Tensions in Care: Caregiving for an Adult Child with Developmental Disability

Abstract

For this research, semi-structured qualitative interviews were conducted with primary caregivers that have adult children with disabilities. These interviews explored the lived experience of caregiving of primary caregivers. Three main themes surrounding care were found, all falling within the larger context of tensions in care. The first theme captures tensions in policy that promote empowerment but also produce disablement. Second, tensions exist between service agencies and lived experience of care. Lastly, tensions exist between were between the burdens and rewards of caregiving. It is these three themes and tensions that impact caregiving experiences at a personal level with the participants. These tensions are explored at a qualitative level and are illuminated by the lived experiences of the participants. Through this research the complex and understudied world of disability and care are explored. This research has implications for future policy development of support services for families that have an adult child with developmental disabilities. Further, these tensions illuminate the complex world of caregiving for those with disabilities in a way that examines life course impacts on caregivers themselves.