Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives

By: Lindahl, Jane.
Contributor(s): Changolkar, Sujatha | Coccia, Audrey | Devaney, Maureen | Jan, Sophia | Liang, Angela | Steinway, Caren | Stollon, Natalie | Trachtenberg, Symme | Wu, Katherine.
Series: Journal of Applied Research in Intellectual Disabilities 32 (5) 1103-1115: 2019. 2019Disc region: text file PDF rda.Content type: text Media type: computer Carrier type: online resource Online resources: Read this Article Summary: Background Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning. Methods The study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators. Results Themes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day-to-day care, medical management and transportation. Approaches to planning within each domain varied greatly. Conclusions The study team dentified the domain of "identification of primary caregiver(s)" as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together.
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Item type Current library Call number Status Date due Barcode Item holds
Article Research IHC Library Article (Browse shelf(Opens below)) Available (Article available on request) 10.1111/jar.12600
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Background Research shows that adults with intellectual and developmental disabilities (IDD) increasingly outlive caregivers, who often struggle to plan for the future and have little support and knowledge surrounding long-term care planning. Methods The study team conducted interviews with parents and siblings of adults with IDD and performed qualitative coding using a modified grounded theory to explore domains of future planning and identify barriers and facilitators. Results Themes from the interviews revealed seven major domains of future planning that should be considered by caregivers of adults with IDD. These domains are housing, legal planning, identification of primary caregiver(s), financial planning, day-to-day care, medical management and transportation. Approaches to planning within each domain varied greatly. Conclusions The study team dentified the domain of "identification of primary caregiver(s)" as potentially the most important step for caregivers when planning for the future, but also observed that the domains identified are significantly interrelated and should be considered together.

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