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

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The Journal of Applied Research in Intellectual Disabilities has published a new article on ‘Domains of planning for future long‐term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives’

Abstract

Background: Research shows that adults with intellectual and developmental disabil- ities (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 ex- plore domains of future planning and identify barriers and facilitators.

Results: Themes from the interviews revealed seven major domains of future plan- ning 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.

The article is available at:

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