The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review.
Motor neurone disease
amyotrophic lateral sclerosis
caregivers
palliative care
qualitative research
systematic review
Journal
Palliative medicine
ISSN: 1477-030X
Titre abrégé: Palliat Med
Pays: England
ID NLM: 8704926
Informations de publication
Date de publication:
06 2020
06 2020
Historique:
pubmed:
15
4
2020
medline:
29
4
2021
entrez:
15
4
2020
Statut:
ppublish
Résumé
Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. A systematic review of qualitative research conducted using Thematic Synthesis - PROSPERO registration CRD42017075311. Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients' and carers' experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.
Sections du résumé
BACKGROUND
Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services.
AIM
To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory.
DESIGN
A systematic review of qualitative research conducted using Thematic Synthesis - PROSPERO registration CRD42017075311.
DATA SOURCES
Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality.
RESULTS
A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients' and carers' experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement.
CONCLUSION
The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.
Identifiants
pubmed: 32286157
doi: 10.1177/0269216320908775
pmc: PMC7444021
doi:
Types de publication
Journal Article
Research Support, Non-U.S. Gov't
Systematic Review
Langues
eng
Sous-ensembles de citation
IM
Pagination
708-730Subventions
Organisme : Marie Curie
ID : MCRGS-07-16-16
Pays : United Kingdom
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