In this article I examine some issues involved in researching vulnerable populations and sensitive issues, and the challenges and risks of researching issues of a deeply personal nature. Participants might have complex needs and vulnerabilities, but they also have many resources to ensure their own well-being. I ask researchers to move beyond the minimum standards espoused by human ethics committees, and utilize participant strengths to further reduce the risk of harm. My reflections on a study of older people who were experiencing family estrangement highlight some of the actions that participants used to increase their personal safety. I discuss the usefulness of “strengths” questions in assessing risk and facilitating participant strengths to minimize harm. Finally, I propose a three-way model for reducing risk that involves the “lessons learned” from ethics committees, researchers, and the participants themselves.
Agllias, K. ( 2011). No longer on speaking terms: The losses associated with family estrangement at the end of life. Families in Society: The Journal of Contemporary Human Services, 92(1), 107-113. doi:10.1606/1044-3894.4053
2.
Allen, P.R. ( 2003). Depression: A symptom of cutoff in relationship processes . In P. Titleman (Ed.), Emotional cutoff: Bowen family systems theory perspectives (pp. 315-336). New York: Haworth Clinical Practice Press.
3.
Beaver, K., Luker, K., & Woods, S. ( 1999). Conducting research with the terminally ill: Challenges and considerations. International Journal of Palliative Nursing , 5(1), 13-17.
4.
Cain, H.I., Harkness, J.L., Smith, A.L., & Markowski, E.M. (2003). Protecting persons in family therapy research: An overview of ethical and regulatory standards. Journal of Marital and Family Therapy, 29(1), 47-57.
5.
de Melo-Martin, I., & Ho, A. ( 2008). Beyond informed consent: The therapeutic misconception and trust. Journal of Medical Ethics, 34(3), 202-205. doi:10.1136/jme.2006.019406
6.
Dickson-Swift, V., James, E.L., & Kippen, S. ( 2005). Do university ethics committees adequately protect public health researchers? Australian New Zealand Journal of Public Health, 29(6), 576-579.
7.
Dickson-Swift, V., James, E.L., Kippen, S., & Liamputtong, P. (2006). Blurring boundaries in qualitative health research on sensitive topics. Qualitative Health Research, 16, 853-871. doi:10.1177/1049732306287526
8.
Dickson-Swift, V., James, E.L., Kippen, S., & Liamputtong, P. (2008). Risk to researchers in qualitative research on sensitive topics: Issues and strategies. Qualitative Health Research, 18, 133-144. doi:10.1177/1049732307309007
9.
Dickson-Swift, V., James, E.L., & Liamputtong, P. (2008). Undertaking sensitive research in the health and social sciences: Managing boundaries, emotions and risks . Cambridge, MA: Cambridge University Press.
10.
Dyregrov, K. ( 2004). Bereaved parents experience of research participation . Social Science and Medicine, 58, 391-400. doi:10.1016/50277-9536(03)00205-3
11.
Etherington, K. ( 2005). Working with traumatic stories: From transcriber to witness . International Journal of Social Research Methodology, 10(2), 85-97. doi:10.1080/ 13645570701334001
12.
Gledhill, S.A., Abbey, J.B., & Schweitzer, R.E. (2008). Sampling methods: Methodological issues involved in the recruitment of older people into a study of sexuality . Australian Journal of Advanced Nursing, 26(1), 84-94.
13.
Goode, S. ( 2000). Researching a hard-to-access and vulnerable population: Some considerations on researching drug and alcohol-using mothers. Sociological Research Online, 5(1). Retrieved from http://www.socresonline.org.uk/5/1/goode.html
14.
Goodrum, S., & Keys, J.L. ( 2007). Reflections on two studies of emotionally sensitive topics: Bereavement from murder and abortion. International Journal of Social Research Methodology, 10(4), 249-258. doi:10.1080/ 13645570701400976
15.
Hewitt, J. ( 2007). Ethical components of researcher-researched relationships in qualitative interviewing. Qualitative Health Research, 17, 1149-1159. doi:10.1177/1049732307308305
16.
Johnson, B., & Macleod Clarke, J. (2003). Collecting sensitive data: The impact on researchers. Qualitative Health Research , 13, 421-434. doi:10.1177/1049732302250340
17.
Karnieli-Miller, O., Strier, R., & Pessach, L. ( 2009). Power relations in qualitative research. Qualitative Health Research, 19, 279-289. doi:10.1177/1049732308329306
18.
Kavanaugh, K., & Ayres, L. ( 1998). "Not as bad as it could have been": Assessing and mitigating harm during interviews on sensitive topics. Research in Nursing and Health, 21(1), 91-97. doi:10.1002/(SICI)1098-240X(199802)
19.
Kavanaugh, K., Moro, T.T., & Mehendale, R. ( 2006). Enacting a theory of caring to recruit and retain vulnerable participants for sensitive research. Research in Nursing and Health, 29(3), 244-252.
20.
Kitson, G.C., Clark, R.D., Rushforth, N.B., Brinich, P.M., Sudak, H.S., & Zyzanski, S.J. (1996). Research on difficult family topics: Helping new and experienced researchers cope with research on loss . Family Relations, 45(2), 183-188.
21.
Klever, P. ( 2003). Marital functioning and multigenerational fusion and cutoff. In P. Titelman (Ed.), Emotional cutoff: Bowen family systems theory perspectives (pp. 219-242). New York: Haworth Clinical Practice Press.
22.
Lalor, J.G., Begley, C.M., & Devane, D. ( 2006). Exploring painful experiences: Impact of emotional narratives on members of a qualitative research team. Journal of Advanced Nursing56(6), 607-616. doi:10.1111/j.1365-2648.2006.04039.x
23.
Langford, D.R. ( 2000). Developing a safety protocol in qualitative research involving battered women. Qualitative Health Research, 10, 133-142. doi:10.1177/104973200129118192
24.
LeBey, B. ( 2001). Family estrangements: How they begin, how to mend them, how to cope with them. Atlanta, GA: Longstreet Press.
25.
Lee, R.M. ( 1993). Doing research on sensitive topics. London: Sage.
26.
Lee, R.M., & Renzetti, C.M. (1993). The problems of researching sensitive topics: An overview and introduction. In C. M. Renzetti & R. M. Lee (Eds.), Researching sensitive topics (pp. 3-13). Newbury Park, CA: Sage.
27.
Levine, C. ( 2004). The concept of vulnerability in disaster research. Journal of Traumatic Stress, 17(5), 395-402.
28.
Lowes, L., & Gill, P. ( 2006). Participants’ experiences of being interviewed about an emotive topic. Journal of Advanced Nursing, 55(5), 587-595. doi:10.1111/j.1365-2648.2006.03950.x
29.
Melrose, M. ( 2002). Labour pains: Some considerations on the difficulties of researching juvenile prostitution. International Journal of Social Research Methodology, 5(4), 333-351. doi:10.1080/13645570110045963
30.
Miller, T., & Boulton, M. ( 2007). Changing constructions of informed consent: Qualitative research and complex social worlds. Social Science and Medicine , 65(11), 2199- 2211. doi:10.1016/j.socscimed.2007.08.009
31.
National Health and Medical Research Council, Australian Research Council, & Australian Vice-Chancellors’ Committee. (2007). National statement on ethical conduct in human research. Canberra, Australia: Australian Government.
32.
Priya, R.K. ( 2010). The research relationship as a facilitator of remoralization and self-growth: Postearthquake suffering and healing. Qualitative Health Research, 20, 479-495. doi:10.1177/1049732309360419
33.
Rager, K.B. ( 2005). Compassion stress and the qualitative researcher. Qualitative Health Research, 15, 423-430. doi:10.1177/1049732304272038
34.
Rogers, B. ( 2005). Research with protected populations- Vulnerable participants . AAOHN Journal, 53(4), 156-157.
35.
Russell, C. ( 1999). Interviewing vulnerable old people: Ethical and methodological implications of imagining our subjects. Journal of Aging Studies , 13(4), 403-418.
36.
Saleebey, D. ( 2009). The strengths perspective in social work (5th ed.). Boston: Pearson Education.
37.
Sampson, H., Bloor, M., & Fincham, B. ( 2008). A price worth paying? Considering the ‘cost’ of reflexive research methods and the feminist ways of ‘doing.’Sociology, 42(5), 919-933. doi:10.1177/0038038508094570
38.
Shaw, V.N. ( 2005). Research with participants in problem experience: Challenges and strategies. Qualitative Health Research, 15, 841-854. doi:10.1177/1049732305275639
39.
Sichel, M. ( 2004). Healing from family rifts: Ten steps to finding peace after being cut off from a family member. New York: McGraw Hill.
40.
Sin, C.H. ( 2005). Seeking informed consent: Reflection on research practice . Sociology, 39(2), 277-294. doi:10.1177/ 003803850505039
41.
Singer, M., Mirhej, G., Hodge, D., Saleheen, H., Fisher, C.B., & Mahadevan, M. ( 2008). Ethical issues in research with Hispanic drug users: Participant perspectives in risks and benefits. Journal of Drug Issues, 38(1), 351-372.
42.
Smith, L.J. ( 2008). How ethical is ethical research? Recruiting marginalized, vulnerable groups into health services research. Journal of Advanced Nursing, 62(2), 248-257. doi:10.111/ j.1365-2648.2007.04567.x
43.
Stevens, M., Lord, B.A., Proctor, M., Nagy, S., & O’Riordan, E. (2010). Research with vulnerable families caring for children with life-limiting conditions. Qualitative Health Research, 20, 496-505. doi:10.1177/1049732309356097
44.
Sucov, E.B. ( 2006). Fragmented families: Patterns of estrangement and reconciliation . Jerusalem, Israel: Southern Hills Press.
45.
Tee, S.R., & Lathlean, J.A. (2004). The ethics of conducting a co-operative inquiry with vulnerable people. Journal of Advanced Nursing, 47(5), 536-543.
46.
Teram, E., Schachter, C.L., & Stalker, C.A. ( 2005). The case for integrating grounded theory and participatory action research: Empowering clients to inform professional practice. Qualitative Health Research, 15, 1129-1140. doi:10.1177/1049732305275882
47.
Titelman, P. ( 2003). Emotional cutoff in Bowen family systems theory: An overview . In P. Titelman (Ed.), Emotional cutoff: Bowen family systems theory perspectives (pp. 9-65). New York: Haworth Clinical Practice Press.
48.
Volker, D.L. ( 2004). Methodological issues associated with studying an illegal act: Assisted dying. Advances in Nursing Science, 27(2), 117-128.
49.
Warr, D.J. ( 2004). Stories in the flesh and voices in the head: Reflections on the context and impact of research with disadvantaged populations. Qualitative Health Research, 14, 578-587. doi:10.1177/1049732303260449
50.
Wenger, G.C. ( 2002). Interviewing older people. In J. F. Gubrium & J. A. Holstein (Eds.), Handbook of interview research: Context and method. Thousand Oaks, CA: Sage.
51.
Wray, N., Markovic, M., & Manderson, L. ( 2007). "Researcher saturation": The impact of data triangulation and intensive-research practices on the researcher and qualitative research process. Qualitative Health Research, 17, 1392-1402. doi:10.1177/1049732307308308
52.
Zayas, L.H. ( 2009). Recruiting urban Latino adolescents and their families: Challenges and lessons learned in suicide attempts research. Youth and Society, 40(4), 591-602. doi:10.1177/0044118X08328590
