Care and support for persons with profound intellectual and multiple disabilities without parents: A qualitative exploration.
Ageing
Disabilities
Legal guardianship
PIMD
Parents
Quality of life
Siblings
Surrogate decision-makers
Journal
Research in developmental disabilities
ISSN: 1873-3379
Titre abrégé: Res Dev Disabil
Pays: United States
ID NLM: 8709782
Informations de publication
Date de publication:
Nov 2022
Nov 2022
Historique:
received:
28
06
2022
revised:
23
08
2022
accepted:
09
09
2022
pubmed:
18
9
2022
medline:
5
10
2022
entrez:
17
9
2022
Statut:
ppublish
Résumé
Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents. To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for- and quality of life (QoL) of persons with PIMD. We interviewed seven siblings, and six professionals (N = 13) involved in the care and support for persons with PIMD without parents, and analysed the data thematically. Siblings described a lack in family communication about the transition, yet felt responsible to fill the gap their parents left behind. Professional legal guardians felt professional responsibility towards their clients, yet described they had a limited assignment to fulfil. Professional caregivers underscored the importance of family in the care and support for persons with PIMD, while describing sometimes taking on extra responsibility for clients without parents. Support aimed at facilitating a timely transfer of responsibilities, and at clarifying the content of these responsibilities, could better prepare both siblings and professionals to mitigate the impact of the loss of parents for persons with PIMD.
Sections du résumé
BACKGROUND
BACKGROUND
Persons with profound intellectual and multiple disabilities (PIMD) increasingly outlive their parents. While this is expected to negatively affect them, little is known about the actual situation of persons with PIMD without parents.
AIM
OBJECTIVE
To explore how parental roles are taken over by others, when persons with PIMD have outlived their parents, and how this affects the care and support for- and quality of life (QoL) of persons with PIMD.
METHODS
METHODS
We interviewed seven siblings, and six professionals (N = 13) involved in the care and support for persons with PIMD without parents, and analysed the data thematically.
RESULTS
RESULTS
Siblings described a lack in family communication about the transition, yet felt responsible to fill the gap their parents left behind. Professional legal guardians felt professional responsibility towards their clients, yet described they had a limited assignment to fulfil. Professional caregivers underscored the importance of family in the care and support for persons with PIMD, while describing sometimes taking on extra responsibility for clients without parents.
CONCLUSIONS
CONCLUSIONS
Support aimed at facilitating a timely transfer of responsibilities, and at clarifying the content of these responsibilities, could better prepare both siblings and professionals to mitigate the impact of the loss of parents for persons with PIMD.
Identifiants
pubmed: 36115069
pii: S0891-4222(22)00164-0
doi: 10.1016/j.ridd.2022.104334
pii:
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM
Pagination
104334Informations de copyright
Copyright © 2022 The Authors. Published by Elsevier Ltd.. All rights reserved.
Déclaration de conflit d'intérêts
Declaration of Interest None.