How Do Parents Experience the Process of Planning for the Long-Term Care of Their Adult Children with an Autism Spectrum Disorder?
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Authors
Halverson, Tami Jo
Issue Date
2020
Type
Dissertation
Language
en
Keywords
"Autism Spectrum Disorder","Long-Term Care","Permanency Planning","Adult Children with Autism"
Alternative Title
Abstract
Many parents of adult children with autism spectrum disorders (ASD) are not proactive about developing a permanency plan for their child's later life, despite having profound concern about who will care for their child once they are gone. This qualitative study explored how parents of adult children with ASD experience the process of planning for their child's long-term care. A conventional content analysis of semi-structured interviews was conducted to obtain an in-depth understanding of the subjective experiences of how parents cope with the burden and stress of the permanency planning process. The results of the present study indicated that several barriers, both internal (i.e., difficult emotions, uncertainty, avoidance) and external (i.e., distrust and dissatisfaction with the care system, family disruption), interfere with long-term planning. These factors seem to limit permanency planning by increasing parents' sense of uncertainty regarding the needs and capacities of their child with ASD. The clinical implications of the findings and recommendations for future research are discussed.