Home > Research > Publications & Outputs > The views of adults with neurodegenerative dise...

Electronic data

  • 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

View graph of relations

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

Standard

The views of adults with neurodegenerative diseases on end-of-life care : a metasynthesis. / Regan, Laurence; Preston, Nancy Jean; Eccles, Fiona Juliet Rosalind; Simpson, Jane.

In: Aging and Mental Health, 06.11.2017.

Research output: Contribution to journalJournal article

Harvard

APA

Vancouver

Author

Bibtex

@article{95198dfe49a244debf71d1559b31a057,
title = "The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis",
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{\textquoteright} 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.",
keywords = "Neurodegenerative disease, end-of-life care, palliative care, qualitative, metasynthesis",
author = "Laurence Regan and Preston, {Nancy Jean} and Eccles, {Fiona Juliet Rosalind} and Jane Simpson",
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",
year = "2017",
month = nov
day = "6",
language = "English",
journal = "Aging and Mental Health",
issn = "1360-7863",
publisher = "Taylor and Francis Ltd.",

}

RIS

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 -