Unpaid and Paid Supports in the Lives of Family Caregivers of Adults with Disabilities: Mapping Social Relations

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Brooks, Madison C.
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Mount Saint Vincent University
Caregiving for an adult family member with intellectual and developmental disabilities (IDD) is understood to have both positive and negative effects on a family member’s quality of life. Little is known however, about how family caregivers experience social supports when supporting a family member with IDD. Social supports are comprised of both unpaid and paid supports; these function to strengthen, build capacities, address needs, and sustain the well-being of individuals, as well as their families. The research explored how unpaid and paid supports are socially organized within the everyday lives of family members supporting a family member with a disability. A critical-ecological framework served as the conceptual foundation for the study and was informed by the institutional ethnography (IE) methodology. Study participants were 5 family caregivers supporting a family member with IDD between the ages of 25-40 living in the family home or a community-based setting at the time of the research. This study illustrates analyzing the immediate and broader environments in which family caregivers’ lives are situated in are necessary to understand how unpaid and paid supports ‘work’ in family caregivers’ everyday lives. Support networks were found to vary widely depending on family dynamics, abilities of their family member and considerations of changes over time and geographical distance. In a critical approach, this study exposed the social relations, structural power relations (ruling relations) and the line of fault present in family caregivers’ lives. During interviews, the interdependent nature of unpaid and paid supports in family caregivers’ lives became apparent. However, it was found unpaid and paid supports ‘work’ in different ways, through distinct mechanisms in family caregivers’ lives. To meet the needs of their family members, advocacy for paid supports was necessary by family caregivers. This involved family caregivers working within the system of paid support, governed by policies with institutional and ideological priorities that contrasted their own. Families prioritized support that upheld the rights of their family members through inclusive and accessible quality relationships, activities, and suitable provisions of paid support. Implications and recommendations for policy are articulated, supported by pre-existing findings in the Nova Scotia and broader disability support context. More research is needed with larger sample sizes to explore the topic further. Future directions for research regarding family caregivers accessing unpaid and paid support to live quality lives as they support family members with IDD are discussed.
Caregiving, intellectual disability, developmental disability, family