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dc.contributor.authorToze, M.
dc.contributor.authorRay, M.
dc.contributor.authorGeorge, T.
dc.contributor.authorSisson, K.
dc.contributor.authorNelson, D.
dc.date.accessioned2021-10-06T12:38:52Z
dc.date.available2021-10-06T12:38:52Z
dc.date.issued2021
dc.identifier.citationToze M, Ray M, George T, Sisson K, Nelson D. End of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carers. Palliative Medicine. 2021;35(2):335-354.en_US
dc.identifier.urihttps://hdl.handle.net/11250/2788159
dc.description.abstractBackground: 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.en_US
dc.publisherPalliative Medicineen_US
dc.rightsNavngivelse 4.0 Internasjonal*
dc.rights.urihttp://creativecommons.org/licenses/by/4.0/deed.no*
dc.subjectneurologicalen_US
dc.subjectpalliativeen_US
dc.subjectend-of-lifeen_US
dc.subjectcarersen_US
dc.subjectfamilyen_US
dc.titleEnd of life care for long-term neurological conditions: A meta-ethnographic review of the experiences of informal carersen_US
dc.typeJournal articleen_US
dc.source.pagenumber335-354en_US
dc.source.volume35en_US
dc.source.journalPalliative Medicineen_US
dc.source.issue2en_US
dc.identifier.doihttps://doi.org/10.1177%2F0269216320974262


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