Ethical Space for a Sensitive Research Topic - National Aboriginal ...

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Ethical Space for a Sensitive Research Topic study does not require an invasive procedure by a physician or nurse practitioner. It is imperative that the academic and community-based researchers collaborate to find ways to support women to respond appropriately to a positive HPV result, despite potential fear and stigma associated with HPV and cervical cancer. While the ethical space concept proved very beneficial for the development of this research, operating the ethical space for the research team within the structure of Western academia was difficult. First, there is a lack of funding opportunities to finance multi-site pre-research engagement meetings with First Nations. Second, academic research institutions generally do not have a system to “reward” researchers who engage in these important, yet time- and resource-intensive activities. Instead, these activities tend to be tacitly penalized as they take time away from activities such as peer reviewed publications, which are highly rewarded and also make researchers more competitive among granting agencies. LIMITATIONS Engaging First Nations Peoples at the political level is necessary prior to any community-based research. Yet, this delayed the engagement of First Nations women for the project until we had formal approval to do so. Despite this necessary formality, the majority of stakeholders with whom the research team worked did consist of First Nations women. Only 10 communities in a relatively small geographical area with reasonable connections to a major urban centre are involved in the current study. Depending on the outcome of future research, we hope to extend our investigation to more geographically remote communities. CONCLUSION Our adoption of Willie Ermine’s theoretical concept of ethical space has successfully assisted us in creating a meaningful and productive dialogue on HPV research in collaboration with 10 First Nations communities in northwest Ontario. It has resulted in the development of a PAR project in partnership with these communities. We hope that by creating the ethical space to negotiate HPV research in participating First Nations communities with community leaders, health workers, and community members, we will also increase the community dialogue about STIs. This process may begin to reduce the 48 Journal de la santé autochtone, mars 2012 stigma and negative social implications for women who test positive for HPV. In addition, it can lead to increased HPV screening rates and lower cervical cancer rates among First Nations women, resulting in healthier women and therefore healthier communities. ACKNOWLEDGEMENTS This work was funded by the Northern Health Fund (to I.Z.). We cordially thank the health centre staff and band council members of the participating communities for continuous knowledge exchange and support for our study design to successfully conduct the planned larger study of cervical cancer screening. REFERENCES Baum, F., MacDougall, C., & Smith, D. (2006). Participatory action research. Journal of Epidemiology & Community Health, 60, 854–870. Boshart, M., Gissmann, L., Ikenberg, H., Kleinheinz, A., Scheurlen, W., & zur Hausen, H. (1984). A new type of Papillomavirus DNA, its presence in genital cancer biopsies and in cell lines derived from cervical cancer. The EMBO Journal, 3, 1151–1157. Bosch, F.X., & de Sanjosé, S. (2003). Human papillomavirus and cervical cancer burden and assessment of causality. Journal of the National Cancer Institute. Monographs, 31, 3–13. Brascoupé, S., & Waters, C. (2009). Exploring the applicability of the concept of cultural safety to Aboriginal health and community wellness. Journal of Aboriginal Health, 5(2), 6–41. Brown, L., Ritvo, P., Howlett, R., Cotterchio, M., Matthew, A., Rosen, B., Murphy, J., & Mai, V. (2007). Attitudes toward HPV testing: Interview findings from a random sample of women in Ontario, Canada. Health Care for Women International, 28, 782–798. Camm, J. (2005). Stigma over smear tests. Community Practitioner, 78, 425. Clifford, G. M., Smith, J. S., Plummer, M., Muñoz, N., & Franceschi, S. (2003). Human papillomavirus types in invasive cervical cancer worldwide: a meta-analysis. British Journal of Cancer, 88, 63–73.
Colquhoun, A., Jiang, Z., Maiangowi, G., Ashbury, F., Chen, Y., Drobina, W., McLeod, L., Panaro, L., Sihota, S., Tustin, J., & Yacoub, W. (2010). An investigation of cancer incidence in a First Nations community in Alberta, Canada, 1995–2006. Chronic Diseases in Canada, 30, 135–140. Corriveau, A. (1999). Cancer incidence and mortality in the NWT 1991–1996. Epi-North, 9, 5. Daley, E. M., Perrin, K. M., McDermott, R. J., Vamos, C. A., Rayko, H. L., Packing-Ebuen, J. L., Webb, C., & McFarlane, M. (2010). The psychosocial burden of HPV: A mixed-method study of knowledge, attitudes and behaviors among HPV+ women. Journal of Health Psychology, 15, 279–290. Dignan, M., Sharp, P., Blinson, K., Michielutte, R., Konen, J., Bell, R., & Lane, C. (1995). Development of a cervical cancer education program for native American women in North Carolina. Journal of Cancer Education, 9, 235–242. Ermine, W. (1995). Ethical Space: Transforming Relations. Discussion Paper. Retrieved October 5, 2011 from http:// www.traditions.gc.ca/docs/docs_disc_ermine_e.cfm. Ermine, W. (2007). Ethical space of engagement. Indigenous Law Journal, 6. Retrieved July 13, 2011 from http://hdl. handle.net/1807/17129. Fehringer, G., Howlett, R., Cotterchio, M., Klar, N., Majpruz- Moat, V., & Mai, V. (2005). Comparison of Papanicolaou (Pap) test rates across Ontario and factors associated with cervical screening. Canadian Journal of Public Health, 96, 140–144. Friedman, A. L., & Shepeard, H. (2007). Exploring the knowledge, attitudes, beliefs, and communication preferences of the general public regarding HPV: Findings from CDC focus group research and implications for practice. Health Education & Behaviour, 34, 471–485. Goggin, P., & Franco, E.L. (2007). Process of care failures in invasive cervical cancer: Systematic review and meta-analysis. Preventive Medicine, 45, 93–106. Interagency Advisory Panel on Research Ethics. (2010). Tri- Council Policy Statement 2: Research Involving the First Nations, Inuit and Metis People of Canada. Ottawa, ON: Government of Canada. Retrieved October 6, 2011 from http://www.pre. ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/ chapter9-chapitre9/. Ethical Space for a Sensitive Research Topic Kahn, J. A., Slap, G. B., Bernstein, D. I., Tissot, A. M., Kollar, L. M., Hillard, P. A., & Rosenthal, S.L. (2007). Personal meaning of human papillomavirus and Pap test results in adolescent and young adult women. Health Psychology, 26, 192–200. Jacklin, K., & Kinoshameg, P. (2008). Developing a participatory Aboriginal health research project: “Only if it’s going to mean something.” Journal of Empirical Research of Human Research Ethics, 3, 53–68. Kwan, T. T., Tam, K. F., Lee, P. W., Lo, S. S., Chan, K. K., & Ngan, H. Y. (2010). De-stigmatising human papillomavirus in the context of cervical cancer: A randomised controlled trial. Psycho-oncology, 19, 1329–1339. Maar, M. A., Lightfoot, N. E., Sutherland, M. E., Stasser, R. P., Wilson, K. J., Lidstone-Jones, C. M., Graham, D. G., Beaudin, R., Daybutch, G. A., Dokis, B. R., Lesage, M. T., Raymond, M., & Williamson, P. (2011). Thinking outside the box: Aboriginal people’s suggestions for conducting health studies with Aboriginal communities. Public Health, 125(11), 747-753. Marrett, L.D., & Chaudhry, M. (2003). Cancer incidence and mortality in Ontario First Nations, 1968–1991 (Canada). Cancer Causes & Control, 14, 259–268. Newton, D. C., & McCabe, M. P. (2008). Sexually transmitted infections: impact on individuals and their relationships. Journal of Health Psychology, 13, 864–869. Ontario Cervical Screening Program. (2005). Selected Extracts from OCSP Program Report 2001-2005. Cancer Care Ontario. Perrin, K. K., Daley, E. M., Naoom, S. F., Packing-Ebuen, J. L., Rayko, H. L., McFarlane, M., & McDermott , R.J. (2006). Women’s reactions to HPV diagnosis: Insights from in-depth interviews. Women & Health, 43, 93–110. Sandfort, J. R., & Phesant, A. (2009). Knowledge, attitudes, and informational behaviors of college students in regard to the human papillomavirus. Journal of American College Health, 58, 141–149. Spence, A.R., Goggin, P., & Franco, E.L. (2007). Process of care failures in invasive cervical cancer: Systematic review and meta-analysis. Preventive Medicine, 45, 93–105. Journal of Aboriginal Health, March 2012 49
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