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

Abstract

BackgroundResearch 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.MethodsThe 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.ResultsThemes 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.ConclusionsThe 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.

Getting from here to there: future planning as reported by adult siblings of individuals with disabilities

“…Historically, future planning activities have been considered as a unified set, which families either do or do not engage in (DeBrine et al 2003). In their small-scale study using qualitative interviews of parents and siblings of brother-sisters within family homes, Lindahl et al (2019) found that respondents discussed housing, legal and financial planning, caregiving and guardianship, and medical or transportation needs. Considering our larger sibling sample, this study suggests that future planning involves three distinct domains: (1) legal, (2) residential options and (3) family discussions about the future planning for the brother-sister with a disability.…”

“…a non-legal document outlining desires for brothersister's future); contacting an attorney; establishing guardianship or power of attorney; creating a special needs trust; creating residential plans; and discussing the future with the family and brother-sister. Similar categories arose in qualitative interviews of parents and siblings (Lindahl et al 2019). Other considerations include the brother-sister's diagnosis, level of needed assistance and personal safety (Reed et al 2014), all of which may require families to opt for residences outside the family home or engage in financial and legal planning.…”

“…Although a small qualitative study (Lindahl et al . 2019) suggests possible themes, we do not yet understand the degree to which planning activities constitute one or several domains, nor how frequently families complete specific activities. Neither do we know which sibling, brother–sister, parental or service variables relate to future planning, activities that might help siblings transition from anticipated to actual caregivers.…”

“…Similar categories arose in qualitative interviews of parents and siblings (Lindahl et al . 2019). Other considerations include the brother–sister's diagnosis, level of needed assistance and personal safety (Reed et al .…”

Future planning for individuals with intellectual and developmental disabilities: Perspectives of siblings in South Korea

“…Despite their future roles, little research has focused on the perspectives of siblings of individuals with intellectual and developmental disabilities with respect to their engagement in future planning activities, barriers or correlates (see a review; Lee & Burke, 2020). In addition, most studies were conducted within European countries or the United States (Davys, Mitchell, & Haigh, 2016; Heller & Kramer, 2009; Lee, Burke, Arnold, & Owen, 2019; Lindahl et al., 2019; Taggart, Truesdale‐Kennedy, Ryan, & McConkey, 2012). Given the higher expectation of sibling caregiving in South Korea (Chon, 2018) and the potential impact of a different cultural background (e.g.…”