Participatory action research (PAR) is a collaborative approach to inquiry for education and social change that is gaining increasing prominence in health education. This case study explores the use of PAR by and with a community of people with disabilities in addressing a polarizing issue in that community: death with dignity or physician-assisted suicide legislation. Following a brief review of the debate within the community about this issue and the goals, methods, and findings of this project, the authors examine four key ethical challenges. These are dilemmas in issue selection when the community is deeply divided over a problem area, inclusion and exclusion in study team makeup and sample selection, insider/outsider issues, and how best to use findings in ways that can unite and strengthen the community. The implications of these issues for health educators and others engaged in community-based PAR efforts are presented.
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References
1.
1. George MA, Daniel M, Green LW: Appraising and funding participatory research in health promotion. Int Q Community Health Educ18(2):181-197, 1998-1999.
2.
2. Gaventa J: Participatory action research in North America. Convergence14:30-42, 1981.
3.
3. Hagey RS: Guest editorial: The use and abuse of participatory action research. Chron Dis Canada18(1):1-4, 1997.
4.
4. NyswanderD: Education forhealth: Some principles and theirapplication. California Health14(November):65-70, 1956.
5.
5. Battin MP, Rhodes R, Silvers A (eds.): Physician-Assisted Suicide: Expanding the Debate.New York, Routledge, 1998.
6.
6. Wolfe K: Choice or coercion?New Mobility10(67):42-47, 1997.
7.
7. Oregon Health Division: Oregon’s Death With Dignity Act: Three Years of Legalized Physician-Assisted Suicide. Portland, State of Oregon, Department of Human Services, February 22, 2001.
8.
8. Vacco v. Quill, 117-117 Sup. Ct. 2293 (1997).
9.
9. Washington v. Glucksberg, 117-117 Sup. Ct. 2258 (1997).
10.
10. Bickenbach, JE: Disability and life-ending decisions, in Battin MP, Rhodes R, Silvers A (eds.): Physician-Assisted Suicide: Expanding the Debate (chap. 7). New York, Routledge, 1998, pp. 123-132.
11.
11. Batavia AI: Disability and physician-assisted suicide. N Engl J Med336(23):1671-1673, 1997.
12.
12. Toy A: Assisted suicide: Issues of life and death. New Mobility Disability Culture and Lifestyle10(72):34-42, 1999.
13.
13. National Council on Disability: Assisted Suicide: A Disability Perspective. Position Paper, March 24, 1997.
14.
14. Madorsky JG: Is the slippery slope steeper for people disabilities?West J Med166(6):410-411, 1997.
15.
15. Not Dead Yet and ADAPT: Amici Curiae Brief, in Support of Petitioners in Vacco v. Quill, US Sup. Ct., No. 95-1858, October Term 1995.
16.
16. Americans With Disabilities Act, 42 United States Congress, 1990.
17.
17. Corbet B: Editorial. Community assist. New Mobility Disability Culture and Lifestyle10:71:4-4, 1999; and Editorial. Absolutely right. New Mobility10(72):4-4, 1999.
18.
18. Israel BA, Schultz AJ, Parker EA, Becker AB: Review of community-based research: Assessing partnership approaches to improve public health. Annu Rev Public Health19:173-202, 1998.
19.
19. Bell E: Infusing race into the discourse on action research, in Reason P, Bradbury H (eds.): Handbook of Action Research: Participative Inquiry and Practice. London, Sage, 2001.
20.
20. Maguire P: Doing Participatory Research: A Feminist Approach. Amherst, MA, Center for International Education, 1987.
21.
21. Israel BA: Social networks and social support: Implications for natural helper and community level interventions. Health Educ Q12(1):65-80, 1985.
22.
22. Watters JK, Biernacki P: Targeted sampling: Options for study of hidden populations. Soc Problems36(4):416-430, 1989.
23.
23. Fadem P: Attitudes of People With Disabilities Toward Death With Dignity/Physician Assisted Suicide Legislation: Broadening the Dialogue. Master’s thesis, University of California, Berkeley, School of Public Health, 2001.
24.
24. MinklerM, Pies C: Ethical issues in community organization and community participation, in MinklerM (ed.): Community Organizing and Community Building for Health. New Brunswick, NJ, Rutgers University Press, 1997, pp. 120-136.
25.
25. Labonte R: Community, community development, and the forming of authentic partnerships, in MinklerM (ed.): Community Organizing and Community Building for Health. New Brunswick, NJ, Rutgers University Press, 1997, pp. 88-102.
26.
26. Reason P: Participation in Human Inquiry. London, Sage, 1994.
27.
27. Braithwaite RL, Biandi C, Taylor SE: Ethnographic approach to community organizing and health empowerment. Health Educ Q21(3):407-416, 1994.
28.
28. Nyden P, Wiewel W: Collaborative research: Harnessing the tensions between researcher and practitioner. Am Sociol23(4):43-55, 1992.
29.
29. Sclove R: Research by the people, for the people. Futures29(6):541-549, 1997.
30.
30. Stoecker R: Are academics irrelevant? Roles for scholars in participatory research. Am Behav Sci42(5):840-854, 1999.
31.
31. Sullivan M, Kone A, Senturia K, Chrisman N, Ciske S, Krieger J: Researcher and research end community perspectives: Toward bridging the gap. Health Educ Behav28(2):130-149, 2001.
32.
32. Wallerstein N: Power between evaluator and community: Research relationships within New Mexico’s healthier communities. Soc Sc Med49:39-53, 1999.
33.
33. Sohng S: Participatory research and community organizing. J Sociol Soc Welfare23(4):77-97, 1996.
34.
34. Coleman D: Assisted suicide and disability: Another perspective. Human Rights27(1):6-8, 2000.
35.
35. Roe KM, Minkler M, Saunders FF: Combining research, advocacy and education: The methods of the Grandparent Caregiver Study. Health Educ Q22(4):459-775, 1995.
36.
36. Heilig S, Brody RV: Physician-hastened death and end-of-life care: Development of community-wide consensus statement and guidelines. Camb Q Healthc Ethics7:223-225, 1998.
37.
37. Lee MA, Nelson HD, Tildren VP, Ganzini L, et al:Legalizing assisted suicide—Views of physicians in Oregon. NEJM334(5):310-315, 1996.
38.
38. Meier DE, Emmons CA, Wallenstein S, Quill T, Morrison RS, Cassel CK: A national survey of physicians-assisted suicide and euthanasia in the United States. NEJM338(17):1193-1200, 1998.
39.
39. Roe KM, Berenstein C, Goette C, Roe K: Community building through empowerment evaluation: A case study of HIV prevention community planning, in Minkler M (ed.): Community Organizing and Community Building for Health. New Brunswick, NJ, Rutgers University Press, 1997, pp. 308-322.
