Master of Social Work (MSW)
Community, Policy, Planning and Organizations
Lyle S. Hallman Faculty of Social Work
Martha Kuwee Kumsa
The experience of being a caregiver of a child with Autism Spectrum Disorder (ASD) is complicated and fraught with obstacles. Presently, we do not know how to support caregivers adequately. In this thesis, I explore the supports that exist for primary caregivers of children with ASD in the Toronto region, with the goal of examining caregiver experience when accessing supports. The literature that I reviewed highlighted the importance of examining the caregiver experience by acknowledging that caregivers of children with ASD experience elevated levels of stress. This review made it clear that by not addressing how to support caregivers, the well-being of the caregiver and child are put at risk. More specifically, the efficacy of ASD treatment and intervention has been found to be compromised if caregivers are not provided with adequate support. The purpose of this study is to begin the conversation around what supports caregivers feel they need to alleviate the stress they feel from caring for their child. Five caregivers were invited to participate in this study. The study was informed using a social constructionist perspective, and semi-structured interviews regarding their experiences accessing supports in Toronto. A thematic analysis was used to analyze the data. Seven themes were identified through analysis: knowledge about ASD; the ability to listen; accessibility, care coordination/service navigation; waitlists; program structure; and need for work flexibility. Care coordination was the only theme that was mentioned by all five participants, which led me to conduct an in-depth examination of the issues surrounding this theme. Finally, an examination of how a community of practice model may be applied as an alternative form of support was explored, as are policy and practice implications and future research opportunities.
Siron, Nicole H., ""Where's the support?": An Exploratory Study of Supports for Primary Caregivers of Children with Autism Spectrum Disorder in the Toronto Region" (2015). Theses and Dissertations (Comprehensive). 1733.