“You Can’t Record That!” Engaging American Indian Traditional Healers in Qualitative Research

To the Editor:

Eliciting the serious illness-related traditions, beliefs, and values of historically and currently marginalized populations such as American Indian/Alaska Natives (AI/ANs) through community-based participatory research (CBPR) is a crucial initial step toward developing culturally responsive interventions. While CBPR is the preferred methodology for research with AI/AN populations,^1,2 it has rarely been used in palliative care (PC) research^3,4 specific to AI/AN spirituality. Moreover, few studies regarding AI/AN spirituality have included traditional healers’ voices in the research process^5–7; none were related to PC.

To understand AI/AN spirituality in relation to PC requires cognizance of the historical trauma and cultural genocide experienced by many AI/ANs at the hands of the federal government and religious organizations. These entities focused on erasing traditional culture and resulted in AI/ANs being forced to practice traditional ceremonies, which are often highly valued at end-of-life, in secrecy.^5–9 Thus, it is evident why collaborative partnerships between traditional healers and researchers are rare.

As part of a larger research study aimed at developing culturally-responsive PC within three Great Plains American Indian (AI) Tribal communities,⁴ the purpose of this manuscript is to share the unique lessons learned when applying qualitative methodologies to CBPR involving AI traditional healers. We have developed some insights that we hope will be helpful to others engaging in CBPR with understudied communities, such as AI/ANs. This community has much to teach researchers about conducting culturally respectful research and developing culturally responsive PC.

Methods

In the first phase of this larger research study, our team sought to develop partnerships with representatives from these three Tribal communities. Tribal partners were recruited by members of our study team to form three community advisory boards (CABs), whose input and involvement have been a key component of our research.⁴

In addition to interviewing AI cancer patients, caregivers, and Tribal leaders, described elsewhere,⁴ CAB members identified the importance of including AI traditional healers who understand the profound spiritual suffering many face in their community, particularly when experiencing serious illness, and know how traditional healing can address it.

Partners human research served as the single institutional review board (IRB) for clinical/academic partners. Additional approvals were obtained from each Tribal health board/IRB and great Plains Region Indian Health Service.

We developed interview guides for traditional healers iteratively with input from CAB members, who noted that it was crucial to honor the sacredness of AI healing and advised against recording traditional healer interviews.⁴ They also recommended that a Native study team member begin the interviews.

We incorporated the CAB’s guidance by ensuring the interview team consisted of two Native members and one non-Native researcher. Native team members began with greetings, introductions, prayer, and rapport-building. During each interview the three research team members took handwritten notes and then synthesized these notes into a narrative. We viewed this methodological strategy as a variation of the traditional memoing utilized in grounded theory thematic analysis,¹⁰ though memoing is usually seen as complementary to traditional transcript coding, not instead of it.

Best Practices Regarding CABs and Native/Non-Native Dyads

With guidance from AI research team members, we decided to convene three separate CABs, composed of enrolled Tribal members from each of the three Tribal communities. While it might have been simpler to convene a single CAB, adequate representation from each Tribal community was crucial. This ensured we weren’t making assumptions or generalizations about individual Tribal communities within a Tribal nation, or worse still, generalizations about all AI/ANs.

The Native/non-Native dyads described above were important both during the interviews and data analysis process. Native perspectives and voices need to be centered not only in the data gathering, but also in the analysis and interpretation. This was a small example of how “..collaborative structures, and negotiation between PIs and community leaders can challenge oppressions and create space to make community knowledge visible.¹¹”

Best Practices Regarding Structuring of Research

The strengths of the Tribal communities our team partnered with were immediately apparent. However, determining a practical model ensuring community members contributed throughout all phases of research was an iterative process. We conceptualized our Native/non-Native partnership as comprising two domains of expertise: academic partners’ expertise in research methodologies and Tribal partners’ expertise in culturally responsive community interactions (Fig. 1). If both domains are not considered throughout every step of the research, true CBPR is not attained, and culturally responsive research practices are not achieved.

Fig. 1.

Research processes development model for Tribal-academic research partnerships.

Fig. 1 also highlights the importance of recognizing “ideal vs. acceptable” research methodologies. For example, recording interviews would be ideal for transcription and coding software; however, the baseline acceptable core of CBPR is centering marginalized populations’ perspectives through analysis of themes emerging during interviews. We accomplished this baseline core without offending traditional healers by not recording interviews.

Furthermore, both circles do not have equal weight. If the team could not accomplish the research proposed while honoring Tribal values and customs, then it could not proceed. Building in a hard stop if Native partners’ expertise is not able to be fully honored is crucial in CBPR in AI/AN communities. The domain of Native partners’ expertise also involves layers of community involvement (Fig. 1). Having at least two layers of community interaction for every step of the research process provided a built-in check to ensure academic perspectives were not domineering.

Best Practices Regarding Protecting Sacred Knowledge

We recognized that the typical academic mindset of “the more data the better” displayed a lack of understanding of traditional cultural values. With input from the community, our perspective shifted toward: “What is the minimum necessary information I need to answer these research questions?” along with, “How can I best respect and protect the sacred knowledge traditional healers shared?” This aligns with Tribal values of respect and honoring elders and led to illuminating conversations amongst our Tribal-academic partnership about Western values of prosperity and individuality (“I take what I can and am rewarded for my initiative!”) vs. AI/AN values of stewardship and conservation (“I am part of a larger community and take only what is needed with respect and humility”).

Publishing our interpretation of sacred knowledge that was shared without working with the community to ensure the research approach and dissemination was culturally-responsive and did not “disrespect, exploit or misinterpret cultural or traditional worldviews”² would be an erosion of trust. It was important to recognize that sacred knowledge that may inform our PC intervention had been shared with our team but should not be shared within the literature.

Wilson et al describe the importance of maintaining privacy of knowledge “which may be restricted to be known only by traditional healers. Some AI/AN communities prohibit the recording of traditional knowledge, so it is important to seek the advice of cultural experts to safeguard the interpretation of research findings.²” Though their team worked with a different AI Tribal community, it was validating to realize that engaging traditional healers in qualitative interviews without recording interviews has been encountered previously.

Thank you for this opportunity to share the unique lessons our team has learned when applying qualitative methodologies to CBPR involving AI traditional healers.

Disclosures and Acknowledgments

This work was supported by the National Cancer Institute (1R01CA240080-01) and the Cambia Health Foundation. BRD receives funding from the Cambia Health Foundation through the Sojourns Scholars Leadership Program. Funders had no role in the design of the study; collection, analysis, and interpretation of data; or in writing the manuscript. The authors have no conflicts of interests or other disclosures to report.

The authors wish to thank our CAB members for their gracious guidance, and the traditional healers who generously shared their perspective and wisdom.