to the same level of work and/ or school as preinjury.

Klonoff et al. (2007)

N = 101 patients with ABIs

Performance on cognitive retraining tasks and discharge productivity status

At the time of discharge, 82.2% of the participants returned to work and/or school. Better performance on cognitive retraining tasks addressing information processing speed, visual scanning, visuospatial skills, and memory was associated with a return to the same level of work/school with and without modifications.

Klonoff et al. (2010)

N = 103 patients with ABIs

Performance on cognitive retraining tasks and discharge driving status

At the time of their discharge, 50.5% of the participants were cleared to drive. Driving status was positively related to skill remediation, process variables, metacognitive skills, and positive working alliance scores with therapists.

Perumparaichallai et al. (2014)

N = 128 patients with ABIs

Neuropsychological functioning and discharge driving status

At the time of discharge, 54% of the participants returned to driving. Neuropsychological functions of attention, working memory, visual-motor coordination, motor and mental speed, and visual scanning significantly contributed to predicting driving status.

Long-term outcome studies Klonoff et al. (2001)

N = 164 patients with ABIs

Examined the rate of productivity and work/ school activities

At up to 11 years after discharge, 83.5% of the participants were productive; 67.1% were engaged in work and/or school. There was no decline in productivity over time since discharge.

Klonoff et al. (2006)

N = 93 patients with ABIs

Identified factors related to work outcome

At up to 7-year follow-up, 86% of the participants were productive; 74.3% were involved in work and/or school. Variables associated with productivity status included younger age, higher education, non-right-hemispheric injury, and a successful return to driving.

Identified factors related to driving outcome Examined the relationship between preinjury variables and postdischarge psychosocial status

Perumparaichallai et al. (2020)

N = 107 patients with ABIs

Evaluated functional independence, productivity and driving status, and psychosocial profiles

At up to 7-year follow-up, 73.1% of the participants successfully returned to driving. The variables associated with return to driving included shorter treatment length, higher education, non-right-hemispheric injury, and successful return to work. Preinjury relationship status was maintained at the time of follow-up; 81.1% of the participants maintained stability in their relationship. At up to 30-year follow-up, 89% of the participants were productive; 73% were engaged in work and/or school; 70% of the participants returned to driving. Positive findings were observed in marital status, living situation, income, and quality of social life. (continued)

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TABLE 10.2. (continued) Authors

Participants

Variables

Results and conclusions

Johnson, Klonoff, and Perumparaichallai (2022)

N = 123 with ABI

Examined the long-term outcomes of survivors with pediatric-onset versus adult-onset ABI who completed holistic milieu-oriented neurorehabilitation up to 30 years ago

Those who engaged in holistic neurorehabilitation, whether the ABI was sustained as a child or an adult, demonstrated significant and beneficial gains in their productivity, functional status, and return to driving or started to drive, even up to 30 years after discharge from CTN.

TABLE 10.3. Literature Review of CTN Process Variable Studies Authors

Participants

Variables

Results and conclusions

Klonoff et al. (1998)

N = 64 patients with ABIs

Relationship between working alliance and productivity

Stronger working alliance ratings between the therapists and patients as well as families positively related to the productivity status of patients at discharge.

The impact of seeking monetary compensation or receiving benefits on productivity Relationship between cognitive functions (i.e., speed of information processing and memory) and level of productivity

Klonoff et al. (2007)

N = 101 patients with ABIs

Relationship between working alliance, metacognition, and return to work/school status

Work eagerness/motivation was positively related to productivity status at discharge; patients seeking monetary compensation showed lower motivation than patients who did not seek compensation. Speed of processing and memory functions did not relate to level of productivity. Better work/school outcomes at discharge were related to the patients’ behavioral approach to cognitive retraining tasks (e.g., their use of compensations, organizational and abstraction skills, procedural skills, and unassisted task recall). Patients’ positive working alliance ratings related to their behavioral approach to cognitive retraining tasks.

Klonoff et al. (2010)

N = 103 patients with ABIs

Relationship between working alliance ratings between therapists and patients, metacognition, and driving status

Return to driving at discharge was positively related to positive working alliance ratings. Better working alliance ratings were related to behavioral variables, including timeliness to sessions, compensation use, better communication pragmatics, decreased distractibility, and the ability to apply the big picture benefits of cognitive retraining to the “real world.”

Holistic Neurorehabilitation Efficacy and Outcomes Research

7

based on changes in the survivor’s life situation (e.g., in employment, living setting, or medical condition) since discharge from the above-mentioned programs. Regardless of the program, patients participated in individual and group interventions that addressed physical, cognitive, language, emotional, interpersonal, and functional challenges. A multispecialty team, with physiatry oversight, utilized a combination of multidisciplinary, interdisciplinary, and transdisciplinary principles and experts from various specialties, for instance, neuropsychology, speech, occupational, physical, and recreational therapies. Attendees also received services from a psychiatrist, dietitian, and social worker, as needed. Treatment started with exclusively clinic-based therapies 3–5 days per week, 4–6 hours per day for the first 3–6 months. As patients demonstrated progress, the next phase gradually transitioned them into community settings such as home, work, and/or school. Therapists provided interventions in home, work, or school settings to facilitate job training, social skills instruction, and development and generalization of compensations, in addition to coordination between the participants and their employers/teachers for successful community reintegration. Throughout their loved ones’ program attendance, caregivers were involved in a minimum of weekly conjoint family meetings with the patient’s neuropsychologist, other team members, and the weekly family group. TABLE 10.4. Literature Review of CTN Caregiver Variable Studies Authors

Participants

Variables

Results and conclusions

Stang, Lewin, Perumparaichallai, & Klonoff (2016)

N = 40 (caregivers of patients with ABIs)

Association between caregiver to survivor relationship (e.g., parent, adult children, friend) and caregiver grief measured by the Marwit–Meuser Caregiver Grief Inventory Acquired Brain Injury Revised (MM-CGI ABI revised)

When controlling for the survivors’ age, nonparent caregivers experienced greater heartfelt sadness, longing, worry, and isolation.

Klonoff et al. (2017)

N = 41 (caregivers of patients with ABIs)

Analysis exploring grief and loss among the caregivers of patients with ABIs

Caregiver experiences are complex and variable; however, most responses indicate longing for preinjury circumstances, sadness, social isolation and loneliness, and challenges in balancing caregiving obligations and personal pursuits.

Rubin et al. (2020)

N = 57 (ABI patient– caregiver pairs)

Relationship between patient self-awareness (discrepancy between patient-reported and caregiver-reported functioning measured by the MPAI-4) and caregiver burden measured by the Zarit Burden Interview (ZBI)

At up to 28 years postdischarge, impaired self-awareness and lack of insight into functional abilities contributed to worsened caregiver burden.

8

Holistic Neurorehabilitation Efficacy and Outcomes Research

Long-Term Outcome Study Objectives The present research examined the outcome profiles (driving, productivity, functional status) of survivors of TBI, CVA, and other neurological conditions (brain tumor, anoxia, epilepsy, neuro-infections) up to 30 years after completing holistic milieu-oriented neurorehabilitation. Additionally, the study examined if there was a relationship between the outcome profiles and the diagnoses.

Null Hypothesis There are no significant differences between the outcome profiles of the survivors based on their diagnoses.

Methods Participants

Participants included 128 survivors of ABI (TBI, CVA, benign and malignant brain tumors, anoxia, epilepsy, neuro-infections) who attended CTN between 1986 and 2016. They completed one or more of the following programs: (1) Home Independence Program, (2) Work Re-Entry Program, (3) School Re-Entry Program, (4) Transitional Program, and (5) Refresher Program.

Recruitment and Data Collection The data presented are part of an ongoing neurorehabilitation outcome study. The majority were collected during the 30-year reunion event on October 21–22, 2016, to which 858 patients and caregivers who received treatment at CTN were invited. Data collection continued afterward to provide an opportunity to enroll for those who could not be reached in a timely manner for the reunion or graduated after that event. The attrition rate was comparable to an 8-year follow-up study conducted among survivors of TBI (Ruet et al., 2019). The St. Joseph’s Hospital and Medical Center Institutional Review Board approved the investigation, and informed consent was obtained. Data collection was carried out in the following ways: (1) in-person in the clinic independently or with assistance from research staff, (2) over the phone with research staff, or (3) independently at remote locations using a website link.

Outcome Measures Driving Status

Driving status was measured as a dichotomous variable defined as whether or not the patients were driving at the time of program admission, program discharge, and study enrollment.

Holistic Neurorehabilitation Efficacy and Outcomes Research

9

Productivity Status

Productivity status of the participants was examined at the time of follow-up. They were considered productive if engaged in competitive employment (part- or full-time), structured volunteer work (consistent with an employment schedule), school, or were a homemaker and/or child-care provider. Those who were unemployed were considered nonproductive. Psychosocial Outcome MAYO–PORTLAND ADAPTABILITY INVENTORY—4

The Mayo–Portland Adaptability Inventory—4 (MPAI-4) was employed to assess the outcome of the participants at follow-up. It consists of three indices: Ability (with a range of 0–47); Adjustment (range 0–46); and Participation (range 0–30). Based on participants’ total MPAI-4 score, they were categorized as having a good outcome (less than 30), or limitations that were mild (30–40), mild to moderate (41–50), moderate to severe (51–60), or severe (above 60). Higher scores indicate lower functionality (Malec, 2005). LONG-TERM OUTCOME QUESTIONNAIRE

The Long-Term Outcome Questionnaire (LOQ) was developed to explore the survivors’ level of independence in their community reintegration, particularly related to home management, financial independence, quality of social life, engagement in leisure activities, and utilization of strategies. The LOQ contains 38 items with multiple-choice, yes/no, and freeresponse formats. For the purpose of this chapter, the use of compensations was explored.

Clinical and Demographic Variables Clinical and demographic data were extracted from medical records (see Table 10.5). Of note, some data are missing from five charts. It is noteworthy that those in the other neurological conditions group received interventions significantly later in their recovery than the TBI and stroke groups. The injury-to-admission duration of the other neurological conditions group ranged between 1.3 months to 36.9 years and 12 of the 17 (71%) participants received therapies at least 1 year after their diagnoses.

Results Driving

At the time of admission, 23 (19%) of 122 patients were driving; whereas at the time of discharge, 67 (58%) of 116 patients were driving. Impressively, 89 (70%) of the total sample of 128 participants were driving at follow-up. Table 10.6 summarizes the rates of return to driving by the survivors of TBI, CVA, and other neurological/neurosurgical conditions at the time of admission, discharge, and follow-up. Findings revealed that the percentage who resumed driving increased substantially from admission to discharge. Remarkably, some in

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Holistic Neurorehabilitation Efficacy and Outcomes Research

TABLE 10.5. Clinical and Demographic Variables of the Outcome Study Participants TBI

CVA

Other

M (SD) (n = 74)

M (SD) (n = 32)

M (SD) (n = 17)

Age at admission (years)

32.51a (14.88)

42.34 a (13.76)

38.69 (13.88)

Age at time of injury (years)

30.58 a (14.59)

40.47a (15.79)

31.34 (17.71)

Age at time of study (years)

42.82 a (15.64)

51.25 a (16.03)

49.90 (13.49)

Injury to admission duration (years)

26.53 (51.68)

26.01 (58.79)

89.09 b (134.40)

Discharge to follow-up (years)

8.94 (7.83)

7.4 (6.09)

10.13 (7.61)

Treatment duration (months)

13.31 (15.28)

13.61 (7.72)

11.56 (5.61)

Education at discharge (years)

14.16 (2.08)

15.52 (2.94)

14.94 (2.30)

Variables

Handedness Right/left Gender Male/female Ethnicity White Hispanic Other

n

%

n

%

n

%

70/4

95/5

28/4

87/13

17/0

100/0

n

%

n

%

n

%

54/20

73/27

16/16

50/50

6/11

35/65

n

%

n

%

n

%

59 8 7

80 11 9

23 4 5

72 12 16

14 1 2

82 6 12

aParticipants in the TBI group were significantly younger than the participants in the CVA group in terms of age at the time of their injury (p =.009), age at the time of the study (p = .03), and age at the time of admission to the program (p = .006). bParticipants in the other diagnosis group had significantly longer duration of time between their injury and admission than the participants in the TBI (p = .004) and CVA (p = .01) groups.

TABLE 10.6. Percentage of Survivors Who Returned to Driving Successfully at the Time of Admission, Discharge, and Follow-Up Survey TBI

CVA

Other

d/n

%

d/n

%

d/n

%

At the time of admission

13/73

18

5/32

16

5/17

29

At the time of discharge

39/69

57

20/31

65

8/16

50

At the time of follow-up study

51/74

69

24/32

75

11/17

65

Driving status

Note. d = number of participants driving successfully; n = number of participants.

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Holistic Neurorehabilitation Efficacy and Outcomes Research

all three groups restarted driving even after their discharge from CTN. A chi-square test of independence showed that there was no significant association between diagnoses and return to driving at the time of the study, F2 (1, N = 123) = 0.65, p = .72. Productivity

At the time of follow-up, 98 (77%) of 128 survivors were productive: 83 (65%) were competitively employed and/or in school; 15 (12%) were homemakers, child-care providers, and/or volunteers; 12 (9%) were unemployed; and 18 (14%) were retired. After removing the 14% of retired individuals, the productivity rates revealed that 98 (89%) of the 110 participants were productive: 83 (75%) were competitively employed and/or in school; 15 (14%) were homemakers, child-care providers, and/or volunteers; and 12 (11%) were unemployed. Table 10.7 summarizes the productivity rate of the survivors based on their diagnoses. Visual inspection revealed that above 75% of survivors in all three groups were productive even up to 30 years postdischarge. A chi-square test of independence showed that there was no significant association between diagnoses and productivity status at the time of study, F2 (2, N = 123) = 3.71, p = .72. Functional Outcome

The MPAI-4 was used to measure independence. When all 128 participants were categorized based on their total score, 36 (28%) reported good abilities with no limitations; 27 (21%) endorsed mild limitations; 50 (39%) identified mild to moderate limitations; 14 (11%) indicated moderate to severe limitations; and only 1 (90%. A variety of therapists furnish memory assignments, and the percentage of completion is calculated on a weekly basis, ranging from a datebook score between 0% and 100%. For this study, the median datebook score was utilized due to the expectation of a non-normal distribution of scores. HIC Scores

The HIC is composed of daily and weekly responsibilities in the home (Klonoff, 2010). See Chapter 9 and Klonoff (2010, 2014) for more information. In general, the HIC is devised and regularly updated primarily by the occupational therapist, with input from other members of the interdisciplinary team, the survivor, and his or her caregiver. The HIC enables the patient to organize his or her day, access specific details for completing home duties, and remain focused on each chore (Klonoff et al., 2003). The HIC also allows measurement of the progression from dependency on others to unsupervised and empowered self-reliance (Klonoff, 2010). Thus, it serves as a concrete representation of his or her contribution to family life as a “team player.” CTN therapists monitor how successfully the participants master the HIC. The percentage of properly completed tasks is calculated on a weekly basis (range 0–100%) and discussed with the patient and caregivers. For purposes of this analysis, the median HIC score was considered in relation to outcome due to the expectation of a nonnormal distribution of HIC scores. Family Group Attendance

The CTN family group is a forum to provide education, emotional support, and peer mentoring to the support network while the loved one is actively participating in the CTN program (Klonoff, 2010, 2014). See Chapter 9 for more information. In short, family group is conducted weekly, facilitated by at least one clinical neuropsychologist/rehabilitation psychologist, and includes a rotating educational portion provided by all CTN disciplines (Klonoff, 2010, 2014). This variable reflects the amount of commitment that the relatives made to their loved one’s recovery and is based on the frequency of attendance at the CTN’s weekly family group. Expectation for attendance is higher when the survivor is on a full-time schedule compared to when he or she is transitioning back to work and/or school and the therapy

Holistic Neurorehabilitation Efficacy and Outcomes Research

17

schedule is reduced. Hence, for the analysis, the number of family group sessions attended was divided by the number of weeks during which the patient participated in a full-time schedule. Work and School Status

Data on patients’ work/school status at the time of program discharge were drawn from their medical charts. They were categorized into one of five work and/or school outcomes: x Competitive, same as the preinjury work and/or school roles, without modification of any job or academic responsibilities x Competitive, same as preinjury work/school roles, with modification of at least some job or academic tasks x Different and below preinjury work and/or school status x Volunteer role x Not working For purposes of the analysis, data were combined into two groups: Group 1 = return to the same level of competitive work and/or school with and without modifications or a lower level of competitive work or school; and Group 2 = volunteer work and not working. This allowed a comparison of participants who were able to resume competitive employment or productive academic status from those who could not.

Results There were no significant differences between the productive and nonproductive groups on clinical and demographic variables. Analyses show that three of the five identified process variables were significantly associated with productive outcome (Table 10.11). WA Ratings

An independent samples t-test was conducted to compare the average patient WA rating of those who returned to competitive work or productive academic status (Group 1) with those who did not (Group 2). Those in Group 1 who resumed competitive employment or a productive academic status (M = 77.86, SD = 13.84) had higher patient WA ratings than those in Group 2 who did not achieve competitive work or a productive academic status (M = 71.44, SD = 15.30): t(143) = –2.21, p = .028. An independent samples t-test was conducted to compare the average family WA rating of those who returned to competitive work or productive academic status (Group 1) with families of those who did not (Group 2). Levene’s test for equality of variances was found to be violated for the present analysis, F(8.23), p = .005. Owing to this violated assumption, a t statistic not assuming homogeneity of variance was computed. There was no significant difference between the family WA ratings for Group 1 (M = 76.91, SD = 17.00) and Group 2 (M = 68.77, SD = 36.79).

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Holistic Neurorehabilitation Efficacy and Outcomes Research

TABLE 10.11. Relationship between Process Variables and Productivity Process variables Family Group (% attendance)

Datebook scorea (median)

HIC scorea (median)

Patient working alliancea (mean)

Family working alliance (mean) ap

Outcome

Mean

SD

Nonproductive

0.35

0.27

Productive

0.31

0.26

Nonproductive

84.75

11.40

Productive

91.10

9.12

Nonproductive

92.81

7.86

Productive

95.56

6.26

Nonproductive

71.44

15.30

Productive

77.86

13.84

Nonproductive Productive

68.77 76.91

36.79 17.00

< .05.

Datebook Scores

An independent samples t-test was conducted to compare the median datebook scores of participants who returned to competitive work or productive academic status (Group 1) with the median datebook scores of those who did not (Group 2). Levene’s test for equality of variances was found to be violated for the present analysis, F(3.76), p = .054). Owing to this violated assumption, a t statistic not assuming homogeneity of variance was computed. There was a significant difference in the median datebook scores for Group 1 (M = 91.10, SD = 9.12) and Group 2 (M = 84.75, SD = 11.40): t(42.26) = –2.91, p = .006. This suggests that those who restarted competitive work or a productive academic status had higher median datebook scores while in treatment, compared with those who were nonproductive at discharge. HIC Scores

An independent samples t-test was conducted to compare the median HIC scores of survivors who returned to competitive work or productive academic status (Group 1) with the median HIC scores of those who did not (Group 2). There was a significant difference in the median HIC scores for Group 1 (M = 95.56, SD = 6.26) and Group 2 (M = 92.81, SD = 7.86): t(120) = –1.94, p = .05. This suggests that those who resumed competitive employment or a productive academic status had higher median HIC scores while in treatment, compared with those who were nonproductive at discharge. Family Group Attendance

An independent samples t-test was conducted to compare the percentage of attendance of family groups for patients who returned to competitive work or productive academic status

Holistic Neurorehabilitation Efficacy and Outcomes Research

19

(Group 1) with families of those patients who did not (Group 2). There was no significant difference in the percent of family groups attended while the patient was on a full-time schedule between Group 1 (M = .31, SD = .26) and Group 2 (M = .35, SD = .27).

Discussion Findings demonstrate that patients who had resumed work or school at discharge have higher scores on measures of process variables during their comprehensive neurorehabilitation. Family-related process variables, as measured in this study, were not found to be significantly different between the productive and nonproductive groups. The datebook, HIC, and therapists’ rating of the WA with the patient all involve his or her use of compensations, which fosters work success. For example, effective grasp of a datebook enables the patient to return calls, show up on time for interviews, and plan for consistent timely attendance at work. A HIC helps with responsibilities at home and accomplishing routine tasks relevant to work, for example, making sure their laundry is done regularly with clean clothes for the next workday, bills are paid, and items are organized in the home. Also, the ability to consistently follow a checklist for simple routine activities carries over to good performance of work duties. Therapists’ WA ratings with the patient are based partly on follow-through with assignments and recommended compensations, which also encompasses the datebook and HIC. Thus, it could be that the association of the WA with a productive outcome is reliant on usage of tools. Conversely, openness to and follow-through with suggestions may represent the survivor’s buy-in and is a separate factor that results in a higher rating of the WA, better strategy utilization, and getting and keeping a job. This can be conceptualized as general compliance, which is a WA variable that has been found to be related to objective and subjective measures of outcome after holistically oriented rehabilitation in previous investigations (Schöenberger, Humle, & Teasdale, 2006a, 2006b). Future research should further explore the nature of the factors that underlie the WA variable and its relationship to productivity. The importance of the relationship between these process variables and a productive outcome is magnified by the lack of significant differences within the current study’s participants on the clinical and demographic variables. This is in contrast to some other research on patients’ outcome after multidisciplinary neurorehabilitation, in which clinical and demographic variables were found to be associated with or predicted outcome (LeónCarrión, Machuca-Murga, Solís-Marcos, León-Domíngus, & Domínguez-Morales, 2013; Micklewright, Yutsis, Smigielski, & Brown, 2011). This suggests that these process variables, within the context of our holistic program, transcend the influence of clinical and demographic variables on outcome. In this sample, there was no significant relationship between the two variables involving relatives and the participants’ level of productivity upon completion of the holistic milieu program. This is an interesting finding, given that previous studies have found a positive relationship between therapists’ WA ratings with family and patients’ productivity status at discharge (Klonoff et al., 1998, 2001). A possible explanation for a different finding currently is slight variations in the criteria that defined productivity, as volunteer work was not

20

Holistic Neurorehabilitation Efficacy and Outcomes Research

included in the productive group, compared to previous investigations. In addition, there was a large variability in the family WA ratings in the nonproductive group, relative to the productive group, the reasons for which are unclear. When looking at the percent of family groups attended, the data may not have adequately captured the main quantifiable aspect of relatives’ participation associated with outcome. Possible future directions could include: a more sophisticated measure of family functioning; postratings or tests of knowledge gained from family group attendance; a measure to capture group dynamics within the family group; or accounting for the amount of time spent by the support network in all program sessions, groups, and training with the team. These considerations may account for some family members who go to great lengths to engage with their loved one in the neurorehabilitation but may have work or other duties that precluded the ideal amount of attendance at the weekly scheduled family group. It may also be possible that attendance at this group is related to other positive outcomes of neurorehabilitation, for instance, reduced caregiver burden, and less so with patient productivity. Future investigations can elucidate these factors.

Caregiver Grief Study Objectives The current research evaluated the grieving patterns of caregivers of survivors of ABI and their association with (1) caregiver variables related to the nature of their relationship with the loved one and (2) clinical and demographic variables of the patients (e.g., type of injury, age at time of injury).

Null Hypotheses 1. There are no significant differences in caregiver grief based on caregiver variables (parents vs. non-parents). 2. There are no significant differences in caregiver grief based on survivor variables (age at time of injury [below age 18 vs. age 18 and above] and chronicity [less than 1 year vs. 1 year or greater]).

Methods Participants

Participants included 61 (46 females, 15 males) parents, spouses, children, or close friends who were caregivers for a loved one with an ABI (TBI, CVA, brain tumor, anoxic brain injury, epilepsy, neuro-infections) while the patient was enrolled in the CTN holistic, milieu-oriented, outpatient program between the period of 2006 and 2019.

Holistic Neurorehabilitation Efficacy and Outcomes Research

21

Recruitment and Data Collection

Caregivers of survivors were recruited to participate in this study on a voluntary basis. There was open enrollment and therefore they could decide at any point during the patients’ treatment if they wanted to complete the questionnaire. Participation involved completing the paper questionnaire either in the clinic or at home. Outcome Measure

Grief was measured using the Marwit–Meuser Caregiver Grief Inventory—Acquired Brain Injury Revised (MM-CGI-AR: Marwit & Kaye, 2006), which is a 50-item self-report instrument that incorporates a five-point scale with endpoint labels ranging from strongly disagree (1) to strongly agree (5). The measure includes three factors: personal sacrifice burden (18 items; Factor A); heartfelt sadness and longing (15 items; Factor B); and worry and felt isolation (17 items; Factor C). Based on prior research (Marwit & Meuser, 2002), for the purposes of this study, caregivers with total scores above 175 are considered to experience high levels of grief; scores between 112 and 175 are considered average levels of grief; and scores below 112 are considered low levels of grief. Clinical and Demographic Variables

Patients’ demographic and clinical data were extracted from their medical records. Caregivers’ demographic data were collected; most were parents, female, and White (see Table 10.12). Statistical Analysis

Percentage analyses were carried out to assess the grief levels of the caregivers based on their total score on the MM-CGI-AR measure. Additionally, a series of 2 u 2 chi-square tests of independence were performed to examine the relationship between each of the variables (the nature of the relationship between the caregiver and loved one, age of the survivor at the time of injury, and chronicity) and the level of grief endorsed by the caregivers on each of the three grief factors as well as the total score.

Results As can be seen in Table 10.13, the vast majority of caregivers reported low to average levels of grief (91.8%). Interestingly, on the factor of worry and felt isolation, slightly over onequarter of the caregivers fell in the high category, whereas on the factors of personal sacrifice burden and heartfelt sadness and longing, only 16% and 5%, respectively, fell in the high category.

22

Holistic Neurorehabilitation Efficacy and Outcomes Research TABLE 10.12. Clinical and Demographic Variables of the Caregiver Participants and ABI Survivors in the Caregiver Grief Study N (%)

Variables Caregivers (N = 61) Relationship Parent Non-parent

41 (67.2) 20 (32.8)

Gender Female Male

46 (75.4) 15 (24.6)

Ethnicity White Hispanic Other

57 (93.4) 2 (3.3) 2 (3.3) Survivors (N = 61)

Gender Female Male

38 (62.3) 23 (37.7)

Injury etiology TBI CVA Other (anoxia, tumor, neuro-infection, epilepsy)

28 (45.9) 21 (34.4) 12 (19.7) Mean (SD)

Range

Age at time of study (years)

35.48 (15.3)

17–69

Age at time of injury (years)

31.8 (15.4)

0–68

Education (years)

14.2 (2.7)

9–20

A series of chi-square tests of independence assessed the relationship between the caregiver role (parent vs. non-parents), age of the patient at time of injury (below age 18 vs. age 18 and above), chronicity (less than 1 year vs. 1 year or greater), and each of the MM-CGIAR factors in addition to the total score. Of note, injury type was not evaluated because there were not an adequate number of cases in each cell. As depicted in Table 10.14, the relationship between age at time of injury was significantly related to the worry and felt isolation subscale as well as the total MM-CGI-AR score, with greater levels of isolation and overall caregiver burden when the brain injuries occurred before age 18. Analyses examining the caregiver–survivor relationship as well as chronicity failed to reveal significant associations with caregiver burden.

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Holistic Neurorehabilitation Efficacy and Outcomes Research TABLE 10.13. Percentage of Caregivers at Each Level of Grief Based on MM-CGI-AR Scores Grief scale

N (%)

Personal sacrifice burden Low Average High

15 (24.6) 36 (59.0) 10 (16.4)

Heartfelt sadness and longing Low Average High

27 (44.3) 31 (50.8) 3 (4.9)

Worry and felt isolation Low Average High

6 (9.8) 39 (63.9) 16 (26.3)

Total Low Average High

18 (29.5) 38 (62.3) 5 (8.2)

TABLE 10.14. Relationship between Survivor and Caregiver Variables and Level of Grief Factor A

Factor B

Factor C

Total

Variable

F2

p

F2

p

F2

p

F2

p

Caregiver relationship to survivor

.89

.35

.00

.98

.02

.88

.40

.52

Age of survivor at injury

3.13

.08

.37

.54

4.36

.04 a

5.61

.02 a

Chronicity

.96

.33

.20

.65

.04

.84

.44

.51

Note. N = 61, df = 1. Factor A = Personal sacrifice burden; Factor B = Heartfelt sadness and longing; Factor C = Worry and felt isolation; caregiver relationship to survivor = parent versus non-parent; age of survivor at injury = below age 18 versus age 18 and above; Chronicity = less than 1 year since injury versus 1 year or greater since injury. a p < .05.

Discussion The aim of the research was to explore levels of caregiver grief as well as concomitant clinical and caregiver variables in a sample where loved ones with ABIs participated in holistic milieu treatment at CTN. Our findings suggest that caregivers generally experienced low to average levels of grief. Across the three subscales, the greatest proportion endorsed feeling a loss of connections and support from others (the worry and felt isolation factor). Furthermore, those with loved ones younger than age 18 at the time of injury reported experiencing higher levels of worry, isolation, and overall grief. Results demonstrate that the caregivers of participants who sustained brain injuries in early childhood or adolescence are more vulnerable to losing connections and support from others. Based on the analysis assessing chronicity, this is not due to the duration of

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Holistic Neurorehabilitation Efficacy and Outcomes Research

caregiving for the patient. Previous research has shown that the burden on caregivers of children with TBI is high (Tramonti et al., 2015; Wade et al., 2006) and more related to survivors’ psychosocial rather than physical difficulties (Aitken et al., 2009). Furthermore, the impact of ABI on the ongoing development and adjustment of a family can be large, as balancing the demands required for caregiving can influence the dynamics and growth as families transition through life phases (McDaniel & Pisani, 2012). Given these findings, it may be that the caregivers in the current investigation showed greater worry and isolation because of the ways in which the brain injury has influenced the loved one’s social life and sense of belonging over the course of their development. Additionally, these caregivers may experience substantial worry about how the loved one will be cared for once they are no longer able to provide this themselves. Taken together, the results suggest that the involvement of caregivers in holistic milieu programs that address a multiplicity of needs after ABI, as early as possible postinjury, may serve to lower their risk of grief reactions in the support network. Despite the rather low levels of grief seen in this study, other research shows that, following the brain injury of a loved one, emotional distress and high burden on caregivers are common occurrences (Aitken et al., 2009; Baker, Barker, Sampson, & Martin, 2017; Bayen et al., 2013; Kreutzer et al., 2009; Qadeer et al., 2017). The emphasis on the support network’s involvement embedded in holistic neurorehabilitation at CTN may contribute to the low levels that emerged in this investigation. For example, caregivers received psychoeducation about brain injury and compensations, joined home visits, attended a weekly family group with others in the same predicament, and were involved in weekly meetings with the survivor and their psychotherapist (Klonoff, 2014). Some of the caregivers reported engaging in social and respite activities, which likely enhances coping skills. It is likely that these treatment components embedded in a fostered community within our center served as protective factors against caregiver grief. Future research should delineate contributors to better versus worse caregiver adjustment.

Future Directions Given that holistic milieu approaches lead to very promising and enduring outcomes, it will be beneficial to conduct the following: randomized controlled research to best substantiate the efficacy of holistic neurorehabilitation and its long-term outcome; exploratory investigations to further delineate the factors influencing outcome, such as clinical, demographic and aspects of holistic milieu treatment (e.g., psychotherapy techniques addressing metacognition in patients, strategy use, family involvement, cognitive therapies); and structural and functional neuroimaging studies to explore changes in the brain regions and networks in relation to outcomes. See Wagner (2022) for a more in-depth discussion of contemporary research considerations in survivors of acquired brain injury, including rehabilitation interventions.

Holistic Neurorehabilitation Efficacy and Outcomes Research

L E S SO N S L E A R N E D 1. CTN outcome research reveals that survivors of ABI with heterogeneous neurological conditions and different phases of recovery (both acute and chronic) equally benefited from holistic neurorehabilitation that enhanced their productivity, driving capability, psychosocial adaptation, and overall functionality. Furthermore, the gains are enduring up to 30 years postdischarge. 2. Higher scores for utilization of compensation systems and therapists’ rating of the WA with patients are important variables that are positively associated with resuming work and/or school upon discharge from comprehensive holistic neurorehabilitation. Therapists’ rating of the WA with families and the families’ percent of attendance at the weekly family group were not found to be associated with the participants’ return to productivity upon discharge. Further exploration is recommended to delineate the key, measurable family factors in the treatment process that contribute to their loved ones’ return to productive lives. 3. Caregivers of loved ones with an ABI can experience a range of emotional and social challenges, including isolation, worry, and longing for preinjury circumstances. Our investigation underscores the value of involving the support network in holistic, milieu-oriented neurorehabilitation, especially ways to alleviate their grief. Future research should continue to study the efficaciousness of holistic milieu interventions.

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