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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: [email protected].
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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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References

REFERENCES

Addington-Hall, J. (2002). Researcher sensitivities to palliative care patients. European Journal of Cancer Care, 11, 320–224.CrossRefGoogle ScholarPubMed
Addington-Hall, J. & McPherson, C. (2001). After-death interviews with surrogates/bereaved family members: Some issues of validity. Journal of Pain and Symptom Management, 22(3), 784–790.CrossRefGoogle ScholarPubMed
Attig, T (1996). How we grieve: Relearning the world. New York: Oxford University Press.CrossRefGoogle Scholar
Beck, A.M & Konnert, C.A. (2007). Ethical issues in the study of bereavement: The opinions of bereaved adults. Death Studies, 31(9), 783–799.CrossRefGoogle Scholar
Bowlby, J. (1971). Attachment and loss. Vol. 1: Attachment. Harmondsworth: Pelican Books.Google Scholar
Calhoun, L. & Tedeschi, R.G (eds.) (2006). Handbook of posttraumatic growth. Mahwah, NJ: Lawrence Erlbaum Associates.Google Scholar
Ceci, S.J., Peters, D. & Plotkin, J. (1985). Human subjects review, personal values, and the regulation of social science research. The American Psychologist, 40, 994–1002.CrossRefGoogle Scholar
Cook, A.S. (1995). Ethical issues in bereavement research: An overview. Death Studies, 19(2), 103–122.CrossRefGoogle ScholarPubMed
Cook, A.S. & Bosley, G. (1995). The experience of participating in bereavement research: Stressful or therapeutic? Death Studies, 19(2), 157–170.CrossRefGoogle ScholarPubMed
Crenshaw, D.A. (1990). Bereavement: Counseling the grieving throughout the lifecycle. New York: Continuum.Google Scholar
Department of Health (2008). End-of-life care strategy: Promoting high-quality care for all adults at the end of life. Equality impact assessment. London: Department of Health.Google Scholar
Doka, K.J. (1999). Disenfranchised grief. Bereavement Care, 18(3), 37–39.CrossRefGoogle Scholar
Dyregrov, K. (2004). Bereaved parents' experience of research participation. Social Science & Medicine, 58(2), 391–400.CrossRefGoogle ScholarPubMed
Dyregrov, K., Dyregrov, A. &. Raundalen, M. (2000). Refugee families' experience of research participation. Journal of Traumatic Stress, 13, 413–426.CrossRefGoogle ScholarPubMed
Flory, J. & Emanuel, E. (2004). Interventions to improve research participants: Understanding in informed consent for research. The Journal of the American Medical Association, 292(13), 1593–1601.CrossRefGoogle ScholarPubMed
Gysels, M., Shipman, C. & Higginson, I.J. (2008). I will do it if it will help others: Motivations among patients taking part in qualitative studies in palliative care. Journal of Symptom and Pain Management, 35(4), 347–355.CrossRefGoogle Scholar
Hynson, J.L., Aroni, R., Bauld, C., et al. (2006). Research with bereaved parents: A question of how, not why. Palliative Medicine, 20, 805–811.CrossRefGoogle Scholar
Klass, D. (2006). Continuing conversation about continuing bonds. Death Studies, 30(9), 843–858.CrossRefGoogle ScholarPubMed
Klass, D., Silverman, P.R. & Nickman, S.L. (eds.) (1996). Continuing bonds: New understandings of grief. Washington, DC: Taylor & Francis.Google Scholar
Koffman, J., Higginson, I.J., Hall, S., et al. (2012). Bereaved relatives' views about participating in cancer research. Palliative Medicine, 26(4), 379–383.CrossRefGoogle ScholarPubMed
Krippendorff, K. (1980). Content analysis: An introduction to its methodology. Newbury Park, CA: Sage Publications.Google Scholar
Machin, L. (2006). The landscape of loss. Bereavement Care, 25(1), 7–11.CrossRefGoogle Scholar
Mayland, C.R., Williams, E.M.I. & Ellershaw, J.E. (2012). Assessing quality of care for the dying: The development and initial validation of a postal self-completion questionnaire for bereaved relatives. Palliative Medicine, 26(7), 897–907.CrossRefGoogle ScholarPubMed
Mayland, C.R., Williams, E.M.I., Addington-Hall, J., et al. (2014). Assessing the quality of care for dying patients from the bereaved relatives' perspective: Further validation of “Evaluating Care and Health Outcomes—for the Dying.” Journal of Pain and Symptom Management, 47(4), 687–696.CrossRefGoogle Scholar
Neimeyer, R.A. (ed.) (2001). Meaning reconstruction and the experience of loss. Washington, DC: American Psychological Association.CrossRefGoogle Scholar
Parkes, C.M. (1972). Components of the reaction to loss of a limb, spouse or home. Journal of Psychosomatic Research, 16(5), 343–349.CrossRefGoogle ScholarPubMed
Parkes, C.M. (1995). Guidelines for conducting ethical bereavement research. Death Studies, 19(2), 171–181.CrossRefGoogle ScholarPubMed
Parkes, C.M. (1996). Bereavement: Studies of grief in adult life, 3rd ed. London: Routledge.Google Scholar
Riches, G. & Dawson, P (1996). Communities of feeling: The culture of bereaved parents. Mortality, 1, 143–161.CrossRefGoogle Scholar
Robertson, J., Jay, J. & Welch, S. (1997). Can data collection during the grieving process be justifiable? British Journal of Nursing, 6, 759–764.CrossRefGoogle ScholarPubMed
Rogers, C.R. (1959). A theory of therapy, personality, and interpersonal relationships, as developed in the client-centered framework. In Psychology: A study of a science, Vol. 3. Koch, S. (ed.), pp. 184–256. New York: McGraw-Hill.Google Scholar
Rosenblatt, P. (1995). Ethics of qualitative interviewing with grieving families. Death Studies, 19, 139–155.CrossRefGoogle ScholarPubMed
Sandelowski, M. (1995). Qualitative analysis: What it is and how to begin? Research in Nursing & Health, 18, 371–375.CrossRefGoogle ScholarPubMed
Sanders, C.M. (1989). Grief: The mourning after: Dealing with adult bereavement. New York: Wiley.Google Scholar
Seymour, J., Payne, S., Reid, D., et al. (2005). Ethical and methodological issues in palliative care studies: The experiences of a research group. Journal of Research in Nursing, 10(2), 169–188.CrossRefGoogle Scholar
Stiel, S., Heckel, M., Bussmann, S., et al. (2015). End-of-life care research with bereaved informal caregivers: Analysis of recruitment strategy and participation rate from a multi-centre validation study. BMC Palliative Care, 14(21). doi: 10.1186/s12904-015-0020-4. Available from http://www.biomedcentral.com/1472-684X/14/21.CrossRefGoogle ScholarPubMed
Stroebe, M. (2003). Bereavement research: Methodological issues and ethical concerns. Palliative Medicine, 17(3), 235–240.CrossRefGoogle ScholarPubMed
Stroebe, M. & Schut, H. (1999). The dual process model of coping with bereavement: Rationale and description. Death Studies, 23(3), 197–224.Google ScholarPubMed
Stroebe, M., Stroebe, W. & Hansson, R.O. (eds.) (1993). Handbook of bereavement: Theory, research, and intervention. New York: Cambridge University Press.CrossRefGoogle Scholar
Vickio, C.J. (1999). Together in spirit: Keeping our relationships alive when loved ones die. Death Studies, 23(2), 161–175.CrossRefGoogle ScholarPubMed
Walters, T. (2000). Grief narratives: The role of medicine in the policing of grief. Anthropology & Medicine, 7(1), 97–114.CrossRefGoogle Scholar
Worden, W. (1991). Grief counseling and grief therapy: A handbook for the mental health practitioner, 2nd ed. New York: Springer.Google Scholar