The Long Story of an Indigenous Health Research Project

Authors

  • Patrick Sullivan Department of Community Health and Epidemiology, University of Saskatchewan
  • Cari McIlduff Department of Community Health and Epidemiology, University of Saskatchewan

DOI:

https://doi.org/10.15273/hpj.v3i1.11486

Keywords:

Health Equity, Indigenous Health Research,

Abstract

Indigenous health inequities represent a significant challenge for health research and programming. The research seeking to address these inequities also faces significant challenges. To guide researchers through these challenges, several resources exist. That said, the real world of Indigenous research is complex and contains much that, experience suggests, is not accounted for by existing resources. Therefore, this article tells the full and honest story of conducting research within largely Western systems the barriers they present to Indigenous community-based health research that respects self-determination and culture. When relevant to discussion, examples will be provided from a recently completed COVID-19 vaccine promotion research project. In telling this story, many questions are posed, some of these are tentatively answered, and many are left for contemplation and future work. When answers are provided, they often stem from personal experience, and so, conclusions should be approached cautiously. Regardless, prioritizing respectful and authentic relationships appears to be a universal compass that can guide researchers to the good way. Still, more consistent and honest reporting of barriers, failures, and opportunities may be needed to truly reflect the challenging realities of ethical Indigenous research.

References

Absolon, K. E. (2011). Kaandossiwin: How we come to know. Fernwood Publishing.

AHA Centre. (2018, June 4). AHA Centre fact sheet: Doing research in a good way. Canadian Aboriginal AIDS Network. https://caan.ca/wp-content/uploads/2021/05/Doing-Research-in-a-Good-Way.pdf

Anderson, K., & Cidro, J. (2019). Decades of doing: Indigenous women academics reflect on the practices of community-based health research. Journal of Empirical Research on Human Research Ethics, 14(3), 222–233. https://doi.org/10.1177/1556264619835707

Ansari, J. A., & Inamdar, N. N. (2010). The promise of traditional medicines. International Journal of Pharmacology, 6(6), 808–812. https://doi.org/10.3923/ijp.2010.808.812

Auger, M. D. (2016). Cultural continuity as a determinant of Indigenous Peoples‘ health: A metasynthesis of qualitative research in Canada and the United States. International Indigenous Policy Journal, 7(4), Article 3. https://doi.org/10.18584/iipj.2016.7.4.3

Ballard, A. (2019). Framing bias in the interpretation of quality improvement data: Evidence from an experiment. International Journal of Health Policy and Management, 8(5), 307–314. https://doi.org/10.15171/ijhpm.2019.08

Bartlett, J. G., Iwasaki, Y., Gottlieb, B., Hall, D., & Mannell, R. (2007). Framework for Aboriginal-guided decolonizing research involving Métis and First Nations persons with diabetes. Social Science & Medicine, 65(11), 2371–2382. https://doi.org/10.1016/j.socscimed.2007.06.011

Battiste, M., & Henderson, J. Y. (2000). Protecting Indigenous Knowledge and heritage: A global challenge. Purich Publishing.

Berg, B. L. (2001). Qualitative research methods for the social sciences (3rd ed.). Allyn and Bacon.

Brown, B. (2019). Dare to lead: Brave work. Tough conversations. Whole hearts (Large print ed.). Random House.

Cameron, L., Courchene, D., Ijaz, S., & Mauro, I. (2021). ‘A change of heart‘: Indigenous perspectives from the Onjisay Aki Summit on climate change. Climatic Change, 164(3–4), Article 43. https://doi.org/10.1007/s10584-021-03000-8

Canadian Institutes of Health Research, National Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council. (2018, December). Tri-council policy statement: Ethical conduct for research involving humans. https://ethics.gc.ca/eng/documents/tcps2-2018-en-interactive-final.pdf

Carroll, S. R., Garba, I., Figueroa-Rodrà­guez, O. L., Holbrook, J., Lovett, R., Materechera, S., Parsons, M., Raseroka, K., Rodriguez-Lonebear, D., Rowe, R., Sara, R., Walker, J. D., Anderson, J., & Hudson, M. (2020). The CARE Principles for Indigenous data governance. Data Science Journal, 19, Article 43. https://doi.org/10.5334/dsj-2020-043

Castellano, M. B. (2004). Ethics of Aboriginal research. International Journal of Indigenous Health, 1(1), 98–114. https://jps.library.utoronto.ca/index.php/ijih/article/view/28935/24063

Castleden, H., Garvin, T., & Huu-ay-aht First Nation. (2008). Modifying Photovoice for community-based participatory Indigenous research. Social Science & Medicine, 66(6), 1393–1405. https://doi.org/10.1016/j.socscimed.2007.11.030

Chambers, R. (1983). Rural development: Putting the last first. Longman.

Cidro, J. (2012). Storytelling as Indigenous Knowledge transmission. In International Indigenous Development Research Conference 2012: Proceedings (pp. 26–31). Ngč Pae o te Mčramatanga. http://mediacentre.maramatanga.ac.nz/system/files/NPM%20Conference%20Proceedings%202012.pdf

Curtis, E., Jones, R., Tipene-Leach, D., Walker, C., Loring, B., Paine, S.-J., & Reid, P. (2019). Why cultural safety rather than cultural competency is required to achieve health equity: A literature review and recommended definition. International Journal for Equity in Health, 18(1), Article 174. https://doi.org/10.1186/s12939-019-1082-3

del Pino, H. E., Jones, L., Forge, N., Martins, D., Morris, D., Wolf, K., Baker, R., Lucas-Wright, A. A., Jones, A., Richlin, L., & Norris, K. C. (2016). Integrating community expertise into the academy: South Los Angeles‘ community-academic model for partnered research. Progress in Community Health Partnerships: Research, Education, and Action, 10(2), 329–338. https://doi.org/10.1353/cpr.2016.0028

Dudgeon, P., Scrine, C., Cox, A., & Walker, R. (2017). Facilitating empowerment and self-determination through participatory action research: Findings from the National Empowerment Project. International Journal of Qualitative Methods, 16(1). https://doi.org/10.1177/1609406917699515

Ermine, W. (2007). The ethical space of engagement. Indigenous Law Journal, 6(1), 193–203. https://jps.library.utoronto.ca/index.php/ilj/article/view/27669

Fehring, E., Ferguson, M., Brown, C., Murtha, K., Laws, C., Cuthbert, K., Thompson, K., Williams, T., Hammond, M., & Brimblecombe, J. (2019). Supporting healthy drink choices in remote Aboriginal and Torres Strait Islander communities: A community-led supportive environment approach. Australian and New Zealand Journal of Public Health, 43(6), 551–557. https://doi.org/10.1111/1753-6405.12950

Ferreira, M. P., & Gendron, F. (2011). Community-based participatory research with traditional and Indigenous communities of the Americas: Historical context and future directions. The International Journal of Critical Pedagogy, 3(3), 153–168. https://libjournal.uncg.edu/ijcp/article/view/254/119

Field, S. (2005). Screenplay: The foundations of screenwriting (Revised ed.). Delta.

First Nations Information Governance Centre. (2019). First Nations data sovereignty in Canada. Statistical Journal of the IAOS, 35(1), 47–69. https://doi.org/10.3233/SJI-180478

Global Indigenous Data Alliance. (2019). CARE Principles for Indigenous data governance. Retrieved March 7, 2023, from https://www.gida-global.org/care

Goodman, A., Morgan, R., Kuehlke, R., Kastor, S., Fleming, K., Boyd, J., & Western Aboriginal Harm Reduction Society. (2018). “We‘ve been researched to death”: Exploring the research experiences of urban Indigenous Peoples in Vancouver, Canada. International Indigenous Policy Journal, 9(2), Article 3. https://doi.org/10.18584/iipj.2018.9.2.3

Gopal, D. P., Douglass, C., Wong, S., Khan, I., & Lokugamage, A. U. (2022). Reflexivity, cultural safety, and improving the health of racially minoritised communities. The Lancet, 399(10335), 1581–1582. https://doi.org/10.1016/S0140-6736(22)00459-7

Gower, G. (2012). Ethical research in Indigenous Australian contexts and its practical implementation. In S. Fan, T. Lê, Q. Lê, & Y. Yue (Eds.), Innovative research in a changing and challenging world, conference proceedings B (pp. 47–58). Multicultural Interaction Institute. https://ro.ecu.edu.au/ecuworks2012/131

Greenwood, M., de Leeuw, S., & Lindsay, N. M. (Eds.). (2018). Determinants of Indigenous Peoples‘ health: Beyond the social (2nd ed.). Canadian Scholars.

Hart, A. C., Rosewarne, E., Spencer, W., McCausland, R., Leslie, G., Shanthosh, J., Corby, C., Bennett-Brook, K., & Webster, J. (2021). Indigenous community-led programs to address food and water security: Protocol for a systematic review. International Journal of Environmental Research and Public Health, 18(12), Article 6366. https://doi.org/10.3390/ijerph18126366

Hutchinson, P., McIlduff, C., Legare, M., Chapados, M., Keewatin, M., & Acharibasam, J. (2023). Indigenous Knowledge mobilization: Reflection on context, content, and relationship [Manuscript submitted for publication]. University of British Columbia.

Johnson, N. F., Velásquez, N., Restrepo, N. J., Leahy, R., Gabriel, N., El Oud, S., Zheng, M., Manrique, P., Wuchty, S., & Lupu, Y. (2020). The online competition between pro- and anti-vaccination views. Nature, 582(7811), 230–234. https://doi.org/10.1038/s41586-020-2281-1

Karnieli-Miller, O., Strier, R., & Pessach, L. (2009). Power relations in qualitative research. Qualitative Health Research, 19(2), 279–289. https://doi.org/10.1177/1049732308329306

Kimmerer, R. (2014). Returning the gift. Minding Nature, 7(2), 18–24. https://www.humansandnature.org/filebin/pdf/minding_nature/May2014_Returning_the_Gift.pdf

Kipp, A., Cunsolo, A., Gillis, D., Sawatzky, A., & Harper, S. L. (2019). The need for community-led, integrated and innovative monitoring programmes when responding to the health impacts of climate change. International Journal of Circumpolar Health, 78(2), Article 1517581. https://doi.org/10.1080/22423982.2018.1517581

Kirkness, V. J., & Barnhardt, R. (1991). First Nations and higher education: The four R‘s — Respect, relevance, reciprocity, responsibility. Journal of American Indian Education, 30(3), 1–15.

Kovach, M. (2018). Doing Indigenous methodologies: A letter to a research class. In N. K. Denzin, & Y. S. Lincoln (Eds.), The SAGE handbook of qualitative research (5th ed., pp. 214–235). SAGE.

Lavallée, L. F. (2009). Practical application of an Indigenous research framework and two qualitative Indigenous research methods: Sharing circles and Anishnaabe symbol-based reflection. International Journal of Qualitative Methods, 8(1), 21–40. https://doi.org/10.1177/160940690900800103

Lemke, J. (2016, January). Indigenous contributions to North America and the world. First Nations Child and Family Caring Society of Canada. https://fncaringsociety.com/sites/default/files/Indigenous%20Contributions%20to%20North%20America%20and%20the%20World.pdf

Little Bear, L. (2009, July). Naturalizing Indigenous Knowledge: Synthesis paper. Canadian Council on Learning, Aboriginal Learning Knowledge Centre. https://www.afn.ca/uploads/files/education/21._2009_july_ccl-alkc_leroy_littlebear_naturalizing_indigenous_knowledge-report.pdf

McGregor, D., Restoule, J.-P., & Johnston, R. (Eds.). (2018). Indigenous research: Theories, practices, and relationships. Canadian Scholars.

McIlduff, C. D., Forster, M., Carter, E., Davies, J., Thomas, S., Turner, K. M. T., Brown Wilson, C., & Sanders, M. R. (2020). Model of Engaging Communities Collaboratively. International Journal of Critical Indigenous Studies, 13(1), 45–69. https://doi.org/10.5204/ijcis.v13i1.1346

Michael Smith Health Research BC. (n.d.). Convening & Collaborating Program. Retrieved December 23, 2022, from https://healthresearchbc.ca/fundingprogram/convening-collaborating-c2-program/

Mosby, I. (2013). Administering colonial science: Nutrition research and human biomedical experimentation in Aboriginal communities and residential schools, 1942–1952. Histoire sociale / Social History, 46(91), 145–172. https://doi.org/10.1353/his.2013.0015

Mosby, I., & Swidrovich, J. (2021). Medical experimentation and the roots of COVID-19 vaccine hesitancy among Indigenous Peoples in Canada. Canadian Medical Association Journal, 193(11), E381–E383. https://doi.org/10.1503/cmaj.210112

Muhunthan, J., Angell, B., Hackett, M. L., Wilson, A., Latimer, J., Eades, A.-M., & Jan, S. (2017). Global systematic review of Indigenous community-led legal interventions to control alcohol. BMJ Open, 7(3), Article e013932. https://doi.org/10.1136/bmjopen-2016-013932

Nesdole, R., Voigts, D., Lepnurm, R., & Roberts, R. (2014). Reconceptualizing determinants of health: Barriers to improving the health status of First Nations Peoples. Canadian Journal of Public Health, 105(3), e209–e213. https://doi.org/10.17269/cjph.105.4308

Oster, R. T., Grier, A., Lightning, R., Mayan, M. J., & Toth, E. L. (2014). Cultural continuity, traditional Indigenous language, and diabetes in Alberta First Nations: A mixed methods study. International Journal for Equity in Health, 13, Article 92. https://doi.org/10.1186/s12939-014-0092-4

Oster, R. T., & Lightning, P. (2022). Commentary: Developing relationships through trust in Indigenous health research. Healthcare Policy, 17(4), 56–62. https://doi.org/10.12927/hcpol.2022.26825

Priebe, J., Silber, H., Beuthner, C., & Pötzschke, S. (2022). How (not) to mobilize health workers in the fight against vaccine hesitancy: Experimental evidence from Germany‘s AstraZeneca controversy. BMC Public Health, 22, Article 516. https://doi.org/10.1186/s12889-022-12725-9

Public Health Agency of Canada. (2018, May 28). Key health inequalities in Canada: A national portrait – Executive summary. https://www.canada.ca/en/public-health/services/publications/science-research-data/key-health-inequalities-canada-national-portrait-executive-summary.html

Reading, C., & Wien, F. (2009). Health inequalities and social determinants of Aboriginal Peoples‘ health. National Collaborating Centre for Aboriginal Health. https://www.ccnsa-nccah.ca/docs/determinants/RPT-HealthInequalities-Reading-Wien-EN.pdf

Restoule, J.-P. (2004). Male Aboriginal identity formation in urban areas: A focus on process and context [Doctoral dissertation, University of Toronto]. Tspace Repository. https://tspace.library.utoronto.ca/handle/1807/122573

Riddell, J. K., Salamanca, A., Pepler, D. J., Cardinal, S., & McIvor, O. (2017). Laying the groundwork: A practical guide for ethical research with Indigenous communities. International Indigenous Policy Journal, 8(2), Article 6. https://doi.org/10.18584/iipj.2017.8.2.6

Saskatchewan Health Research Foundation. (2022). SHRF annual report—2021–22. https://www.shrf.ca/_files/ugd/18216c_52bb8d954cda4ad5a8d60ba374c64a05.pdf

Starblanket, D., Lefebvre, S., Legare, M., Billan, J., Akan, N., Goodpipe, E., & Bourassa, C. (2019). Nanâtawihowin à‚cimowina Kika-Môsahkinikêhk Papiskîci-Itascikêwin Astâcikowina [Medicine/Healing Stories Picked, Sorted, Stored]: Adapting the Collective Consensual Data Analytic Procedure (CCDAP) as an Indigenous research method. International Journal of Qualitative Methods, 18. https://doi.org/10.1177/1609406919896140

Sullivan, P., Starr, V., Dubois, E., Starr, A., Acharibasam, J. B., & McIlduff, C. (2023). Where past meets present: Indigenous vaccine hesitancy in Saskatchewan. Medical Humanities. Advance online publication. http://dx.doi.org/10.1136/medhum-2022-012501

United Nations. (2007). United Nations declaration on the rights of Indigenous Peoples. https://www.un.org/development/desa/indigenouspeoples/wp-content/uploads/sites/19/2018/11/UNDRIP_E_web.pdf

Universities Canada. (n.d.). Indigenous student education. Retrieved December 23, 2022, from https://www.univcan.ca/priorities/indigenous-education/

Verd, S., Fernández-Bernabeu, M., & Cardo, E. (2022). The controversy surrounding vaccination of young people against COVID-19. Acta Paediatrica, 111(1), 187–188. https://doi.org/10.1111/apa.16156

Walter, M., & Andersen, C. (2013). Indigenous statistics: A quantitative research methodology. Routledge.

Wilson, S. (2008). Research is ceremony: Indigenous research methods. Fernwood Publishing.

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2023-03-16

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