Differentiated Coping Strategies in Families with Children or Adults with Intellectual Disabilities: the Relevance of Gender,Family Composition and the Life Span

The present paper considers the coping strategies of families with children and adults with intellectual disabilities. It is argued that the literature on coping and resilience in families has often been overlooked in favour of deficit models of family functioning. The present study was designed to provide a further test of the transactional model of coping, but more especially, to explore which problem‐solving, cognitive and stress reduction coping strategies family members found useful. Based on the use of a coping inventory Carers Assessment of Managing Index (CAMI), coping is shown to be differentiated according to gender, life stage and family structure. Implications for continuing research into family care are considered and some questions are raised about family support.     

Cultural Explanations of Mental Health and Illness

Worldwide, caregivers find caring for children with Autism Spectrum Disorder (ASD) challenging. Family members must manage many aspects of care giving, which is demanding, overwhelming, and can affect the family members’ mental health. However learning how to be resilient may help family members overcome the stress and burden associated with caring for a person with ASD. A search was completed in Medline, PsycINFO, Proquest, Web of Science, and CINAHL using the key words “autism,” “caregivers,” “mothers,” and “fathers,” alone and in combination. Inclusion criteria were English language articles reporting studies with samples of children with ASD, as distinct from children with other intellectual or developmental disabilities. Fifty-eight articles that met these inclusion criteria were summarized and, from those, the authors selected 22 articles that included indicators of resilience. This integrative review highlights current research on resilience in adult family members of persons with ASD. Indicators of resilience, risk factors, protective factors, and outcomes of resilience were identified. The review indicates that parents of children with ASD who possess indicators of resilience are better able to manage the adversity associated with caring for children with ASD. Thus, enhancing resilience among family members of persons with autism may be beneficial to both the caregivers and care recipients.     

Violence in the care of adult persons with intellectual disabilities

Background. Violence, for example physical, psychological, financial and sexual abuse and neglect, exists and is an under‐reported problem in caring situations involving adult persons with intellectual disabilities and their caregivers, where both parties can be seen as victims and perpetrators. Aims and objectives. To investigate violent situations involving Swedish adult persons with intellectual disabilities and their caregivers in group‐dwellings. Design. A total population‐based survey. Methods. A questionnaire, including violence towards adults with intellectual disabilities and violence towards staff members during 1 year, was sent to all staff members (n = 164) from 17 care settings for adults with intellectual disabilities with a response rate of 74%. Results. Thirty‐five per cent of 122 respondents admitted they had been implicated in or witnessed a violent incident towards an adult person with intellectual disabilities and 14% of the staff members admitted they themselves had been the perpetrators. Sixty‐one per cent of the staff members described various situations when they were exposed to violence from an adult person with intellectual disabilities. Physical violence was most frequently reported. Most of the aggression occurred in helping situations when persons with intellectual disabilities did not co‐operate or when both actors reacted with violence. The violent situations led the staff members to feel powerless and inadequate. In order to cope they discussed with each other or with the manager. Conclusions. Violence seems to be accepted as a natural part of the daily care for adult persons with intellectual disabilities. Most of the violence is physical and psychological and occurs in close helping situations. Relevance to clinical practice. Supportive interventions, i.e. supervision for the staff members and training of communication skills individually or in group for the adults with intellectual disabilities.     

Parents with Intellectual Disability in Germany: Results of a Nation-wide Study

A nation-wide questionnaire survey conducted in Germany found 969 persons with intellectual disabilities who had become parents of 1366 children. Thirty examples of parenthood were investigated further by interviewing mothers, fathers or adult children and staff members or assisting relatives. High levels of psychosocial stress were often found. Unhelpful reactions to the pregnancies of mothers with intellectual disabilities were more the rule than the exception. Nevertheless, mothers and fathers with intellectual disabilities often looked forward to having a baby, seemed to be proud of their children and reported having good emotional relationships with them, even when the children did not live with them. Institutional support services, if any, were not always judged to be helpful.     

Perceptions of Support in Chinese Mothers of a Child with Intellectual Disability

Mothers of a child with intellectual disability face various challenges in parenting. However, most studies of support for parents of a child with intellectual disability have been conducted with families from Western cultural backgrounds. Little is known about support for families of children with disabilities in China. This study explored the perceptions of Chinese mothers of a child with intellectual disability about the support that they received. Semi-structured interviews were carried out with twelve mothers of a school-aged child with intellectual disability. The data were analysed thematically. It was found that Chinese mothers received support mainly from family members, social contacts, school teachers, and the government. Family conflicts, isolation from friends and community, unequal relationships with school teachers, and restricted access to information appear to be the main barriers for mothers to accessing and utilizing the available support. This research points to potential areas of difference between the experiences of mothers in China and those in Western countries.     

Constructing Adulthood in Discussions About the Futures of Young People With Moderate‐Profound Intellectual Disabilities

Background This study examines how those planning futures for young people with moderate‐profound intellectual disabilities invoke, deploy and interpret contrasting definitions of adulthood and perceived capacity for autonomy and self‐determination. Methods Twenty‐eight young people were followed through transition from children’s to adult services. This paper incorporates data from interviews with young people, their carers and transition staff. Results Two discourses around adulthood were identified. One positioned the young people as adults entitled unequivocally to self‐determination, invoking policy injunctions to do so. The second qualified the young people’s adult status and claims to self‐determination, emphasising the obdurate reality of intellectual disability. Conclusions Transition to adult services for young people with intellectual disabilities raises difficult questions about the relationship between vulnerable young people, families, professionals and society. Reducing these to rigid moral polarities of ‘right’ and ‘wrong’ creates an unhelpful context for good decision making. A more constructive approach would include all stakeholders in discerning ‘the right thing to do’.     

Paying the Piper and Calling the Tune? The Relationship Between Parents and Direct Payments for People with Intellectual Disabilities

Background The aim of this paper is to investigate the role parents are playing in direct payments provision for their son or daughter with intellectual disabilities. Materials and methods The paper draws on a UK‐wide inclusive research project, carried out by researchers who were members of an organization of people with intellectual disabilities. The purpose of the project as a whole was to explore what support works best for people with intellectual disabilities to access direct payments provision in the UK, and one of the key supports for certain people was found to be parents and families. Results Drawing on interviews with 29 family carers, the researchers found that parents were often strong advocates of independence for their son or daughter, and only acted as barriers to direct payments when they did not have sufficient information. Parents were found to be playing significant roles as initiators, managers and supporters of direct payments for their son or daughter; however, these roles were matched by important gains in quality of life and relationships within the family. Conclusions The paper considers the implications of the power balance between persons with intellectual disabilities, their parents and their staff. Direct payments can alter that balance radically, but it is still important to have a good, independent direct payments support scheme to enable the person with intellectual disabilities to be in control.     

Factors Related to Positive Perceptions in Mothers of Children with Intellectual Disabilities

Background Existing theoretical and empirical work in the intellectual disability field has paid little attention to parents' positive perceptions of their child and the positive impact that the child may have on the family generally. The main aim of the present study was to explore the factors related to the mothers' positive perceptions of their child with intellectual disability. Methods The mothers of 41 children with intellectual disabilities completed a self‐report questionnaire that measured demographic factors, child demographic variables (including caregiving demand), social support, coping strategies and dimensions of positive perceptions. Results Mothers' perceptions of the child as a source of happiness/fulfilment and as a source of strength and family closeness were positively associated with reframing coping strategies. Mothers' perceptions of the child as a source of personal growth and maturity were also positively associated with reframing coping strategies, the helpfulness and usefulness of support from family and friends, and the caregiving demand. Conclusions The relationship between coping and parental positive perceptions requires more investigation both theoretically and empirically. This relationship may also have important implications for the support of families of children with intellectual disabilities.     

The transition from child to adult health services for young adults with intellectual disabilities: An evaluation of a pilot of an online learning resource for Registered Nurses

AimThis study formed the third phase of a national study on the experience of transition from child to adult health services for young adults with intellectual disabilities. The aim of this phase was to evaluate the accessibility and acceptability of an on-line learning resource for Registered Nurses.BackgroundThe population of young adults with intellectual disabilities and complex needs is increasing. Consequently, more will move from child to adult healthcare, with evidence highlighting that for some their experiences of the transition process is poor. The main study provided contemporary evidence to raise the awareness of Registered Nurses of the needs of young adults with intellectual disabilities and their role in enabling an effective transition from child to adult services.MethodsThe online learning resource was developed and piloted with Registered Nurses involved in the transition from child to adult health services for young adults with intellectual disabilities and complex needs. Data collection involved an online survey and semi-structured interviews.ResultsTwelve Registered Nurses from 2 Scottish NHS Boards completed the questionnaire and 3 participated in a follow-up interview. The findings suggest that the mode of on-line delivery and most of the content of the learning resource were both acceptable and accessible to Registered Nurses across a range of areas of nursing practice. The learning resource was further adapted in response to the participant data.ConclusionThis on-line learning resources offers the potential for Registered Nurses, and potentially other healthcare professionals to undertake evidence-based, structured further education regarding the effective transitions for young adults with intellectual disabilities and their families.Tweetable abstractRegistered Nurses have key contributions to enable the transition from child to adult healthcare for young adults with intellectual disabilities.     

The Effect of Group Intervention on the Relationships of Parents with Intellectual Disabilities

Background Parents with intellectual disabilities frequently feel socially excluded and often become dependent on statutory agencies for support. This study aimed to tackle these difficulties by means of a group intervention. Methods Group intervention was provided to 12 parents with borderline or mild intellectual disabilities over 14 weeks. The effects of intervention were evaluated by comparing the intervention group with a borderline or mild intellectual disabilities control parent group (n = 10). Both experimental parent group (EPG) and control parent group (CPG) received home‐based teaching programmes during this period. Parents' self‐concept and perception of the quality of relationship with their children, partners, family members and professionals were assessed (Judson Rating Scale and Behaviour Problem Index) during baseline, post‐intervention and at 27‐week follow‐up. Results The results indicate that self‐concept improved significantly for the EPG with no observable gains made by the CPG. However, the ‘feel good factor’ which came from improvements in parents' self‐concept did not immediately benefit their children. In addition, the quality of relationship between EPG parents and their children, as well as parents' expectations of their children's capabilities did not improve as a result of group intervention. Nonetheless, follow‐up data revealed that group training did result in (i) all of the EPG parents making new friends and (ii) other positive social and practical changes taking place within their families. Single parent status and the accumulative effect of multiple group attendance were identified as important factors affecting parents' perception of themselves and the quality of their relationships. Conclusions The immediate and long‐term benefits of group attendance for parents with intellectual disabilities and secondary benefits for their children are discussed.     

Increasing students' sensitivity to families of children with disabilities

Families of children with disabilities pose a particular challenge to nurses as each child and family is a unique combination of intellectual, emotional, and medical concerns. The authors describe a project in which families of children with disabilities serve as teachers to baccalaureate nursing students. The goal of the project is to facilitate sensitivity and an understanding of the needs of a child with a developmental disability.     

Families Supporting a Child with Intellectual or Developmental Disabilities: The Current State of Knowledge

This IASSIDD Position Paper provides a concise authoritative summary of (i) existing scientific knowledge regarding the situation, challenges and well‐being of families that include a child with intellectual and/or developmental disabilities, and (ii) priorities for future research. IASSIDD ( www.iassidd.org ) is the leading global organisation for researchers and research centres that seek to improve the understanding of and improve the lives of people with intellectual or developmental disabilities, their families and those who support them. The paper and the recommendations it contains have been developed through an iterative process led by IASSIDD's Families Special Interest Research Group (SIRG). During this process, all members of the Families SIRG and all members of IASSIDD's ruling council have had the opportunity to comment on drafts of this paper. The final Position Paper was adopted by the Council of IASSIDD on 9 July 2012.     

Family Structure in Norwegian Families of Children with Disabilities

Background The idea that raising a child with disabilities has a negative impact on the parents’ relationship is still widely accepted despite contradictory research findings. This article addresses the impact of raising a child with disabilities on family structure in the present Norwegian context. Method Family demographics were collected at two stages during the childhood of children with physical, intellectual or multiple disabilities born 1993–1995 (1999, n = 603 and 2003, n = 489). These figures were compared with the corresponding data for all children (Statistics Norway, Children Statistics). Results The family structures of children with disabilities were fairly similar to those of the typical family. Slightly fewer children with disabilities had siblings and a higher proportion of the parents of children with disabilities were married or cohabiting. The type or degree of impairment was not found to have any impact on family structure. Conclusions The results suggest that family structure in families raising a child with a disability is similar to other families. Whether this should only be seen as positive is discussed, as is whether the disability may produce a stronger feeling of obligation to stay together.     

The Quality of Life of Family Caregivers of Adults with Intellectual Disabilities in Taiwan

Background Taiwanese family carers of people with intellectual disabilities not only suffer from long‐term stress but also need to cope with social difficulties. The aim of this study is to evaluate the quality of life (QOL) among family carers of people with intellectual disabilities. Materials and methods A census interview survey was conducted in Hsin‐Chu City in Taiwan and included the primary family caregivers of 792 adults with intellectual disability who were living with their families. The survey packet contained the WHOQOL‐BREF Taiwan‐version scale with four core domains and the activities of daily life/instrumental activities of daily life (ADL/IADL) scales. Results The mean score for ‘physical’ was highest and that for ‘environment’ was lowest. The strongest predictors of caregivers QOL were the caregiver's health status, their family income and the level of severity of the intellectual disability of the adult. Conclusions The results of the study support the need to expand services and individualize support to families of adults with intellectual disability living in family homes.     

Correlations between motor competencies,physical activity and self-concept in children with intellectual disabilities in inclusive education

Background

Reciprocal relationships exist between motor competencies, physical activity and self-concept.

Aims

Using a structural equation model, this study examined whether these relationships also appear in children with intellectual disabilities, how they can be validly measured, and if there are differences between children with and without intellectual disabilities.

Materials & Methods

Data from a cross-sectional research project involving 121 children with intellectual disabilities and 1721 without intellectual disabilities were analysed.

Results

The results demonstrate that reciprocal relationships also apply to children with intellectual disabilities and can be elucidated if inverse items are omitted.

Discussion

Children with intellectual disabilities have less developed motor competencies and are less physically active but have a higher general self-concept compared to children without intellectual disabilities. The sport-related ability self-concept of both groups is comparable.

Conclusions

The results are broadly consistent with extant research and illustrate that the development of motor competencies, physical activity and self-concept in children with intellectual disabilities must be encouraged.     

The Relationship Between Life Events and Psychopathology Amongst Children with Intellectual Disabilities

Background Research has established a clear relationship between life events and psychopathology amongst children generally, but this relationship has not been investigated in children with intellectual disabilities. Methods A secondary analysis of data collected by the 1999 ONS survey of the Mental Health of Children and Adolescents in Great Britain, investigating associations between adverse life events and psychopathology amongst 264 children with intellectual disabilities and 10 040 children without intellectual disabilities. Results Children with intellectual disabilities were more likely to experience a greater number and range of adverse life events than children without intellectual disabilities, a difference partly accounted for by family poverty. For children with and without intellectual disabilities, there were robust associations between several life events and child psychiatric disorders, most strongly emotional disorder. There also appeared to be a cumulative effect of life events on the psychopathology of children with intellectual disabilities. Conclusions Adverse life events play an important role in the psychopathology of children with intellectual disabilities and require further research attention. Policy interventions to reduce family poverty may have an indirect effect upon child psychopathology.     

The Prevalence of Psychiatric Disorders among People with Intellectual Disabilities: An Analysis of the Literature

Background It has often been stated that the prevalence of psychiatric disorders in people with intellectual disabilities is greater than it is in the population as a whole. Method The epidemiological studies on psychiatric disorders in people with intellectual disabilities were reviewed. Results There is evidence that the prevalence of psychiatric disorder is greater in children with intellectual disabilities, compared with children with normal IQs, that it is higher in both adults and children with severe intellectual disabilities compared with people with mild or no intellectual disability and that the rate of problematic behaviour is higher in both adults and children having intellectual disabilities, than in their non‐disabled peers. Conclusions There is no sound evidence that the prevalence of psychiatric disorders in adults with mild intellectual disability is greater than in the population as a whole.     

Men with Intellectual Disabilities Who Sexually Abuse: A Review of the Literature

Trailing behind the recent acknowledgement of the high incidence of sexual abuse amongst people with intellectual disabilities is a recognition of men with intellectual disabilities as perpetrators of sexual abuse. This paper reviews the North American, Australian and British literature published in this area. It demonstrates that both theoretical understandings and clinical interventions with men with intellectual disabilities are often discordant with wider perspectives of work with sexual abusers. The effect of this is shown to be common discriminatory practice received by men with intellectual disabilities which at times shows poor regard for their rights.     

Overview of Health Issues of Older Women with Intellectual Disabilities

Health researchers, educators and providers have begun to address the health needs of women and girls with disabilities in the U.S. Older women with intellectual disabilities, however, remain underrepre-sented in the national health research agenda. As this population becomes more visible and empowered through policies that support greater community integration and longevity, they and their families, professionals and advocates need more accurate information about their health concerns and options. A critical problem is that professionals receive little training regarding the health concerns and experiences of women with intellectual disabilities who are growing older. This paper provides an overview of primary health issues related to aging for women with intellectual disabilities in the following areas: (1) general health, (2) reproductive health, (3) mental health, and (4) access to health services. The paper concludes with a discussion of implications for practice and research, and recommendations for future research and health service provision for women with intellectual disabilities.     

Interventions Provided by Parents for Children with Intellectual Disabilities in Low and Middle Income Countries

Background In low‐ and middle‐income (LAMI) countries, there is a lack of well‐trained therapists to provide specialist interventions for children with intellectual disabilities and their families. We sought to identify strategies deliverable by families or non‐specialist workers. Materials and Methods After searches of appropriate scientific databases, we applied GRADE methodology to rate the quality of evidence for these interventions. Results We identified small‐scale interventions trialled in LAMI countries with limited evidence of effectiveness in supporting development, adaptive behaviour and/or community participation. In high‐income countries, the Stepping Stones Triple P program for adaptive behaviour and the Portage program for child development have the most extensive evidence base and may be applicable in LAMI countries. Conclusions There is reason to hope that, when combined with community development strategies, the welfare of children with intellectual disabilities in LAMI countries can be advanced within those countries’ economic means.