End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers.
Neurological
carers
end-of-life
family
palliative
Journal
Palliative medicine
ISSN: 1477-030X
Titre abrégé: Palliat Med
Pays: England
ID NLM: 8704926
Informations de publication
Date de publication:
02 2021
02 2021
Historique:
pubmed:
27
11
2020
medline:
21
5
2021
entrez:
26
11
2020
Statut:
ppublish
Résumé
Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life. This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions. This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions. Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context. Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers' roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living. Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.
Sections du résumé
BACKGROUND
Family and friends are key providers of care for people living with a long-term neurological condition. Neurological conditions are a significant global contributor to disability and premature death. However, previous research suggests carers often struggle to access appropriate support at end of life.
AIMS
This review sought to synthesise qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with neurological conditions.
DESIGN
This was a meta-ethnographic synthesis of 38 qualitative studies discussing end-of-life and palliative issues for informal carers supporting people living with long-term neurological conditions.
DATA SOURCES
Qualitative articles published after January 2010 in English, addressing carers of people with long-term neurological conditions with regard to palliative care, end of life and/or bereavement. Papers were excluded if it was not possible to separately assess the views of carers. Quality appraisal was not undertaken, but consideration was given to research context.
RESULTS
Across the papers, five key themes were identified: the future (un)certainties in the progression of life-limiting neurological conditions; an information paradox of not receiving the right information at the right time; access to support; carers' roles in decision making around end of life; and maintaining continuity while facing change and disruption in day-to-day living.
CONCLUSIONS
Given the broad agreement on the challenges faced by carers of people living with long-term neurological conditions, future research should consider opportunities to improve information and support for this group, and the development and evaluation of practical models of service delivery.
Identifiants
pubmed: 33238811
doi: 10.1177/0269216320974262
pmc: PMC7897797
doi:
Types de publication
Journal Article
Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
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