'What if I'm no longer around?': An evaluative description of a structured group conversation about the care for persons with profound intellectual and multiple disabilities when they outlive their parents.
care professionals
family members
future care and support
group conversation
parents
profound intellectual and multiple disabilities
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:
14 Dec 2023
14 Dec 2023
Historique:
revised:
11
10
2023
received:
03
03
2023
accepted:
24
11
2023
medline:
15
12
2023
pubmed:
15
12
2023
entrez:
14
12
2023
Statut:
aheadofprint
Résumé
Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary. We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations. Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it. The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.
Sections du résumé
BACKGROUND
BACKGROUND
Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. Therefore, we designed a structured group conversation to support family members and care professionals in exploring together how parental roles may be taken over by others when necessary.
METHOD
METHODS
We conducted a mixed methods study, with a focus on the qualitative data, to describe and evaluate three group conversations.
RESULTS
RESULTS
Family members (n = 22) of persons with PIMD who live in residential care facilities and care professionals (n = 9) evaluated the structured group conversation as valuable. While both parties reported that the group conversation (re)sparked their attention for the topic, mostly family members planned to take concrete action as a result of it.
CONCLUSIONS
CONCLUSIONS
The group conversation encourages parents to communicate explicitly about the future care for their child with PIMD, and offers both family members and care professionals support in exploring this future care together.
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
e13185Subventions
Organisme : ZonMw
ID : 845004009
Pays : Netherlands
Informations de copyright
© 2023 The Authors. Journal of Applied Research in Intellectual Disabilities published by John Wiley & Sons Ltd.
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