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
Research output: Contribution to Journal/Magazine › Journal article › peer-review
Research output: Contribution to Journal/Magazine › Journal article › peer-review
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TY - JOUR
T1 - The views of adults with neurodegenerative diseases on end-of-life care
T2 - a metasynthesis
AU - Regan, Laurence
AU - Preston, Nancy Jean
AU - Eccles, Fiona Juliet Rosalind
AU - Simpson, Jane
N1 - 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
PY - 2017/11/6
Y1 - 2017/11/6
N2 - 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.
AB - 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.
KW - Neurodegenerative disease
KW - end-of-life care
KW - palliative care
KW - qualitative
KW - metasynthesis
M3 - Journal article
JO - Aging and Mental Health
JF - Aging and Mental Health
SN - 1360-7863
ER -