Domains of planning for future long-term care of adults with intellectual and developmental disabilities: Parent and sibling perspectives.
caregivers
disability
long-term care
planning
transition
Journal
Journal of applied research in intellectual disabilities : JARID
ISSN: 1468-3148
Titre abrégé: J Appl Res Intellect Disabil
Pays: England
ID NLM: 9613616
Informations de publication
Date de publication:
Sep 2019
Sep 2019
Historique:
received:
21
06
2018
revised:
06
03
2019
accepted:
22
03
2019
pubmed:
24
4
2019
medline:
1
2
2020
entrez:
24
4
2019
Statut:
ppublish
Résumé
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. 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. 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. 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.
Sections du résumé
BACKGROUND
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
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
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
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.
Identifiants
pubmed: 31012229
doi: 10.1111/jar.12600
pmc: PMC6850586
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
1103-1115Subventions
Organisme : NHLBI NIH HHS
ID : L40 HL110326
Pays : United States
Organisme : Oscar G. and Elsa S. Mayer Family Foundation
Informations de copyright
© 2019 The Authors Journal of Applied Research in Intellectual Disabilities Published by John Wiley & Sons Ltd.
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