This study examined factors influencing involvement of siblings of individuals with developmental disabilities in future planning and their expectation of future caregiving. The sample consisted of 139 adult siblings recruited from an online sibling list and a sibling conference. Results indicated that few families made plans or involved siblings in the planning. Siblings who were most involved in future planning were older, more involved in disability activities, and provided more support to their sibling with disabilities. About 38% of siblings expected to be primary caregivers and were more likely to expect this role if the sibling with a disability lived closer and was female, had more sibling contact, provided them with more support, and felt greater caregiving satisfaction. Major support needs of siblings were for support groups, workshops-training on how to assume caregiving responsibility, financial support, and printed material on making future plans.

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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.

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.

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 educational resources that accommodate this population of carers as they age together with their sibling with I/DD.

Background  This participatory action research (PAR) project involved a collaboration with a self‐advocacy group of people with intellectual disabilities that sought to build group capacity for advocacy. Materials and Methods  This study used a focus group, sustained participatory engagement and a reflexive process to gather qualitative and quantitative data over 15 months. All methods were adapted to ensure accessibility and to support active participation. Results  The collaboration generated action products, including tools to support advocacy and an accessible action and reflection process. Research findings suggest that active participation is essential for group control, but alone does not automatically lead to control. The manner in which supports are provided, including member supports, advisor supports, strategy supports and systems supports, influences the extent to which members have a sense of control over decision making and participation and thus, improved capacity for advocacy. Conclusions  A PAR approach can be used to increase a group’s capacity for advocacy and meaningfully involve self‐advocacy groups in participatory research that leads to change.

Using qualitative methods, this study examined the experiences of individuals with intellectual disabilities (IDs) in sheltered workshops and compared them to those in community employment. In particular, the study investigated how employment affects opportunities for the creation of social capital. Primary respondents were individuals with ID and secondary respondents were family members and employment services staff. Findings revealed that a form of social capital was created through workplace connections. Community employment did not increase social capital per se, but it did produce opportunities not available in the workshop. The role of family members emerged as critical in the support of community employment and its potential for social capital development.

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