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.
University of Lincoln, College of Social Science Research
Michael Toze, University of Lincoln, Lincoln Medical School
Mo Ray, University of Lincoln, School of Health and Social Care
Thomas George, University of Lincoln, School of Health and Social Care
Kelly Sisson, University of Lincoln, School of Health and Social Care
David Nelson, University of Lincoln, School of Health and Social Care