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The potential therapeutic value for bereaved relatives participating in research: An exploratory study
Alison Germain1, Catriona R Mayland1, Barbara A Jack2
1Marie Curie Palliative Care Institute,Molecular and Clinical Cancer,University of Liverpool,Liverpool,United Kingdom.
Palliative & Supportive Care
|October 30, 2015
Summary
Participating in palliative care research offers therapeutic benefits for bereaved relatives, aiding in sense-making and resilience. Encouraging their involvement provides valuable insights into end-of-life care experiences.
Area of Science:
- Palliative Care Research
- Bereavement Studies
- Qualitative Health Research
Background:
- Bereaved individuals are a vulnerable population requiring careful ethical consideration in research.
- Understanding the therapeutic potential for bereaved relatives in palliative care research is crucial.
Purpose of the Study:
- To explore the motivations and potential therapeutic benefits for bereaved relatives participating in palliative care research.
- To examine the experiences of bereaved relatives within the context of end-of-life care research.
Main Methods:
- Secondary analysis of qualitative data from the Care of the Dying Evaluation (CODE) project.
- Cognitive interviews with 15 bereaved relatives.
- Content analysis framework to classify data related to bereavement theory.
Main Results:
- Six adaptive concepts emerged: narrative sharing, sense-making, maintaining bonds, altruism, adaptive orientation oscillation, and resilience.
- Participants reported that involvement in research was valuable and offered therapeutic benefits.
Conclusions:
- Engaging bereaved relatives in research is beneficial, offering proxy patient experience and unique family perspectives.
- Ethics committees should recognize the potential therapeutic advantages for bereaved participants in end-of-life research.
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