Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper
Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper
Objectives: to present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: the main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: the ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
Adult, Aged, Aged, 80 and over, Attitude of Health Personnel, Biomedical Research/standards, Consensus, Female, Guidelines as Topic, Home Care Services/statistics & numerical data, Hospice Care/psychology, Humans, Interviews as Topic/standards, Male, Middle Aged, Palliative Care/psychology, Qualitative Research, Research Personnel/psychology, Terminal Care/psychology, Terminally Ill/psychology
e14
Sivell, Stephanie
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Prout, Hayley
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Hopewell-Kelly, Noreen
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Baillie, Jessica
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Byrne, Anthony
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Edwards, Michelle
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Harrop, Emily
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Noble, Simon
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Sampson, Catherine
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Nelson, Annmarie
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March 2019
Sivell, Stephanie
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Prout, Hayley
9f9a8cbd-a865-4501-9348-2f8eb710ebe9
Hopewell-Kelly, Noreen
a21b7fde-e834-4a1c-8b12-45f61d0e6b8e
Baillie, Jessica
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Byrne, Anthony
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Edwards, Michelle
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Harrop, Emily
01114a0a-f1c8-4d71-aaff-c50365561ddd
Noble, Simon
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Sampson, Catherine
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Nelson, Annmarie
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Sivell, Stephanie, Prout, Hayley, Hopewell-Kelly, Noreen, Baillie, Jessica, Byrne, Anthony, Edwards, Michelle, Harrop, Emily, Noble, Simon, Sampson, Catherine and Nelson, Annmarie
(2019)
Considerations and recommendations for conducting qualitative research interviews with palliative and end-of-life care patients in the home setting: a consensus paper.
BMJ Supportive & Palliative Care, 9 (1), .
(doi:10.1136/bmjspcare-2015-000892).
Abstract
Objectives: to present and discuss the views of researchers at an academic palliative care research centre on research encounters with terminally ill patients in the home setting and to generate a list of recommendations for qualitative researchers working in palliative and end-of-life care.
Methods: eight researchers took part in a consensus meeting to discuss their experiences of undertaking qualitative interviews. The researchers were of varying backgrounds and all reported having experience in interviewing terminally ill patients, and all but one had experience of interviewing patients in their home environment.
Results: the main areas discussed by researchers included: whether participation in end-of-life research unintentionally becomes a therapeutic experience or an ethical concern; power relationships between terminally ill patients and researchers; researcher reflexivity and reciprocity; researchers' training needs. Qualitative methods can complement the home environment; however, it can raise ethical and practical challenges, which can be more acute in the case of research undertaken with palliative and patients at the end-of-life.
Conclusions: the ethical and practical challenges researchers face in this context has the potential to place both participant and researcher at risk for their physical and psychological well-being. We present a set of recommendations for researchers to consider prior to embarking on qualitative research in this context and advocate researchers in this field carefully consider the issues presented on a study-by-study basis.
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More information
Accepted/In Press date: 7 October 2015
e-pub ahead of print date: 8 December 2015
Published date: March 2019
Additional Information:
Published by the BMJ Publishing Group Limited. For permission to use (where not already granted under a licence) please go to http://www.bmj.com/company/products-services/rights-and-licensing/.
Keywords:
Adult, Aged, Aged, 80 and over, Attitude of Health Personnel, Biomedical Research/standards, Consensus, Female, Guidelines as Topic, Home Care Services/statistics & numerical data, Hospice Care/psychology, Humans, Interviews as Topic/standards, Male, Middle Aged, Palliative Care/psychology, Qualitative Research, Research Personnel/psychology, Terminal Care/psychology, Terminally Ill/psychology
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Local EPrints ID: 475924
URI: http://eprints.soton.ac.uk/id/eprint/475924
ISSN: 2045-435X
PURE UUID: d5b396dc-0931-4a04-9a55-36516bc68907
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Date deposited: 31 Mar 2023 16:32
Last modified: 17 Mar 2024 01:27
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Contributors
Author:
Stephanie Sivell
Author:
Hayley Prout
Author:
Noreen Hopewell-Kelly
Author:
Jessica Baillie
Author:
Anthony Byrne
Author:
Michelle Edwards
Author:
Emily Harrop
Author:
Simon Noble
Author:
Catherine Sampson
Author:
Annmarie Nelson
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