Methodological and ethical aspects of evaluation research in bereavement
A reflection
Keywords:
Evaluation, methodology, measures, outcomes, hospiceAbstract
AbstractBereavement services, in common with all health, social care and counselling programmes and interventions, are increasingly required to demonstrate their clinical and cost effectiveness. This paper describes the main ethical and practical issues raised for one service (a hospice-based bereavement support service), and how they were overcome. It offers advice to other organisations and researchers on important aspects of the process, including the need to ensure good relationships with staff and professional supervision and support for the researcher. It also challenges the common view that participation in research may be harmful for bereaved people. Participants in this survey welcomed the chance to talk about their feelings, and to make a contribution to furthering understanding of the bereavement experience.
References
Balk, D. 1995. Bereavement research using control groups: ethical obligations and questions. Death Studies, 19(2): 123–138.
Bereavement Care Standards: UK Project 2001 . Bereavement care standards: Bereavement Network . London : London Bereavement Network .
Boelen, P, Keijser, J, van den Hout, M and van den Bout, J. 2007. Treatment of complicated grief: a comparison between cognitive–behavioural therapy and supportive counselling. Journal of Counselling Psychology, 75(2): 277–284.
Brabin, J and Berah, E. 1995. Dredging up past traumas: harmful or helpful?. Psychiatry, Psychology and Law, 1: 156–171.
British Association for Counselling and Psychotherapy 2010 . Ethical framework for good practice in counselling and psychotherapy . London : British Association for Counselling and Psychotherapy .
British Psychological Society 2005 . Professional practice guidelines . London : British Psychological Society .
Carver, C. 1997. You want to measure coping but your protocol's too long: consider the Brief COPE. International Journal of Behavioural Medicine, 4: 92–100.
Chambless, D and Holton, S. 1998. Defining empirically supported therapies. Journal of Consulting and Clinical Psychology, 66(1): 7–18.
Contro, N, Larson, J and Scofield, S. 2002. Family perspectives on the quality of paediatric palliative care. Archives of Paediatric Adolescent Medicine, 156: 14–19.
Cook, A and Bosley, G. 1995. The experience of participating in bereavement research: stressful or therapeutic. Death Studies, 19(2): 157–170.
Deane, F, Wilson, C and Ciarrochi, J. 2001. Suicidal ideation and help negation: not just hopelessness or prior help. Journal of Clinical Psychology, 57: 1–14.
Department of Psychology, NUI Maynooth 2007 . Guidance for safe working practice in psychological research . Dublin : NUI Maynooth .
Derogatis, L. 2001. BSI 18: Administration, scoring and procedures manual, Minneapolis: NCS Pearson.
Dyregrov, K. 2004. Bereaved parents’ experience of research participation. Social Science and Medicine, 58: 391–400.
Ewing, J. 1984. Detecting alcoholism: the CAGE questionnaire. Journal of American Medical Association, 252: 1905–1907.
Faschingbauer, T, Zistook, S and Devaul, R. 1987. The Texas revised inventory of grief, Washington, DC: American Psychiatric Association.
Field, D, Reid, D, Payne, S and Relf, M. 2004. Survey of UK hospice and specialist palliative care adult bereavement services. International Journal of Palliative Nursing, 10(12): 569–576.
Field, D, Reid, D, Payne, S and Relf, M. 2005. Adult bereavement support services in five hospices in England, London: The Health Foundation.
Gallagher, M, Tracey, A and Millar, R. 2005. Ex-clients’ evaluation of bereavement counselling in a voluntary sector agency. Psychology and Psychotherapy: Theory, Research and Practice, 78: 59–76.
Genevro, J. 2003. Report on bereavement and grief research, Washington, DC: Centre for the Advancement of Health.
Hogan, N, Greenfield, D and Schmidt, L. 2001. Development and validation of the Hogan grief reaction checklist. Death Studies, 25: 1–32.
Hynson, J, Aroni, R and Sawyer, S. 2006. Research with bereaved parents:a question of how, not why. Palliative Medicine, 20: 805–811.
Jerusalem, M and Schwarzer, R. 1992. “Self-efficacy as a resource factor in stress appraisal processes”. In Thought control of action, Edited by: Schwarzer, R. Washington, DC: Hemisphere.
Jordan, J and Neimeyer, R. 2003. Does grief counselling work?. Death Studies, 27: 765–786.
Kang, H and Yoo, Y. 2007. Effects of a bereavement intervention program in middle-aged widows in Korea. Archives of Psychiatric Nursing, 21(3): 132–140.
Marquis, R. 1996. A qualitative evaluation of a bereavement service: an analysis of the experiences of consumers and the providers of services in Australia. The American Journal of Hospice and Palliative Care, 13: 38–43.
National Advisory Committee in Palliative Care (NACPC) 2001 . The report of the National Advisory Committee on Palliative Care . Dublin : Department of Health and Children .
National Institute for Clinical Excellence (NICE) 2004 . Improving supportive and palliative care for adults with cancer: the manual . London : NICE .
Newsom, C, Wilson, S, Birrell, J, Stroebe, M and Schut, H. 2011. Practitioners and researchers working together in an intervention efficacy study: a fine example of synergy. Bereavement Care, 30(1): 16–20.
Parkes, C. 1995. Guidelines for conducting ethical bereavement research. Death Studies, 19: 171–181.
Payne, S. 2002. Dilemmas in the use of volunteers to provide hospice bereavement support: evidence from New Zealand. Mortality, 7(2): 139–154.
Prigerson, H, Frank, E, Kasl, S, Reynolds, C, Anderson, B, Zubenkp, G, Houck, P, George, C and Kupfer, D. 1995. Complicated grief and bereavement-related depression as distinct disorders: preliminary empirical validation in elderly bereaved spouses. American Journal of Psychiatry, 152(1): 22–31.
Relf M 2000 . The effectiveness of volunteer bereavement care: an evaluation of a palliative care bereavement service . Unpublished doctoral dissertation . London : Goldsmith College, University of London .
Roberts, A and McGilloway, S. 2008. The nature and use of bereavement support services in a hospice setting. Palliative Medicine, 22: 612–625.
Roberts, A and McGilloway, S. 2010. Bereavement support in a palliative care setting: the role of an information and advice service. Bereavement Care, 29(1): 14–18.
Rolls, L and Relf, M. 2006. Bracketing interviews: addressing methodological challenges in qualitative interviewing in bereavement and palliative care. Mortality, 11(3): 286–305.
Rosenblatt, P. 1995. Ethics of qualitative interviewing with grieving families. Death Studies, 19: 139–155.
Schut H 2005 . Balancing research and counselling . Paper presented at the 7th International Conference on Grief and Bereavement in Contemporary Society, Kings College , London .
Schut, H and Stroebe, M. 2005. Interventions to enhance adaptation to bereavement. Journal of Palliative Medicine, 8(1): 140–147.
Schut, H, Stroebe, M, van den Bout, J and Terheggen, M. 2001. “The efficacy of bereavement interventions: determining who benefits”. In Handbook of bereavement research: consequences coping and care, Edited by: Stroebe, M, Hansson, R, Stroebe, W and Schut, H. 705–738. Washington, DC: American Psychological Society.
Scott, D, Valery, P and Boyle, F. 2002. Does research into sensitive areas do harm? Experiences of research participation after a child's diagnosis with Ewing's sarcoma. The Medical Journal of Australia, 177: 507–510.
Seamark, D, Gilbert, J, Lawrence, C and Williams, S. 2000. Are post bereavement research interviews distressing to carers? Lessons learned from palliative care research. Palliative Medicine, 1: 55–56.
Stroebe, W and Stroebe, M. 1993. “Determinants of adjustment to bereavement”. In Handbook of bereavement: theory, research and intervention, Edited by: Stroebe, M, Stroebe, W and Hansson, R. 208–226. New York: Cambridge University Press.
Stroebe, M, Hansson, R, Stroebe, W and Schut, H. 2001. “Introduction:concepts and issues in contemporary research in bereavement”. In Handbook of bereavement research: consequences coping and care, Edited by: Stroebe, M, Hansson, R, Stroebe, W and Schut, H. 3–22. Washington, DC: American Psychological Society.
Thomas J , Baker D , Kassner C 2006 . The Colorado bereavement services project: bereavement assessment and outcomes . Paper presented at the 7th Clinical Team Conference of the National Hospice and Palliative Care Organisation , 26–28 April , San Diego, CA .
Walsh, T, Foreman, M and Curry, P. 2007. Beaumont hospital bereavement care service: evaluation of the service, Dublin: School of Social Work & Social Policy, Trinity College Dublin.
Ware, J, Kosinski, M and Keller, S. 1996. A12-item short-form health survey: construction of scales and preliminary tests of reliability and validity. Medical Care, 34(3): 220–233.
Wimpenny, P. 2007. Literature review on bereavement and bereavement care, Aberdeen: The Robert Gordon University and Joanna Briggs Institute.
Zimet, G, Dahlem, N, Zimet, S and Farley, G. 1988. The multidimensional scale of perceived social support. Journal of Personality Assessment, 52(1): 30–41.
