Children with Special Needs: An Overview of Knowledge on Disability 3031285123, 9783031285127

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SpringerBriefs in Social Work Ulrika Hallberg · Gunilla Klingberg

Children with Special Needs An Overview of Knowledge on Disability

SpringerBriefs in Social Work

SpringerBriefs present concise summaries of cutting-edge research and practical applications. Featuring compact volumes of 50 to 125 pages, the series covers a range of content from professional to academic. Typical topics might include: –– A timely report of state-of-the art analytical techniques –– A bridge between new research results, as published in journal articles, and a contextual literature review –– A snapshot of a hot or emerging topic –– An in-depth case study or clinical example –– A presentation of core concepts that students must understand in order to make independent contributions SpringerBriefs in Social Work showcases emerging theory, empirical research, and practical applications in a wide variety of topics in social work and related areas. Briefs are characterized by fast, global electronic dissemination and expedited production schedules.

Ulrika Hallberg • Gunilla Klingberg

Children with Special Needs An Overview of Knowledge on Disability

Ulrika Hallberg Department of Pediatric Dentistry, Faculty of Odontology Malmö University Malmö, Sweden

Gunilla Klingberg Department of Pediatric Dentistry, Faculty of Odontology Malmö University Malmö, Sweden

ISSN 2195-3104     ISSN 2195-3112 (electronic) SpringerBriefs in Social Work ISBN 978-3-031-28512-7    ISBN 978-3-031-28513-4 (eBook) https://doi.org/10.1007/978-3-031-28513-4 © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 This work is subject to copyright. All rights are solely and exclusively licensed by the Publisher, whether the whole or part of the material is concerned, specifically the rights of reprinting, reuse of illustrations, recitation, broadcasting, reproduction on microfilms or in any other physical way, and transmission or information storage and retrieval, electronic adaptation, computer software, or by similar or dissimilar methodology now known or hereafter developed. The use of general descriptive names, registered names, trademarks, service marks, etc. in this publication does not imply, even in the absence of a specific statement, that such names are exempt from the relevant protective laws and regulations and therefore free for general use. The publisher, the authors, and the editors are safe to assume that the advice and information in this book are believed to be true and accurate at the date of publication. Neither the publisher nor the authors or the editors give a warranty, expressed or implied, with respect to the material contained herein or for any errors or omissions that may have been made. The publisher remains neutral with regard to jurisdictional claims in published maps and institutional affiliations. This Springer imprint is published by the registered company Springer Nature Switzerland AG The registered company address is: Gewerbestrasse 11, 6330 Cham, Switzerland

Preface

We, the authors of this book, Associate Professor Ulrika Hallberg, and Professor Gunilla Klingberg, have a background as active researchers in the subject areas of public health science and specialist pedodontics, respectively. We have both contributed with a considerable amount of published research in the field of “people with disabilities and their relatives.” We have also been working together side by side since the late 1990s. The initiative of writing a book that highlights international research-based knowledge in the field of “children with special needs” was launched to collect and make readily available the research that exists in the field. Our desire is to improve both the understanding and conditions for these children and their families by raising awareness of their situation. So much research exists on the subject, yet the level of knowledge is generally surprisingly low. Perhaps this is because research is often not only arcane but also difficult to access. Time is not always sufficient to look up current research and read and incorporate the new knowledge. Our hope is therefore that the book will be read and form a knowledge and discussion basis in various educations with a focus on children with special needs. We also hope that the book will provide knowledge that contributes to reflection, respect, and understanding for children with special needs and their families and loved ones. Living with a disability affects all parts of life. As a child, being affected by a disability is therefore something that places enormous demands on top of all the challenges it already entails to growing from a child to an autonomous adult. In addition, the level of knowledge in society about the situation of these children and their families is still severely limited. Together and equipped with knowledge, we can make a difference! Malmö, Sweden 

Ulrika Hallberg Gunilla Klingberg

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Acknowledgment

The authors wish to acknowledge the contribution of Lillemor R-M Hallberg, Professor emerita, Högskolan i Halmstad, Sweden. This book is a translation and update of the work that previously published in Swedish: Hallberg U, Hallberg L R-M (2014) Barn med särskilda behov: En kunskapsöversikt om funktionsnedsättning. Studentlitteratur AB, Lund. ISBN: 9789144102832.

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Contents

Background������������������������������������������������������������������������������������������������������    1 Introduction��������������������������������������������������������������������������������������������������������    1 Definitions and Prevalence��������������������������������������������������������������������������������    4 Previous Research����������������������������������������������������������������������������������������������    6 Stress and Treatment������������������������������������������������������������������������������������������    8 References����������������������������������������������������������������������������������������������������������   12  The Health and Well-being of Children with Disabilities����������������������������   15 Case��������������������������������������������������������������������������������������������������������������������   15 Physical Health of Children with Disabilities����������������������������������������������������   16 Family-Oriented Care����������������������������������������������������������������������������������������   18 Orofacial Health of Children with Disabilities��������������������������������������������������   20 Mental Health/Illness in Children with Disabilities������������������������������������������   23 References����������������������������������������������������������������������������������������������������������   25  The Health and Well-being of Relatives��������������������������������������������������������   31 Case��������������������������������������������������������������������������������������������������������������������   31 Parents����������������������������������������������������������������������������������������������������������������   32 Siblings��������������������������������������������������������������������������������������������������������������   36 Grandparents������������������������������������������������������������������������������������������������������   39 References����������������������������������������������������������������������������������������������������������   42 Occupation��������������������������������������������������������������������������������������������������������   47 Case��������������������������������������������������������������������������������������������������������������������   47 School and Education����������������������������������������������������������������������������������������   48 Recreation for Children with Disabilities����������������������������������������������������������   53 Relief, Support, and Assistance ������������������������������������������������������������������������   55 References����������������������������������������������������������������������������������������������������������   57

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Contents

 the Road to Adulthood������������������������������������������������������������������������������   61 On Case��������������������������������������������������������������������������������������������������������������������   61 Transition ����������������������������������������������������������������������������������������������������������   62 Inclusion, Exclusion, and Risk Behaviors ��������������������������������������������������������   65 References����������������������������������������������������������������������������������������������������������   70 When Something Happens������������������������������������������������������������������������������   73 Case��������������������������������������������������������������������������������������������������������������������   73 Neglect and Abuse ��������������������������������������������������������������������������������������������   74 Deaths����������������������������������������������������������������������������������������������������������������   81 References����������������������������������������������������������������������������������������������������������   84 Index������������������������������������������������������������������������������������������������������������������   87

About the Authors

Ulrika  Hallberg, DrPH,  is an associate professor of public health at Malmö University, Faculty of Odontology, Department of Pediatric Dentistry. Ulrika is in essence a sociologist and received her doctorate in public health in 2003. She also works as a teaching material writer and has written several textbooks mainly about disabilities and mental illness. During the 1990s, Ulrika trained as a social worker but has since her degree worked exclusively with research. Since the end of the 1990s, Ulrika has devoted herself to research and supervision in various aspects of functional impairments. She has been employed at the Department of Psychology in Gothenburg, the Nordic School of Public Health, Halmstad University, and now Malmö University. Ulrika has mainly used grounded theory in her research on different aspects of living with a disability, as the affected party or as a relative, and various aspects of living with mental illness, and has published many books on different aspects of living with a disability. Gunilla Klingberg, DDS, PhD,  is a professor in pediatric dentistry and adviser to the Vice-Chancellor at Malmö University, Sweden. She is also a senior consultant and specialist in pediatric dentistry. In research, she has studied children with special needs, their dental and orofacial health and wellbeing, and how the children’s needs are met by the dental health service. She has studied dental fear and anxiety, dental pain, socially vulnerable children, and young people with disabilities and used both quantitative and qualitative research methods. Using qualitative methods, primarily grounded theory, Gunilla, together with other researchers in a series of studies, has investigated how people with different disabilities and their relatives perceive oral health, need for dental care, and how they want to be cared for and treated by dental professionals. Special focus has been on people with rare diagnoses. To gain a broader understanding of oral health in people with disabilities, she has also investigated how healthcare and dental professionals perceive oral health and dental needs in patients with disabilities. Currently, studies using qualitative methods are carried out to study how children experience pain when they need to have teeth extracted, and how dental students and dentists understand and handle pain during dental treatment. Further studies aim to gain understanding about what xi

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About the Authors

children and adolescent and their parents or legal guardians experience as needs in dentistry and how they perceive oral health. Through studies of patient perspectives, the research group wants to create a basis for prioritizing both care and future research issues. Gunilla has previously published several scientific papers and textbooks.

Background

Introduction Most of us adults consider children, our own and those of others, to be very special individuals. Children are small, vulnerable, and defenseless in the face of a sometimes difficult and challenging reality, and therefore we cherish the safety, security, and future of our children. We also want to protect our children from disease, accidents, disappointments, and other difficult experiences that life may have in store for them. We want our children to live a carefree, harmonious, and happy life without having to be subjected to unnecessary suffering, failure, or other severe trials. A child being born with, or early in life affected by, a disability is of course a major blow to all concerned—to the child affected, to the parents of the child, and to other relatives. The impairment does not in itself necessarily imply that the child will have a less happy or harmonious childhood and adolescence than children who have no disabilities. On the contrary, it can be that a child with disabilities will be extra cherished, loved, and cared for by his family and that the child also gives more love and happiness back to his family and other relatives. This is claimed by several families living with children with various types of disabilities (Hungerbuehler et al. 2011). Of course, a disability can also constitute a threat to the child, both in the form of various limitations, suffering, and other difficult challenges. Children with disabilities may also encounter problems in the form of unsympathetic, insensitive, or even disrespectful surroundings. Many parents of children with disabilities talk about the lack of understanding of the child and the family’s plight and resistance to recognize, appreciate, and respect that the parents are the ones who best know their child and cater to the child’s wants and needs in the best way. Unfortunately, parents may be met with the lack of understanding and respect even from professional caregivers, which is their mission to protect the child’s health and well-being. Many parents believe that abusive or reckless attitudes or opinions in society can be just as hard for the family to bear as having a child with disability (Trulsson and Klingberg © The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 U. Hallberg, G. Klingberg, Children with Special Needs, SpringerBriefs in Social Work, https://doi.org/10.1007/978-3-031-28513-4_1

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2

Background

2003). To meet a child with a disability can bring strong feelings of helplessness, sadness, and inadequacy to both the parents and other relatives but also for other people in the child’s environment. One can feel both anger and frustration over the fact that the child you meet had to be afflicted with a disability and at the same time feel guilty for not being able to do anything about the situation. One may, both as a parent, family member, or as a professional, feel grief over the child’s problems and destiny. As a parent or relative, one may also feel sadness and concern for your own sake—for how life will turn out in the future for the child and his/her family. As a relative or professional, you can feel inadequate for not knowing how to help the child and his/her family or for not being able to help sufficiently. One may also have feelings and thoughts about people’s vulnerability and fragility and the mutability of life—that there are no guarantees in life. Other thoughts and feelings that often pop up among parents of a child with disabilities are questions about justice and injustice for us humans. For friends and relatives, these thoughts may in the worst cases lead to rejection of the affected child and his/her family and to despair when it comes to confidence in their own ability to facilitate or influence the lives of the affected family in a positive direction. Luckily, however, for most people, these emotions lead to action and a persistent struggle to help or do something good for the affected child and his/her family. Being a professional caregiver also includes being a sympathetic fellow human being, when meeting with children with disabilities and their families in daily work. Being a sympathetic fellow human when meeting a child with disabilities can consist in being actively present where the child’s everyday life is unfolding and listening and trying to understand what the disability means to the affected child and his/ her family. How do you go about treating people, children, or adults, affected by disability, in a most respectful way? Combining understanding and empathy with, for example, giving the family bad news or making demands, may seem to be difficult to balance. Being too “nice” to a child, or an adult, with some form of disability may be perceived as adopting an attitude of “pitying,” which is rarely appreciated by either children or parents—regardless of whether the child has a disability or not. Of course, a respectful treatment should be strived for, including empathy, compassion, and an open and understanding dialogue between everyone involved, rather than acting as “outsiders” barging into another person’s life in an unreflective and undifferentiated way. Today there is evidence that most parents of children with disabilities are dissatisfied with the information they receive about the child’s disability, especially regarding unusual disabilities (Ryan and Quinlan 2018). Many parents also feel that the treatment they receive from their surroundings could have been better in terms of respect for the parents’ knowledge about the child’s situation and needs—part of the discontent is even directed at professional caregivers. Being treated well—with compassion, knowledge, respect, and empathy—may be what makes families with children with disabilities able to cope with their often stressful everyday lives (Trulsson and Klingberg 2003). It is also important to be aware that many disabilities can be physical and visible, while other disabilities may be invisible. Nevertheless, these invisible disabilities, such as dyslexia and ADHD, can cause many problems in everyday life for the affected children and

Introduction

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their families. However, something that applies to all children, with or without disabilities, is that they have a right to a good education and an active and satisfying leisure time. Being born with a disability should not have to restrict the life of an individual or limit the development of their own potential. Today, there are unfortunately a lot of prejudice about people—children or adults—with different types of disabilities, which may sometimes lead to mistrust and rejection of both the child and his/her family. Additionally, being a parent of a child with disabilities is associated with very high demands, for example, when it comes to coping with daily life and caring for the child as well as being patient and persistent when it comes to ensuring that the child gets the help and support from society that they are entitled to. Many families with children with disabilities also have a great concern for the uncertainty of the child’s future and how the child will be able to cope with life as an adult (Illum et al. 2018). The authors of this book are researchers of public health and specialist pediatric dentistry, and for many years we have actively, in various ways, contributed to the research on children and adults with disabilities and their situations of life. Our hope is for you, the reader, to find this book useful, important, and interesting. We also hope that this book will serve as a source of knowledge and topics of discuss in education of all students who will meet children with disabilities and their families in their future roles as professionals. The book can also serve as a discussion paper which can call for reflection and constructive discussions and provide insights on how to respond to and support children with disabilities and their families. In writing this book, and as people and scientists, the Convention on the Rights of the Child (CRC 1989) statement about the equal value and equal rights of all children is a clear foundation of our thinking. The CRC is a part of international humanitarian law. This means that the states that approved (ratified) the Convention are obliged to do everything they can to comply with the CRC. This, in turn, means that no child shall be discriminated against because of their disability or their social situation. All children have the right to attend school and to have an active and stimulating leisure time. The most central article in CRC is that children have inviolable rights, and in all decisions concerning children, the child’s best interest shall be in focus and guide the decision-making, according to the CRC, adopted by the UN General Assembly in 1989. With this book, and with the support of current international research in the field, we are trying to give a broad picture on the background, the reality of life, opportunities to professional help and support, as well as on the outlook for children with disabilities and their families. The book is based on a considerable amount of international research studies, and the references given in the book are, for the sake of readability, only a selection of all these studies. Fortunately, research on this topic is very extensive and can generally be said to be aimed at, globally, strengthening the children who are often in a vulnerable and difficult situation and raising awareness of what life can look like and how it can be perceived by children with disabilities and their families worldwide. Despite the extensive research, many more studies are still needed to further deepen the knowledge and understanding, and thus deepen the support for children and their families in vulnerable and demanding situations. We also need more in-depth knowledge of

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Background

children’s individual needs for professional help and support, especially from the children’s own perspective. To improve the treatment, situation of life, habilitation, and care for all children with disabilities in the world, we are in continuous need of new research. We can never say that we know enough. We need more and deeper knowledge about the situations of the affected families and what their needs are and more and deeper knowledge of the best ways to care for, support, and treat children with disabilities and their families.

Definitions and Prevalence The National Board of Health and Welfare in Sweden makes a difference between the term’s disability and impairment. Disability means that you have a congenital or acquired reduced level of physical, psychological, or intellectual/cognitive functioning, or a combination of reductions of these functions. These reductions may be permanent or transitory in nature. The concept of impairment—on the other hand— is an expression for when a troublesome obstacle arises in the encounter between the individual and the environment, due to the environment not being adapted to the circumstances and abilities of the individual. If an individual, for example, cannot be bothered to climb stairs because of “heart problems,” he/she will not feel impaired if the property is equipped with a working elevator. If, however, the elevator is out of order or missing, the individual will perceive his/her “heart problems” as an impairment. An impairment, according to this approach, is present when the conditions are not adapted enough to the individual, or when there is a discrepancy between the abilities of the individual and the expectations or reality of the surroundings. Thus, there are different concepts and explanatory models to study, describe, and understand what a disability is and what it can mean. In the current book, we have chosen to name three different explanatory models or approaches to disability: (1) the biomedical explanatory model, (2) the environmentally relative or interaction-­ related explanatory model, and (3) the biopsychosocial model. The biomedical explanatory model focuses that the individual him−/herself has certain weaknesses and/or defects, which lead to a reduced level of functioning, rather than seeing the individual in relation to his/her environment. This biomedical approach claims that the foundation of a disability is a manifestation of health ailment or a weakness in structure, function, or a certain ability in the individual. This means seeing disability as related to the person’s limited and/or reduced physical, mental, or cognitive abilities. To overcome, or compensate for, the reduced functional capacity, the individual may have to be subjected to some form of treatment, such as physical or cognitive training. The environmentally relative or interaction-related approach to disability claims that the environment is not available for specific individuals or adapted to their actual needs. An environmentally relative or interaction-related approach implies that the individual can only perceive themselves as having a disability in relation to a particular type or kind of environment, rather than the disability being

Definitions and Prevalence

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an obstacle in all situations and environments. The impairment may therefore be said to be socially constructed. The biopsychosocial model of disability views disability as a combination between the health state of an individual and his/her surrounding environment that is the society. This model accepts the provisions of both the social and the medical models, although it assumes that these provisions are not adequate by their own, as these are interrelated. Therefore, an individual with a disability opportunities for employment and full participation in societal activities are influenced by the health conditions and the related treatment of the individual, by her/his education, skills, and training, as well by the contextual factors such as society, infrastructure, and the workplace. Consequently, the biopsychosocial model of disability presumes that disability occurs when the above factors do not function or fail to work to their full potential. When comparing these three models, we can conclude that the biopsychosocial and environmentally relative or interaction-­ related models are more holistic than the biomedical model. Both views or explanatory models may have its validity and are therefore represented in this book. A disability can be either congenital or acquired. Globally, the number of persons with disabilities has gradually increased over time. The reason behind more and more people suffering from disabilities may be explained by a variety of factors. Among others, one reason is that today we can save more and increasingly earlier prematurely born children to life. Generally, one can say that babies born before 28 weeks of gestation have a significantly increased risk of various complications during delivery or as newly borns, which in turn can lead to different types of disabilities. The cause of, and increase in, the number of persons with disabilities is also because infant mortality has decreased dramatically, especially in the “richer” parts of the world. Earlier, children with serious illnesses, severe malformations, and/or disabilities often died at birth or early in life. Today, you can often treat many of these children with good results, although some children suffer from complications, which in turn can lead to different types of disabilities (Sacchetti et al. 2000). Another reason and explanation for the increasing number of people affected by disabilities is that today we can cure or treat diseases and injuries, which previously remained inadequately treated and usually ended in premature death. These groups of patients are now also at increased risk of complications, which can lead to different types of disabilities. Another explanation for the cause and increase in the number of people with disabilities is that the living standards have increased significantly, and this helps children and adults with severe illnesses and disabilities to survive in greater degree than before. In addition, people are generally living longer lives than before. Increased life expectancy means that people may suffer from various types of disabilities, illnesses, or accidents that lead to disabilities at an older age. Today, the medical field advances very rapidly. The body of knowledge is expanding rapidly thanks to research on how injuries and diseases occur and how they can most successfully be treated, cured, and prevented. In addition, the medical-technical knowledge progresses very rapidly, as well as the pharmaceutical research, which increases the chances for development of both advanced medical technology and new medicines. Overall, this means that today we have greater access to more efficient and powerful medical, technical, and surgical treatments and other ways of

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Background

curing, treating, mitigating, and preventing injuries and illnesses. Despite all the new advances in medicine and technology, combined with our vastly improved ability to save and cure more and more seriously ill, injured, or premature infants, complications that may result in some form of permanent disability of the individual can still occur (Sacchetti et al. 2000).

Previous Research There are approximately 240  million children around the world who have some form of disability. Most of these children, an estimated 80 percent, are found in the so-called third world, even if you currently have no exact figures for the prevalence/ incidence of the number of people with disabilities (Olusanya et al. 2020). Thus, we do not know for certain what percentage of the world population is born and/or living with different types of disabilities. This is because the reporting, and the will to report, is very different in different parts of the world. Also, a globally accepted definition of disability is still missing. The reason is, in other words, that the term disability is defined in different ways in different parts of the world but also that the measurement and reporting of the prevalence of disability differ in different parts of the world. This means, of course, a relatively large uncertainty in the estimates of the prevalence of disability in people—children and adults—in different parts of our world. In some countries, there are no measurements or estimates of the prevalence of disability reported at all. Guilt, shame, and stigma may be the underlying reasons for many parents unable to report having a child who is born with some form of disability. A rough estimate is that about 25 percent of the population in all parts of the world are in some way affected by various types of disabilities. However, the statistics are, as mentioned earlier, flawed in many respects. This is the case not only for statistics on the prevalence of children affected by disabilities but also for statistics on what types of disability children are affected by and how their health and daily life is affected by their disabilities. What we do know for sure is that the proportion of persons with disabilities around the world has increased—and still increases rapidly. The increased standard of living combined with the fact that people are getting older, often with some form of disability as a result, and that we now have better and more refined methods for the detection and diagnosis contribute to the increasing prevalence figures (WHO 2021). You could say that disability primarily concerns abnormalities in the development and/or functioning levels in relation to the normal and expected development of physical, mental, and intellectual functions of an individual. What is seen as expected and normal is derived from how different features are developed at an average of the population. The most common types of disability are low vision or blindness, hearing loss or deafness, and various types and degrees of cognitive disabilities. Neuropsychiatric disorders are the second most common types of disability, and the number of children with ADD/ADHD and autism spectrum disorders have increased significantly in recent years (Xu et al. 2018). Then there are also children with special medical needs,

Previous Research

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or medically fragile children, meaning children who have or are at increased risk of developing long-term physical, developmental, behavioral, or emotional conditions. These children are also in need of health care to an extent that far exceeds what other children are expected to require (Edmond and Eaton 2004). A disability of an individual may be permanent or only occur for a limited period. The impairment can be caused by various factors that may be genetic or acquired. These factors may appear before or during birth or develop later in life due to illness or injury. A disability can be subjectively perceived as being limiting to the individual, depending on what level of social disability the individual experiences. An impairment occurs, as mentioned earlier, in the encounter with the surroundings and the circumstances the surrounding area offers or provides. In other words, an impairment is present if the surroundings are not adapted to the specific individual’s needs and abilities. Historically, people with disabilities have often been excluded, or otherwise discriminated against, by large parts of society’s social offerings. This is still going on in some parts of the world, even though the United Nations’ (UN) Universal Declaration of Human Rights proclaims that all human beings are equal and have inalienable rights regardless of race, color, sex, language, religion, political or other opinion, national or social origin, property, ancestry, or other status. Discrimination occurs mostly because of lack of knowledge and lack of resources in the people concerned. Exclusion, discrimination, and/or segregation may possibly have served to protect children with disabilities from the rest of society and sometimes to protect society from children with disabilities. Children with disabilities around the world are often discriminated against and do not have the same opportunity for education, health, and care as children without disabilities (Solarsh and Hofman 2006). Regardless of the reasons, this approach is clearly against the UN Declaration on Human Rights. The current view on people with disabilities, which should be prevalent in society, is based on an approach that promotes the full participation of people with disabilities on an equal basis with all other people, promotes gender equality, and emphasizes that all people are of equal worth. All children are at a theoretical risk of being born with a disability or being affected by a disability at some point in life. The latter particularly applies to those children who already have some form of health problem, as being born prematurely, or children who are already suffering from a severe illness (Fujiura and Yamaki 2000), or children who are born and/or living in poverty (Parish and Cloud 2006). We should, as fellow human beings, be aware of that children with disabilities are not a homogeneous group. This means that all children have different views on the situations of their families and that they are affected differently by their disabilities. Even children with the same diagnosis may have, or may feel that they have, different degrees of disability and thus different degrees of impact on their physical and mental quality of life. This is often because the children’s conditions differ in themselves and that they have different home environments and/or social surroundings. Additionally, there are of course different types of disabilities that will react differently on a given treatment, and thus are possible to influence in different ways. Unfortunately, for many children, a disability in childhood will lead to lifelong health problems, lifelong social problems, lifelong financial problems, and lifelong psychological problems (Halfon and Hochstein 2002). This particularly affects children living in precarious economic

8

Background

circumstances or in poverty (Parish and Cloud 2006) and children with intellectual or cognitive disabilities (Allerton et al. 2011). We know through research that children and adults who have some form of disability generally report feelings of having poorer health than people without disabilities (Wang et al. 2000) and perceive themselves as being ill more days per month than people without disabilities (Drum 2003). Suffering from a disability in childhood may not only lead to large consequences for the child itself but also for family and other relatives. Although some parents report mostly positive effects in life and in their life situation when having a child with disabilities (Hungerbuehler et al. 2011), it has been shown that most parents do not share this experience. Generally, parents are experiencing a significant increase in stress levels when a child with a disability is born (Brehaut et al. 2009). The increased stress affects parents’ mental and physical health (Mackey and Goddard 2006), their intimate relationship (Oelofsen and Richardson 2006), the economy (Parish and Cloud 2006), and the siblings’ situation (Abrams 2009) in different ways. Different types of disabilities affect the family’s perceived stress levels in different ways. It has been seen that parents of children with autism or autism-like syndrome are those who experience the most stress in their parenting (Bourke-Taylor et al. 2009), whereas parents of children with Down syndrome experience the lowest levels of stress (Wright et al. 2006). There are some areas that are strongly associated with the perceived levels of stress in parents of children with disabilities (Eddy and Engel 2008) as follows: • How, and in what direction, the child’s general health condition develops over time. • The severity of child’s health problems. • Any psychological malaise in the child, and the degree of this malaise. • The degree to which the child’s disability prevents the family from participating in various activities. Usually, all families are exposed to significant physical and mental stress due to children with disabilities often having significantly higher care needs than children of the same age without disabilities. Children with disabilities also often have some form of behavioral problems and often have disturbed, or otherwise different and disjointed, sleeping habits (Wright et al. 2006). This often results in parents lacking ability to work full-time (Newacheck et al. 2002). Reduced opportunities for parents to work full-time obviously affects the family’s financial situation in a negative direction, which is another source of stress and uncertainty and can lead to significant financial problems and even poverty.

Stress and Treatment Stress can have different meanings for different people, and in research, different concepts of stress and stress models have been described and used. Over time, the focus has been largely on various physiological and/or psychological factors, and there have also been different levels of emphasis or focus on the role of the

Stress and Treatment

9

individual and his/her environment. One of the earliest stress models developed by Cannon in the 1930s is called the “fight or flight model.” Cannon argued that external threats directed against humans always triggered the same response of physiological consequences, such as increased attention, increased blood pressure, and increased heart rate. These physiological changes prepare the person to escape from the threat or to stay and fight the threat. The perception was that stress was an automatic response to any external threats/stressors. Hans Selye developed a model called the “general adaptation syndrome” (GAS) in the 1950s, which describes stress as having three phases, namely, (1) alarm, (2) resistance, and (3) exhaustion. Selye believed that the alarm stage was initiated as soon as a person was exposed to a stressful situation. The alarm stage involves the individual mobilizing resistance to the stressful external threat. The resistance phase means that the person is trying to fight off the effects of the alarm stage using different strategies to cope with the situation, the so-called coping strategies. The third stage, exhaustion, occurred when the person struggling against the stressful situation can no longer keep fighting. Both Cannon and Selye believed that stress is triggered automatically, in response to external stressors/external threats, and that the individual passively reacts in similar ways to all external stressors/threats. In the 1970s, Richard Lazarus launched a “transactional model for stress” or a “transaction or transition model for stress,” where psychological factors were also included in the model. Lazarus stressed the individual’s interpretation/evaluation (appraisal) of potentially stressful situations/external threats. He argued that only if the individual interprets a situation as truly intimidating, will he/she perceive the situation as stressful or negative. Lazarus described three possible interpretations of a potentially stressful situation, namely, that a situation could be interpreted as (1) irrelevant to the individual, (2) benign or positive for the individual, and (3) harmful and negative for the individual. Lazarus’ stress model is thus based on a transaction/transition between the individual and the environment. Other stress models launched after Cannon’s, Selye’s, and Lazarus’ models have focused on factors/psychological concepts as self-­control, such as the individual’s sense of security and confidence in himself and his own ability (self-efficacy). This could, for example, mean that an individual is convinced that he/she can stop smoking right when he/she wants or that he/she can pass a forthcoming examination with good results. By the approach of these models, stress can be understood as a product of the individual’s capacity for self-control. There is a substantial body of research that highlights stress and coping strategies among parents and other family members of children with disabilities. Many studies have also illustrated various aspects of daily life for children with disabilities and their families/relatives. This research has increased the knowledge and understanding of the significant consequences of having a child with disabilities, both for the child and for their families and relatives. This research has also increased awareness of how children with disabilities and their families want to be treated by professional health-care providers that are part of multi-professional teams that surround the child and his/her family, and by surrounding people and society at large. The large number of studies that have been published, and thus have greatly increased the knowledge, is probably an important reason for why children with disabilities live

10

Background

more on the same terms as children without disabilities today than was the case historically. This is true at least if one looks at the children with disabilities who live in the Western world and in the “richer” countries of the world. In a global perspective, however, the situation looks quite different. Many children with disabilities and their families in “poorer” parts of the world are very exposed, lacking opportunities for care, habilitation, medicine, education, clean water, and nutritious food. In these countries, a disability is considered as something shameful and as a considerable social stigma for the affected child and its family. This calls for increased knowledge and increased financial resources to change the current situation. Although much research concerning the situation of children with disabilities in the “third world” has been published, there is still a great need for more, newer, and more complete knowledge of various aspects of disabilities and the consequences for children and their parents. Still, many communities in many parts of the world lack the resources to ensure that all children with disabilities can live on the same terms as children without disabilities. The ignorance and the lack of resources obviously affect the situations of family members. Families of children with disabilities often live under significant stress, deprived of real opportunities for rest and recreation. This obviously also affects the lives and quality of the home environment, both for themselves and for their children with or without disabilities. In 2001, the World Health Organization (WHO) presented a classification system, which was, and still is, called the International Classification of Functioning, Disability, and Health (ICF). ICF is an instrument, or tool, which can be helpful in different ways when it comes to assessing the overall life situation of people with disabilities worldwide. The concept of disability is described in this classification as an overall term for a variety of causes for limited capabilities in terms of activity and participation in the community. The basis for classification is the individual’s perceptions of their situation and the notion that different people can experience the same disability in different ways. The interactions between the environment and components of health of a given individual also affect individuals in the different social situations he/she resides. In 2007, the WHO presented the International Classification of Functioning, Disability and Health for Children and Youth (ICF-CY) to similarly identify and describe the conditions for children with disabilities when it comes to inclusion and experiences of being active and participating in the community. It may be noted that the ICF-CY focuses on physical function rather than on psychosocial function. These two classification systems, ICF and ICF-CY, are used primarily as tools for the assessment of needs, rehabilitation, and habilitation for adults and children with disabilities. They can also be used as social-­ political tools and to record health or health-related conditions of people with disabilities. At the same time, the extent and/or degree of impairment may also be indicated, as well as the extent to which environmental factors are facilitating or impeding the individual with disabilities. The purposes of the ICF and ICF-CY are also to create a scientific basis, and a common language for describing, understanding, and studying health and health-related conditions, their consequences, and determinants. It is also envisaged that the ICF and ICF-CY will allow the comparison of data between different parts of the health-care system and between different

Stress and Treatment

11

countries and to create a systematic and uniform coding scheme for health information. One can roughly distinguish three different types of disabilities: • Physical impairments, which include fine and gross motor disabilities. Examples of diagnoses may be cerebral palsy (CP) and spina bifida. • Psychiatric or neuropsychiatric disorders, which means that individuals have problems and difficulties in social interaction. Examples of diagnoses in this group could be autism spectrum disorders and ADHD (attention deficit hyperactivity disorder). ADHD involves some form of attention deficit disorder in combination with hyperactivity. ADHD without hyperactivity is usually called ADD (attention deficit disorder), as only a part of the ADHD diagnosis. ADD is the most common form of. • ADHD in girls. 9,8  percent of all children and young people have been diagnosed with ADHD, according to several scientific studies (National Board of Health 2022), which is a sharp increase over the last 10 years. • Intellectual or cognitive disabilities, which means that it takes longer for the individual to understand and learn new things that is to understand/accept what is said, process, and disseminate information. Diagnoses in this group, in addition to intellectual or cognitive impairments, are also sometimes referred to as developmental disabilities. It is estimated that there are about 240 million children in the world suffering from some form of disability, and the prevalence is rising continuously. One factor contributing to the increasing prevalence is that the infant mortality has declined significantly worldwide. Earlier, many children with illnesses or disabilities died early in life, compared to today’s situation. By assiduous research in medicine, technology, pharmaceuticals, and health care, we now have access to more advanced treatments that can save more and more newborns and premature babies from premature death, but sometimes with lifelong disabilities as a result. Today, there are also medical possibilities of curing or treating diseases that previously led to great suffering and premature death. Moreover, the standard of living has improved significantly, resulting in an enormous increase in the chances of survival for children with serious illnesses and disabilities. We also have better and more refined instruments, which help to identify and diagnose disabilities in a more advanced and secure way. Living with a child with a disability affects the lives of the entire family. Most parents of children with disabilities experience a great burden of responsibility and significantly high levels of stress, which lead to less opportunities for rest, recreation, and working outside of the home. This in turn results in poorer economy and standard of living. Globally, many children with disabilities and their families live in poverty, with severely limited options for habilitation, medical care, medicine, education, and limited opportunities for being socially accepted. A considerable amount of research has been published worldwide to improve the understanding of the full situations of life for children with disabilities and their families. This research is probably a major contributing component to why the lives of these children have improved significantly in recent years—at least in comparison to the historical situation. Further research is needed to increase the knowledge of the living

12

Background

situations and the perceived needs of children with disabilities and their families worldwide. It can be noted that there is still much left to do on a societal level for children with disabilities to be able to live their lives with the same rights and opportunities as children without disabilities.

References Abrams MS (2009) The well sibling: challenges and possibilities. Am J Psychother 63:305–317 Allerton LA, Welch V, Emerson E (2011) Health inequalities experienced by children and young people with intellectual disabilities: a review of literature from the United Kingdom. J Intellect Disabil 15:269–278 Bourke-Taylor H, Law M, Howie L, Pallant JF (2009) Development of the child’s challenging behavior scale (CCBS) for mothers of school-aged children with disabilities. Child Care Health Dev 36:491–498 Brehaut J, Kohen D, Raina E et al (2009) The health of primary carers of children with cerebral palsy: how does it compare with that of other Canadian caregivers? PED 114:182–191 Drum CE (2003) BRFSS health behaviors and outcomes project. In: RRTC Health and Wellness Consortium (ed) Changing concepts of health and disability: state of the science conference and policy forum 2003. Oregon Health Sciences, Portland, pp 46–51 Eddy LL, Engel JM (2008) The impact of child disability type on the family. Rehabil Nurs 33:98–103 Edmond A, Eaton N (2004) Supporting children with complex health care needs and their families – an overview of the research agenda. Child Care Health Dev 30:195–199 Fujiura GT, Yamaki K (2000) Trends in demography of childhood poverty and disability. Except Child 66:187–199 Halfon N, Hochstein M (2002) Life course health development: an integrated framework for developing health, policy, and research. Milbank Q 80:433–479 Hungerbuehler I, Vollrath ME, Landolt MA (2011) Posttraumatic growth in mothers and fathers of children with severe illnesses. J Health Psychol 16:1259–1267 Illum NO, Bonderup M, Gradel KO (2018) Parents’ expression of concerns and hopes for the future and their concomitant assessments of disability in their children. Clin Med Insights Pediatr. https://doi.org/10.1177/1179556518784948 Mackey S, Goddard LD (2006) The experience of health and wellness in mothers of young children with intellectual disabilities. J Intellect Disabil 10:303–313 National Board of Health (2022) Data and statistic about ADHD. https://www.cdc.gov/ncbddd/ adhd/data.html Newacheck PW, Hung YY, Wright KK (2002) Racial and ethnic disparities in access to care for children with special health care needs. Acad Pediatr 2:247–254 Oelofsen N, Richardson P (2006) Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. J Intellect Develop Disabil 31:1–12 Olusanya BO, Wright SM, Nair MKC et al (2020) Global burden of childhood epilepsy, intellectual disability, and sensory impairments. Pediatrics 146. https://publications.aap.org/pediatrics/ article/146/1/e20192623/37060/Global-­Burden-­of-­Childhood-­Epilepsy-­Intellectual?autologin check=redirected%3fnfToken%3d00000000-­0000-­0000-­0000-­000000000000 Parish SL, Cloud JM (2006) Financial Well-being of young children with disabilities and their families. Soc Work 51:223–232 Ryan C, Quinlan E (2018) Whoever shouts the loudest: listening to parents of children with disabilities. JARID 31:203–214 Sacchetti A, Sacchetti C, Caraccio C, Gerardi M (2000) The potential for errors in children with special health care needs. AEM 7:1330–1333

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Solarsh G, Hofman KJ (2006) Developmental disabilities. In: Jamison DT, Feachem RG, Makgoba MW (eds) Disease and mortality in Sub-Saharan Africa, 2nd edn. World Bank, Washington, DC, pp 125–147 Trulsson U, Klingberg G (2003) Living with a child with a severe orofacial handicap: experiences from the perspective of parents. EJOS 111:19–25 Wang JJ, Mitchell P, Smith W (2000) Vision and low self-rated health: the blue mountain eye study. IOVS 41:49–54 WHO (2021) Disability and health. https://www.who.int/news-­room/fact-­sheets/detail/ disability-­and-­health Wright M, Tancredi A, Yundt B, Larin H (2006) Sleep issues in children with physical disabilities and their families. Phys Occup Ther Pediatr 26:55–72 Xu G, Strathearn L, Liu B, Yang B, Bao W (2018) Twenty-year trend in diagnosed attention-­ deficit/hyperactivity disorder among US children and adolescents 1997–2016. JAMA Netw 1. https://jamanetwork.com/journals/jamanetworkopen/fullarticle/2698633

The Health and Well-being of Children with Disabilities

Case1 Wilma is 8 years old and very sick after having been born at 23 weeks of gestation. When only a week old, she had a major stroke, but miraculously survived. Wilma lives at home with her parents and two younger sisters. It’s hard to connect with Wilma, but when her sisters come into the room, Wilma emits little screams of joy. Wilma is also suffering from severe cerebral palsy, which means she cannot control her movements. Wilma gets nutrition through a tube connected directly to the stomach. It was a relief when she finally got the prob., because then Wilma’s parents were ridded of the constant struggle and turmoil concerning the food. It seems like Wilma likes ice cream. She sometimes has a small sample just to have the taste of ice cream in her mouth. Wilma sleeps poorly at night. She often falls asleep for a while early in the evening and then stays awake until 4 a.m. and then she yet again slumbers uneasily for a few hours. This causes Wilma’s parents to never being able to do anything in the evenings, like watching TV or just hanging out. They do not dare to risk valuable sleeping time. Although Wilma is small and delicate, she is starting to become too heavy for her parents and her assistants to lift. Wilma’s parents really think that the most difficult part of the situation is that they do not know how Wilma sees her life because they cannot communicate with her. Sometimes it seems Wilma is thoroughly dissatisfied. These times are hard for the parents, and they must use trial and error to try to find out what is bothering Wilma. Wilma’s parents also feel that all care contacts they have around Wilma are hard to manage. Being forced to keep “juggling so many balls” takes its toll, for example, getting hold of the right person, waiting in telephone queues, chasing different people down, or just trying to renew a prescription. And besides, it is often new people, and

 All names and other personal identifiers in the case are fictitious. Any similarity to actual persons, living or dead, or actual events is purely coincidental. 1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 U. Hallberg, G. Klingberg, Children with Special Needs, SpringerBriefs in Social Work, https://doi.org/10.1007/978-3-031-28513-4_2

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The Health and Well-being of Children with Disabilities

then Wilma’s mother must explain everything they have to know about Wilma repeatedly. Wilma’s mother works as an assistant to Wilma, and she is mostly the one who keeps in contact with various health-care providers. Wilma’s little sisters also need their mother’s time and attention. Wilma’s mom often thinks that just keeping all contacts around Wilma is what consumes most of her time, or at least it feels like the most time-consuming task, and if nothing else, it takes so much precious time that could otherwise have been spent on the girls, or perhaps on herself.

Physical Health of Children with Disabilities Advanced medical technology and medical solutions have made survival possible for an increasing number of children with disabilities and long-term illnesses, and this is the case worldwide. Many, or perhaps most, of these children have lifelong health-care needs due to their disabilities and/or illnesses, such as the need for advanced medical care for short and/or long periods (King et al. 2004). There is no general definition of advanced medical care, but the term encompasses measures taken to treat or alleviate the health and/or health-related needs of both children and adults. One may need both advanced medical technology and access to several different kinds of professionals in health care to meet the individual needs of a child or an adult. We sometimes speak of people who need advanced medical care as “medically fragile,” which are often, for example, children with disabilities (Edmond and Eaton 2004). This term simply means that the children have great care needs—of various types, severity, and scope—and that they also may be dependent on technical devices for their daily life and sometimes also for their survival. In the Western world, we have relatively good access to care and treatment for children with disabilities and long-term illnesses. Looking at the situation from a global perspective, many children with disabilities unfortunately lack full access to adequate medical care, even though they may have significant health-care needs. They may also often get inadequate and/or insufficient treatment because of limited opportunities, both practical and financial, to get access to the specialized care that is often required. This is especially true for children with disabilities who live in rural areas or in poor areas (Kar et al. 2022). Parents may, for various reasons, find it difficult to protect, provide, and be responsible for seeing that the children’s needs are met, even if the families can have both practical and economical possibilities for getting treatment. In a global perspective, the largest unmet medical needs of children with disabilities are access to professional dental care and access to medicine (Gaskin and Mitchell 2005). Today, we understand children with disabilities and long-term illnesses need and use significantly more—and more advanced—interventions, than children without disabilities and/or long-term illness (Burns et al. 2010). This applies to both general pediatric outpatient care and long-term hospitalization with advanced medical interventions, such as surgery and/or intensive care. Due to the need for medical and critical care being great and extensive, and many health-care interventions being

Family-Oriented Care

17

given simultaneously, there is an increased risk of medical errors and/or other complications related to care, treatment, and possibly poorly coordinated care efforts. This is something that further enhances and prolongs the health-care needs that the child initially had (Matlow et al. 2006). As the need for treatment can be prolonged for children with disabilities, children are at a high risk for long interruptions in school, which affect learning and development in a negative way (Cooley and McAllister 2004). Approximately one in five children has a great need of various health-care interventions because of disability or long-term illness, which also means that care-related costs for these children is significantly higher than for other children. It is estimated that the costs that families with children with disabilities must pay for themselves and are related to health-care costs where children are hospitalized for long periods are on average twice as high as for other families (Hwang et al. 2001). These costs, of course, are something that low-income families are especially vulnerable to. It is well known that parents of children with disabilities often have less opportunity to work full-time, leading to reduced incomes compared to parents who can work full-time in professional life (Shahat and Greco 2021). We also know that many children with disabilities are living at home with their parents longer than children who do not have disabilities—sometimes well into adulthood. This means that parents are living under a heavy financial burden for a long time—in addition to having reduced opportunities for employment outside the home, as well as increased health-care costs (McConkey 2005). Even if the family’s insurances cover a portion of these medical costs, and thus, there is an “economically protective” effect, the money is often not sufficient to cover all the family’s extra expenses. This can particularly be a problem in a global perspective. Problems related to the rules and restrictions of insurance system cause families with children with disabilities to often have pronounced financial problems (Kuhlthau et al. 2005). The COVID-19 pandemic that began in 2020 had a significant negative impact on the physical health of at least 25% of children with disabilities and long-term illnesses (Arbour-Nicitopoulos et al. 2022). Also, these children’s parents reported higher levels of parental stress, depressive, and anxiety symptoms during the pandemic (Chan and Fung 2022). The lack of both informal and formal support in these families during the pandemic was seen as a major stressor in the parents (Hochman et al. 2022). Homeschooling during the initial phase of the pandemic was also seen as a major stress event for the parents intertwined with low study results in the children (Dobosz et al. 2022). During the COVID-19 pandemic, children with disabilities and long-term illnesses received less face-to-face therapy and more teletherapy which significantly worsened their health status (Allison and Levac 2022). This also included a risk of medical complications and loss of developmental progress in the children (Levin-Decanini et  al. 2022). Further these children’s physical activity decreased during the pandemic (Amatori et al. 2022), owing to social isolation and deprivation of assistance (Grangeiro et al. 2022). Conclusively, families of children with disabilities and long-term illnesses need specific attention from professionals from education, medicine, and social services in a pandemic (Martinsone and Tzivian 2021).

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The Health and Well-being of Children with Disabilities

Family-Oriented Care For children with disabilities, in addition to a good medical care and an empathetic and respectful treatment, habilitation is extremely important in having the opportunity to develop their full potential and abilities. It has been seen that by commencing habilitation programs as early as possible in the child’s life, the intervention can minimize the often negative effects on health due to the disability (Majnemer 1998). Even though the positive effects of early habilitation are well known, many children with disabilities must wait for a long time to get access to the right type of habilitation for the individual child’s needs. Delayed onset of habilitating interventions affects children with multiple disabilities the hardest (Feldman et al. 2002). Despite this, more than 70 percent of parents of children with disabilities report that they are satisfied with the habilitation and medical care that their children receive, including emergency and specialist care. More than 50 percent of the parents, however, are dissatisfied with the professional psychological treatment and the emotional support provided to the child, as well as with the availability of information on the child’s specific disabilities and the transition from pediatric to adult care (Davidsson et al. 2002). You could say that, although many families are happy with the care and support for their children, not all care and nursing is tailored to the individual child’s and/or family’s needs. Uncertainty and negative attitudes from health professionals against children with disabilities and their families are also present (Matziou et al. 2009). Unfortunately, when the child feels worse mentally and/or physically, this makes the habilitation and care of the child more difficult (McCarthy and Guerin 2021). Many parents feel that the uncertainty and/or negative attitudes from professional caregivers or other people surrounding the child constitute an additional burden for the family (Kearney and Griffin 2001). To really listen actively to the parents’ experiences, preferences and feedback are crucial when it comes to creating a trusting communication and good cooperation between the family and caregivers. One can also speak of a consensus or shared responsibility between parents and professional caregivers, which means that you together decide what is best for the child with a disability and his/her family. Collaborating with parents in this way often leads to many benefits, such as reduced uncertainty by increased knowledge and the ability to minimize treatment interventions that the family does not want or appreciate (Carrington et al. 2021). This approach has also been shown to reduce the use of different health-care interventions, which in turn reduces the health-related costs for society at large but also for the individual family (O’Connor et al. 2009). Parents’ satisfaction with health care appears to be strongly linked to how “family oriented” the work of the health-care personnel is (Mas et al. 2019). With a family-­ oriented approach, the family is central. This way the parents experience the following: (1) they continuously have access to information about their child’s disability, (2) they feel respected in the role as parents of their own children, and (3) they receive support and help with their situations of life. Pursuing as good meetings as possible with the entire family in the initial contact with the parents, and especially when the child receives it’s diagnosis, combined with good and accessible

Orofacial Health of Children with Disabilities

19

information to parents about the child’s disability, research has shown to be the most important conditions for parents to be satisfied with the care the child receives, and the support they receive with their situations of life (Millner et al. 1996). Meanwhile, another research has shown that parents feel that the greatest and most important support comes from other parents of children with disabilities who thus are in a similar situation (Case 2000). This also means that it is valuable to have group gatherings for parents of children with disabilities to exchange experiences and mutually support and help each other. Parents of children with disabilities often have a lot of contact with different caring facilities and different professionals for their children’s care and welfare. Parents often express uncertainty and confusion as to what the various health services and professional groups are responsible for and has to offer them and how they can get access to the professional caregivers’ services. According to research, parents also frequently expressed difficulties in being understood—to get the professional care providers to understand the family’s specific needs and situation—and frustration over the difficulties in quickly getting the help they perceive themselves to need (Sloper 1999). Less than a third of all families with children with disabilities have personal experience of a specific care coordinator, who acts as the “central connection point” and keeps in contact with all caregivers working with the child. Research shows that families who have access to “private” care coordinators feel that they get more, faster, and easier access to information about the child’s disability; experience lower levels of stress; develop a better relationship with caregivers; experience fewer unmet health needs; and develop a sense of better collaboration with health-­ care providers (Liabo et  al. 2001). Family-oriented care, which puts the child’s needs in focus, yet also relates to the family’s needs and circumstances and has been proven to work best for these family in terms of responding to the family’s need for support and assistance (McKean et  al. 2004). Family-oriented care is most often used in the Western part of the world, while this form of care is less common globally. With a family-oriented outlook, you consider the child’s needs and life situation in relation to the family’s needs, resources, and life situation, rather than the child with disabilities being treated as a patient. Research that describes a family-­ oriented approach emphasizes that parents are experts on their own children and have a unique understanding of—and knowledge of—their own child’s abilities and needs. Research also shows that parental satisfaction with the care of their children is directly related to how strongly family oriented the care is and to how the family is treated (Dempsey and Keen 2008). In the spirit of the family-oriented care, it is increasingly common globally to encourage parents to take greater responsibility for their children’s health needs, thereby increasing confidence in themselves and their abilities to manage the family’s situation of life (Vanderkerken et al. 2019). The three main characteristics of family-oriented care is apparent in the research: (1) exchange of information in a respectful and supportive atmosphere, (2) teamwork, and (3) to support and strengthen parents’ confidence in their own abilities (King et al. 1996).

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The Health and Well-being of Children with Disabilities

Orofacial Health of Children with Disabilities The orofacial health, or anything related to oral health and oral functions, is an important part of people’s—with or without disabilities—general health. A good orofacial health means that you have good conditions for being able to chew, eat, breathe, and communicate and to be painless in the mouth. The oral health of an individual, regardless of disability, also affects how other people see and perceive him/her as a person. People with poor oral health often develop a reduced self-­ esteem and a poor self-confidence, whether they have disabilities or not (Hallberg and Haag 2007). The physical and mental health—including oral health—of all people of all ages is a global priority. However, one is led to think that people with disabilities constitute a group that, to some extent, are not included in this prioritization. There is a considerable amount of research on the oral health of children without disabilities, while research on the oral health of children with various types of disabilities is somewhat less common. The research on the oral health of children with disabilities that still does exist is usually based on relatively small study groups, often concerns a limited number of disabilities, and often lacks appropriate control or comparison groups. Many efforts have been made for a scientific approach through which we can demonstrate and explain the large differences in oral health and access to advanced dental treatments that exist between children with disabilities and children without disabilities. There are also research studies on the barriers that exist when it comes to the right to dental treatment, and thus equal opportunities for good oral health. The barriers identified mainly concern prioritizing more urgent and directly vital treatment over oral health. The barriers identified also concern ignorance of the importance of orofacial health for the individual, both in the parents but also among the professionals who meet children with disabilities and their families. These barriers are usually not present when it comes to children without disabilities. Despite a considerable amount of research, there is still inequalities in oral health worldwide. Equality in terms of oral health requires the same access to advanced dental care for all people, with or without disabilities. The prevailing inequality is largely caused by knowledge gaps in dental care education in various countries worldwide (Mandic et al. 2016). Research and experience have also shown that there are shortcomings in dealing with persons with disabilities and providing dental treatments to individuals/patients with behavioral problems. There are dental care professionals who fully or partially lack the ability to collaborate with individuals/patients with behavioral problems. There is also a lack of scientifically developed guidelines on how best to deal with these problems in cooperation between dental professionals and patients (Klingberg and Hallberg 2012). Naturally, people with disabilities have the right to good orofacial health on the same terms as other people. They are also entitled to the same access to health care as other people in society. Despite this, orofacial illness is the biggest health problem in children with various types of disabilities (Hallberg and Klingberg 2005). Children with disabilities generally have poorer oral health and less access to advanced dental treatments, than children without disabilities (Ningrum et al. 2021).

Orofacial Health of Children with Disabilities

21

This discrepancy is particularly salient when it comes to children with cognitive disabilities, adolescents with disabilities, and children who have more severe forms of disability, and when the parents of the specific child have a low income (Lewis 2009). One assumption is that this inequality can be due to low levels of education of the parents—particularly mothers—low income; general poor dental health in the family; lack of knowledge about the importance of oral health in the adults surrounding the children; and insecurity and ignorance in the dental staff (Smith and Lewis 2005). Studies have shown that parents and other people who nurse and take care of the child, health care and dental care overlook the oral health-related needs of children with disabilities in favor of more urgent and directly vital needs of the child (Klingberg and Hallberg 2012). In a global perspective, poverty is the greatest risk factor for oral health problems in children with disabilities. Families living with children with disabilities often have much lower economic standards than other families (Howell and Brimble 2013). The most common oral diagnoses of children with disabilities are inflammation of the gums, gingivitis, abnormalities in biting function, and dental caries (Arnrup et  al. 1993). Globally, it is estimated that as many as 80 percent of all children with disabilities suffer from untreated dental caries. In general, studies show that children with disabilities are at best dental health prior to the age 5. After this point, you could say that the dental health deteriorates in these children as their age increases (Lewis et al. 2005). Poor dental health has been shown to have a direct impact on the overall health of the individual. An impaired or poor dental health can lead to pain in the mouth, difficulties in chewing and eating, sleep disturbance, and impaired self-esteem (Horwitz et  al. 2000). Children with disabilities may have trouble with adequately communicating and sharing their symptoms with their environment. The opposite is also true, however, since impaired general health can lead to impaired or poor dental health. A root cause may be, for example, some medications causing dryness of the mouth, and thus causing problems with increased bacterial contamination of the oral mucosa. A reason could also be that people with decreased general health can have a difficult time managing their oral hygiene in an acceptable manner. Caries and periodontal diseases, such as periodontitis, may, according to research, be considered as behavioral disorders (Honkala 1993). Treatment of behavioral disorders in the oral cavity means that the person affected must change their behavior to minimize the risk of the symptoms worsening. Examples of changes in behavior include regularly and adequately cleaning/brushing their teeth, adjusting their eating habits, and rinsing their mouth with fluoride. Children with disabilities often have poorer dental health than other children. A reason for this may be limitations in motor conditions for cleaning/brushing their teeth themselves and lack of knowledge about the importance of regular and proper oral hygiene because they, or their caregivers, according to research, often spend less time brushing than they should (Mitsea et al. 2001). Also, dental treatments may be difficult to carry out on children with disabilities and may also be perceived as more or less traumatic, because it means staying in a new and often unfamiliar environment with different lighting, sounds, and smells. Additionally, the attire that dental staff usually wear may be scary for children, who may also have a lack of understanding for the good purpose of dental treatment

22

The Health and Well-being of Children with Disabilities

(Luscre and Center 1996). Studies have shown that the oral health of children with disabilities can be improved and become as good as, or even better than, the oral health of children without disabilities if (1) oral hygiene was handled adequately; (2) if children’s eating habits were adjusted, for example, by excluding/minimizing the amount of sugar; and (3) if the kids are not allowed to snack between meals. These procedures would prevent unnecessary oral health problems in children with disabilities, according to published research (Kinirons 1983). Children with disabilities depend on their parents and other caregivers for help with general care including daily oral hygiene. Many parents, and others who care for children with disabilities, lack all knowledge or lack some knowledge and understanding of the importance of careful oral hygiene (Bonito 2002). Research has shown that many parents are aware of the need for information about how their children’s dental health and oral hygiene are to be managed, right from when their children are small. These parents also have a desire for access to dental professionals who are likeable and easy to talk to and who have knowledge of the child’s disability (Kaye et al. 2005). A significant reason for why the oral health is “forgotten” or lowered in priority when it comes to children with disabilities is the children’s own lack of understanding of, and involvement in, carrying out the daily oral hygiene routine, and dental treatments, when necessary, sometimes making it difficult to create and maintain good oral health (Howell and Brimble 2013). If you ask parents of children with disabilities what the child’s most important orofacial needs are, they mostly emphasize nutrition/food and communication. Oral health and dental treatments are, oddly enough, not mentioned at all. Thus, the parents are preoccupied with, or worried, that the child is not getting enough nutrition/food and that they as parents have difficulties with communicating with their children to gain knowledge of how the child/children are feeling, physically and psychologically (Trulsson and Klingberg 2003). Research shows that children with disabilities would have a lot to gain if parents (1) had the knowledge of what foods are best at promoting good dental health, (2) had to learn to take care of their children’s oral health in a good way, and if the children (3) had access to/opportunity for regular dental checkups. Research shows that children with disabilities benefit from the dental staff being focused on prevention, providing parents with adequate information about oral health and its importance for the child’s health and how they as parents can best help their children to take care of their oral hygiene (Altun et al. 2010). Dentists and other dental professionals are important but are unfortunately sometimes an overlooked part of the multidisciplinary team that surrounds families with children with disabilities. One can assume that a lack of dental care professionals with training and experience in treating and responding to children with disabilities may be one of the causes of inequalities in oral health for these children (Rao et al. 2005). This is especially true, according to research, if you look at the problem from a global perspective. For over 30 years, research has reported and observed deficiencies in dental education in terms of knowledge of how to respond to and treat children with disabilities. Dental care students still get very limited training and practical experience in the clinical and pedagogical issues of dental care for children with disabilities (Cassamassimo et al. 2004). Health-care workers are also

Mental Health/Illness in Children with Disabilities

23

an important group of professional caregivers who are part of the multidisciplinary team around children with disabilities. Research shows that even though children with disabilities are often hospitalized for longer periods, the nursing staff focus mostly on the children’s basic needs (Carter et al. 2022). Treatment concerning the children’s oral health is not a priority, which may at least partly be explained by deficiencies in organizational support, lack of knowledge among staff, and possibly declining financial resources (Klingberg and Hallberg 2012).

Mental Health/Illness in Children with Disabilities There are only a few studies concerning psychological well-being and quality of life for children and adolescents with disabilities. The studies mainly concern diagnoses such as depression, anxiety, and behavioral problems in children and young people with cognitive disabilities (Fledderjohann et al. 2021). Thus, there is very limited research-based knowledge on mental health/illness, psychological well-being, and quality of life in children and adolescents with disabilities. In the group of children and adolescents with cognitive disabilities, mental disorders such as anxiety, depression, aggression, and lack of motivation are twice as common as in children and adolescents without disabilities (Totsika et al. 2022). Nevertheless, many of these children do not get professional psychological help to the extent that they need and should have (Gallegos et al. 2012). One reason for mental illness being more frequently found in children with cognitive disabilities compared to other groups of children with disabilities may be that children and adolescents with cognitive disabilities may have difficulties making use of appropriate strategies for dealing with problems and challenges they are facing (Gilmore et  al. 2022). This inability, according to studies, may affect mental health and quality of life in a negative direction (Mohr et al. 1980). One reason for children with these problems not having access to psychological help to the extent that they should have is that it can be difficult to detect problems in children with cognitive disabilities. According to the research, this can be explained as follows: children with cognitive disabilities often have difficulties communicating their symptoms to the surroundings, and the parents are typically more vigilant on physical symptoms in their children than on psychological problems (Teagle 2002). Mental illness and poor quality of life in children are strongly related to other health and developmental problems, such as low education and abuse of tobacco, alcohol, and/or drugs. For parents of children and adolescents with disabilities who also suffer from emotional problems and/or behavioral problems, the problem may lead to higher levels of stress. The situation may even exceed the parents’ capacity to manage their lives, which in turn leads to the parents no longer being able to care for their children with disabilities on her own. These parents express a need to get away from the situation for short periods of time, by, for example, going on a holiday by themselves, getting some form of support from other people, and getting information and advice on how best to further handle the situation (Maes et al. 2003). Research shows that the main reason for

24

The Health and Well-being of Children with Disabilities

parents of children with disabilities not actively seeking psychological help when their children and adolescents suffer from mental illness is that they are uncertain of where to turn. Parents often experience that they do not want to be a burden to society, and instead, they want to try to solve the family’s problems on their own for as long as they can (Douma et al. 2006). Children and adolescents with disabilities are at an increased risk of mental health problems compared to children and adolescents without disabilities (Witt et al. 2003). Family members are usually the ones who know a child with disabilities the best, and they also have the greatest knowledge of the child’s needs. Consequently, family members are very valuable when it comes to detecting mental illness and/or psychological problems in a child with disabilities. Research has shown that family members’ feeling about, or suspicions of, the child having psychological problems or mental health problems more accurately predicts/points out problems than the concrete presence of symptoms in the child (Glascoe 2000). The concept of “quality of family life” is an important aspect when it comes to supporting children with disabilities and their families, according to several researchers. If all family members feel good, both physically and mentally, they have better opportunities to support a disabled child in the family and to provide the child with opportunities for development, well-being, and quality of life (Rosenbaum et al. 1998). The concept of quality of family life, according to research, means to include all family members in working with the child with disabilities and considering both the needs and strengths of each individual family member. Good family life is obtained, according to the research, when all family members’ needs are satisfied, when the family feels that it’s pleasant and meaningful to spend time together and when all family members can participate in activities that are important to them (Park et al. 2003). Family-oriented care means that you see each family as unique and as experts on their own child’s abilities and needs, treating the whole family with respectful support and to provide the whole family with all the information needed. Mental health, well-being, and the quality of life are important goals for each individual child. According to research, for children with disabilities, mental health, well-being, and the quality of life are promoted through (1) being able to control their mobility and being able to move as they want and/or desire, (2) perceiving themselves to be independent in terms of functionality and being able to do as much as possible on their own, and (3) subjectively perceiving themselves to have good health, to have available close relationships, and to be cared for or receive help at home, no matter how complex the disability and care needs are (Sarvey 2008). Young people with disabilities also report that their perceived quality of life is related to how other people perceive and accept them. They feel that it is important that other people do not just see them as patients or persons with disabilities. According to research, people with disabilities want to be seen as the human beings (Spratling 2012). The concept of quality of life has no universal definition, but a commonly used definition was formulated by the WHO in 1995: “... a person’s perception of their position in life, in the context of their particular culture and the values that prevail there in relation to his/her goals, expectations, and desires.” Other definitions include “the opportunity or the ability to develop and sustain

References

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meaningful relationships with others,” as an important part of quality of life. One could argue that the concept of quality of life is subjective and that each person has different expectations and requirements for a good life, which means that each person gets to decide how he/she feels/wants to define their quality of life. However, one can assume that each person experience the quality of life in some form. According to studies, even people with very severe and complex disabilities experience and report having a good quality of life (Campbell and McHaffie 1995). Knowledge about the quality of life of children and young people with disabilities is flawed, and the interest in answering these questions is growing. During the initial phase of the COVID-19 pandemic, children with disabilities, like other children, went from ordinary schooling to homeschooling. A significant number of studies have been conducted since then trying to answer the question how homeschooling affected the children’s mental health. These studies show that the impact on the mental health of children with disabilities during the pandemic varied. Some parents of children with disabilities reported decreased anxiety or depression in their children during this time, whereas other reported an increased level of anxiety or depression in their children. Especially parents of children with autism experienced increased levels of anxiety or depression in their children (Asbury and Toseeb 2022). A small number of parents reported a decreasing of anxiety or depression in their children owing to lowered demands regarding school attendance during the pandemic. All in all most children with disabilities and their families reported a significant increasing of mental health problems in both children and parents during the pandemic. The main factors reported to affect mental health negatively were the homeschooling situation, lack of informal and formal support, and the fear of being sick with COVID-19 (Dobosz et al. 2022).

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The Health and Well-being of Relatives

Case1 Julie and Zach have two small children—Josephine, who is 4 years old, and Porter, who is 2 years old—and they are now expecting their third child. Little Jimmy is unexpectedly born far too early and spends his first 2 months in the neonatal unit 30  miles from the family’s home. Zach feels that the situation is overwhelming, with two small children at home who require constant attention, a seriously ill child in the neonatal unit, and a wife who is sad, depressed, and despondent. Julie is in a state of shock and completely devastated by concerns about how it will go with little Jimmy, while she feels physically weak after an emergency caesarean section. Since all “practical” tasks around the children takes up all their time, Zach and Julie hardly have time to talk to each other. Frankly, Zach does not really know what to say or do to comfort Julie. Instead, Zach flees to his job and is working more than ever. Julie spends all her time on the children, both the two little children at home and the little son that she must travel to every day in the hospital. The relationship between Zach and Julie increasingly revolves around solving practical issues around the home and the children. Time passes, and Jimmy comes home, but after a year, it turns out that Jimmy is suffering from severe behavioral problems. When Jimmy gets older, he often throws severe tantrums if his needs are not met immediately. He wants water now! He wants to paint now! Julie has difficulties coping with constantly and directly responding to Jimmy’s never-ending needs. This causes his tantrums to come more frequently. Porter and Jimmy end up in conflicts every day. It’s difficult to bring Jimmy out on the town to do errands because he screams frequently and loudly. This leads to other people often making sarcastic comments such as “Some people should not have children.” A comprehensive investigation of Jimmy is

 All names and other personal identifiers in the case are fictitious. Any similarity to actual persons, living or dead, or actual events is purely coincidental. 1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 U. Hallberg, G. Klingberg, Children with Special Needs, SpringerBriefs in Social Work, https://doi.org/10.1007/978-3-031-28513-4_3

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initiated, and it turns out that Jimmy is suffering from ADHD. Now is the start of Julies struggle to get access to all the help that Jimmy needs. All Julie’s time is occupied by the children and their needs and contacts various government officials and institutions to access the support Jimmy and the family needs. Zach is mostly at work and when he is home, he is tired. He does indeed try to help Julie with the kids, but they are more accustomed to Julie, and she knows how everything should be to function as well as possible. Julie and Zach slip further and further apart. Julie’s parents are busy with their careers and have a minimal amount of time left to help with the kids or babysit. Zach’s parents live far away, and they have problems with their health, so they are not able to offer help or support to the family. Julie has started to suffer recurrent severe headaches, and even panic attacks, which strike when she least expects it. Julie feels as if life is just a struggle to keep Jimmy calm and in good spirits. Josephine tries to help her mother with Jimmy as much as she can, but she also thinks it’s nice to lock her door and be alone in her room and escape her little brothers for a while. Josephine pulls away from the family more and more and spends more and more time alone in her room.

Parents Having a child with a physical or cognitive disability is very demanding for the parents, both when the child is growing up and often far into adulthood (Tomiyama et al. 2018). These high demands primarily include giving the extra care your child needs for their survival, their development, and well-being (Verma and Kishore 2009). It is also very demanding to deal with the prejudices that other people can have when it comes to people that somehow deviate from the norm for a “normal” social behavior or a “normal” appearance or function (Jones et al. 2022). Parents often spend plenty of time getting access to the help the child needs to develop and function optimally as well as for the child to feel as well as possible—physically, mentally, and socially. Naturally, parents can also be insecure in their parenting role because a child with disabilities does not always give sufficient signals to guide them in the subtle interplay between parents and children (Trulsson and Klingberg 2003). Therefore, many parents need support to understand their children’s wants and needs and to make sure that their children get the care and love they need. At the same time, parents must not overcompensate the child’s needs or deprive the child of opportunities for development. There is a considerable amount of international research on how parents to children with disabilities perceive their lives. One can even say that the question “What is it like to be a parent of a child with disabilities?” is the most frequently asked research question in this area. This means that we know relatively much about the lives and practices of these families. Most research, however, concern traditional married couples in heterosexual relationships, while studies on single parents or parents in same-sex marriages are rare, if at all present. For that reason, we do not explicitly address the latter type of relationships and family structures in this book. One can also argue that older studies in the field mostly

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focused on the negative aspects, such as exclusion and physical and mental health problems, associated with being a parent of a child with disabilities. Recently published studies have also drawn attention to the positive aspects of the situation. Sometimes, disabilities are discovered during pregnancy or at birth, but they can also be detected much later in life. You may, of course, suffer from a disability at any stage in life, even as a child, usually because of an illness or injury. When a child is born with a disability or when a child is diagnosed, most parents react with sadness and despair (Seligman and Darling 1989). Expectations of, and dreams about, the expected child being a healthy little baby are “crushed” or dramatically changed, which often contributes to a strong and prolonged grief reaction. This may prevent an acceptance of the real situation—that the child suffers from a congenital or acquired disability. Negative emotions such as denial, shock, or anger may be experienced before the reality of the situation can be “taken in” and processed so that the parents can eventually accept the situation: that their child has a disability. Sometimes parents require professional help to accept, overcome, and eventually learn how to handle the situation and the new little baby to whom they have become parents. The parents must adapt to provide adequate care for their children and care for his/her specific needs, as well as to manage any behavior problems of the child. They also need to gradually meet the child’s medical, financial, and social needs and learn to deal with any technical aids that the child may need (Plant and Sanders 2007). At the same time, there may be siblings who also need to get adequate care and attention. Some parents do even more than “just” adapt to the new situation in that they feel that the new situation can also mean positive changes in the long term. These positive changes may be personal development and maturity of the parents themselves that may, for example, lead to increased personal strength, more meaningful and deep relationships, and a greater appreciation of life as such (Hungerbuehler et al. 2011). Most studies on parents’ experiences of living with a child with disabilities, however, show that parents usually experience increased stress and increased burden of responsibility and that the situation does not only affect the parents themselves. The entire family is affected by increased workload, difficulties in balancing the child’s needs with the parents’ jobs outside the home, increased contacts with social services and health care, role changes in the family, and increased stress and anxiety. The relationships within the family are also affected by reduced communication, less quality time, and a lower degree of satisfaction of partner relationships (Knafl and Zoeller 2000). It is obviously important that parents can make time for themselves and the opportunity to care for their own needs through temporary relief of responsibility for the child. Having the opportunity to care for one’s own needs as a parent means, among other things, a reduced risk for the parents suffering from mental and physical illness, increased ability to maintain the marriage, and increased ability to cope with being a good parent to their child. Any other children in the family may also need one-on-one time with their parents without having to take a sibling with a disability into account. The risk is nevertheless great for parents to suffer from both crisis and stress. People can end up in a state of crisis when they find themselves in a situation where previous experience and learned behavior are not sufficient to understand and overcome the

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current situation. The stressful situation of life for parents of children with disabilities can lead to an increased risk for ending up in states of crisis and other healthrelated problems, such as reduced self-esteem, chronic feelings of sadness, and even clinical depression or depressive symptoms (Brehaut et al. 2009). Additionally, parents of children with disabilities are at increased risk of poor economy, or even ending up in poverty, which further increases the stress levels of these families (Parish and Cloud 2006). The reason behind why the parents is at increased risk for financial problems is not fully understood, but the family’s financial situation is of course strongly related to the extent of their paid work outside the home and the levels of the family’s expenses. Many mothers of children with disabilities are working professionally to less extent than others, or not at all. The main reason for this is that they feel their child’s needs are more extensive and time-consuming than for any siblings without disabilities and therefore they do not have enough time and/ or strength to work outside the home (Gagnon et al. 2020). One can also assume that the financial expenditure increases significantly when you live with a child with disabilities. One reason may be the need for costly medication or treatment, technical equipment, and other adjustment of the home. Numerous studies have shown that the stress situation for families with children with disabilities can be “mitigated” by the child’s age and the absence of other diseases, especially regarding cognitive behavioral problems, the family’s functional level, cultural conditions, family structure, and the level of acceptance of the situation (Kermanshahi et al. 2008). Both mothers and fathers of children with disabilities experience significantly higher levels of stress than other parents, but research has come to different conclusions: (1) that the higher the perceived stress levels are, the younger the child with a disability is; (2) that the perceived stress levels rise in relation to the child’s age; and (3) that the perceived stress levels are not at all related to the child’s age. An interpretation of the results is that the stress levels are high when a child with disabilities is small and the parents are inexperienced in the new situation. One is also aware that the smaller the child, the more care it requires, but you also know that the need for care decreases with age. If care needs persist as age increases because of the child’s disability, it can be assumed that the stress level of the parents remains at the same level as when the child was quite small. Research has shown that parents need to feel that they have a balance between their perceived vulnerability in the stressful life situation and the support they feel they receive from the environment, including the professionals who meet the family (Yan et al. 2022). What parents especially appreciate in the meeting with professional caregivers are (1) committed and knowledgeable of the child’s disability, (2) giving access to the kind of care and treatments that parents believe that the child needs, (3) having respect for parents being experts in their children, and (4) offering continuity by meeting the same person from meeting to meeting (Trulsson and Klingberg 2003). The more the family feels that there is a balance between their own vulnerability and the support they receive, the greater the opportunity for the family to adjust to their life situation and thus reducing the risk of mental and physical ill health (Halstead et al. 2018).

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Research also shows that men and women not only react differently to the stress of caring for a child with disabilities but also deal with stress in different ways (Vernhet et al. 2019). Women generally tend to be more affected by stressful life events than men, especially when stressful life situations include those to which women have a close relationship, such as their own family members (Gray 2003). Women often experience a decreased sense of control in difficult situations, more psychological malaise, and more symptoms of depression than men (Gray 2003). Women also tend to use more emotional or emotion-focused strategies than men to handle stressful situations, such as talking about and verbalizing problems and finding ways to seek support from other people (Thoits 1995). Studies have shown that men perceive themselves to be particularly affected by difficult life situations if they are related to, or affect, work or the family’s financial situation (Gray 2003). Men tend to be more stoic and less verbal in difficult life situations than women and more often utilize problem-focused strategies in such stress-related events; they try to solve the problem in different ways or simply actively escape the problem (Gray 2003). The moms take the biggest practical responsibility for children with disabilities, while fathers continue to work outside the home in the same way as they used to, to support the family financially (Berge et al. 2006). According to research, this can be a reason for the fact that mothers of children with disabilities more often experience higher levels of stress and more symptoms of depression than fathers (Bourke-Taylor et al. 2021). Mothers’ perceived stress is related to the degree of the child’s care needs and to the extent of any behavioral problems in the child; the more demanding the care of a child is and the more behavioral problems a child has, the greater the mothers’ stress levels. Fathers’ perceived stress levels have been shown to be more related to how close the child is emotionally and how socially accepted the child’s disability is (Saloviita et al. 2003). This means that mothers are generally more helped by increased support with the child’s care needs, while fathers are more helped by bonding with the child to reduce their perceived stress. Parents of children with autism or autism spectrum disorders and cognitive disabilities are ones who experience the most stress and the most restrictions in daily life compared to parents of children with other types of disabilities (Wright et al. 2006). Making use of healthy strategies for dealing with a stressful life situation is necessary to maintain mental and physical well-being. Research has shown that families who experience well-being and can handle the situation of the child’s disability in a positive way more frequently make use of problem-focused strategies, which involve both family members and third parties to meet the child’s care needs (Shin 2002). According to research, parents who for various reasons have difficulties to involve other people in the care of the child with disabilities experience increased stress, reduced self-esteem, increased symptoms of depression and anxiety, and are often unsatisfied with their relationship with their partner (Oelofsen and Richardson 2006). The lack of information about the child’s disability is also perceived as something that raises mothers’ stress levels. These mothers also more often express a desire to meet other parents in the same situation for support, than fathers do (King et al. 1996).

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Being parents of a child with disabilities can lead to an acute crisis reaction and continuously living with a great sadness. For their whole lives, parents may be asking themselves “What would have happened if...?” Although most parents of children with disabilities are not depressed, mothers, especially single mothers, show significantly higher levels of depressive symptoms than fathers (Olsson and Hwang 2001). One can say that the risk of depression is related to the parents’ ability to cope with life situations, which in turn is related to the knowledge parents have about the child’s disability and the functional level of the family. The more knowledge you have about the child’s disability and the better the family can handle the situation, the less risk that one of the parents will suffer from depression (Doherty et  al. 2009). The parents’ sense of hope and confidence for their future has also proved to be important for not suffering from depression, which includes a belief and a desire that everything will get better in time (Scheier and Carver 1985). Several studies have shown that partner relationships are adversely affected by living in a family with a child with disabilities (Huff and Hartenstein 2020), while other studies do not show these effects. Other studies show less marital problems in families with children with disabilities (Lundeby and Tossebro 2008). A conclusion that can be made from the different results is that parents of children with disabilities divorce or separate to a lesser extent than other couples while the children are small, while the proportion of separations or divorces rises with the increasing age of the child. Especially mothers of children with disabilities experience a high degree of marital problems, while the same does not apply to fathers in the same situation (Berge et al. 2006). Several research papers show that the more difficult the mother feels the child’s disability to be, the higher the degree of marital problems being experienced (Berge et al. 2006). This can probably be explained as follows: the more severe the mother feels the child’s disability to be, the more time she spends on meeting and satisfying the child’s needs, and the less time there is available for relationships. The fathers who experience a high degree of marital problems are reported to have a more distant relationship with the child with disabilities, while the fathers who experience their marriages as good have a closer relationship with the child (Darling et al. 2011).

Siblings It is estimated that about 20  percent of all the world’s children between 0 and 18 years suffer from some form of disability or long-term illness (Pastor et al. 2009). Most of these children live at home with their parents and siblings, which place high demands not only on the parents but also on the siblings. It is not known how many children are living as siblings of children with disabilities, but one can assume that the number is significant. Siblings of a child with disabilities have been described as the “forgotten children” and that they constitute a potential “risk population” (Rainbow Trust 2018). The reason for this is multifaceted. The relationship between siblings is unique as it is a permanent relationship that is probably the longest and most intense relationship people have in their life. Although jealousy and rivalry are

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often part of the picture, siblings unknowingly help each other to develop social skills (McHale et al. 2016). Sibling relationships also have great influence on various aspects of the individual’s personal development. In interacting with your siblings, you can examine and develop your own social and empathic ability. You also develop your sense of self-esteem, self-image, and self-value as well as the respect you give and receive from other people (Mandleco et al. 2003). There are more and more studies carried out on siblings of children with disabilities. Most research, however, involve siblings of children with cognitive disabilities, and it is doubtful whether these results also apply to siblings of children with physical disabilities and long-term illnesses. There are different requirements for adaptation in the family, and thus on the siblings, if a child has cognitive or physical disability (Sloper and Turner 1993). It has been seen that siblings of children with cognitive disabilities and behavioral problems themselves experience more behavioral and adjustment problems, while siblings of children with physical disabilities experience less of that type of problem. Siblings of children with serious or chronic medical conditions express a great concern for and fear of loss of their sick sibling. Although much research has been done on siblings, most studies concern implications, problems, and experiences of living with a sibling with a disability, rather than the sibling relationship as such. Previous research was, as previous research on parents, mostly focused on studying the problems and difficulties for siblings of children with disabilities. Later it has been realized that there are some advantages to growing up with a brother or sister with a disability. Today it is well known that growing up with a sibling with a disability involves both pros and cons. The siblings are at risk of physical, mental, and social health problems by growing up with a brother or sister with a disability, but it can also bring benefits for the development of their personalities (O’Kane-Grisson and Borkowski 2002). The risk of adjustment and behavioral problems for the siblings can be mitigated in various ways (Haslam et  al. 2018). But one can see that the negative effects of growing up with a sibling with a disability are often detected right away, while the positive effects often are not fully revealed until the sibling is older or even an adult (Rossiter and Sharpe 2001). Today we know that siblings of children with disabilities in most cases adapt well to the situation. Only a minority of the siblings are at risk for developing severe adjustment difficulties and behavioral problems, such as problems in school, reduced self-esteem, and social isolation (Giallo et al. 2012). There are reports showing that the siblings who develop adjustment difficulties and behavioral problems are often more anxious and withdrawn than siblings of children without disabilities. The reports also show that these siblings are more aggressive and have more problematic peer relationships than other children (Lobato et al. 1987). Children can also experience jealousy and show aggressive feelings toward their siblings with disabilities. This may in turn create feelings of guilt and anxiety in siblings who also may experience difficulties to freely talk about their feelings for their brother’s/sister’s disability in the family (Scelles et al. 2012). Siblings of children with disabilities may also find that their needs and wishes are overridden in the family and that they as individuals are just “taken for granted” by the parents. These experiences can lead to problems when it comes to developing a positive self-image and a strong self-esteem (Abell and

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Gecas 1997). It may be that siblings of children with disabilities experience only getting attention when they have an illness or physical symptoms. The longing for parental care can convert the feelings of the sibling into psychosomatic symptoms. Siblings can  experience that it feels good to be the person in the family that the parents are extra  concerned about. Although adjustment difficulties occur in siblings, it is more common for siblings of children with disabilities to be extra productive and extra responsible (Giallo et al. 2012). Although siblings of children with disabilities may also risk setting too high standards for themselves, they can, in combination with the high requirements, also have difficulties with both receiving support and taking criticism, and they may dislike failure. Both the siblings who have obvious difficulties in adapting and those who outwardly seem productive and responsible may therefore be at risk for behavioral problems. Factors that appear to be related to this risk have been shown to be the severity of the sibling’s disability, parental adjustment to the situation, family conflicts, the family’s ability to solve problems, and parents’ opportunities for rest/recreation and access to a social network (Vermaes et  al. 2010). It has been shown that support groups for siblings where one is allowed to talk about their feelings and get direct and clear information increase the level of knowledge when it comes to the sibling’s disability and the degree of involvement in the sibling’s situation of life (Hanvey et al. 2022). Support groups for siblings provide an opportunity to express one’s thoughts and feelings in a secure group and the opportunity to make new contacts with other children in the same situation. There is also a beneficial impact on the self-esteem of the sibling— especially if parents and siblings participate in the support group together (Haslam et al. 2018). Thankfully, several studies report a more positive image of being a sibling of a child with disabilities, namely, that these siblings are more empathetic, more involved, less avoidant, more social, more tolerant, and have better self-esteem than other siblings where no one has a disability (Leedham et  al. 2020). It has also emerged in studies that siblings of children with disabilities fare better if the family is larger, if the socioeconomic conditions are good, if the parents have a positive attitude toward the child with a disability, if the age difference between the siblings is large, if the child with disabilities is small, and if the disability is of a milder degree (Boyce and Barnett 1993). Furthermore, results from research establishes that the siblings do better if they do not have to experience the feelings of siblings with disabilities being favored by the parents, if they do not have to experience feelings of rejection from the parents, if they feel that communication with parents is direct and open, and if they are allowed express their feelings, both positive and negative, about the family’s situation (Siegel and Silverstein 1994). If there are more healthy siblings in the family, this has also been shown to reduce the risk of behavioral problems by the coexistence of more children who can share the responsibility in caring for the child with disabilities, and there are also more people with whom they can share their thoughts and who live in the same situation. If the parents live in a harmonious relationship without marital problems and with a tolerant and positive atmosphere in the family, it has also been shown to reduce the risk of behavioral problems in siblings. There is thus, according to research, no linear

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connection between a child’s disability and their siblings’ psychological well-being. Rather, one can describe it as a potential risk factor to grow up with a sibling who has a disability. The “risk” can be mitigated by favorable socioeconomic conditions, good adaptability in the family, the ability to deal with problems in the family, and the age distribution of siblings. Siblings of children with disabilities may even have a higher social status among peers and teachers and get more positive attention than other children. Other children and teachers can, for example, feel that these children possess a greater knowledge of life and a greater capacity for empathy than others, giving them more attention than other children (Guse and Harvey 2010). There are ongoing discussions on whether sex, age, and birth order of siblings are important for how they deal with growing up with a sibling with a disability, but we need more studies to be able to know for certain. What studies still show is that the sisters, and particularly older sisters, are generally more involved in the care of their siblings with disabilities and take a permanent responsibility for the care of their siblings. This responsibility can consist in babysitting, serving as a “second mother” or close friend of the child with disabilities, and helping to socialize the younger sibling with other children and adults outside the home. Older sisters also express more concern for the sibling’s situation. All this is perceived as a significant stress factor by the older sisters to a sibling with a disability and can eventually lead to behavioral problems (Thompson et al. 1994). Older brothers are more frequently reported than their sisters to take less responsibility for the sibling with a disability and having more conflicts with siblings. Some studies argue that older siblings of a child with disabilities are more likely to experience mental illness for often having to take a great responsibility for their younger siblings with disabilities (Boyce and Barnett 1993). Other studies claim that older siblings are at less risk for psychological malaise by being born into a “normal” family, without the increased stress of living with a child with disabilities (Friedlin and Florian 1996). You could say that they become “vaccinated” against certain risk factors through their parents’ undivided attention in their first years of life. Younger siblings, on the other hand, was born into a complex family environment with increased levels of stress, which may be liable to affect their well-being in a negative direction. This is because the older sibling with a disability requires a lot of the parents’ time and attention at the expense of the younger child (Haunstein 1990). Siblings of children with disabilities themselves state that they often try to accept that the sibling with a disability sometimes gets more attention from their parents, but this is harder to accept if the sibling with a disability is the younger sibling (Pit-Ten Cate and Loots 2000).

Grandparents Research on grandparents of children with disabilities has increased somewhat in recent years but is still modest. The reason that research has increased slightly may partly be because grandparents today are more willing to take on some form, or part, of a “parental responsibility” for their grandchildren. Perhaps it might be because

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the older generation generally are at better health at higher ages and that the community has paid attention to the grandparents as an important source of practical and emotional support to families with children with disabilities. Most of the existing research in this area is based in North American conditions and mostly concern grandparents of children with cognitive disabilities. The studies are often based on small study groups, focused on parents’ views on the role of the grandparents and especially mothers’ views on grandparents’ practical and emotional support. Existing research also mostly concern questions about the positive and negative effects of practical and emotional support and very little about grandparents’ subjective experiences of having grandchildren with disabilities. When a child is born with disabilities, grandparents initially experience the same feelings as the child’s parents—sadness, confusion, and despair. Like the parents, the grandparents experience a grieving process when the child receives a diagnosis and a grieving process over the healthy child you thought you would have but did not receive (Novac-­ Pavlic et al. 2022). As time passes, the initial despair is turned to more positive and hopeful feelings about the situation, even if the knowledge that the disability is not reversible may evoke strong feelings of frustration and helplessness. Especially when the child has cognitive disabilities, this is perceived as particularly difficult to come to terms with. Although grandparents generally have a negative and gloomy picture of life with a child with disabilities, they still have mostly positive experiences of life with their own grandchildren (Katz and Kessel 2002). Those who usually help and support adult people in vulnerable situations are their life partners. When that option is not available or is not adequate, it is often the parents who provide support and help. This means that parents more often “come to the aid of” their adult, single children than for adult children living in relationships (Green 2001). Support and assistance of parents to young but adult single daughters and to divorced adult children have proved to be especially important. At the birth of a child with disabilities, it is often the grandparents who are first contacted and informed by the parents (Vadasy 1987). Optimally, grandparents can be a major practical and emotional support to both the parents, the child with disabilities, and any siblings, and they can also serve as role model for the parents when it comes to responding and adapting to the new and challenging family situation (Sanchez-­ Gomez et al. 2021). It has been shown that the practical support that is considered most valuable by parents primarily concerns babysitting services, financial assistance, and help with errands and contacts to get increased ability to cope with the extra burden of caring for a child with disabilities (Seybold et al. 1991). The emotional support that is perceived as most valuable is any assistance that can minimize the experiences of social isolation and social stigma often associated with caring for a child with disabilities. This emotional support consists in listening, expressing sympathy and understanding, encouraging, and allowing parents to freely express their feelings. It is not more common that grandparents provide support for parents of children with disabilities than to provide support for parents of children without disabilities. However, it is common for grandparents to provide more regular support than other relatives, friends, or neighbors to parents of children with disabilities (Green 2001).

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Practical and emotional support is especially common (1) when the relationship with the adult child/parent was strong even before the birth of the child with a disability, (2) when the grandparents live geographically close to the family, and (3) when the grandparents have high education (Trute 2003). Practical and emotional support from grandparents and other close family members has been shown to be more effective for psychological well-being than the support from professional caregivers (Prudhoe and Peters 1995). Grandparents’ support can help ­parents/family to connect/embrace the child with a disability and feel joy and pride over the child. This is especially true when the grandparents are proud and tells positive things to other people about their grandchildren, providing increased opportunities for parents to connect with/embrace the child with disabilities (Green 2001). According to research, how much support grandparents can and want to give depends on the quality of the relationship with the parents and how much they will be “admitted” in the family’s living situation. The more they are involved by the parents and the more information they get, the more they tend to want to help and support the family (Katz and Kessel 2002). For some families, it is not possible to get practical and emotional support from grandparents, because of, for example, long distance, deep, unresolved conflicts, and severe health problems. Research has also shown that the support and assistance from grandparents can have both positive and negative effects for both the grandparents themselves and for parents of children with disabilities. A positive aspect for the grandparents is that it feels good for them to be useful and to be able to help. It has been seen in studies that grandparents who volunteer as practical and emotional support feel that their relationship with their partner is strengthened by having the desire to help their adult child and his/her family in common (Katz and Kessel 2002). The focus of grandparents in the support they provide is often to help the family to maintain good existing family relationships, meet any healthy siblings’ needs, keep the family together, and meet their other grandchildren’s needs (Margetts et al. 2006). Maternal grandparents, especially grandmothers, are often more practically and emotionally involved in the child with disabilities than paternal grandparents (Seligman et al. 1997). It has been seen that it is primarily the support of the maternal grandmother, i.e., their own mother, that mothers of children with disabilities value most. Mothers who experienced strong emotional support from their own mothers also experience greater psychological well-being than other mothers who have not experienced this support (Trute 2003). The support of paternal grandparents appears to be more dependent on the quality of the relationship with the daughter in law. Depending on how much the daughter in law let the grandparents partake in caring for the child with a disability and how much information they receive about the child’s condition and health status, according to research, the support and efforts from the paternal grandparents increase (Katz and Kessel 2002). The paternal grandparents have an important role to play in these families, particularly as an emotional support and a role model for the father of the child with disabilities. Support from paternal grandparents can increase the father’s psychological well-being and his commitment to the child and therefore may also facilitate the mother’s emotional adjustment to the situation. Surprisingly, it has been seen that the practical support from grandparents

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will not affect the families’ sense of well-being significantly. Rather, it is the emotional support from the grandparents of the child with disabilities that affects the family’s experience of well-being the strongest. One can say that the emotional support from the paternal grandmother of the child with disabilities is most important for the father’s psychological well-being and support from the maternal grandmother is most important for the mother’s psychological well-being (Trute 2003). Whether the grandparents want to be of support, according to research, is due to previous life experiences, the strength of their relationship, and their overall experiences and perceptions of the disability itself (Katz and Kessel 2002). The extent of the support that grandparents can and want to provide naturally changes over time, depending on, for example, their own health and general changes in life situation, and the support cannot be taken for granted. The negative side of providing support to their adult children and his/her family is that grandparents’ own well-being may be affected negatively. They may also feel frustrated about the situation and wish that they could do more for the child with disabilities and their family (Priboi et al. 2022). Grandparents who provide support often worry about their own aging and what will happen to the family after they no longer have the strength to support them. There arise questions such as how the family with a disabled child and any siblings will get along when that time comes (Katz and Kessel 2002). In addition, grandparents’ involvement in their adult children’s families is often a risk for several conflicts. Often grandparents must make sacrifices to be able to support the family in the best way. Grandparents may feel that these “sacrifices” are not always fully appreciated by the adult children and their families. It may even seem as if the grandparents are being taken advantage of by their adult children and their families (Miller et al. 2012). It may also be that the grandparents, for different reasons, cannot be supportive of their children and their families and instead feel the desire, or need, for support themselves  from their adult children (Ferguson et  al. 2004). In families with a child with disabilities who for various reasons do not receive support from the grandparents, the parents of the child feel that they need to balance what they tell their parents about. They consider how much their parents need to know and what information they can handle. The reference point may be the response from their parents, such as denial or trivialization of the child’s difficulties and the family’s precarious situation (Green 2001).

References Abell E, Gecas V (1997) Guilt, shame, and family socialization: a retrospective study. J Fam Issues 18:99–122 Berge JM, Patterson JM, Rueter M (2006) Marital satisfaction and mental health of couples with children with chronic health conditions. Fam Syst Health 24:267–285 Bourke-Taylor HM, Joyce KS, Grzegorczyn S, Tirlea L (2021) Profile of mothers of children with a disability who seek support for mental health and wellbeing. J Autism Dev Disord 52:3800–3813

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Boyce GC, Barnett WS (1993) Siblings of persons with mental retardation: a historical perspective and recent findings. In: Stoneman Z, Berman PW (eds) The effects of mental retardation, disability, and illness on sibling relations. Paul Brookes, Baltimore, pp 145–184 Brehaut JC, Kohen DE, Gamer RE, Miller AR, Lach LM, Klassen AF, Rosenbaum PL (2009) Health among caregivers of children with health problems: findings from a Canadian population-­based study. Am J Public Health 99:1254–1262 Darling CA, Senatore N, Strachan J (2011) Fathers of children with disabilities: stress and life satisfaction. Stress Health 28:269–278 Doherty N, McCusker CG, Molloy B, Mulholland C, Rooney N, Craig B, Sands A, Stewart M, Casey F (2009) Predictors of psychological functioning in mothers and fathers of infants born with severe congenital heart disease. J Reprod Infant Psychol 4:390–400 Ferguson N, Douglas G, Lowe N (2004) Grandparenting in divorced families. Policy Press, Bristol Friedlin N, Florian V (1996) The influence of structural and functional factors on children’s adjustment to their siblings’ illness: a comparison between physical disability, life-threatening illness, and sporadic chronic illness. Soc Choice Welfare 3:305–324 Gagnon RJ, Garst BA, Kouros CD, Schiffrin HH, Cui M (2020) When overparenting is normal parenting: examining child disability and overparenting in early adolescence. JCFS 29:413–425 Giallo R, Gavida-Payne S, Minett B, Kapoor A (2012) Sibling voices: the self-reported mental health of siblings of children with a disability. Clin Psychol 16:36–43 Gray DE (2003) Gender and coping: the parents of children with high functioning autism. Soc Sci Med 56:631–642 Green S (2001) Grandma’s hands: parental perceptions of the importance of grandparents as secondary caregivers in families of children with disabilities. Int J Aging Hum Dev 53:11–33 Guse T, Harvey C (2010) Growing up with a sibling with dwarfism: perceptions of adult non-dwarf siblings. Disabil Soc 25:387–401 Halstead EJ, Ekas NV, Hastings R, Griffith GM (2018) Associations between resilience and the well-being of mothers of children with autism spectrum disorder and other developmental disabilities. J Autism Dev Disord 48:1108–1121 Hanvey I, Malovic A, Ntontis E (2022) Glass children: the lived experience of siblings of people with a disability or chronic illness. J Community Appl Soc Psychol 32:936–948 Haslam SA, McMahon C, Cruwys T, Haslam C, Jetten J, Steffens NK (2018) Social cure, what social cure? The propensity to underestimate the importance of social factors for health. Soc Sci Med 198:14–21 Haunstein EJ (1990) The experience of distress in parents of chronically ill children: potentials or likely outcome? J Clin Child Psychol 19:356–364 Huff SC, Hartenstein JL (2020) Helping children in divorced and single-parent families. In: Wampler KS, McWey LM (eds) The handbook of systemic family therapy, systemic family therapy with children and adolescents, vol 2. Wiley, Hoboken Hungerbuehler I, Vollrath ME, Landolt MA (2011) Posttraumatic growth in mothers and fathers of children with severe illnesses. J Health Psychol 16:1259–1267 Jones SC, Gordon CS, Akram M, Murphy N, Sharkie F (2022) Inclusion, exclusion and isolation of autistic people: community attitudes and autistic people’s experiences. J Autism Dev Disord 52:1131–1142 Katz S, Kessel L (2002) Grandparents of children with developmental disabilities: perceptions, beliefs, and involvement in their care. Issues Compr Pediatr Nurs 25:113–128 Kermanshahi SM, Vanacki Z, Achmadi F, Kazemnejad A, Murdock E, Azadfalah P (2008) Uranian mothers’ perceptions of their life with mental retardation: a preliminary phenomenological investigation. J Dev Phys Disabil 20:317–326 King G, King S, Rosenbaum P (1996) Interpersonal aspects of caregiving and client outcomes: a review of the literature. Ambul Child Health 2:151–160 Knafl K, Zoeller L (2000) Childhood chronic illness: a comparison of mothers’ and fathers’ experiences. J Fam Nurs 6:287–302

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Leedham AT, Thompson AR, Freeth M (2020) A thematic synthesis of siblings’ lived experiences of autism: distress, responsibilities, compassion and connection. Res Dev Disabil 97. https:// pubmed.ncbi.nlm.nih.gov/31869772/ Lobato DJ, Barbour L, Hall LJ, Miller CT (1987) Psychosocial characteristic of preschool siblings of handicapped children. J Abnorm Child Psychol 15:329–338 Lundeby H, Tossebro J (2008) Family structure in Norwegian families of children with disabilities. JARID 21:246–256 Mandleco B, Olsen SF, Dyches T, Marshall E (2003) The relationships between family and sibling functioning in families raising a child with a disability. J Fam Nurs 9:365–396 Margetts JK, Le Courteur A, Croom S (2006) Families in at state of flux: the experience of grandparents in autism spectrum disorder. Child Care Health Dev 32:565–574 McHale SM, Updegraff KA, Feinberg ME (2016) Siblings of youth with autism spectrum disorders: theoretical perspectives on sibling relationships and individual adjustment. J Autism Dev Disord 46:589–602 Miller E, Buys L, Woodbridge S (2012) Impact of disability on families: grandparents’ perspective. J Intellect Disabil Res 56:102–110 Novac-Pavlic M, Malek SA, Rosenbaum P, Macedo LG, Di Rezze B (2022) A scoping review of the literature on grandparents of children with disabilities. Disabil Rehabil 44:3326–3348 Oelofsen N, Richardson P (2006) Sense of coherence and parenting stress in mothers and fathers of preschool children with developmental disability. J Intellect Develop Disabil 31:1–12 O’Kane-Grisson M, Borkowski JG (2002) Self-efficacy in adolescents who have siblings with or without disabilities. Am J Ment Retard 107:79–90 Olsson MB, Hwang CP (2001) Depression in mothers and fathers of children with intellectual disability. J Intellect Disabil Res 45:535–543 Parish SL, Cloud JM (2006) Financial well-being of young children with disabilities and their families. Soc Work 51:223–232 Pastor P, Reuben C, Loeb M (2009) Functional difficulties among school-aged children: United States 2001–2007. NHIS 19:11–23 Pit-Ten Cate I, Loots GMP (2000) Experiences of siblings of children with physical disabilities: an empirical investigation. Disabil Rehabil 22:399–408 Plant KM, Sanders MR (2007) Care-giver stress in families of preschool-aged children with developmental disabilities. J Intellect Disabil Res 51:109–124 Priboi C, Gantner B, Holmer P, Neves da Silva L, Tinner EM, Roser K, Michel G (2022) Psychological outcomes and support in grandparents whose grandchildren suffer from a severe physical illness: a systematic review. J Intellect Disabil Res 8:e09365. https://doi.org/10.1016/j. heliyon.2022.e09365 Prudhoe CM, Peters DL (1995) Social support of parents and grandparents in the neonatal intensive care unit. Ped Nurs 21:140–146 Rainbow Trust (2018) See us, hear us, notice us: The case for supporting siblings of seriously ill children. https://rainbowtrust.org.uk/uploads/other/pdfs/Full_Report_See_Us_Hear_Us_Notice_Us Rossiter L, Sharpe D (2001) The siblings of individuals with mental retardation: a quantitative integration of the literature. JCFS 10:65–84 Saloviita T, Itälinna M, Leinonen E (2003) Explaining the parental stress of fathers and mothers caring for children with intellectual disabilities: a double BCX model. J Intellect Disabil 47:300–312 Sanchez-Gomez MC, Martin-Sevillano R, Martin-Cilleros M, Mena Marcos JJ, Garcia-Penalvo FJ (2021) Nurturing grandchildren with down syndrome: a qualitative study on grandparents needs using digital tools. Front Psychol 12. https://doi.org/10.3389/fpsyg.2021.661205 Scelles R, Bouteyre E, Dayan C, Picon I (2012) Support groups for sisters and brothers of children with intellectual and developmental disabilities. Early Child Dev Care 2:249–261 Scheier MF, Carver CS (1985) Optimism, coping and health: assessments and implications of generalized outcome expectancies. Health Psychol 4:19–47

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Seligman M, Darling RB (1989) Ordinary families, special children: a system approach to childhood disability. Guilford Press, New York Seligman M, Goodwin G, Paschal K, Appelgate A, Lehman L (1997) Grandparents of children with disabilities: perceived levels of support. Educ Train Ment Ret Dev Disabil 32:293–303 Seybold J, Fritz J, MacPhee D (1991) Relation of social support to the self-perceptions of mothers with delayed children. J Community Psychol 19:29–36 Shin JY (2002) Social support for families of children. J Pediatr Nurs 12:238–252 Siegel B, Silverstein S (1994) What about me? Growing up with a developmentally disabled sibling. Plenum Press, New York Sloper P, Turner S (1993) Risk and resistance factors in the adaption of parents of children with severe physical disability. J Child Psychol Psychiatry 34:167–188 Thoits PA (1995) Stress, coping and social support processes: where are we? What next? J Health Soc Behav Extra 35:53–79 Thompson AB, Curtner ME, O’Rear MR (1994) The psychosocial adjustment of well siblings of chronically ill children. Child Health Care 23:211–226 Tomiyama S, Kikuchi M, Yoshimura Y, Hasegawa C, Ikeda T, Sait DN, Kumazaki H, Naito N, Minabe Y (2018) Changes in maternal feelings for children with autism spectrum disorder after childbirth: the impact of knowledge about the disorder. PLoS One 13(8):e0201862. https://doi. org/10.1371/journal.pone.0201862 Trulsson U, Klingberg G (2003) Living with a child with a severe orofacial handicap: experiences from the perspective of parents. Eos 111:19–25 Trute B (2003) Grandparents of children with developmental disabilities: intergenerational support and family well-being. Fam Soc 1:119–126 Vadasy PF (1987) Grandparents of children with special needs: support especially for grandparents. Child Health Care 16:21–23 Verma RK, Kishore MT (2009) Needs of Indian parents having children with intellectual disability. Int J Rehabil Res 32:71–76 Vermaes IPR, van Susante AMJ, vanBakel HJA (2010) Psychological functioning of siblings in families of children with chronic conditions: a meta-analysis. J Pediatr Psychol 37:166–184 Vernhet C, Dellapiazz F, Blanc N, Cousson-Gelie F, Miot S, Roeyers H, Baghdadli A (2019) Coping strategies of parents of children with autism spectrum disorder: a systematic review. Eur Child Adolesc Psychiatry 28:747–758 Wright M, Tancredi A, Yundt B, Larin H (2006) Sleep issues in children with physical disabilities and their families. Phys Occup Ther Pediatr 26:55–72 Yan T, Hou Y, Deng M (2022) Direct, indirect, and buffering effect of social support on parental involvement among Chinese parents of children with autism spectrum disorders. J Autism Dev Disord 52:2911–2923

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Case1 When Adrian is 5 years, the unthinkable happened—he got hit by a car. For a long time, he hovers between life and death, having extensive damages. The fractures and wounds in time heal as they should, but Adrian has also suffered extensive head injuries. It is a difficult situation for everyone around Adrian and especially for Adrian’s parents. They must both cope with the situation in practical terms but also handle all the guilt, sadness, anxiety, and bottomless despair. Taken together, Adrian stays a year at the hospital and at various rehabilitation centers. The remaining problems Adrian suffers primarily concern motor functions, but he also has minor cognitive disabilities. Adrian can walk short distances with difficulty but is dependent on his wheelchair if he is to travel a longer distance. Adrian’s speech is slow, and it is quite difficult for outsiders to understand what he says. Today Adrian is in second grade at a school that is not adjusted for children with disabilities. The reason for this is that Adrian’s parents, and the team of professionals that surround Adrian and his family, think that it is good and developing for Adrian to be among “healthy” children as much as possible. Adrian, who has no siblings, has lived relatively isolated from other children during his convalescence. Adrian has an assistant to always help him in school. It’s not the same assistant all the time—the assistants shift, sometimes rapidly, and sometimes they stay a little longer. Adrian has a great interest in soccer, and at home he is usually playing ball with his parents or any of his assistants. At school, however, he often stands next to the soccer field at recess, with his assistant at his side, and watches as the other children play soccer. He has difficulties keeping up with the other children’s games, and he has never been asked to join by the other children. It’s not that the other children are mean to him and say  All names and other personal identifiers in the case are fictitious. Any similarity to actual persons, living or dead, or actual events is purely coincidental. 1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 U. Hallberg, G. Klingberg, Children with Special Needs, SpringerBriefs in Social Work, https://doi.org/10.1007/978-3-031-28513-4_4

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nasty things, but it is rather as if Adrian does not exist for the other children. Most of the time, Adrian plays by himself or with his assistant. Sometimes Adrian plays ball with his assistant, but the breaks are so short, and Adrian needs a lot of time, for moving slowly because of his motor disability.

School and Education Globally, we can say that it is “the poorest of the poor” who are at increased, or even the greatest, danger to suffer from some form of disability in different ways. This also means that most people with disabilities can be found in this group. Unfortunately, people with disabilities tend to remain in poverty when educational opportunities are severely limited for these vulnerable people (Office for National Statistics 2021). The risk of being born with a disability, or suffer from a disability later in life, is higher among poor people worldwide. This is mainly due to that people living in difficult economic circumstances often are more vulnerable to diseases and riskful environments, and injuries thereof, than people who are wealthier. They also often have less—or no—access to health care and have less access to healthy and nutritious food (Solarsh and Hofman 2006). Although knowledge is limited in terms of the educational situation of children and young people with disabilities around the world, we know for certain that the opportunities are very scarce. Children with disabilities have far fewer opportunities to education as compared to children and young people without disabilities. We also know that even if people with disabilities initially attended school, they run a higher risk of later being excluded from higher education and/or professional work than their peers without disabilities. This is, according to research, part of the reason for that people with disabilities often remain poor throughout their lives (Bines and Lei 2011). Although there is a great need for more and deeper knowledge of the educational situation, and the shortcomings and problems thereof, for children and young people with disabilities in the world, there is unfortunately relatively limited research in the area. It is well known that access to education has many positive effects throughout life; for example, it affects the chances of getting a job to support oneself as an adult. If people have access to paid work, it is of course a way to increase revenue and hence increase the standard of living and quality of life. This in turn increases the potential for a healthier life, and therefore a greater subjective sense of well-­ being. Opportunities to go to school, have access to peer relationships, participate in social activities, and get support from the professional groups who work in school are, and should remain, a big part of life in childhood and adolescence, regardless of where in the world you live and whether you have a disability or not. Today, many countries in the Western world are working to as far as possible include children and youth with disabilities in schools and classes with children and young people without disabilities. However, this means that the school and school system basically are not specifically adapted for children with disabilities. The focus is rather an expression of a more general policy goal, which is to include

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everyone in society, regardless of disability. It can, according to research, be seen as a contrast to excluding people from certain arenas, depending on how one classifies their physical assets and abilities, social status, and/or social affiliations (Dye 2002). There is an ongoing debate in the scientific community worldwide about the pros and cons of including children with disabilities in a school system that is basically meant for children without disabilities (Cologon 2020). No clear evidence is yet available for which alternative—inclusion or segregation—is more “right” or safe than the other. It is however completely agreed that unless the child’s individual needs can be met in the school system by all parties involved, it is not a meaningful inclusion of children with disabilities (Berry and Dawkins 2004). It is perfectly understandable that if you include medically “fragile” children and young people in schools that are not always adapted to these children’s needs, many challenges arise for the children and their families (Rehm and Rohn 2002). These challenges not only concern the children and young people themselves and their families but also classmates, school personnel, social services, and health care. To successfully manage to include children and youth with disabilities in schools and classes intended primarily for children without disabilities requires a great knowledge and understanding of each child’s disabilities and needs and an open dialogue between all parties involved. It also requires careful planning and follow-ups with parents and child, school, social, and health authorities so that all are both fully aware of and familiar with the children’s individual needs and to give all parties the opportunity to meet these needs as far as possible (Asprey and Nash 2006). The challenge of a successful inclusion is not only to physically include the child in the school environment but also to ensure that the child becomes a natural part of the school environment and thus an active part in the social interactions that take place in this environment. Most children with disabilities who are included in schools and classes for children without disabilities need additional staff or assistants, to meet their individual needs . A major responsibility of the extra staff or assistants is to both see and respond to the child’s individual needs but also to be the child’s personal support. They are also expected to contribute to the inclusion of the child running as smoothly as possible, even when it comes to being involved in the social environment that the school means and offers. To cope with this task requires knowledge on both child’s special needs and of children’s overall development and general needs. Inclusion of children with disabilities in schools intended primarily for children without disabilities also includes the hope of that the child will develop social relationships with other children. To provide children with disabilities the opportunity to also develop social relationships with peers requires, according to research, that additional staff or assistants are sensitive to when the child needs extra support and when they, as extra support, and staff, need to “step back” to let the child develop relationships on its own. All this means that additional staff and assistants for children with disabilities plays a key role in the successful inclusion of children with disabilities in schools and classes intended primarily for children without disabilities. It also means that it is imperative that additional staff and assistants have adequate knowledge on both child’s individual needs and abilities and on children’s overall development and needs to be able to work in a favorable way. Auxiliary staff

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and assistants should have access to ongoing supervision and training to better cope with the challenges their work involves. An additional challenge when it comes to the successful inclusion of children with disabilities is, according to another study, being aware that children often find it difficult to keep pace with their classmates when it comes to schoolwork and studies (Wolfson et  al. 2007). This is partly because children with disabilities are often absent from school for long periods of time, or for many short periods, due to diseases and other health-related issues. It may also depend on individual limitations due to the disability of the individual child or lack of motivation. It can be difficult to fully help the children to “take back” the lost time at school with some form of support in a way that best suits the individual child (Berry and Dawkins 2004). These difficulties may include a shortage of available teaching staff but also a lack of time. This can lead to children with disabilities performing worse than their peers when it comes to schoolwork and studies, which in turn can affect the child’s self-esteem in a negative direction. The hopes for benefits of including children with disabilities in schools and classes with children without disabilities also include the positive effects on the social interaction between schoolmates, which can evolve both in the short and longer term. Another benefit that is hoped for is the positive impact of making children with disabilities visible on a societal level early in life. According to research, this leads to social attitudes toward people with disabilities becoming more positive in the long term (Koster et al. 2009). Research shows that the opportunity to grow up and be a part of society and be part of a social community with other peers is the main reason that parents of children with disabilities choose to let their children go to a “regular” school, despite the additional barriers that may exist for a successful inclusion (Kolb and Hanley-Maxwell 2003). Even though the inclusion of a child with disabilities might work well in practical terms, this may not necessarily mean that the child is also included socially and/ or even is accepted by schoolmates. Research has shown that one often sees that peers have a neutral attitude toward children with disabilities, which does not mean that they have a negative attitude but that they do not automatically “take in” a child with a disability to their social network (DeBoer et al. 2012). To include children with disabilities in schools for children without disabilities means, at best, to increase acceptance and improve attitudes between the groups, but the interaction between the groups, however, does not deepen automatically. These children without disabilities have much to gain by interacting with children who have some form of disability (Blecker and Boakes 2010). Being a friend to someone and having access to a friend, or many friends, are important roles for all children (Little et al. 2020). Friendship among children occurs in a dynamic relationship that is mutually beneficial and is characterized primarily by common interests, the ability to cooperate, and an equality of the relationship. Friendship does not only mean opportunities for the child to develop socially but also implies a stability, which provides protection for possible future challenges the child will face (Woodyatt and Rodgers 2006). It has been seen in research that children without disabilities generally have more negative attitudes toward children with disabilities than toward children without disabilities, although there is a tendency that girls have fewer negative attitudes than

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boys. If a child knows another child with a disability, the negative attitudes often give way to more positive and accepting attitudes (Rosenbaum et al. 1988). Negative attitudes from other children and social exclusion are considered the major threats to the successful inclusion of children with disabilities in schools for children without disabilities, according to several studies (e.g., McDougall et al. 2004). When you ask children with disabilities what they consider to be the biggest barriers for successful inclusion, and thus satisfaction in the school environment, they point mainly to barriers in the form of negative attitudes from peers (Hogan et al. 2000). Examples of such attitudes, in addition to exclusion, are also offensive comments and behavior from peers but also from adults, in school. Above all, it seems that children with cognitive and behavioral disabilities are most frequently exposed to negative attitudes from surrounding people. We know that children and young people with cognitive disabilities who attend integrated schools often feel that their identity, and consequently, their own self-image, is often disparaged by other people. When an individual experiences that other people do not respect, appreciate, or even think about her/him as a person, then that is a very big threat to the self and self-esteem (Baumeister and Leary 1995). The young people with cognitive disabilities who attend segregated schools, or schools where only children and young people with other or similar disabilities attend, are often protected from negative attitudes in the environment (Todd 2000). The absence of negative attitudes from peers thus helps to protect and strengthen the self-esteem of children and young people with cognitive disabilities in segregated schools. Young people with cognitive disabilities in segregated schools are assumed to have limited insight of their own abilities and limitations, as their classmates have the same type of disability, and thus also the same abilities and limitations. This means that children with disabilities are reflected in their peers, who are also children with disabilities, which obviously gives a different self-image than to reflect in children without disabilities. Of course, the fact is that an individual’s self-image and self-esteem is not only created through the relationships in the school environment but also through relationships in other environments and contexts, as in the family, among friends outside of the school setting and in the immediate area where the child lives and other environments where the child/adolescent is staying (Taylor 2000). How much the child/ adolescent can do and/or can do by him/herself in everyday life obviously affects both his/her self-image and self-esteem. A disability not only affects social interaction but also the child’s potential for learning new things at school, the child’s engagement in school and learning processes, and the child’s own motivation and desire to learn new things. Learning disabilities have been shown to be particularly salient when it comes to children and youth with emotional and/or behavioral disabilities and children who are born extremely preterm (Reid et al. 2004). Both parents and school staff need to be particularly aware that these children need extra support to cope with schoolwork in a satisfactory or acceptable manner. Frequent absence from school is also a problem for many children with disabilities, which further increases the risk of falling behind in school. It has been seen that about 28 percent of children with physical disabilities are absent for more than 11 days per semester, depending on the illness and

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injuries that are directly related to the disability (Taras and Potts-Datema 2005). Obviously, this is a major problem for the child and his/her family but also for the school staff, who must prevent and manage the situation in a satisfactory way for all involved. There are high demands on school staff to both include children with disabilities in schools and to help children develop optimally in relation to their individual circumstances. In this context, parents often report that they feel that the school staff’s views of the child’s needs and circumstances are different from their own perception, as the child’s parents (Miles-Bonart 2002). Teachers without specialist skills who teach children with disabilities appear to be less likely to adapt or modify the role of the teacher in relation to the pupils’ individual needs or how they plan their teaching. Instead, they seem to be more focused on creating a peaceful environment for studying, social relationships, and for the child with disabilities to thrive in class and school. Special teachers seem to be significantly more likely to adapt to the children’s individual circumstances and needs (Leyser 2002). One can say that the teachers without specialist skills are more focused on the psychosocial well-being of children with disabilities, while the special education teachers are more focused on the children to achieve the stated learning objectives. This is especially true in teaching children with neuropsychiatric disorders, such as ADHD or autism spectrum disorders. Overall, one can say that all these positions of the teachers to some extent may adversely affect children’s opportunities to interact and position themselves in relation to their peers. From this, one can also conclude that children with disabilities benefit academically and performance wise to have teachers with specialist skills, which in turn increases the opportunities for increased self-esteem of the individual child and provide greater opportunities for future higher education or job opportunities. Negative attitudes toward children with disabilities who are included in schools for children without disabilities is a frequent risk factor. Research has shown that children with some forms of disability are four times more likely to be victims of bullying than children without disabilities (McArthur and Gaffney 2001). Bullying is, and has been, a phenomenon often studied in schools worldwide, primarily during the last 20 years. There are many different types of bullying among children and adolescents, such as (1) physical bullying, where you hit or kick someone; (2) emotional or psychological bullying, which is exclusion from the community and/or different groups; and (3) verbal bullying where someone is called mean things or spoken to in a demeaning and/or derogatory manner. Boys and girls are exposed to bullying in the same degree, but it seems that boys more often are subjected to physical bullying, while girls more often suffer from psychological bullying (Rigby 2007). Children and adolescents with disabilities appear to be even more frequently exposed to bullying than children without disabilities (Iyanda 2022). Especially children with disabilities who attend integrated schools and classes are exposed to bullying (McArthur and Gaffney 2001). The magnitude of the emotional consequences of having been subjected to bullying depends on how frequent and severe bullying is perceived to be by the victim but also on how the victim handles the bullying situation and its consequences. Being a victim of bullying in childhood can have very serious consequences, both right away when it occurs and later in life.

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These indirect consequences of bullying can manifest in repeated episodes of anxiety and depression and a lowered self-esteem (Sanders 2004). Another consequence of being exposed to bullying is social isolation. In research, social isolation has been shown to mean not only to be excluded from previous groups but also to be completely ignored and made invisible by peers (Dixon 2006). Reducing the incidence of bullying in schools, and thus reducing the suffering of the affected children, requires for adults in school to see what happens and act forcefully and immediately against bullying. Bullying is a serious problem with significant negative impact on the person being bullied both in the short and long term. It is important that each school has updated anti-bullying programs, even if we have not been able to prove that any program would be more effective than any other (Bourke and Burgman 2010). It has been shown that certain strategies are important in efforts to reduce bullying among students. These strategies include (1) working actively with anti-­ bullying programs since the start of school, when children are young and continuing to do so, and (2) engaging dedicated teachers to constantly stay updated and ensure that bullying programs are followed at all levels in the school setting (Bourke and Burgman 2010).

Recreation for Children with Disabilities Relatively limited research has been published concerning leisure activities for children and adolescents with various types of disabilities. The research that is available shows that children with disabilities often lack, or are entirely excluded from, relationships with peers without disabilities and that they in much lower extent participate in organized leisure activities than children without disabilities (Wilson and Clayton 2010). The only exception to this is children with neuropsychiatric disorders who participate in organized recreational activities to about the same extent as children without disabilities. Continued research will need to focus much more on how individuals, institutions, and the wider community can work to include children with different types and degrees of disabilities and thereby make all children and parents more involved in the community. Although we often use the term “participation” in both speech and writing, the meaning of the concept is only vaguely defined. Participation can be described as feeling like a part of a larger entity or that you can take part in something together with another person or group of people. This in combination with an individual perceiving oneself to be part of a group, that is, to feel included, in control of, and able to influence what is happening. Research shows that participation in the form of initiation and maintenance of peer relationships, and to play and socialize in groups with other children, are important elements in the development of the social, intellectual, emotional, and physical abilities of all children, whether they have a disability or not (Stagnetti 2004). Children with disabilities often lack the opportunities of children without disabilities when it comes to initiating and maintaining peer relationships and thus to have opportunities to play with peers. This is partly because of the frequent negative attitudes from

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the surroundings toward people with disabilities. The problem may also have originated from the lack of linguistic expression and movement abilities of children with disabilities and the children needing technical aids that might “obstruct” playing. According to several studies, children with various forms of serious long-term illness and children with cognitive disabilities are the ones who experience significantly more social isolation and loneliness than other children (Tamm and Skär 2000). Children with disabilities mostly play in solitude or with adults. Even in the few situations where children with disabilities are playing with peers, it is often required that an adult is in the picture to assist by in various ways helping, supporting, and enabling the game. This can be perceived as impeding the spontaneity, the joy, and the satisfaction of the game. A game that cannot be spontaneous, in turn, is impeding the full potential for development that the game could have meant for the children involved (Pollock et al. 1997). However, this does not also count for small children, where playing with one or both parents instead promote attachment and intimacy between child and parent and lays the foundation for the child later to develop peer relationships (Guralnick and Neville 1997). Children with physical disabilities, who are dependent on technological means to live a “normal” life, often experience the technological aids as an extension of themselves. But these aids can also be perceived as an obstacle when it comes to the ability to play spontaneously with other children. Even as very small children with physical disabilities are hindered by their physical limitations in their curiosity to spontaneously discover their environment. Studies show that this poses a risk for these children not able to develop their full potential in terms of spatial ability. Scientists believe that interventions which allows for small children with physical disabilities to explore their world could increase these children’s spatial ability and well-being (Skar 2002). Researchers also believe that interventions to help children with all types of disabilities to play with other children would probably mean big profits for the child seen in a life perspective (Kolehmainen et al. 2001). Regarding children with disabilities, it is considered a great advantage when the child attends school as it means increased opportunities for the child to initiate and/or have peer relationships. As stated earlier, to go to school, especially in integrated schools, means a risk for children with disabilities to be teased and/or stared at by other children. They may also be subjected to bullying or even become socially isolated and ostracized. Consequences of being ostracized, bullied, and not accepted by the schoolmates for all children, whether they have disabilities or not, according to research pose an increased risk for social isolation, school failure, crime, mental illness, and even suicide (Parker and Asher 1987). Among the risk factors for adolescents without disabilities are smoking and alcohol consumption. These risk factors have been shown to be negligible in the case of adolescents with disabilities. It has instead been shown that children with disabilities are less active than children without disabilities, which could pave the way for an increased risk of unwanted overweight and an increased risk of future ill health due to these habits. The main risk factors for adolescents with disabilities, as stated by research, are physical inactivity and also poor diet and obesity (Robertson et al. 2000). Physical inactivity and obesity are major global public health problems that

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can lead to serious illness and premature death in the population. People who are physically active experience improved physical functioning and higher levels of optimism and get more opportunities to develop relationships with other people (Wilhite and Shank 2009). Although awareness and interest have increased in the last 10  years in terms of the importance of physical activity and the problem of obesity in children with disabilities, there are still relatively few studies in this area. The studies that do exist unanimously point toward children with disabilities being more physically inactive, more tired, and having more overweight than children who are not suffering from any disability. It has also been shown that children with cognitive disabilities are at most risk for inactivity, fatigue, and obesity. Although organized physical group activities have been shown to lead to increased self-­ esteem, increased physical ability, and increased social skills, children with disabilities are significantly less involved in these activities than children without disabilities (Wilson and Clayton 2010). The consequences are increased risk for secondary illnesses, such as cardiovascular disease, hypertension, and diabetes. Participating in organized group activities can improve exercise capacity and provide longer-lasting positive effects in comparison with physical activity in one’s own home (Fragala-­ Pinkham et al. 2005). The reasons why children with disabilities are participating in organized physical group activities in much lower degree are probably complex and are therefore difficult to fully capture. Research finds that the resistance to group activities is large and includes the lack of knowledge about the importance of participating in these activities, fear of meeting something new and unknown, parental negative attitudes toward group activities, group leaders’ negative attitudes to disability, lack of transportation facilities between home and group activity, physical conditions of the premises, insufficient financial means to participate, and group leaders’ lack of knowledge, skills, and understanding (Shields et  al. 2012). The school has an important role to play by offering scheduled physical activity for all children, whether they have disabilities or not.

Relief, Support, and Assistance It is well documented that parents of children with disabilities live under high pressure. Children and parents are often involved in complex medical procedures and issues, have constant negotiations with various parties to make sure that the child and family’s needs are catered for, are exposed to repeated hospitalizations, undergo many investigations, and suffer medical crises and financial worries. It is often difficult, or even impossible, for both parents to have full-time work outside the home. If both for different reasons choose to work outside the home, full- or part-time, the need for support and help rises significantly. Help with “relief” for the child is the most common form of social support for parents of children with disabilities. Despite this, studies investigating various aspects of this relief, and its effects on family life, are scarce. The few studies available are also mostly based on relatively small study groups. It has been shown that relief for the family has a positive impact

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in terms of reduced stress and fatigue in parents as well as increased ability to cope with the demanding parental responsibility (Chan and Sigafoss 2001). It has also been seen that the positive effects are significant for the siblings, who by the relief can have the undivided attention from their parents. Even for children with disabilities themselves, relief has positive effects by allowing them to free themselves from their dependence on parents as well as develop relationships with people outside the family. The idea is that relief will grant parents the time to engage in their own activities, meet their own needs, and nurture their social contacts. The relief can also be used as an emergency solution for a suddenly upcoming need for help and support in the family. Parents can also use relief, for example, if they feel they need to get away on a holiday on their own or together with any siblings. Relief may also be used in a crisis that has suddenly and unexpectedly arisen, for example, if the regular caregiver is ill and temporarily unable to care for the child in the “usual” way. Temporary relief may also have positive effects for the child with disabilities, including, as mentioned, that the child is given the opportunity to create their own relationships outside the family. Relief can often simply mean that the child is offered a variety of activities outside the home—activities which are, and must be, adapted to the child’s age/ability, preferences, and needs. Relief can thus be constructed in many ways. This can include relief in the home, where a professional caregiver comes to the family home, usually after the child has finished school for the day, and where the caregiver cares for the child in a normal home environment. The advantages of this type of relief are that the child feels secure in the home and that any aids and adaptation of the environment should be optimal in the home. The disadvantages are that this type of relief, having another person in one’s home, may be perceived as intrusive, especially for any siblings. Relief outside the home can either mean that the child may temporarily come to a support family or a more institutional-like setting with staff. This relief can be for one or more days and nights—sometimes up to 7 consecutive days. However, the most common is recurring relief during, for example, one weekend per month. The goal is to tailor the design of the relief so that it will suit each family’s specific wants and needs. Demand for relief has increased significantly in recent years (Hantrais 2004), perhaps mainly due to the increasing number of children who are born with disabilities in families in need of relief. Another reason for the increase may be that more and more families consist of a single parent with limited contact with family and friends. Although relief can have very positive effects for both children and parents, it is unfortunately still not always it works out as well that the family thought or wished (Neufeld et al. 2001). The relief works best when “service” is of high quality and is characterized by high flexibility and a conscious endeavor to meet the family’s needs and desires. Of course, the activities offered during relief should be age appropriate and tailored to the child’s maturity, wishes, and needs (McConkey 2005). Many parents are unfortunately unhappy with how the opportunity of getting relief in the home is communicated and shared. The dissatisfaction usually concerns difficulties in accessing any relief services whatsoever, long waiting and unanswered questions concerning how often they will receive relief service, how to get

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access to this service as well as information about relief as such (Neufeld et  al. 2001). Parents of children with disabilities often want to have the opportunity to influence what staff the child should meet and have a desire for the personnel who will have temporary responsibility for and care for the child to be aware of the child’s individual abilities, limitations, and requests (Brodin and Claesson 1998). Problems may also consist of long distances between the home and relief, which may prevent a continuous contact. In addition, parents may feel compelled to accept the relief service they are offered, even if it is not entirely suited to the child’s/family’s real needs and preferences (Robinson and Stalker 1993). The families who usually must wait the longest for access to relief are families with teenage boys with autism and/or some form of moderate behavioral problems as one of the components of their disabilities (Cramer and Carlin 2008). The ones who are typically offered relief are parents whose children have a more severe type of disability and great need of professional care around the clock. Studies have shown that the families whose children have the most severe forms of behavioral problems have a great opportunity to get access to temporary relief of the home. This also applies to families with girls with communication problems and when the girls are over 5 years old (Treneman et al. 1997).

References Asprey A, Nash T (2006) The importance of awareness and communication for the inclusion of young people with life limiting and life-threatening conditions in mainstream schools and colleges. Br J Spec Educ 33:10–18 Baumeister RF, Leary MR (1995) The need to belong: desire for interpersonal attachments as a function of human motivation. Psychol Bull 117:497–529 Berry T, Dawkins B (2004) Don’t count me out. MENCAP, London Bines H, Lei P (2011) Disability and education: the longest road to inclusion. Int J Educ Dev 31:419–424 Blecker NS, Boakes NJ (2010) Creating a learning environment for all children: are teachers able and willing? Int J Incl Educ 14:435–447 Bourke S, Burgman I (2010) Coping with bullying in Australian schools: how children with disabilities experience support from friends, parents, and teachers. Disabil Soc 25:359–371 Brodin J, Claesson I (1998) The third wheel – to be a respite caregiver by profession. Eur J Spec Needs Educ 13:238–242 Chan JB, Sigafoss J (2001) Does respite care reduce parental stress in families with developmentally disabled children? LTWA 30:253–263 Cologon K (2020) Is inclusive education really for everyone? Family stories of children and young people labelled with “severe and multiple” or “profound disabilities”. Res Pap Educ 37:395–417 Cramer H, Carlin J (2008) Family-based short breaks (respite) for disabled children: results from the fourth national survey. Br J Soc Work 38:1060–1075 DeBoer A, Pijl SJ, Minnaert A (2012) Students’ attitudes towards peers with disabilities: a review of the literature. IJDDE 59:379–392 Dixon R (2006) A framework for managing bullying that involves students who are deaf or hearing impaired. Deaf Educ Int 8:11–32 Dye TR (2002) Understanding public policy. Prentice Hall, Upper Saddle River

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Fragala-Pinkham M, Haley SM, Rabin J, Kharasch VS (2005) A fitness program for children with disabilities. J Am Phys Ther Assoc Phys Ther 85:1182–1200 Guralnick MJ, Neville B (1997) Designing early intervention programs to promote children’s social competence. In: Gulnarick MJ (ed) The effectiveness of early intervention. Paul Brooks Publishing, Baltimore, pp 579–610 Hantrais L (2004) Family policy matters: responding to family change in Europe. The Policy Press, Bristol Hogan A, McLellan A, Bauman A (2000) Health promotion needs of young people with disabilities – a population study. Disabil Rehabil 22:352–357 Iyanda AE (2022) Bullying victimization of children with mental, emotional, and developmental, or behavioral disorders in the United States. JCAT 115:221–233 Kolb S, Hanley-Maxwell C (2003) Critical social skills for adolescents with high incidence disabilities; parental perspectives. Except Child 69:163–179 Kolehmainen N, Francis JJ, Ramsay CR, Owen C, McKee L, Ketelaar M, Rosenbaum P (2001) Participation in physical play and leisure: developing a theory- and evidence-based intervention for children with motor impairments. BMC Pediatr 11:1. http://www.biomedcentral. com/1471-­2431/11/100 Koster M, Nakken H, Pijl S, vanHooten E (2009) Being part of the peer group: a literature study focusing on the social dimension of inclusion in education. Int J Incl Educ 13:117–140 Leyser Y (2002) Choices of instructional practices and efficacy beliefs of Israeli general and special educators: a cross-cultural research initiative. Teach Educ Spec Educ 25:154–167 Little C, deLeeuw RR, Andriana E, Zanuttini J, David E (2020) Perspectives from students with disabilities on friendship and acceptance. IJDDE 69. https://doi.org/10.108 0/1034912X.2020.1837352 McArthur J, Gaffney M (2001) Bullied and teased or just another kid? The social experience of students with disabilities at school. New Zeeland Council for Educational Research, Wellington McConkey R (2005) Fair shares? Supporting families caring for adult persons with intellectual disabilities. J Intellect Disabil Res 49:183–190 McDougall J, DeWit D, King G, Miller L, Killip S (2004) High school-aged youths’ attitudes towards their peers with disabilities: the role of school and student interpersonal factors. Int J Dev Educ 51:287–313 Miles-Bonart S (2002) A look at variables affecting parent satisfaction with IEP meetings. In No child left behind: the vital role of rural schools. 22nd annual national conference proceedings of the American council on rural special education, 7–9 March Neufeld SM, Query B, Drummon JE (2001) Respite care users who have children with chronic conditions: are they getting a break? J Pediatr Nurs 16:234–244 Office for National Statistics (2021) Outcomes for disabled people in the UK: 2021. Office for National Statistics. https://www.ons.gov.uk/peoplepopulationandcommunity/ healthandsocialcare/disability/articles/outcomesfordisabledpeopleintheuk/2021 Parker JG, Asher S (1987) Peer relations and later personal adjustments: are low-accepted children at risk? Psychol Bull 102:357–389 Pollock N, Steward D, Law M, Sahaigan-Whalen S, Harvey S, Toal C (1997) The meaning of play for young people with physical disabilities. Can J Occup Ther 64:25–31 Rehm RS, Rohn JA (2002) Parents’, nurses’ and educators’ perceptions of risks and benefits of school attendance by children who are medically fragile/technology dependent. J Pediatr Nurs 17:345–353 Reid R, Gonzalez JE, Trout A, Epstein MH (2004) A meta-analysis of academic status of students with emotional/behavioral disturbance. J Spec Educ 38:130–143 Rigby K (2007) Ken Rigby. http://www.kenrigby.net Robertson J, Emerson E, Gregory N, Hatton C, Turner S, Kessissoglou S, Hallam A (2000) Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Res Dev Disabil 21:469–486 Robinson C, Stalker K (1993) Patterns of provision in respite care and the children act. Br J Soc Work 23:45–63

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On the Road to Adulthood

Case1 Katarina was born 18  years ago, when her mother was 43. Directly after birth, Katarina was diagnosed with Down syndrome and mild to moderate mental retardation. Katarina was a very welcome and beloved child, even though she was unexpected and unplanned. It was Katarina’s mother who always had responsibility for everything that concerned Katarina and her well-being. Katarina and her family lived very happily together until 5  years ago, when Katarina’s mother suddenly passed away from a malignant breast cancer. Today, Katarina lives with her father, who is 73 years old. Katarina’s two older brothers are in their 40s and live their own lives. One brother lives and works abroad, and the other brother lives 30 miles from Katarina and their father. Katarina and her father live idyllically in the archipelago—it is particularly idyllic in the summer when the island comes alive through all tourists and boaters, but in winter, it is quite lonely and empty, quiet, and barren. Katarina goes to school on the mainland, so she takes the boat every day to the city. She is emotionally very close to her father, but really have no friends that she associates with at her leisure time. She can only hang out with her friends during school hours—afterward it will be too far for them to go to the island after school. Katarina mostly meet her brothers and their families in the summer, when they usually come out to the island for a few weeks of vacation. Katarina has 2 years left in school, and after that, she does not know what will happen. The big problem today is that her father has been so tired lately. There is something wrong with his heart, and he needs to undergo major heart surgery. But the heart surgery involves a long period of convalescence, and her father is so worried about who will take care of Katarina during this time. Her father would like Katarina to stay with one of her brothers, at

 All names and other personal identifiers in the case are fictitious. Any similarity to actual persons, living or dead, or actual events is purely coincidental. 1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 U. Hallberg, G. Klingberg, Children with Special Needs, SpringerBriefs in Social Work, https://doi.org/10.1007/978-3-031-28513-4_5

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least for a while, but the brothers are not interested in this solution. They also think their father needs to find a permanent solution for Katarina and her future life. They believe that their sister is getting big now and that permanent housing must be arranged for her. The brothers have their own families to take care of, and they have jobs that take a lot of time and therefore are unable to take responsibility for their younger sister. Katarina senses the uncertainty, and she also know that her father is tired, fatigued, and anxious. Her father, on his side, is struggling against fatigue, but he knows he needs to get in treatment as soon as possible, but at the same time, he is afraid of what will happen to Katarina in the meantime. She cannot live alone, and he doesn’t know anyone else who can help them. If only they had a friend or relative who could help, he would feel less worried. At the same time, her father understands that the brothers are right—it’s almost time for Katarina to stand on her own feet. But how should this equation be solved?

Transition The crossing from being a child (0–18 years) to entering adulthood is often called a transition. The number of research publications related to the transitions from childhood to adulthood for individuals with disabilities is relatively limited. Happily, it seems, however, as if the number of published articles in the area has increased slightly in recent years. This is positive since adolescence and the time just before entering the adult world is a very vulnerable period in human development. This vulnerability would apply particularly to young people with disabilities, who even before the transition to adulthood belonged to a vulnerable group. Unfortunately, children and young people with cognitive disabilities are clearly underrepresented in the research context of crossings or transitions. The research still available today clearly show that improvements need to be made to facilitate the transition from being a child with a disability to become an adolescent/teen with disabilities. The same applies to the transition from adolescence to adulthood. These transitions need to be facilitated, both for the adolescent him/herself and for his/her family and relatives. In conclusion, one may say that a child with a disability undergoes three crossings or transitions in their lives: 1. The first transition occurs at birth, or when the environment becomes aware that the child has a disability and is given a medical diagnosis. 2. The second transition occurs when the adolescent with disabilities is included in any of the treatment programs offered to people with the type of disability that he/she has. This transition is reached when the child starts school, that is, when the child moves from kindergarten to traditional schooling. 3. The third transition occurs when a child with disabilities (0–18 years) becomes an adult with disabilities. The third and final transition thus occurs when the adolescent reaches 18 years of age, transitioning from child-oriented health and social care to the adult-oriented care in society.

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Medical and technological advances have contributed to the increasing number of children worldwide, with increasingly difficult disabilities or illnesses, being able to survive to reach adulthood. It is estimated that about 85 percent of all children born with disabilities are living into adulthood and experiencing the transition from childhood to adulthood (Scal and Ireland 2005). For young people without disabilities, this transition means to go from living in a dependent position to becoming increasingly independent and autonomous the older he/she gets. This may mean that the adolescent goes from living with their family of origin to living independently in their own homes or with a partner, to go from school to work, to go from being dependent on parents and other adults to be independent and manage to live one’s own, and to go from being single to creating a family. Adolescents with disabilities go through the same crossings or transitions that other adolescents go through. One possible difference may be that the positive “outcome” of the transition often risks being absent and that the “negative” effects of the transition from a child to an adult with disabilities risks to remains. This means that young people with disabilities often remain single, with no possibility of an independent life, neither practical nor economical (Pettersson and Rodby-Bousquet 2021). Rather, it is possible, and not at all unusual, for these people to lose their earlier contacts with school and health care while still living with their parents. It also means that many young people with disabilities unfortunately meet with a rather harsh reality. This may mean a lack of school performance, difficulty getting a job, and a life without the possibility of making one’s own decisions and being autonomous. It is also found that 70 percent of young people with disabilities continue to live in their parental homes even 2 years after receiving their college degree (Seals 2016). A disability should not be allowed to restrict the lives of the adolescents, but unfortunately, we do not know much about how adolescents with disabilities perceive and feel about their quality of life. Studies in this area are often based on the parents’ experiences and statements about how they think their children with disabilities perceive and think about their subjective quality of life. In addition, the perceived quality of life of the adolescent with disabilities is often “measured” in relation to physical, mental, and social skills and the effect the disability may have on these abilities (Pirpiris et al. 2006). Even though there is no evidence suggesting that these selected “areas” or abilities correlate with, or highlight, the subjectively perceived quality of life for adolescents with disabilities, some studies suggest that adolescents with disabilities experience a poorer quality of life than adolescents without disabilities. To understand how adolescents with disabilities perceive their subjective quality of life, it is important to ask the adolescents themselves how they feel about their quality of life, and what would contribute to an improved quality of life. If these questions were asked, surrounding people would have a greater opportunity to adapt the support and assistance to the perceived needs of the adolescent. Hence, the possibility to live as good a life as possible would be significantly increased for adolescents with disabilities (Jemtå et al. 2005). Self-image and self-­ esteem are likely to affect the subjectively perceived quality of life significantly. Research shows that approximately 30 percent of adolescents with disabilities have lower self-esteem than adolescents without disabilities (Manuel et al. 2003). The

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reasons for this are probably the negative attitudes that adolescents with disabilities encounter and the shortcomings they experience in comparison to other adolescents without disabilities. It is very important to be aware of this discrepancy and work actively to strengthen self-image and self-esteem in adolescents with disabilities. This can be done, for example, by making it easier for adolescents with disabilities to be and feel part of the school setting, family, and activities going on in the community, which seems to raise their self-esteem and improve their self-image (Edwards et al. 2003). Children and adolescents with disabilities and their parents/guardians often have long-term contact with health care and medical facilities, schoolteachers, rehabilitation staff, various government agencies, and other key people in the community if the children are under 18. Parents/guardians often feel dependent on these key persons for the knowledge, information, and support to cope with how best to handle their own everyday life with a child or adolescent with disabilities. The transition from being a child with a disability to becoming an adult with a disability, with all which that implies, is an important, critical, and stressful time for both the adolescents themselves and for their families/guardians. The family/guardians need to dare/be able to let go of their adolescent with the confidence that they are well taken care of by new caregivers and that the children/adolescents can live the life they choose and to meet their own goals and desires. The transition means great positive—but unfortunately sometimes negative—changes in the lives of the adolescents concerned and their families/guardians. While it is hoped that the transition will lead to something positive, the transition from childhood to adulthood is often experienced yet another unwanted stress increment for the family (Smart 2004). The transition can sometimes even be a traumatic experience for all involved. Parents may experience uncertainty about what kind of life their son/daughter with disabilities can/want to live and what he/she is facing in the transition to adulthood (Seals 2016). Parents are also concerned about how they can best contribute to the transition to adulthood being as gentle and positive as possible for their adolescents with disabilities (Lotstein et al. 2005). The overall objective for the transition from childhood to adulthood is that it should be as smooth as possible for both the child/ adolescent and family/guardians. Many families feel in retrospect that the final solution was good, or in any case acceptable, but that the path in many cases was difficult and demanding. Questions of accommodation can often be difficult to resolve in a satisfactory manner because it depends on how extensive the care/nursing needs of the adolescent are. In fact, there are relatively few institutions in society that can provide 24-h care for adults with severe disabilities. This leads to many parents of children with disabilities feeling that the responsibility for their adult children to find their place in society rests entirely on them as parents. Meanwhile, parents experience that they lack adequate tools, sufficient knowledge, and ability to provide support in terms of being able to best help their adult children with disabilities to independence (Stewart et al. 2001). Differences have been found in the way the adolescents themselves and the parents experience the result of the transition. There are also differences in how adolescents with different degrees of severity of their disabilities experience the transition from childhood to adulthood. Young people

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with more severe forms of disabilities, who need care, often feel better cared for during the transition and find themselves feeling more at home in adulthood than adolescents with less severe forms of disabilities and limited care/nursing needs. This means that adolescents with milder forms of disabilities, and thus limited care needs, are more likely to feel lost, anxious, and less cared for after the transition to adulthood. This may be attributed to the fact that the adolescents who have extensive care/nursing needs must necessarily get their needs met, while those who do not have the same degree of care needs often get pushed aside. Factors that may also affect the transition in a positive direction are as follows: 1 . Open, direct, and honest communication between all involved 2. Personalization, meaning that the young person’s individual wishes and needs are met 3. Bountiful information—continuous and open dialogues 4. Conversation and dialogue with other people who have been in the same situation 5. Focused on a problem-solving and open discussion climate Parents/guardians are those who know the child/adolescent with disabilities best and who also know the strengths and weaknesses of the child/adolescent. Parents/ guardians are also often well-informed about the child’s needs and desires—this is particularly true when it comes to how great the need for care/nurture is and how the child with disabilities is best treated. Despite this, parental knowledge, benevolence, and importance are often overlooked on the grounds that the adolescents are now legally of age, and therefore parents should not have insight to the adolescent’s daily life. In other words, the autonomy of the adolescent with disabilities is prioritized prior to the importance of parents’ experiences (Avieli et al. 2022). Parents should be regarded as the child’s/adolescent’s partners and their experience, knowledge, and benevolence should be taken into consideration, as well as the importance of the parents for the adolescent’s safety and wellbeing. To best provide support for their children during the transition from childhood to adulthood, parents should increasingly include the adolescent in issues and activities related to the family, to gradually give the child/adolescent more responsibility for the family’s well-being and to include the child/adolescent in issues related to their own and the family’s life and situation.

Inclusion, Exclusion, and Risk Behaviors Research on how children without disabilities of various ages and from different parts of the world create and maintain relationships with other children is extensive. However, research on children with disabilities in these major areas is very scarce. In the Western world, the aim is that children with disabilities should be included in kindergartens and schools for children without disabilities to give children opportunities to learn about and develop friendships with each other. Another intention is that by attending kindergartens and schools with children with various disabilities,

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children without disabilities will understand that all children are different and that all children have the same value regardless of disability. It is said that friendship between people is the essence of life and a necessary factor to have a happy and harmonious upbringing. When a young person reaches adolescence, relationships with friends usually become even more significant, deep, and intimate than in childhood. To have friends and a support network is a key element in the transition from childhood to adulthood (Zaff et al. 2003). This period is characterized by that the individual must adapt to new demands, both from the community and from themselves. The foremost focus during this time is to get an enjoyable job or start a vocational training, to acquire a home of one’s own and create an independent life, and hopefully meet a partner to share life with. In short, adolescence is about going from being dependent on others for one’s survival to living an independent life, alone or with a partner. For children without disabilities, the period between childhood and adulthood might be a difficult time full of new situations and challenges and constantly changing requirements to relate to. For adolescents with disabilities, this period is often even more challenging, as they often undergo deeper identity crises than other adolescents, and additionally, they encounter more barriers than other adolescents (Stavropoulos et al. 2011). During this time, the adolescent needs a lot of support to cope with this phase and its challenges in the best possible way. Parents of adolescents with disabilities also need support on how best to facilitate this challenging phase for their adolescent with disabilities. Both to being an adolescent with a disability and being a parent who supports their child in the transition to adulthood means to face, and having to deal with, the attitudes of society. Research shows that children without disabilities generally have positive attitudes toward children with disabilities. This applies to attitudes toward children with physical disabilities, but it is not always valid when it comes to attitudes to children with cognitive disabilities. As for children with cognitive disabilities, research has found that attitudes are generally less positive (McGregor and Forlin 2005). According to research, one can see that children without disabilities often do not want to sit next to children with cognitive disabilities in the classroom and do not play with them at recess or after school hours. If the children with cognitive disabilities are young, they are relatively unaware of the fact that they have a disability, and thus their self-esteem is relatively unaffected. When children with cognitive disabilities get older, they also become aware that peers are skeptical or do not accept them, and thus their self-esteem drops dramatically (Stavropoulos et al. 2011). This means that children with cognitive disabilities generally have fewer friends than children without disabilities and that they often play alone or with adults. Playing alone, or alone in a group of other children, can create feelings of frustration, alienation, and isolation. This in turn can lead to the child withdrawing more and more and in the long term; it can also lead to apathy (Dixon 2006). Playing with an adult often means an asymmetrical relationship in which the adults are both helpful and supportive but can also be overprotective and dominant in the relationship (Tamm and Skär 2000). Playing with adults can also mean that the process of emancipation, and thus the sense of independence and autonomy, is prevented or at least greatly delayed. This has especially been seen in girls with disabilities. This overprotective

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behavior is often a pure instinct of parents to protect their children with disabilities from a sometimes cruel and unsympathetic world. However, this overprotection of the child with a disability is at the expense of the child’s emancipation and autonomy. As previously mentioned, the risk of being teased, or even bullied, increases considerably if you have a disability. This is one reason for the parents having a healthy and well-intentioned desire to protect their children from the experience of being bullied. Despite this, it is important to make parents of children with disabilities aware of the risks of being overprotective. Having a disability does not only mean an increased risk of being teased and/or bullied. Children who have disabilities where a socially challenging behavior is included are at risk of exposing other children to bullying. By being overprotective and having their children close to them, parents can also minimize the risk of other children being subjected to bullying. Parents may experience a need to protect their children because children and adolescents with disabilities generally have lower self-esteem than other children, which partly may be because they compare themselves with other children without disabilities but also because they often live socially isolated and are not involved in the social life on equal terms with others. Participation, that is, to be included or involved in a context or to be a person who is part of a group, is an important experience for improving self-esteem and quality of life. Of course, the feeling of being involved is just as important for adolescents with disabilities as for all other people, perhaps even more important. The most common contexts in which adolescents feel involved are with family and friends, at school, and when they engage in recreational activities of various kinds, at home, or organized in groups with others (Majnemer et al. 2010). We know that the feeling of being involved leads to several positive physical and mental effects (Zaff et  al. 2003). Among other things, people feel more competent, which leads both to increased self-esteem and new opportunities to further develop skills and abilities, which in turn leads to a further improvement of self-esteem. Being active also means experiencing life satisfaction and psychological well-being (Engel-Yeger et al. 2009). Despite this knowledge, it is well known that lack of participation is common for adolescents with disabilities. This is partly due to adolescents with disabilities not having contact with friends in the same extent as adolescents without disabilities and that they do not have the same access to organized recreational activities as other adolescents (Livingston et al. 2011). Organized recreational activities provide people with opportunities to develop friendships and establish new peer relationships. It also provides opportunities to further develop skills and abilities and, additionally, chances to get out and to move, preventing overweight and obesity, which is a common problem among adolescents with disabilities. Overweight and obesity in adolescents, whether they have disabilities or not, is a serious problem that can have both health and social consequences far into adulthood (Foxhall 2006). Problems with overweight and obesity are more common in adolescents with disabilities than in adolescents without disabilities (Wilson and Clayton 2010), although the health consequences differ between the groups. The health consequences of overweight and obesity among adolescents with disabilities are, in addition to cardiovascular disease, hypertension and diabetes and that the

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adolescents are at risk of developing secondary illnesses related to the disability. These secondary diseases include difficulties in mobility, fatigue, pain, pressure ulcers, depression, and social isolation (Liou et al. 2005). Overweight and obesity in adolescents with disabilities may also prevent or delay their independence and autonomy, and further limit the opportunities for work and participation in organized recreational activities of various kinds (Simeonson et al. 2002). Even though adolescents with disabilities generally enter puberty later than their peers, and live under greater social isolation, sexuality has the same value and importance for them as for adolescents without disabilities (DeWit et  al. 2021). Sexuality is an important aspect of everyone’s life and affects people’s sense of self-­ worth, body image, and ability to trust in other people (Sultan Sheriff 2022). Sexuality is therefore not just a physical act but also has emotional and psychological dimensions, like giving and receiving confirmation and intimacy; feeling attractive, loved, and desirable; and sharing one’s innermost with another human being. Sexuality is also about knowledge, values, and attitudes. For people with disabilities, sexuality is often much more complicated than for people without disabilities and means barriers of various kinds. The biggest barriers for adolescents with disabilities to have the opportunity to express their sexuality are both environmental factors, such as social attitudes, but there are also barriers within themselves. One of the perceived barriers consist of their own concerns about whether they are attractive enough or not (Jemtå et al. 2008). Another barrier is that adolescents with disabilities find it difficult to participate in social activities with peers in a natural way. This is obviously an obstacle for opportunities to make new contacts, which could ultimately lead to deeper feelings or develop into something more than friendship. Moreover, many adolescents depend on their parents’ care, practical help, and supervision, which further complicates or minimizes potential contact with other people. These barriers, which may prevent contact with the opposite sex, may thus be the cause of people with disabilities often being regarded as asexual. Another barrier is that people without disabilities often find it difficult to consider entering a sexual relationship or marry a person with some form of disability (DeLoach 1994). Although adolescents with disabilities are more socially isolated than other adolescents, and often have a later onset of puberty, they are generally as sexually experienced as their peers without disabilities. This particularly applies to adolescents with cognitive disabilities (Servais et al. 2002). This fact is perhaps surprising and is often overlooked by adults in the adolescent’s environment. Regarding research on young people with physical disabilities and their sexuality, the results of the studies differ. Some studies find no difference in terms of sexual experience among adolescents with physical disabilities and adolescents without disabilities (Suris et al. 1996). Other studies, although a few years old, show that only a third of all adolescents with physical disabilities between 13 and 16 years old have ever been on a “date” (Stevens et al. 1996). Recent studies show that about half of all adolescents with disabilities have had previous relationships (Jemtå et al. 2008). This suggests that people with disabilities are becoming more sexually active. Of course, there is a risk for adolescents to be sexually exploited by other people, or spontaneously indulge in some form of “sexual risk behavior.” This especially applies to girls with cognitive disabilities (Servais et al. 2002). There is a risk

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that the environment does not believe that adolescents with disabilities are subjected to “sexual risk behavior” to the same extent as their peers without disabilities. Parents of adolescents with disabilities often refrain from conversations about sexuality, STDs, and contraception, because they have the perception that these issues are not relevant to their adolescent right now (Foley and Dudzinski 1995). Therefore, parents often feel completely unprepared if their daughter or son with disabilities would get pregnant or become a father. It has been shown that it is mainly young girls with disabilities who need to be protected from being sexually abused by boys/ men (Mitra and Mouradfian 2013). Sexually active girls with disabilities often have more sexual partners and more unprotected intercourse than girls without disabilities. Girls with disabilities also feel psychologically worse than other girls after they have been sexually abused (Mitra and Mouradfian 2013). This could possibly be because they have a more difficult time understanding what really happened and why it happened to them. Children and adolescents with disabilities have long been considered vulnerable and at greater risk than other children and adolescents. This also applies to risks of suffering from sexual harassment or abuse from people in their surroundings. Although all children and adolescents are at a risk of being subjected to sexual abuse of any kind, children and adolescents with disabilities are more exposed to these risks. It is estimated that about 25 percent of all children and adolescents with disabilities have been exposed to some form of sexual assault (Kempton 1998). Because of the prevalence of sexual abuse, children with disabilities should be informed of the existence of these violent crimes. This of course applies both to how to protect oneself and how to act in an abuse situation, or immediately after. In addition, people in the child’s/adolescent’s environment should obtain information about the risks of sexual assault, how to protect children/adolescents from sexual violence, and how to prevent these crimes. Other risk behavior that has proven to be relevant for some adolescents with disabilities is smoking, alcohol use, and in some cases, the use of drugs. Smoking and excessive alcohol consumption are defined as the two greatest threats to health (WHO 2020). The very limited research available about smoking adolescents with disabilities shows that adolescents with more severe forms of cognitive disabilities smoke less than others (Whitaker and Hughes 2003), whereas adolescents with milder forms of cognitive disabilities smoke more. This applies mainly to boys with milder forms of cognitive disabilities (Robertson et al. 2000). The problem of alcohol consumption among adolescents with disabilities has attracted a more limited interest in research than smoking. Research shows that adolescents with cognitive disabilities are drinking alcohol to a lesser extent than other adolescents (Robertson et al. 2000). Other studies argue that there is no difference in alcohol use among adolescents with and without disabilities, while on the other hand it is more common with drug abuse in adolescents with disabilities (Maag et al. 1994). One can assume that adolescents with disabilities are more vulnerable to risk behaviors of different types than adolescents without disabilities, while they are less informed and protected than other adolescents. The explanation for this may well be that they do not fully understand the consequences of their risky behavior and partly that surrounding adults are not aware of that adolescents with disabilities are at risk for riskful behavior and thus do not take any protective measures. It also means that

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health promotion programs that are implemented, among other things, to encourage adolescents to live a healthier life with as few health risks as possible, should be adapted especially for adolescents with disabilities (Steele et al. 2004).

References Avieli H, Band-Winterstein T, Zamir A (2022) Juggling between caregiving and self-actualization: older parents’ lifelong experience of caring for an adult child with developmental disabilities. PLoS One 17(11):e0276779. https://doi.org/10.1371/journal.pone.0276779 DeLoach CP (1994) Attitudes towards disability: impact on sexual development and forging of intimate relationships. JARC 25:18–25 DeWit W, van Oorsouw WMWJ, Embregts PJCM (2021) Attitudes towards sexuality and related caregiver support of people with intellectual disabilities: a systematic review on the perspectives of people with intellectual disabilities. JARID 35:75–87 Dixon R (2006) A framework for managing bullying that involves students who are deaf or hearing impaired. Deaf Educ Int 8:11–32 Edwards TC, Patrick DL, Topolski TD (2003) Quality of life of adolescents with perceived disabilities. J Pediatr Psychol 28:233–241 Engel-Yeger B, Jarus T, Anaby D, Law M (2009) Differences in patterns of participation between youths with cerebral palsy and typically developing peers. Am J Occup Ther 63:96–104 Foley RM, Dudzinski M (1995) Human sexuality education: are special educators prepared to meet the educational needs of disabled youths? J Sex Educ Ther 21:182–191 Foxhall K (2006) Beginning to begin: reports from the battle on obesity. Am J Public Health 96:2106–2112 Jemtå L, Dahl M, Fugl-Meyer KS, Stensman R (2005) Well-being among children and adolescents with mobility impairment in relation to demographic data and disability characteristics. Acta Pediatr 94:616–623 Jemtå L, Fugl-Meyer KS, Öberg K (2008) On intimacy, sexual activities and exposure to sexual abuse among children and adolescents with mobility impairments. Acta Pediatr 97:641–646 Kempton W (1998) Socialization and sexuality: a comprehensive training guide for professionals helping people with disabilities that hinder learning. Peachtree City GA: McGowan Publications Liou TH, Pi-Sunyer FX, Laferrere B (2005) Physical disability and obesity. Nutr Rev 63:321–331 Livingston MH, Stewart D, Rosenbaum PL, Russell DJ (2011) Exploring issues of participation among adolescents with cerebral palsy: what’s important to them? Phys Occup Ther Pediatr 31:275–287 Lotstein D, McPherson M, Strickland B, Newacheck P (2005) Transition planning for youth with special health care needs: results from the national survey of children with special health care needs. Pediatrics 115:1562–1568 Maag JW, Irvin DM, Reid R, Vasa SF (1994) Prevalence and predictors of substance use: a comparison between adolescents with and without learning disabilities. J Learn Disabil 27:223–234 Majnemer A, Shikako-Thomas K, Chokron N, Law M, Shevell M, Chilingaryan G (2010) Leisure activity preferences for 6- to 12- year-old children with cerebral palsy. DMCN 52:167–173 Manuel JC, Balkrishnan R, Camacho F, Smoth BP, Koman LA (2003) Factors associated with self-­ esteem in pre-adolescents and adolescents with cerebral palsy. J Adolesc Health 32:456–458 McGregor S, Forlin C (2005) Attitude of students towards peers with disabilities: relocating students from and Education Support Centre to an inclusive middle school setting. Int J Whole Sch 1:18–30 Mitra M, Mouradfian V (2013) Dating violence and associated health risks among high school students with disabilities. Matern Child Health J 17:1088–1094

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Pettersson K, Rodby-Bousquet E (2021) Living conditions and social outcomes in adults with cerebral palsy. Front Neurol 21. https://doi.org/10.3389/fneur.2021.749389 Pirpiris M, Gates PE, McCarty JJ (2006) Function and well-being in ambulatory children with cerebral palsy. J Pediatr Orthop 26:119–124 Robertson J, Emerson E, Gregory N, Hatton C, Turner S, Kessissoglou S, Hallam A (2000) Lifestyle related risk factors for poor health in residential settings for people with intellectual disabilities. Res Dev Disabil 21:469–486 Scal P, Ireland M (2005) Addressing transition to adult health care for adolescents with special health care needs. Pediatrics 115:1607–1612 Seals E (2016) Life disparities for adults living with disabilities and their families. https://www. disabled-­world.com/disability/life-­disparities.php Servais L, Jacques D, Leach R et al (2002) Contraception of women with intellectual disabilities: prevalence and determinants. J Intellect Disabil Res 46:108–119 Simeonson RJ, McMillen J, Huntington GS (2002) Secondary conditions in children with disabilities: spina bifida as an example. Dev Disabil Res Rev 8:198–205 Smart M (2004) Transition planning and the needs of young people and their carers: the alumni project. British Journal of Special Education 31:128–137 Stavropoulos D, Hallberg U, Mohlin B, Hagberg C (2011) Living with Crouzon syndrome part II: how do young adults with Crouzon syndrome handle their life situation? Int J Paediatr Dent 21:35–42 Steele CA, Kalnins IV, Rossen BE, Biggar DW, Bortolussi JA, Jutai JW (2004) Age related health risk behaviors of adolescents with physical disabilities. Soz Praventivmed 49:132–141 Stevens SE, Steele CA, Jutai JW, Kalnins IV, Bortolussi JA, Biggar WD (1996) Adolescents with physical disabilities: some psychosocial aspects of health. J Adolesc Health 19:157–164 Stewart DA, Law MC, Rosenbaum P, Willms DG (2001) A qualitative study of the transition to adulthood for youth with physical disabilities. Phys Occup Ther Pediatr 21:3–21 Sultan Sheriff D (2022) Human sexuality. In: Stapleton DH, Bossie SV, Hall AL, Lowery LO (eds) Sexuality and disability. Book Metrics, London, United Kingdom Suris JC, Resnick MD, Cassuto N, Blum RW (1996) Sexual behavior of adolescents with chronic disease and disability. J Adolesc Health 19:124–131 Tamm M, Skär L (2000) How I play: roles and relations in the play situations of children with restricted mobility. Scand J Occup Ther 7:174–182 Whitaker S, Hughes M (2003) Prevalence and influences on smoking in people with learning disabilities. Br J Dev Disabil 49:91–97 WHO (2020) The top 10 causes of death. https://www.who.int/news-­room/fact-­sheets/detail/ the-­top-­10-­causes-­of-­death Wilson PE, Clayton GH (2010) Sports and disability. PM&R 1:46–54 Zaff JF, Moore K, Papillo AR, Williams S (2003) Implications of extracurricular activity participation during adolescence on positive outcomes. J Res Adolesc 18:599–630

When Something Happens

Case1 Yvette is 32 years old and lives alone with her two boys, Kevin, soon to be 4, and Liam, 5 years old. Yvette has been unemployed for a year. The previous temporary employment as a cleaner is over, and she should really dedicate herself to seek new a job, but she is just so tired. Tired to the bone. She would probably be able to sleep around the clock if she just could, if only she could be alone. Both Kevin and Liam have been diagnosed with ADHD, and because they have different fathers, it is difficult getting both boys to be with their fathers at the same time. Of course, they go to kindergarten for 15 h a week, and Yvette ought to completely devote that time to seek a new job—she is aware of that. But because she is so tired, she usually falls asleep then. When the boys come home from kindergarten, they are so wound up that Yvette sometimes wonder if it’s worth having them in kindergarten for that brief time. They live crowded in a small apartment, and Yvette is ashamed of that there is really chaos everywhere. On the other hand, there is never anyone who comes to visit. Friends have been prioritized away long ago. The boys are like wild—they are everywhere, destroying everything in their paths, fighting each other, yelling, and screaming. Even the wallpaper is torn down in places. Sometimes Yvette feels that she would like to open the window and just scream “Can someone take care of my children? I must have peace and quiet!” But she does not, of course. No—instead she white knuckles it and continues her eternal hopeless struggle with getting the boys to calm down. Today, Yvette went grand and bought a giant bag of candy for the boys. On the way home from the store, Yvette is thinking about how excited the boys will be and how they would munch on candy for long. The money should have gone to bills instead of candy. But Yvette invests money in candy to

 All names and other personal identifiers in the case are fictitious. Any similarity to actual persons, living or dead, or actual events is purely coincidental. 1

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 U. Hallberg, G. Klingberg, Children with Special Needs, SpringerBriefs in Social Work, https://doi.org/10.1007/978-3-031-28513-4_6

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“buy” some much-needed quiet for half an hour. A video for the boys on top of that, and it might be quiet for a while so she can get some rest. But it’s not like Yvette imagined! The boys are screaming and fighting over who should have the candy dish first. Both keep a firm hold of the bowl. Yvette also takes hold of the bowl, and she screams “Stop! I cannot take it!” But the boys just continue to bicker. Yvette feels the anger growing in her—“What kind of life is this? I cannot! I will not!” She let go of the bowl. Kevin also let’s go, and Liam takes the bowl and throws it in the wall with all his strength. Candy bits mixed with shattered glass is raining down on the floor. Everything goes black. Yvette raises her arm. She hit Liam in the face with all her strength…

Neglect and Abuse According to the UNICEF (2003), neglect and abuse involving children with disabilities is to be fought, and these children should be especially protected against discrimination in all forms. The purpose of this is that society should ensure good living conditions for all children—with or without disabilities. The CRC states that “every child with physical or mental disabilities is entitled to a full and decent life, which makes it possible for the child to participate actively in society.” That all children, with or without disabilities, should have the right to live a dignified life with good care, free from neglect and abuse and with the absolute right to be full members of society, should of course be seen as a more than reasonable goal to work toward. But when you see what the current situation is for many children with disabilities in a global perspective, it is unfortunately a long way to go until the goal is reached. Some 240 million children in the world live with some form of disability (UNICEF 2022), and many of them are experiencing neglect, abuse, and discrimination because of their disabilities. The CRC is basically a powerful tool, striving for all children throughout the world being better off and more secure in their lives. Some examples of goals that are important to meet in caring for these children are presented below: –– A child with a disability is entitled to a full and decent life that enables active participation in society. –– All children have equal rights and equal value. No one shall be discriminated against. –– The child’s best interests must be a primary consideration in all decisions affecting them. –– All children have the right to life, survival, and development. –– Every child has a right to be protected from physical or mental violence, abuse, neglect, or exploitation by parents or other caregivers. The CRC is one of all the regulatory documents governing human rights. Human rights apply throughout the world and are part of International Law and primarily regulate the responsibility of society toward the individual. Human rights apply to

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people of all age groups, which means that all children have the same human rights as all adults. Children are naturally more exposed and vulnerable than adults and therefore need more protection than other groups. One of the basic principles of the UNCRC is that children are individuals with inviolable rights and that they are not the possessions of their parents or other adults. While children are particularly vulnerable and dependent on the care, kindness, and supervision of adults, children are entitled to care, love, and extra protection from us adults. However, many children worldwide are in very vulnerable situations. Often these children are in a position of dependence and are completely at the mercy of the adults in their vicinity. Children of course have less knowledge and life experience than adults when it comes to how one as a minor can expect to be treated by others and what demands children can make concerning their own situation. Moreover, children are physically much shorter and, in every way, “smaller” than adults, and they are often inexperienced, gullible, and easy to manipulate. All this means that a child is an “easy victim” to manipulate and/or subject to any form of neglect, mistreatment, or violent behavior such as physical, psychological, or sexual abuse. Children who are abused, or are victims of neglect or mistreatment any kind, often send many warning signs that can alert other people about their precarious situation. Examples of these warning signs may be poor hygiene, inappropriate clothing for the season, poor dental status, vigilance, and impaired capacity for social interaction and that the child comes hungry to school/kindergarten. Some questions one may ask is how it is possible for adults to subject defenseless children to neglect, abuse, and assault. The existential and emotional conditions of being human have been described by Johan Cullberg (1980) as the experience of having self-esteem, being connected with other people, and having a subjective experience of meaning of life. Becoming parents of a small child can be assumed to be very closely linked to a positive meaning in all these three concepts—self-esteem, belonging, and meaningfulness. Models of young people’s parenting will usually, at least in part, stem from the parents’ families of origin and will include patterns for how to deal with unforeseen events, conflicts, diseases, and other stressful conditions. One can assume that even expectant parents of children without disabilities feel that they are faced with a new and unknown situation that places new demands on them, which can be a stressful situation. To, in addition, have a child with disabilities can be assumed to make parents even more insecure and stressed than parents of children without disabilities, because of the new and chaotic situation that they must somehow be able to handle (Read 2000). We know that every day, many parents around the world are faced with the new and chaotic situation of having a child with disabilities. Globally, it is estimated that there are about 240 million children who are living with some form of disability (UNICEF 2022). We also know that many of these children have a difficult life ahead of them. It’s not just the parents’ increased stress and workload that poses a threat to children’s well-being but also social barriers and shortcomings. Many of these children are being denied their basic rights, often lack access to education and health care, and are not registered/not admitted existing because of shame and humiliation. Children with disabilities in many “rich” countries, on the other hand, often have the right to additional support and assistance. Children can

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get help with everything from technical means to appropriate activities to facilitate their inclusion in the community. Parents can also be helped with facilitating the extra workload and the vulnerable situation, for example, by relief services and extra support. This means that despite the good intentions of the CRC, there are still major inequalities for children with disabilities and their parents worldwide. Although most parents of children with disabilities do their utmost to handle the difficult and challenging situation they are in, despite society’s potential barriers and shortcomings, anomalies such as neglect and abuse of children with disabilities are, globally, one of the major causes of death (UNICEF 2003). We know that families with children with disabilities often end up in different states of crisis (Shore et  al. 2002), which according to the Swedish psychologist Johan Cullberg (1980) can be defined as “a mental condition in which past experiences and learned behavior is not sufficient to understand and mentally master the situation.” Another definition of the concept of crisis was used by the American psychologist Erik Homburger Eriksson (1983) who argued that a crisis is a necessary turning point, a crucial moment, when development must move in one or the other direction by using the possibilities of growing, recovery, and further differentiation. The crisis concept can be applied to many different situations and turning points, for example, in terms of the crisis reaction that often occurs when you have a child with disabilities. People have different ways to respond to and cope with crises, often depending on their personality and patterns formed during adolescence. This means that parents may have different ways of dealing with crises related to the child with disabilities and to their own parenting. Families with children with disabilities typically have a much larger workload, experience higher levels of stress, and are in a more vulnerable position than other families (Verma and Kishore 2009). The burden for the family/parents also increases with the degree of the health-care needs of the child with disabilities, and all taken together, everyday reality can become both overwhelming and stressful (Berge et al. 2006). The daily life of the parents is both unaccustomed to and stressful and often filled with anxiety, sadness, insecurity, and feelings of inadequacy. If time and opportunities for emotional relief is largely absent, the parents will feel fatigued, exhausted, and stressed (Hantrais 2004). Families with children with disabilities may also experience persistent sadness, which sometimes springs to life and usually remains for the rest of these families’ lives (Seligman and Darling 1989). Parents may also feel lost in their parental roles because the child may not guide them or send the “right” signals in the subtle interactions that are going on between parents and children. The child’s signals usually guide the parents to give the correct response, which leads to the parents/symbiosis partners feeling affection and affinity with the small child. A child with a disability may have difficulties in establishing a symbiotic relationship with the parents as well as having just as many difficulties in eventually leaving that symbiosis. Most parents of children with disabilities do their utmost to be able to handle and cope with the difficult and challenging situation in which they find themselves. A good treatment—from professional caregivers and people in the vicinity—that includes knowledge, understanding, continuity, respect, and accessibility is

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obviously important for parents of children with disabilities to enable them better to cope with the challenges they live with (Trulsson and Klingberg 2003). There are some signs that to a responsive environment may imply that a child is not feeling well or is even mistreated. A toddler that does not increase in weight and height at the expected rate, and may also sleep poorly, shows impairments in social interaction, or shows other abnormalities in their development—these signs must be seen as warning signals for the child being mistreated. However, one should also note that children may have one or more of these symptoms without being endangered in any way. Unfortunately, the opposite may also be true: Children can fare ill without showing any outward symptoms toward their surroundings. The meaning or definition of the term “child abuse” is that a child’s psychological development is in jeopardy because of flaws in their parents’ or other guardians’ caring capacity (Broberg et  al. 2003). The definition does apparently not make any difference between children with disabilities and children without disabilities in terms of consequences for children who “fare ill.” According to a study by Fang and his colleagues (2022), however, children with disabilities in the world are far more often exposed to physical and psychological violence, sexual abuse, neglect, and mistreatment than other children. The incidence of neglect and abuse of children seems to differ between different countries in the world and among different neighborhoods, but globally it increased during the COVID-19 pandemic (Tso et al. 2022). Generally, one can say that the risk of children living in underprivileged families being subjected to neglect and physical, psychological, and sexual violence is significantly higher than for children who live in more attractive and affluent areas (Lagerberg and Sundelin 2000). This can be assumed to be due to parents living in socially vulnerable situations already having a high stress load because of their situation. If you, in addition to this, have children with disabilities who require extra care, parental coping capacity might be exceeded to the extent that the child is neglected or even abused. Children who are victims of neglect, mistreatment, and abuse may suffer from abnormalities of development. These deviations can be seen as disturbance of the child’s ability to bond with and to relate to other people (O’Connor et al. 2009). Scientists believe that there is a clear link between flaws in the early care of a child and the severity of attachment disorders that the child develops. Some children have good individual resources and strengths as well as good support from people outside of the family that enables them to cope with the difficult experience without their mental development suffering permanent damage (Broberg et al. 2003). Yet the fact is that most children who are abused or exposed to different types of abuse develop different forms of behavioral and/or contact disorders. Guilt and shame in these children are usually associated with having been the victims of violence or abuse. Although parents and other adults try to reassure the abused child that he/she has no guilt in what happened, it is common that the child continues to feel shame and blame themselves for what has happened (Glaser and Frosh 1988). It is very important that the abused child both gets help and opportunity to process what has happened. If you suspect a child is being abused, the social services in the community should be contacted for further discussion and investigation of the child’s situation. As a notifier, be careful to make an overall

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description of the child’s situation and clearly describe the signals that form the basis of suspicions about possible neglect. The social services are then responsible for a professional, comprehensive, and broad evaluation and consideration of appropriate action to be taken if it is found that the child really is in trouble. Mistreatment, neglect, and abuse is, according to UNICEF (2003), unacceptable, and society must step in and take responsibility to protect the affected child. School and kindergarten staff and medical staff have a major responsibility when it comes to noticing and reporting suspected abuse or neglect of children to the social services. There is a high risk that children with disabilities face negative reactions from other people (Kearney and Griffin 2001). It is partly due to the way they differ from the familiar and what is usually perceived as “normal,” and by their appearance and otherwise requiring more extensive care and attention than other children of the same age. People can unconsciously react negatively when they encounter children with disabilities. Feelings of powerlessness and inadequacy, founded in the experience of not being able to help or have something to offer a child with disabilities or their families, often lies behind these negative reactions. Even the parents of a child with disabilities can experience these emotions—helplessness and inadequacy. A not unusual defense against feelings of powerlessness is that people give more and more to respond to and manage the emotions aroused by the situation. For example, you can see that people who work in health care may be of more and more service and sacrifice their own needs to reduce their feelings of powerlessness over a vulnerable family’s situation. This scenario is not uncommon among parents of children with disabilities who give more and more to try to overcome the powerlessness they feel. This behavior can lead to symptoms of burnout and/or psychosomatic symptoms. Another defense against feelings of powerlessness is to simply ignore the problems and take lightly on the difficulties encountered. Sometimes, desperate parents in vulnerable situations make unrealistic demands on the community for assistance, support, and treatment for their children with disabilities, which may also stem from feelings of powerlessness and self-inadequacy. A good contact with professional caregivers, where the child with a disability is treated as a unique and valuable individual, may be vital for the family to cope with their demanding lives. Informal support and confirmation on an emotional level from family and friends is also extremely important for families with children who have disabilities (Prudhoe and Peters 1995). Children with disabilities are more often exposed than other children to physical and psychological violence, sexual abuse, neglect, and mistreatment (Fang et  al. 2022). These children also have less access to education and health care than other children, especially if one looks at the situation from a global perspective. The exclusion of children with disabilities, especially in many “poor” countries, begins at birth when they, due to shame and stigma, may not be registered, and thus are excluded from societal services and other basic rights. This discrimination is due to the responsible authorities in many countries lacking both knowledge and resources to support children with disabilities, which poses a significant threat to these children’s health and survival. The central problem is really the prejudices and discriminatory norms prevailing in many countries, rather than the disability itself. According

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to a report from UNICEF (2003), children with disabilities in the “rich countries” in the world are also 3–4 times more vulnerable to violence than other children in these countries. In “poor countries” statistics on violence against children with disabilities is missing altogether. UNICEF is working to ensure that all children with disabilities have their rights respected. Neglect of children with disabilities, however, is common in low- and middle-income countries, most often in the cases of children living in institutions because of their parents’ poverty. Schooling for these children, especially for girls, is rarely possible or even conceivable, and children also get significantly less care than they might receive and what they need. UNICEF believes that this discrimination is a form of oppression of children and recommends that governments and local communities work for children with disabilities to be included and participate in society on an equal basis with other children/people. One third of the world’s countries have not signed the United Nations (UN) Convention on the Rights of Persons with Disabilities. Children with disabilities are in general much more likely than other children to be subjected to violence and sexual abuse. Additionally, children with cognitive disabilities are at 4–5 times higher risk of being subjected to sexual violence compared to children without disabilities (Barron et al. 2019). Violence and abuse are usually defined as a physical activity that causes, or is intended to cause, physical injury and/or pain in another person (Straus and Gelles 1986). However, one can object to that the definition does not include an additional important level—namely, verbal and psychological violence, which can cause severe and lasting psychological damage to the individual. Both physical and psychological violence can cause injuries of varying significance—ranging from mild physical and/or psychological damage to very serious injuries that can even result in death (Levey and Lagos 1994). According to several studies, one can generally say that the perpetrator, or the person exerting the physical and/or psychological violence against a child, is often one or more family members, such as parents or close relatives, but can also be a member/member of the multi-professional care team surrounding the child (Verdugo and Bermejo 1997). It has been seen in research that especially parents with low levels of stress tolerance (lower than the average of the population) are at increased risk to either expose the child to physical and/or psychological violence or neglecting the child by failing to provide the care needed or to mistreat the child (Verdugo et al. 1995). Children with disabilities, and especially children who are suffering from cognitive disabilities, are particularly vulnerable to abuse and neglect (Cederborg and Gumpert 2010). This can be explained by these children often lacking the ability to report and communicate what they are exposed to, and therefore, they are also easy to manipulate for a potential perpetrator (Legano et al. 2021). According to research, children with learning disabilities are not only at increased risk for abuse and neglect, but they are also at increased risk of being subjected to neglect over a long period of time (Helton et  al. 2017). Research shows that the increased risk of being subjected to neglect and other types of mistreatments is 2–3 times higher for children with cognitive disabilities than for children without disabilities (Little 2004). Pre-school children, particularly boys, over 4 years of age are at the greatest risk of being subjected to neglect and abuse, as well as children with

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more than one type of disability. Children with multiple disabilities are not only at higher risk of being subjected to neglect but also at higher risk of being subjected to neglect over a long period of time (Sullivan and Knutson 1998). According to research, the increased risk of neglect and other types of abuse that these children with disabilities are exposed to might concern physical violence and sexual abuse and that parents/guardians wholly or partially neglect the child and their needs (Giardino et al. 2003). Several studies note that you can clearly see that physical violence is often related to and/or accompanied by psychological violence and sexual abuse of these vulnerable children with disabilities (Marchetti and McCartney 1990). There is only limited research  data on the incidence/prevalence of these problems, but some scientists claims that only 20 percent of all abuse and mistreatment that affects children with disabilities is reported (Legano et al. 2021). These figures mean that most children with disabilities who are victims of mistreatment in the form of neglect and abuse do not get help, consolation, and vindication, but suffer in solitude. To understand the mechanisms underlying neglect that comes to children with disabilities, it is important to understand the context in which families with children with disabilities find themselves. This may increase the understanding of why extensive mistreatment of children with disabilities takes place at all. Often the causes of neglect of children with disabilities are related to parental cognitive and/ or normative inability to respond to the child’s ever large and demanding care and nurture needs. This inability of the parents, according to several studies, leads to shorter or longer periods of frustration and aggression in parents (Verdugo et  al. 1995). Children with disabilities, in addition to having great care and nurture needs, also often have pronounced behavioral problems, which may be perceived as extremely challenging for parents and other people in the child’s vicinity (Hudsom et al. 2003). In addition, children with disabilities may cause actual physical damage themselves and cause extensive damage to things in their environment (Chadwick et al. 2000). Children with disabilities behaving aggressively and violently toward people around them is not uncommon, according to several studies (Hudsom et al. 2003). To prevent this type of aggressive behavior, there is a need for quick and resolute actions from parents, or from other people in the child’s environment, who can also see the situation as extremely challenging and stressful. According to several studies, this may in turn lead to parents “crossing the line” of what is feasible or acceptable in their reactions and actions toward the child with disabilities (Enosh et al. 2013). Even though this “crossing of borders” can in no way excuse an assault on the child, according to the research, it can serve as an explanation when the unthinkable does happen. Contextual and supporting factors in the parents’ environment, such as the opportunity for relief services, the quality of the marriage/relationship, and family income, have been shown to affect how parents act toward their children with disabilities. Poverty, unemployment, low education, teenage pregnancy, mental illness, and low levels of well-being of the parents are also factors that can affect the child being subjected to neglect. Neglecting one’s children is more common in these groups than in other groups of parents, according to several studies (Tso et al. 2022).

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Many professional health-care providers within the health-care sector feel uncomfortable and afraid to report abuse and are therefore also reluctant to report any suspicion of neglect of children with disabilities, according to published research (Finkelhor 2008). This means that this kind of abuse is underreported. Another reason for underreporting may be that children with disabilities are often very close to their parents and other caregivers who are part of the care team around the child. This extreme closeness is partly due to the child depending on their relatives to manage their daily lives. This extreme closeness and dependence, according to research, makes health-care providers who suspect neglect refrain from reporting their suspicions, as to not destroy the close bonds between the child and his/her primary care providers. To report is therefore regarded as a possible resort only when all other options have been completely exhausted. There are many aspects to, and degrees of, neglect, making it difficult for a child with disabilities to verbalize and communicate what he/she has been through. In addition, there are special, strong, and close ties between parents and other caregivers in the care team around the child, which makes children particularly vulnerable, dependent, and susceptible to care deficiencies not reported (Legano et al. 2021). Research describes the “complex” emotions that children with disabilities can experience in these vulnerable situations as fears combined with guilt and shame and the desire to protect the perpetrator/perpetrators through the strong ties and the interdependence that exists (Glaser and Frosh 1988). These facts are, taken together, a strong motivating factor for the child not to be able or dare to talk about a possible neglect. It has also been seen that there are other reasons that prevent children with disabilities to talk about any mistreatment, which also causes them having little chance to get the help and support of outsiders in their difficult and vulnerable situation. What reduces their ability to communicate their experiences and to get help is that children with disabilities may simply have difficulties “putting things into words” and talk about what they have been through. In addition, surrounding people have less tendency to believe that these stories are true (Cooke 2000). It is quite clear that surrounding people must be vigilant for signs of that “something is wrong” for these vulnerable children with disabilities, without unduly discrediting parents or other people in the child’s care team.

Deaths Grief is a natural part of people’s lives and can manifest itself in many ways. Grief is never so severe as when a child or an adolescent die. If death occurs suddenly, without warning, grief feels especially heavy and difficult when one as a relative have not had time to prepare or even “think of it.” If grieving has begun even before the occurrence of death, such as thoughts on that one in the future may lose a certain person that is important to oneself, as a relative, you are more prepared when death occurs. Although grief never feels so heavy and incomprehensible as when a child dies, as a parent, losing a child in premature death must be one of life’s most

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difficult losses. For parents, it is not only a beloved and longed-for child that no longer exists but also a loss of all the dreams they had for the future with the child. Parents who suffer from such a disaster as their children die a premature death require a considerable amount of support and understanding from the environment to, somehow, get through the grieving process and have the strength to live again (Rando 1986). People may react differently in crisis situations, in part because of personal preferences and the patterns formed during adolescence. Johan Cullberg (1980) argues that there is a natural healing ability in people undergoing mental and/or traumatic crises. He talks about the four phases that describe these reactions in psychological and/or traumatic crises and argues that in mild crises, the phases are not so clearly demarcated from each other and may not even be recognized as distinct phases. At serious crises, healing takes much longer time, and the phases are more clearly defined. Johan Cullberg describes them as the (1) acute shock phase, which lasts up to a few days; (2) reaction phase, as what has happened becomes reality for the affected and defense mechanisms such as denial, regression, and rationalization are deployed to protect the affected; (3) processing phase, in which the affected has to deal with the reality of daily life again; and (4) reorientation phase, which means that what has happened is incorporated in the present and that life begins to go on anew. KÜbler-Ross (1969), who worked with adults before their expected imminent death, in the 1960s, described the phases of grief as a process over time with five distinct phases, which she termed (1) denial and isolation (of emotions); (2) anger, rage, envy, and bitterness; (3) bargaining (with fate, or God); (4) depression with negative thoughts; and finally (5) accepting what has happened. What is also spoken of is “the forbidden grief,” where prospective parents during pregnancy have the image of the desired child or “dream child.” This dream child must be mourned by parents as a lost child if the child is not born as the child they dreamed of, but instead a child with birth defects, a disability, or a serious illness. By parents mourning the “healthy baby dream” that did not come true, grief and mourning may from then on feel like “forbidden ground,” and thus they may feel guilty to mourn at all from then on. The fact that surrounding people may have a difficult time putting up with, and participating in, other people’s grief, reinforces the image of the forbidden grief. This may mean that parents’ grief at having had a child with a disability, or a severe and prolonged illness, never quite passes. This can manifest as parents feeling grief over their child’s lost opportunities to take part in, for example, games and other experiences that to other children are a natural part of growing up and living. Grief can also exist “under the surface” for a long time in the parents, only to “ebb” or stop when the grieving father/mother feels that he/she has regained her will to live and his/her vitality. Although children with disabilities are living longer today, the risk for the child to die prematurely still increases at the same rate as the age of the child increases (Patja 2001). This is partly due to that the disability as such may be fatal and increase the risk of acquiring other medical conditions and/or complications which might worsen the situation and turn it into fatal. This obviously means that parents of children with disabilities are at higher risk of losing their children during childhood or

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early adulthood, compared with parents of children without disabilities. Despite the increased risk of mortality in children with disabilities, there are few scientific studies that closely examine various aspects of death in these children. Parents who lost a child with disabilities often describe people trying to minimize their grief and rationalize the loss by expressing that “it was perhaps to the best what happened” and argue that the parental care burden has decrease by the death of the child. Parents, on their part, rather describe the loss of a child as if they suffered a double loss, by first undergoing a loss when their “dream child” turns out to have some form of disability and receives a diagnosis. Through the knowledge of this diagnosis, and the likely consequences of it, the parents in a way lose their dream of a healthy baby. The other loss is the knowledge that the child they received is likely to die prematurely and when they as parents finally lose their long-awaited child (Woods and Milo 2013). Parents also describe how the death of a child not only has enormous emotional impact but also severe economic penalties for a long time. Families with children with disabilities often have higher costs and lower incomes compared to other families. Childcare costs a lot, and additionally, mothers of children with disabilities less often work professionally, or at least they rarely have a full-time job. The increased costs of the child’s health care in combination with the lower income that the family has during the child’s lifetime is not something that immediately disappears if the child dies. Bad economy is something that follows the family for a long period of time. Any financial welfare and compensation paid while the child with a disability lived ceases immediately after the child’s death (Corden et  al. 2002). Overall, the situation after the death of a child is perceived as very traumatic and difficult for the parents. Families who have lost a child with disabilities are positive to meet other parents who have undergone the same trauma as themselves. Many parents also want to meet and talk with professional caregivers about their painful situation, what really caused the child’s death, and express their own feelings and thoughts about the child’s death. What parents most of all endeavors is that other people should fully understand how deeply they mourn and miss their dead child (Todd 2007). It is quite possible that parents of children with disabilities experience a stronger loss of identity than parents of children without disabilities do if they lose their children in premature death. Parents of children with disabilities often have a “caregiver identity” in a completely different way and on a completely different scale than other parents (Todd and Jones 2003). Mothers describe how the loss of their children was the hardest and most horrible experience they have ever had. This experience includes both first having a child with disabilities, and then to lose this child. Despite this, according to a recently published study, the time that parents had with their, now dead, children with disabilities is an experience that they absolutely would not want to be without (Woods and Milo 2013). There seems to be differences in how mothers and fathers deal with the grief and loss of their deceased children. Fathers often show and speak of a less intense sadness, which also seems to be temporally shorter than the mothers’ grief seems to be. According to a study, fathers often use alcohol to relieve or forget the sadness and longing for their deceased children (Vance et  al. 1995). The same study shows that fathers more often than mothers

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express that some individual or organization must be held accountable for the cause of the child’s death. Mothers, according to another study, rather speak of anger directed toward the dead children because they left them so early by dying (Drenovsky 1994). Fathers seem to be very concerned and frustrated about the intensity and long duration that characterize mothers’ grief. Mothers—on the other hand—feel angry and frustrated that fathers do not fully share their great sorrow. Research has shown that these gender differences when it comes to showing sadness and disappointment over the loss of a children with disabilities can lead to temporary communication problems between parents and affect their relationship negatively. Moreover, the situation can lead to a lack of sexual intimacy, general irritation, and a lack of understanding between the parties (Schwab 1992). Another study showed that fathers who have lost a child, and who are feeling worried and frustrated over their wives’ grief, often keep busy and active in different ways. Mothers handle their grief by openly communicating their grief to others (Kavanough 1997).

References Barron I, Allatdyce S, Young H, Levit R (2019) Exploration of the relationship between severe and complex disabilities and child sexual abuse: a call for relevant research. J Child Sex Abus 28:759. https://doi.org/10.1080/10538712.2019.1645782 Berge JM, Patterson JM, Rueter K (2006) Marital satisfaction and mental health of couples with children with chronic health conditions. Fam Syst Health 24:267–285 Broberg A, Almqvist K, Tjus T (2003) Klinisk barnpsykologi: Utveckling på avvägar. Natur och Kultur, Stockholm Cederborg A-C, Gumpert C (2010) The challenge of assessing credibility when children with intellectual disabilities are alleged victims of abuse. Scand J Disabil Res 12:125–140 Chadwick O, Walker N, Bernard S, Taylor E (2000) Factors effecting the risk of behavior problems in children with severe intellectual disability. J Intellect Disabil Res 44:108–123 Cooke P (2000) Final report on disabled children and abuse. Ann Craft Trust, Nottingham Corden A, Sloper P, Sainsbury R (2002) Financial effects for families after the death of a disabled or chronically ill child: a neglected dimension of bereavement. Child Care Health Dev 28:199–204 Cullberg J (1980) Kris och utveckling. Natur och Kultur, Sverige Drenovsky C (1994) Anger and desire for retribution among bereaved parents. Omega 29:303–312 Enosh G, Duvdevany I, Arzi L (2013) Social workers’ intervention preferences in case of parental violence toward intellectually disabled children. J Aggress 16:439–455 Fang Z, Cerna-Turoff I, Zhang C, Lu M, Lachman JM, Barlow J (2022) Global estimates of violence against children with disabilities: an updated review and meta-analysis. Lancet Child Adolesc Health 6:313–323 Finkelhor D (2008) Childhood victimization violence, crime and abuse in the lives of young people. Oxford University Press, New York Giardino AP, Hudson KM, Marsh J (2003) Providing medical evaluations for possible child maltreatment to children with special health care needs. Child Abuse Negl 27:1179–1186 Glaser D, Frosh S (1988) Child sexual abuse. MacMillan Education, Basingstoke Hantrais L (2004) Family policy matters: responding to family change in Europe. The Policy Press, Bristol Helton JJ, Gochez-Kerr T, Gruber E (2017) Sexual abuse of children with learning disabilities. Child Maltreat 23:157. https://doi.org/10.1177/1077559517733814

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Homburger Eriksson E (1983) Den fullbordade livscykeln. Natur och Kultur, Stockholm Hudsom AM, Matthews JM, Gavidia-Payne ST, Cameron CA, Mildon RL, Radler GA et al (2003) Evaluation of an intervention system for parents of children with intellectual disability and challenging behavior. J Intellect Disabil Res 47:238–249 Kavanough K (1997) Gender difference among parents who experience the death of an infant weighing less than 500 grams at birth. Omega 35:281–296 Kearney PM, Griffin T (2001) Between joy and sorrow: being a parent off a child with developmental disability. Online J Issues Nurs 34:582–592 Kübler-Ross E (1969) On death and dying. Routledge Lagerberg D, Sundelin C (2000) Risk och prognos i socialt arbete med barn: Forskningsmetoder och resultat. Gothia, Göteborg Legano LA, Desh LW, Messner SA, Idzerda S, Flaherty EG, Haney SB et al (2021) Maltreatment of children with disabilities. Pediatrics 147:120. https://publications.aap.org/pediatrics/ article/147/5/e2021050920/180813/Maltreatment-­of-­Children-­With-­Disabilities Levey JC, Lagos VK (1994) Children with disabilities. In: Eron LD, Gentry JH, Schleged P (eds) Reasons to hope: a psychological perspective on violence and youth. American Psychological Association, Washington, DC, pp 197–213 Little L (2004) Victimization of children with disabilities. In: Kendall-Tackett KA (ed) Health consequences of abuse in the family: a clinical guide for evidence-based practice. American Psychological Association, Washington, DC, pp 95–108 Marchetti AG, McCartney JR (1990) Abuse of persons with mental retardation: characteristic of the abuse, the abusers, and the informers. Ment Retard 28:367–371 O’Connor AM, Bennett CL, Stacey D (2009) Decision aids for people facing health treatment or screening decisions. CDSR 3. https://pubmed.ncbi.nlm.nih.gov/19588325/ Patja K (2001) Life expectancy and mortality in intellectual disability. FAMR Publications, Helsinki Prudhoe CM, Peters DL (1995) Social support of parents and grandparents in the neonatal intensive care unit. Pediatr Nurs 21:140–146 Rando TA (1986) Parental loss of a child. Research Press Read J (2000) Disability, the family and society. Listening to mothers. Open University Press, Buckingham/Philadelphia Schwab R (1992) Effects of a child’s death on the marital relationship: a preliminary study. Death Stud 16:141–154 Seligman M, Darling RB (1989) Ordinary families, special children: a system approach to childhood disability. Guilford Press, New York Shore CP, Austin JK, Huster GA, Dunn DW (2002) Identifying risk factors for maternal depression in families of adolescents with epilepsy. JSPN 7:71–80 Straus MA, Gelles RJ (1986) Societal change and change in family violence from 1975 to 1985 as revealed by two national surveys. J Marriage Fam 48:465–479 Sullivan PM, Knutson JF (1998) The association between child maltreatment and disabilities in a hospital-based epidemiological study. Child Abuse Negl 24:1247–1274 Todd S (2007) Silenced grief: living with the death of a child with intellectual disabilities. J Intellect Disabil Res 51:637–648 Todd S, Jones S (2003) “Mums the word!” Maternal accounts of dealing with the professional world. J App Res Intellect Disabil 16:229–245 Trulsson U, Klingberg G (2003) Living with a child with a severe orofacial handicap: experiences from the perspective of parents. EJOS 111:19–25 Tso WWY, Chan K, Lee TMC, Rao N, Lee SL, Jiang F et  al (2022) Mental health and maltreatment risk of children with special educational needs during Covid-19. Child Abuse Negl 130:105457. https://doi.org/10.1016/j.chiabu.2021.105457 UNICEF (2003) A league table of child maltreatment deaths in rich nations. UNICEF Innocenti Research Centre, Florence UNICEF (2022) There are nearly 240 million children with disabilities in the world. https://www. unicef-­irc.org/children-­with-­disabilities

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Index

A Adulthood, 17, 32, 61–70, 83 Aggressive behavior, 80 Anxiety, xi, 17, 23, 25, 33, 35, 37, 47, 53, 76 B Big sister, 62 Bullying, 52–54, 67

L Long-term illness, 16, 17, 36, 37, 54 M Mental health, 20, 23–25, 33 Mistreatment, 75, 77–81 N Negative attitudes, 18, 50–53, 55, 64

C Cause, 2, 5, 10, 15, 17, 21, 22, 31, 68, 76, 79–81, 84 Children with disabilities, 1–4, 7–12, 16–25, 32, 34–41, 47–57, 63–67, 69, 74–84 Community, 10, 40, 49, 50, 52, 53, 64, 66, 76–79 Conflicts, 31, 38, 39, 41, 42, 75 D Death, 5, 11, 47, 55, 76, 79, 81–84 Disability model, 41 E Education, v, 3, 5, 7, 10, 11, 17, 20–23, 41, 48, 52, 75, 78, 80 Exclusion, 7, 33, 51, 52, 78 G Global situation, 16 Grandparents, 39–42

O Orofacial health, xi, 20 P Parents, xii, 1–3, 6, 8–11, 15–25, 32–42, 47, 49–57, 63–69, 74–84 Physical abuse, 75, 77 Prevalence, 6, 11, 69, 80 Psychological abuse, 75, 77 R Recreation, 10, 11, 38, 53–55 S School, 3, 17, 25, 37, 47–56, 61–67, 75, 78 Sexual abuse, 69, 75, 77–80 Sexuality, 68, 69 Siblings, 8, 33, 34, 36–42, 56

© The Author(s), under exclusive license to Springer Nature Switzerland AG 2023 U. Hallberg, G. Klingberg, Children with Special Needs, SpringerBriefs in Social Work, https://doi.org/10.1007/978-3-031-28513-4

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88 Social isolation, 17, 37, 40, 53, 54, 68 Social relationships, 49, 52 Society, v, 1, 3, 5, 7, 9, 18, 20, 24, 49, 50, 62, 64, 66, 74, 76, 78, 79 Stress, 8–12, 17, 19, 23, 33–35, 39, 56, 64, 75–77, 79 Stress model, 8, 9

Index Support, 3, 4, 17–19, 23–25, 32, 34, 35, 38, 40–42, 48–51, 55–57, 63–66, 75–78, 81, 82 T Teenagers, 57, 80 Transition, 9, 18, 62–66