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

Regan, Laurence and Preston, Nancy Jean and Eccles, Fiona Juliet Rosalind and Simpson, Jane (2017) The views of adults with neurodegenerative diseases on end-of-life care : a metasynthesis. Aging and Mental Health. ISSN 1360-7863

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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.

Item Type:
Journal Article
Journal or Publication Title:
Aging and Mental Health
Additional Information:
This is an Accepted Manuscript of an article published by Taylor & Francis in Aging & Mental Health on 06/11/2017, available online:
Uncontrolled Keywords:
?? neurodegenerative diseaseend-of-life carepalliative carequalitativemetasynthesisgerontologygeriatrics and gerontologypsychiatry and mental healthphychiatric mental health ??
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Deposited On:
23 Oct 2017 15:26
Last Modified:
15 Jan 2024 00:14