Family support: A review of the literature on families of adolescents with disabilities

ABSTRACT

For all youth, adolescence is a time of great change, marked by multiple transitions. For those with disabilities, these transitions can be especially challenging for the youth and their families. Although families of adolescents with disabilities often require support, it is unclear what types of assistance are most helpful. To understand the responsibilities of and, correspondingly, supports needed for parents and siblings, the authors conducted a comprehensive literature review. Specifically, the authors examined the literature to identify the supports that families provide to their adolescent relatives with disabilities, the impacts of caring for an adolescent relative with a disability, and the assistance that families receive. The authors conclude by discussing implications for future research about family support.     

Resource use of rural low-income families caring for children with disabilities

The Personal Responsibility Work Opportunity Reconciliation Act, Pub.L. 104-193 (PRWORA) was passed creating the Temporary Assistance to Needy Families (TANF) program. Since the passage of PRWORA, many families were able to leave the welfare rolls while those remaining on welfare were likely composed of families facing barriers to leaving, such as caring for children with disabilities. This project addresses the gaps in knowledge regarding low-income families caring for children with disabilities by conducting qualitative research investigating the resources used by these families to find and keep employment and child care. The study used a sample from a research project entitled ‘Rural Families Speak’ and examined the data of 26 families caring for children with disabilities. Analysis resulted in policy recommendations for increasing the efficacy of the programs designed to help these families.     

Austerity and the lives of people with learning disabilities. A thematic synthesis of current literature

Abstract

The Financial Crisis of 2008 resulted in many western economies implementing cuts in health and social care. This systematic review provides a holistic picture of the impact of austerity policy on the lives of people with learning disabilities (LD) and the collateral effects on the people who support them. Our review suggests that in the current climate of economic austerity, available funding to support people with LD is no longer aligned to their care needs. Cuts in disability services have adversely affected the well-being both of people with LD and their informal carers. Individuals with LD have lost social support and are experiencing increased social isolation. Heightened demands on family carers’ time have negatively influenced their wider roles, including parental functioning, and labour market participation. Our review provides the foundations for further discourse and research on the effects of austerity on people with LD and their family carers.     

Becoming the mother of a child with disabilities: a systematic literature review

The transition to motherhood starts early in pregnancy and is completed when the mother feels competent in caring for the infant. Becoming the mother of a child with disabilities is demanding as their needs are complex. The aim of the review was to appraise completed qualitative and quantitative reports on the challenges of mothers of children with disabilities regarding their own transition to motherhood. A review of the literature was carried out through, first, a computerized search strategy to identify relevant studies from selected databases and, second, quality appraisal and thematic analysis of selected studies. The transition to motherhood of children with disabilities takes place in the inside world at home, the outside world external to home and the ‘going-between’ world of travelling between the two worlds. The mothers are challenged at home to integrate basic infant care with technical care of their children. In the outside world they often struggled to ensure that their children got the necessary professional care. Travelling between their homes and healthcare services posed many problems.     

Identifying the needs of parents with learning disabilities: A review

Despite the success of some programmes in raising the parental competency of parents who have learning disabilities, many services are still providing only minimal support to such families, often following crisis intervention. Recent legislative changes within the UK have meant that statutory services are now required to adopt a preventative approach to children and families in need. A review of the literature reveals that children of learning-disabled parents are particularly vulnerable to abuse/neglect and removal from their natural family. This article addresses the difficulties that many clinicians currently experience in the early identification of parents who have learning disabilities. It also emphasizes the need for a systematic approach in the assessment of these parents prior to the implementation of parental teaching programmes.     

Health Care innovation and children in poverty: lived experiences of caregivers of children with disabilities in a medicaid-serving ACO

This paper reports the results of a qualitative study of caregivers of children with disabilities enrolled in a Medicaid-serving accountable care organization (ACO). The state of Ohio mandated ACO enrollment for Medicaid-eligible children with disabilities in 34 of 88 counties effective July 2013. Research participants were queried in focus groups and individual interviews about their children’s care experiences and care coordination after enrollment. Most told researchers that they themselves are their children’s care coordinators, and many indicated that resource scarcity is a more pressing problem than fragmented care. Data analysis identified a theme of scarcity and four categories of insufficiency that made caregiver efforts on behalf of their children more difficult: a lack of health services under managed care, resource constraints on other agencies and programs for which families were eligible, a lack of financial support, and a lack of family support. A conceptual framework places ACO care coordination among more upstream factors and identifies ways in which ACOs serving Medicaid populations may wish to address the social determinants of the well-being of children with disabilities. Implications for future research are discussed.     

Maltreatment of children with developmental disabilities: An ecological systems analysis

The purpose of this review is to understand the risk factors for maltreatment of children with developmental disabilities. Using the Bronfrenbrenner's (1976, 1977) ecological systems framework, the authors examine how socio-demographic characteristics (age, gender, and special education), micro- (parent-child relationship and domestic violence), exo- (parenting stress, parents' social support, and area of residence), and macrosystems level (culturally defined parenting practices) factors influence or inhibit maltreatment of children with disabilities. The authors highlight major implications for practice and policy for maltreated children with disabilities.     

Social support,the presence of barriers and ideas for the future from students with disabilities in the higher education system in Croatia

This paper examines how students with disabilities in Croatia perceive support, experience barriers and propose ways forward for equality of opportunities in the higher education system. In qualitative interviews, students were satisfied with the informal support they received from family and friends but dissatisfied with the formal support they received from universities and the government. Obstacles to inclusion included: inadequate transport and finance to attend university and minimal adaptation of buildings, toilets, lifts, classrooms and dormitories. Students proposed: investment in adapting buildings, personal assistants, educational grants and transport; coordination within the formal systems from national government to universities and non-governmental organisations; and measures to increase disability awareness for academics, professionals and other students within higher education. The situation for students with disabilities in Croatia is a reminder for those working in countries where policy and practice is relatively advanced that many disability battles are still to be won in newer nations.     

Unmet service needs of families of young children with chronic illnesses and disabilities

Data about health and educational services were collected from 187 families with young children (under two years) who have chronic illnesses and disabilities. The purpose was to assess parents' satisfaction with services their families received and to identify families' unmet service needs as well as the reasons for these unmet needs. Although families' ratings of the adequacy of services are relatively high, 28% of the families report unmet service needs. The unmet needs most often reported are occupational, physical, or speech therapy; respite care/child care; and special education. Lack of funding is the most commonly given reason for unmet needs. Children with multiple impairments are at highest risk for unmet needs. Only 22% of unmet needs reported at the initial interview have been met by the time of the six-month follow-up. Increased coordination and monitoring of services across service sectors are indicated. Her research interests include the effects of disability on family identity and families' responses to minority stress. She received her Ph.D. from the University of Minnesota. She gratefully acknowledges Shelley Blazis and Nadav Casuto for statistical consulting. Her research interests focus on the impact of chronic illness and disability on families. She received her Ph.D. from the University of Minnesota. Her research interests include families and health and chronic illness and disability in children. She received her Ph.D. in Family Social Science at the University of Minnesota. His areas of interest include neurodevelopmental outcomes of low birth weight infants and training in developmental pediatrics. He was graduated from the University of Minnesota Medical School. His areas of interest include adolescents with chronic illness and disabilities, adolescent sexual decision making, and international adolescent health care issues. He was graduated from Howard University College of Medicine was awarded his earned doctorate in Health Policy from the University of Minnesota. Preparation of this article was supported by the National Institute on Disability and Rehabilitation Research Grant #H133890012.     

Social work with vulnerable families and children in 11 Russian regions

Purpose. The purpose of the study was to describe and analyse how key actors in the social sector in Russian regions identify problems, objectives and social work achievements in connection with vulnerable families and children.

Methods. University personnel conducted 209 interviews using semi-structured questionnaires.

Results. Family problems were reported to be related to poverty, parents’ alcohol abuse, the child's behaviour, the child's lack of social skills, domestic conflicts and problems getting adequate housing. The view of the majority of the respondents was that social orphanhood depends on poverty, alcohol abuse and the family's diminished role in society. Family incomes have improved but services have become more expensive. The social workers mostly put the child, not the family, in focus. Alcohol abuse was considered to be a greater problem in wealthier regions. Analyses between key groups showed that the respondents ranked problems differently, had similar ways of defining important objectives, but had divergent opinions on what social work could achieve concerning, for example, re-establishing the child's contacts with his/her biological parents.

Conclusions. The respondents seem to be highly ambivalent toward alcohol abuse as a social problem and toward biological parents in vulnerable families. Social work in the regions is a profession in the process of formation.     

Gastrostomy and children: a review of the literature in learning disabilities

Children with developmental delays often suffer feeding difficulties. It has become common for those with a severe likelihood of malnutrition to be considered for alternative methods of nutritional intake, often a gastrostomy. As part of a pilot study investigating the effects of gastrostomy on the child and their family, we conducted a literature review in order to establish the current areas of research, progress and concern. This paper describes the method and findings of the literature review and concludes with a discussion of the topics raised. The main conclusion is that although the need for gastrostomy in this group of children has been shown to be effective in maintaining adequate weight gain and nutritional intake, the support given to the family prior to, and after the operation is inadequate. Greater emphasis needs to be placed on detailed family assessment as part of the early intervention package. Copyright © 2001 John Wiley & Sons, Ltd.     

Family support in late life: A review of the literature on aging,disability, and family caregiving

ABSTRACT

For older adults and people with disabilities in the United States, family caregiving is an important part of remaining at home and in the community. As care recipients and caregivers age, family dynamics change, and the health, social, and financial impacts of this (largely unremunerated) work have implications for individuals, families, and social policy. In this review, the authors map the literature across multiple fields related to disability and aging to understand caregiving in late life, what it means to be an older caregiver and/or to care for older people. The authors summarize the findings of 97 articles to address the care, services, and supports family caregivers provide for older adults; negative and positive impacts for caregivers serving in this role; supports that family members use or need; and societal impact of family caregiving. Much of the literature describes the work family caregivers provide and negative impacts of caregiving. Less attention is devoted to caregiving benefits, supports used by family caregivers, and societal impacts. The authors conclude with an agenda for future research that attends to the need for research that includes: more diverse samples, new types of caregivers, longitudinal data, qualitative data and analysis, and comparative research.     

Evidence-based practice with families of chronically ill children: a critical literature review

A chronically ill child is financially, emotionally, and physically demanding on the family system. Although researchers have identified a plethora of risks, stressors, and needs of the families with a chronically ill child, there is a scarceness of evidence-based interventions in the existing literature. The purpose of the authors in this study was to critically analyze current treatment and identify the gaps in the available research. Findings revealed that there is a lack of support for empirically tested interventions that can help parents, siblings, and families of chronically ill children. The issues raised within this literature review bring attention to the need for shifts in research from exploratory to evidence based in order to successfully achieve more effective care.     

Prevalence of children with disabilities in the child welfare system and out of home placement: An examination of administrative records

This article explores the prevalence and characteristics of children with disabilities within the child welfare system using administrative data from the State of Minnesota. This study finds that more than a fifth (22%) of children with substantiated maltreatment are labeled in administrative records as having a disability, and more than one quarter of children (27.9%) over age five. The most common type of disability among children with substantiated maltreatment was emotional disturbance, while other common disabilities included intellectual and developmental disabilities and learning disabilities. Using logistic regression, this study finds that children with substantiated maltreatment with disabilities were about two times more likely to be in out of home placement than children with substantiated maltreatment without disabilities.     

Social work with Bosnian Muslim refugee children and families: a review of the literature

More than two million Bosnian Muslims were ethnically cleansed in the Balkan region; of these, 200,000 were killed while the others were forced to flee their homes and become refugees. This article focuses on the influence of societal and cultural values coupled with wartime experiences on the transition of Bosnian refugee families to their new countries. Consideration is given to culturally competent theoretical frameworks and practice principles social workers can use to assist Bosnian Muslim children and families in their adaptation process within their resettlement communities.     

The obscuring of class in memoirs of parents of children with disabilities

Many memoirs written by the parents of children with disabilities have been published in America, especially in recent years. Although they often tell tales of struggle and heartache, they are also often tales of parents and children who manage to overcome adversity. While these stories no doubt often give many new parents of children with disabilities hope, they also obscure the fact that members of different classes have different access to various coping strategies for the extra challenges of raising a child with a disability. This paper examines nine memoirs and how the authors were able to use resources available to members of the middle and upper class (finances, time, and social connections) to more easily accomplish modern ideals of disability in America: de‐institutionalization and inclusion. The coping strategies of the lower class are absent from the discussion. Finally, the paper argues that it is ill‐advised to place such a heavy burden on families in accommodating persons with disabilities.     

Inclusion of children with disabilities in mainstream child development research

This study investigated whether children with disabilities are excluded from mainstream child development research. Fifteen per cent of 533 articles from Child Development and Developmental Psychology (1996–2010) were randomly selected. The exclusion rate was 89.9% when no mention of participants with disabilities was interpreted as exclusion and 66.7% when only studies mentioning disabilities were surveyed; 74% of studies did not provide justification for exclusion. Most studies could have included children with disabilities. Inclusion could be increased by adopting universal design principles and accommodations so that more children with disabilities can gain equal access to research opportunities and the benefits that accrue.     

Community-based arts research for people with learning disabilities: challenging misconceptions about learning disabilities

This article presents some of the community-based artwork of a group of men with learning disabilities, who aimed to challenge some of the misconceptions associated with learning disabilities. People with learning disabilities regularly face many forms of direct and indirect stigma. The consequences of such negative perceptions may affect individuals’ social relationships and ensure that barriers are strengthened which prevent their full inclusion. The men in this project used a series of visual and creative methods to challenge some of these misconceptions by telling stories through art, demonstrating skill through photography, using poetry to talk about sexual identity and improvising drama and filmmaking to challenge stigma, and through sculpture expressed their voices. Thus, by doing so, they were able to challenge some of the stigma associated with learning disabilities, indicating that community-based arts research is a valuable way in which to promote the voices of people with learning disabilities.     

Post-adoption needs of families adopting children with developmental disabilities

The post-adoption service use and needs of 125 families who had adopted children with developmental disabilities were examined using a structured mail questionnaire. Although satisfaction with services used was generally high, many families did not have access to basic family support services such as respite care, life planning and support groups. Income was the only demographic variable which correlated with service need. Middle income families (mean = $30,000 to $34,999) were more likely to need support groups and babysitting for other children than either lower or higher income groups. Of particular note in this study is the relatively high incidence of transracial adoptions. Thirty-one percent of the sample had adopted children of a different race than the family. The implications of the findings and service recommendations are discussed.     

Embarking on self-directed support in Scotland: a focused scoping review of the literature

This article presents findings from a focused scoping review of the published literature on self-directed support (SDS), the term adopted by the Scottish Government to refer to its policy to improve social care outcomes and choices for people using publicly funded services and to distinguish it from personalisation, the term more commonly used in England, and from consumer-directed-care and cash for counselling. The review was undertaken to inform an evaluation of the early adopters of SDS, funded by the Scottish Government 2009–2011, and was updated with later literature. It focused on the evidence base available to inform the Test Sites' (pilot local authorities) efforts to reduce bureaucracy or ‘red tape’ for people choosing their own social care and support; the available evidence about leadership and training to support these changes and about the use of specific transitional funding to ease the process of implementation. The findings of the literature review around these three themes are presented and discussed. The article concludes with a discussion of the potential for such focused literature reviews to inform policy-makers, researchers, and social work practitioners across Europe of the options available when seeking to combine rapid yet rigorous approaches to evidence.