This NIHR-SSCR funded scoping review provides a comprehensive mapping of what is known about carers and caring, and aims to help inform policy, practice and research in relation to carers. The review was undertaken by searching 10 electronic bibliographic databases, supplemented by additional web searches to identify academic research, grey literature and wider knowledge. The analysis adopts a selective thematic approach covering: carer variables - the characteristics of different types of carer and different caring situations; types of care - the nature of needs of the cared for person and the features of the care situation; the impact of caring – resilience and coping, employment and health; and carer support and needs assessment. The final section highlights key messages identified from the review. It found that caring involves all sections and age groups of the population, with people are likely to experience one or more periods of caregiving over their lifetime. The uniqueness of each caring relationship is also highlighted. In relation to types of carers, knowledge about ‘hard to reach’ groups, such as BAME and LGBT carers, remains sparse. Older carers are also relatively invisible in policy and research terms. It found that much of the knowledge about carers identified in the review relates to their characteristics, their lived experience and the nature of their caregiving, with relatively less being known about the effectiveness of interventions to support them. The report concludes by offering suggestions for policy and practice. An appendix provides a bibliography of the 3,434 items identified in review, classified into 17 types of reference.

Seeing the wood for the trees. Carer related research and knowledge: A scoping review

As siblings play an increasing role in the lives of people with intellectual and developmental disabilities as a result of the longer lifespan of this population and the aging of their parents, more investigative work in this area is warranted. To lay a foundation for this, the authors reviewed the English-language literature on siblings of adults with intellectual and developmental disabilities, focusing on three main questions: (1) what are the psychosocial outcomes of having a sibling with an intellectual and developmental disabilities on the sibling without a disability?; (2) what factors relate to the nature of the sibling relationship?; and (3) what factors relate to future planning, including expected and future relationships when parents can no longer provide care? This literature review looked at published work for the period 1970–2008 on adult siblings over 21 years of age that addressed relationships, psychosocial outcomes, and/or involvement in future planning. Twenty-three relevant studies were identified. Overall, these studies present a mixed, but generally positive picture of the psychosocial outcomes of having a sibling with a disability. They also indicate that siblings tend to have long-lasting close relationships with their siblings with a disability and anticipate taking on greater supportive roles as both grow older.

Siblings of Adults With Developmental Disabilities: Psychosocial Outcomes, Relationships, and Future Planning

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StateData: The National Report on Employment Services and Outcomes, 2012

With the growing life expectancy for individuals with intellectual and developmental disabilities, siblings will increasingly assume responsibility for the care of their brother or sister with intellectual and developmental disabilities. Using a 163-item survey completed by 757 siblings, the authors identified factors related to future caregiving expectations. Siblings expected to assume greater caregiving responsibility for their brother or sister with disabilities if they were female, had closer relationships with and lived closer to their brother or sister with intellectual and developmental disabilities, and were the lone sibling without a disability. Siblings who expected to assume higher levels of caregiving had parents who were currently more able to care for their brother or sister with disabilities. With a better understanding of who intends to fulfill future caregiving roles, support can be provided to these siblings.

Predictors of future caregiving by adult siblings of individuals with intellectual and developmental disabilities.

1. Introduction 2. Economic inclusion 3. A closer look at employment 4. Political inclusion 5. Social inclusion 6. Gender, race, ethnicity, and disability 7. Conclusion.

People with Disabilities: Sidelined or Mainstreamed?

This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample con...

Involvement of adult siblings of persons with developmental disabilities in future planning.

This qualitative study examines the support needs of adult siblings of people with developmental disabilities. A survey completed by 139 siblings of people with developmental disabilities captured the needs of adult siblings through 2 open-ended questions. A grounded theory approach was used, and the sibling responses anchored the analysis, interpretation of findings, and discussion using the constant comparison method. Eleven core variables and 3 overarching themes emerged. Three overarching themes for sibling support needs include: (a) getting disability-related information, (b) getting support for their caregiving role, and (c) enhancing the formal support system to address sibling needs.

Support needs of siblings of people with developmental disabilities

Background Scholars have called for research approaches that actively include and are driven by people with intellectual disabilities, but the process of inclusive data analysis has been scarcely documented in the literature. This paper demonstrates the process university researchers and a group of self-advocates used to analyse and interpret data collected during a participatory action research (PAR) project to increase the group’s capacity for self-advocacy.



Materials and Methods  University researchers presented numerical data in three visual formats for analysis. Seventeen People First members analysed and interpreted the data using a modified focus group approach.



Results  All members participated in data analysis, but not all members participated in data interpretation. Members’ interpretations suggest that the group felt an increased sense of empowerment and heightened awareness as a result of their increased capacity to run a meeting and involvement in the PAR cycle of action and reflection.



Conclusions  Findings suggest that strategies such as visual representation of data, group analysis, and familiarity with data collection tools foster an inclusive process of analysis and interpretation.

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Following Through to the End: The Use of Inclusive Strategies to Analyse and Interpret Data in Participatory Action Research with Individuals with Intellectual Disabilities

Family care provision is the norm for adults with intellectual and developmental disabilities (I/DD), even as they and their support networks grow older. As families age together, the role of primary carer frequently transitions from the parent to a sibling, as aging parents die or become too frail to provide continued support. The purpose of this paper is to explore the transition in care from the perspective of a sibling who has replaced parents as the primary carer for an individual aging with I/DD. Data are drawn from semi-structured, in-depth interviews with a sample of adults over age 40, living in the United States, and caring for a sibling with I/DD (n = 15). Data were analyzed using a constant comparative qualitative approach. Results reveal themes impacting the adjustment to the role of primary carer, the extent to which aging transformed the content of care needs, the importance of planning, and the availability of supplementary support. Findings from this study underscore the need to develop long-term services and supports as well as educa- tional resources that accommodate this population of carers as they age together with their sibling with I/DD.

Aging Together: Sibling Carers of Adults With Intellectual and Developmental Disabilities

Sibling relationships are some of the longest-lasting relationships people experience, providing ample opportunities to build connections across the life span. For siblings and people with intellectual and developmental disabilities (IDD), these connections take on an increased significance as their families age and parents can no longer provide care. This article presents findings from a qualitative study that addresses the question, “How do siblings support each other after parents no longer can provide care to the person with IDD?” Findings in this study suggest that siblings with and without disabilities experience reciprocity as a transitive exchange, which occurs through the creation of social capital in their families and community, and that nondisabled siblings mobilize their social capital to provide support to their sibling after parents pass away. Implications for future research as well as policy and practice are discussed.

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John Kramer

Papers

Involvement of adult siblings of persons with developmental disabilities in future planning.

Support needs of siblings of people with developmental disabilities

Following Through to the End: The Use of Inclusive Strategies to Analyse and Interpret Data in Participatory Action Research with Individuals with Intellectual Disabilities

Aging Together: Sibling Carers of Adults With Intellectual and Developmental Disabilities

Reciprocity and Social Capital in Sibling Relationships of People With Disabilities