1.9: ESTABLISHING TRUSTFUL RELATIONSHIPS BETWEEN MARGINALIZED INDIGENOUS PEOPLE AND RESEARCHERS/HEALTH WORKERS

SNEFRID MØLLERSEN AND TONJE HAANÆS-RENSBERG

The Sami reindeer-herders’ marginalization in the Norwegian society implies a lack of knowledge about their health-related life conditions. In conjunction with the first Nordic health study that used a participatory research model and ethical guidelines for research among Indigenous people, this study conducted an evaluation of the research process with participating reindeer-herders. In response, the reindeer-herders accentuated the importance of research objectives, which correspond to self-defined challenges; the inclusion of reindeer-herding knowledge; and the importance of a trusting relationship with the researchers. To reverse marginalization within health services, there is a need for a greater focus on ethical issues and integration of cultural knowledge.

INTRODUCTION

Most evidence-based knowledge production about health and health care automatically use theories and practices developed within the Western culture. This knowledge has often been demonstrated to be unsuitable to improve health outcomes among Indigenous populations, and confirmed marginalization, and increased Indigenous distrust in research (Cameron, Andersson, McDowell & Ledogaret, 2010).

In the 1940s, social psychologist Kurt Lewin developed action research to increase the usefulness of research to minority groups. Later on, the ecologic perspective was included and the model was renamed to ’Community Based Participatory Research’ (CBPR).1 The CBPR approach implies that the researchers and the target group engage in projects of mutual benefit, focus themes of importance to the target group, build genuine partnerships, share knowledge, and cooperate through all phases of the research process (Israel, Schulz, Parker, & Becker, 1998). The request for cultural responsive approaches to Indigenous health issues presupposes identification of ethical dilemmas and respect for ways of knowing and doing in the participating Indigenous population. Several countries2 have prepared ethical guidelines in health research among Indigenous people, and participatory research is highlighted as a working model that ensure Indigenous influence and control.

EVALUATION STUDY

The Norwegian Reindeer-Herder Association and Sami Norwegian National Advisory Unit on Mental Health and Abuse performed a study addressing psychosocial life and working conditions in reindeer herding. The study used “Guidelines for health research involving Aboriginal people” (CIHR, 2006), along with the CBPR. The purpose of the CIHR guidelines is to ensure culturally competent research that is beneficial to the Indigenous community through developing research partnerships that facilitate and encourage community participation within a framework of shared power and decision-making. Considering the future need for advisory tools for culturally responsive projects among Sami people, we conducted a qualitative evaluation of the Sámi reindeer herders’ experiences and assessments with the participating research.3

First, themes about research of relevance to the reindeer herders were identified by a focus group. Then, individual semi-structured interviews with six reindeer herders that had participated closely in the research process were carried out. Observations of the discussion groups between reindeer herders and researchers served as additional contextual information.3

Three main themes were present throughout the interviews: research issues that corresponded to challenges of importance to the reindeer herders, inclusion of reindeer herders’ knowledge, and development and maintenance of confidence in the project and the researchers. Additionally, access to unlimited information about the project, and expectations for the usefulness of results were accentuated as important.

PARTNERSHIP CHARACTERISTICS THAT FACILITATE CULTURALLY RESPONSIVE ENCOUNTERS

The reindeer herders had entered the project with diverse expectations. However, the partnership research model had evoked expectations of documentation about issues that were meaningful to their existence. The reindeer herders told that the partnership model put them into an active role, and that it welcomed input and contributions from the Sámi reindeer herder perspective. They found that the researchers listened to them, and their knowledge and competence were recognized and taken seriously. Furthermore, questions for transparency were met with understandable information and explanations.

Trust is a psychological state comprising the intention to accept vulnerability, based on the positive expectations of the intentions or behaviors of the other. Trust is guided by the willingness to be vulnerable, based on an evaluation of the competence and care of the other to protect you against risk (Hamm, 2014). Distrust might be a realistic and protective response to the tangible harm Indigenous peoples have endured in previous research relations. Historical oppression, power imbalance, and a lack of benevolence and reciprocity are emergent themes related to the Indigenous communities’ development of distrust in the majority society and its representatives. Transparency and continuous communication foster reciprocal interactions, which in turn increase trust and commitment to partnership projects (Burnette & Sanders, 2014). The community has inherent rights to control and determine collection and use of Indigenous property, the data delivered to the researchers (CIHR, 2006, Art. 12). The reindeer herders linked the researchers’ ability to understand and act in a respectful manner to the openness about the research process and the experience that reindeer herding knowledge mattered to research decisions. It was, however, stated that decisions were consensus-based. Though research objectives were perceived as corresponding to self-defined challenges, suppositions that research findings would be relevant, and the expectation that the practical significance of the results were guarded.

CONCLUSION AND CHALLENGES

The Sami reindeer herders’ assessments of research with ethical guidelines for health research among Indigenous people combined with CBPR were positive. From their point of view, this research model fostered trust and changed their historically acquired reluctance to research. To the Sami reindeer herders, the most important elements of the working model were genuine impact upon the research process, along with access to meaningful research information and thereby developing meaningful research objectives and methods that corresponded to reindeer herders’ way of life. The findings indicate that the reindeer herders’ positive evaluation of the research process and expectations to the findings were rooted in experience of trust. Trust was primarily associated with the combination of impact on and supervision of the use of reindeer herding knowledge throughout the research process.

Health promotion, at the individual and structural level, requires that health workers and health researchers bridge the gaps between Western authorized knowledge and the Indigenous body of knowledge. This includes recognition of the historically acquired power imbalance which impacts how relationships are built, which voices are listened to, and which assessments are valued. Indigenous empowerment and social participation are inextricably linked to changes in inequity in the health conditions of Indigenous populations (WHO, 2008). Therefore, working models have to address issues of power to move the clinical encounter towards dialogue and accountability that may foster cultural responsive and safe interventions (Kirmayer, 2012).

Ethical guidelines and CBPR operate as navigating tools for health workers, and aim to prevent disrespect, misleading, indifferent, or humiliating results. The ethical principles and communication procedures improve the knowledge base and provide a context for discussion of challenges and emerging possibilities. To exchange ‘traditional ‘objectification of Indigenous people into active engagement, both researchers and clinicians in cross-cultural relationships need to pay close attention to ethical dilemmas. The health system and its providers need to distinguish between recommendations founded in the majority culture and measures that will gain the health of minorities. Recognition of power imbalance means the willingness to abstain from decision making on behalf of the other.

CITATION/ATTRIBUTION

Additional Resources

Bull, J. R. (2010). Research with Aboriginal Peoples: Authentic Relationships as a Precursor to Ethical Research (2010). Journal of Empirical Research on Human Research Ethics, 13–22. doi: 10.1525/jer.2010.5.4.13.

United Nations. (2009). State of the World’s Indigenous Peoples. Department of Economic and Social Affairs, ST/ESA/328. Sales No. 09.VI.13, New York, ISBN 92-1-130283-7.

O’Fallon, L. R., Tyson, F. L. & Dearry, A. (Eds.). (2000). Successful Models of Community-Based Participatory Research. Final Report. NIEHS, National Institute of Environmental Health Sciences, Meeting hosted by the NIEHS March 29-31, Washington, DC.

REFERENCES

Burnette, C. E., & Sanders, S. (2014). Trust Development in Research with Indigenous Communities in the United States. The Qualitative Report, 19(44), 1-19.

Cameron, M., Andersson, N., McDowell, I., & Ledogar, R. J. (2010). Culturally Safe Epidemiology: Oxymoron or Scientific Imperative. Pimatisiwin, 8(2), 89-116.

Canadian Institutes of Health Research Ethics office. (2006). CIHR Guidelines for health research involving aboriginal people (2007 – 2010). Ottawa, ON: Canadian Institutes of Health Research. Retrieved from https://www.nri.nu.ca/sites/default/files/public/files/CIHR%20Ethics_Guidelines_Apri.pdf.

Hamm, J. (2014). Understanding the Role of Trust in Cooperation with Natural Resources Institutions (Doctoral dissertation). The Graduate College at the University of Nebraska, Nebraska, US.

Israel, B., Schulz, A., Parker, E., & Becker, A. (1998). Review of community-based research: Assessing partnership approaches to improve public health. Annual Review of Public Health, 19, 173-202. doi:10.1146/annurev.publhealth.19.1.173.

Kirmayer, L. (2012). Rethinking cultural competence. Transcultural Psychiatry, 49(2), 149–64. doi: 10.1177/1363461512444673.

World Health Organization (WHO). (2008). Closing the gap in a generation. Health equity through action on the social determinants of health. WHO Library Cataloguing-in- Publication Data. http://www.who.int/social_determinants/final_report/csdh_finalreport_2008.pdf.