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The potential therapeutic value for bereaved relatives participating in research: An exploratory study

Published online by Cambridge University Press:  29 October 2015

Alison Germain ,
Catriona R. Mayland  and
Barbara A. Jack
Alison Germain*
Affiliation:
Marie Curie Palliative Care Institute, Molecular and Clinical Cancer, University of Liverpool, Liverpool, United Kingdom
Catriona R. Mayland
Affiliation:
Marie Curie Palliative Care Institute, Molecular and Clinical Cancer, University of Liverpool, Liverpool, United Kingdom
Barbara A. Jack
Affiliation:
Faculty of Health and Social Care, Edge Hill University, Ormskirk, United Kingdom
*
Address correspondence and reprint requests to: Alison Germain, Marie Curie Palliative Care Institute, Molecular and Clinical Cancer, University of Liverpool, Cancer Research Centre, 200 London Road, Liverpool L3 9TA, United Kingdom. E-Mail: Alison.Germain@rlbuht.nhs.uk.
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Abstract

Objective:

Conducting research with the bereaved presents an immediate ethical challenge, as they are undoubtedly a vulnerable group, associated with high levels of distress and susceptible to both physical and mental health issues. A comprehensive understanding of the potential therapeutic benefits for bereaved relatives participating in palliative care research is limited, and therefore the ethics of engaging this group remain questionable.

Method:

This paper describes a secondary analysis of qualitative data collected in the Care of the Dying Evaluation (CODE) project, examining the experiences of patients who died at home. It explores the motivations and potential benefits for bereaved relatives participating in research with reference to the recently developed concepts in bereavement theory. Cognitive interviews were conducted with 15 bereaved relatives and secondary analysis using a content analysis framework was employed to classify the data.

Results:

The results center around six recurring concepts identified as adaptive in current bereavement theory: an opportunity to share the narrative accounts of the final hours of their relative's life; a search for sense and meaning in loss; an ongoing bond/attachment with the deceased; altruistic motivations; oscillation between loss and restorative orientations; and a sense of resilience. Overall, the participants found that taking part in the research was valuable and that it could be described as offering therapeutic benefits.

Significance of results:

The need for bereaved relatives to take part in research studies should be encouraged, as they provide an accurate proxy for the patient's experience of end-of-life care while also providing a valuable account of their own perspective as family member and carer. In addition, we highlight the need for ethics committees to be aware of the potential benefits for bereaved relatives participating in research of this kind.

Keywords

Palliative careEvaluation of careBereaved family carersResearch with bereavedTherapeutic value of participating
Type
Original Articles
Information
Palliative & Supportive Care , Volume 14 , Issue 5 , October 2016 , pp. 479 - 487
Copyright
Copyright © Cambridge University Press 2015 

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