Creating person-centred support for people with intellectual disabilities at the end of life: An Australian qualitative study of unmet needs and strategies.
end of life
intellectual disability
palliative care
person-centred
unmet needs
Journal
Journal of intellectual disabilities : JOID
ISSN: 1744-6309
Titre abrégé: J Intellect Disabil
Pays: England
ID NLM: 101229024
Informations de publication
Date de publication:
Dec 2020
Dec 2020
Historique:
pubmed:
8
2
2019
medline:
31
8
2021
entrez:
8
2
2019
Statut:
ppublish
Résumé
People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use. Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them. A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented. Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.
Sections du résumé
BACKGROUND
BACKGROUND
People with intellectual disabilities at the end of life are at risk of receiving inadequate and inequitable end-of-life care. This study explores their unmet needs, opportunities for person-centred care and experiences of health service use.
METHODS
METHODS
Qualitative interviews with 26 experienced health professionals and carers were used to explore their patients' and residents' unmet needs and end-of-life care options and to outline strategies to support them.
RESULTS
RESULTS
A range of challenges and unmet needs experienced by people with intellectual disabilities are presented in themes: (1) accommodation setting at the end of life: dying 'at home'; (2) personal factors and networks: a circle of support; (3) end-of-life medical care and decision-making. Strategies to facilitate good end-of-life care and a model of care are presented.
CONCLUSIONS
CONCLUSIONS
Well-prepared and collaborative disability and health service workforces are needed, together with flexible and adequate end-of-life funding to ensure compassionate and person-centred care.
Identifiants
pubmed: 30727802
doi: 10.1177/1744629518823887
doi:
Types de publication
Journal Article
Langues
eng
Sous-ensembles de citation
IM