Research with Indigenous Communities: Navigating Differences in Cultural Perspectives

1. Research with Indigenous Communities: Navigating Differences in Cultural Perspectives Dr. Ronald Trosper American Indian Studies University of Arizona March 5, 2014

2. Introduction • Research with Indigenous communities often poses challenges for university based researchers. • Tribes as sovereign nations can assert the right to consent to research on their reservations, and to ownership of materials collected. • Much research has appeared exploitative, culturally biased or irrelevant; hence “research” can be a negative word. • Cultural differences need attention. • IRB processes are individual-focused. • Community Engagement can address these barriers

3. The Participant-focused Study • Change the terminology in Indigenous research: look at designing a participant-focused study, plan community involvement; work with leaders or their designated representatives. • Planning: Engage key leaders in defining research questions and establishing relevance • Data Collection: involve community members in writing surveys as well as conducting them • Interpretation: break through terminological barriers and explain results to participants; recognize community knowledge may reveal key biases in data collection • Dissemination: involve community members and research partners in presenting research results. Co-authorship of articles would be excellent.

4. Community Needs • The needs of the community should be a primary focus in the identification and design of any study that you will be working in partnership with an Indigenous community. • Indigenous Nations are a clear case of the need for community-involved research; this is a rapidly developing field and Barbara Israel et al 1998 is a widely cited article. (Far more material than a 30 minute presentation) • Nicky Teufel-Shone of our School of Public Health works with Hualapai community to address issues such as youth wellness and diabetes risk (Teufel-Shone et al. 2006). • Tribes are diverse; expect issues of different offices, committees, and extended families; but elders often provide a long term view. • Good long term relationships are extremely helpful.

5. Terminology • Terms like participant, informant, and study population are from the old model, and quickly define the role of the researcher as in the position of power. • Some terms reveal a more evenly balanced power dynamic (Collaboration, research partners, community members) • “Research” can be a negative term, but it is hard to avoid. Also, “human subjects research” is much narrower definition of research than that used by most tribes, which include “research on plants, animals, water, land, air and weather,” to quote the Tohono O’odham legislation.

6. Cultural Views and Conflicts • Do the cultural views of the community conflict with elements of the project? Such as sampling methods, survey instruments; interview protocol, etc. • Controversial testing (genetic testing): can one address American Indian origins without appearing to attack our connection to land? (Not everyone is an immigrant!) • Language barriers either in speaking or reading questions, will surveys/ questionnaires be written in a native language? Will a translator be available? • Respect for non-humans (destructive sampling of trees without harvest…, radio collaring ungulates … respectful use is better than non-use)

7. Disseminating Project Results • How will the results of the project be disseminatedto the community? • If there is a mainstream publication, it probably is hard to read. What alternatives are possible and preferred by the community? • Does the community research partner attend conferences with the academic author for presentations? • In addition to plain English, will the study be published in a native language? • Is there a way to measure the success of the project? • Does the community want to provide an alternative explanation to those of the researchers?

8. Web Resources • http://www.nptao.arizona.edu/protocols.html • This web page contains a listing of all available protocols for Native nations in Arizona. It also has community profiles and tribal constitutions. • National rules that address community ethics: • Chapter 9 of Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada, Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans, December 2010 at http://www.pre.ethics.gc.ca/eng/policy-politique/initiatives/tcps2-eptc2/Default/

9. References Chilisa, Bagele 2012 Indigenous Research Methodologies. Los Angeles: Sage. Hodge, F. S., with Itty, T. L., Cadogan, M. P., & Martinez, F. 2012 Weaving balance into life: Development and cultural adaptation of a cancer symptom management toolkit for Southwest American Indians. Journal of Cancer Survivorship : Research and Practice 6(2): 182-188. Barbara A. Israel, Amy J. Schulz, Edith A. Parker, and Adam B. Becker 1998 . Review of Community-Based Research: Assessing Partnership Approaches to Improve Public Health Annual.. Review of Public Health. 19:173–202 Teufel-Shone, Nicolette I., with Thomas Siyuja, Helen J Watahomigie, and Sandra Irwin 2006 Community-Based Participatory Research: Conducting a Formative Assessment of Factors that Influence Youth Wellness in the Hualapai Community. American Journal of Public Health 96(9 ): 1623-1628. Vogel, O., with Cowens-Alvarado, R., Eschiti, V., Samos, M., Wiener, D., Ohlander, K., and Royals, D. 2013 Circle of life cancer education: Giving voice to American Indian and Alaska Native communities. Journal of Cancer Education 28(3): 565-572.