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  • End of life neurodegensept2017 for pure

    Rights statement: This is an Accepted Manuscript of an article published by Taylor & Francis in Aging & Mental Health on 06/11/2017, available online: http://www.tandfonline.com/10.1080/13607863.2017.1396578

    Accepted author manuscript, 965 KB, PDF-document

    Available under license: CC BY-NC: Creative Commons Attribution-NonCommercial 4.0 International License

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The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis

Research output: Contribution to journalJournal article

E-pub ahead of print
<mark>Journal publication date</mark>6/11/2017
<mark>Journal</mark>Aging and Mental Health
Number of pages9
StateE-pub ahead of print
Early online date6/11/17
Original languageEnglish

Abstract

Objective: Improving end-of-life care for people with neurodegenerative diseases is seen as a clinical priority. In order to do this, it is important to take into account the views expressed by people with these conditions on their experiences of this care. The purpose of this review was to provide a thematic synthesis of the views of adults with neurodegenerative diseases on end-of-life care.

Methods: After a systematic search, 13 articles were included and thematic synthesis was used to collate and interpret findings.

Results: Four analytical themes were identified; (1) Importance of autonomy and control; (2) Informed decision-making and the role of healthcare professionals; (3) Contextual factors in decision-making; (4) The pitfalls of care.

Conclusion: Participants’ views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.

Bibliographic note

This is an Accepted Manuscript of an article published by Taylor & Francis in Aging & Mental Health on 06/11/2017, available online: http://www.tandfonline.com/10.1080/13607863.2017.1396578