Indigenous Community-Based Participatory Research Approach and Safe Return to In-Person Learning for Diné Youths and Families

“Data speaks, it sings, it carves, it paints. And how we tell the story is very powerful.”

—Abigail Echo-Hawk, MA

Director, Urban Indian Health Institute

Executive Vice President, Seattle Indian Health Board ¹

The first case of Dikos Ntsaaígíí-19 (COVID-19) was identified in the Navajo Nation on March 17, 2020. Schools across the reservation had been ordered to close the day before, disrupting traditional schooling for thousands of families. The COVID-19 pandemic was particularly challenging for many Navajo communities because of longstanding social inequities caused by the legacy of colonization, historical trauma, and ongoing discrimination. However, the collective response, rooted in Navajo teachings and ways of knowing, helped to change the course of COVID-19 through the implementation of robust public health measures.

All Navajo Nation schools remained closed through the 2020–2021 school year. At the beginning of the 2021–2022 school year, our team of Indigenous and allied researchers launched a new study, Project SafeSchools (PSS), which aimed to facilitate a safe return to in-person learning through implementation support for COVID-19 screening and diagnostic testing. Embedded in PSS was a cohort study aimed at understanding the mental, physical, behavioral, and spiritual effects on families and children as they returned to in-person learning.² The PSS study leveraged an Indigenous Community-Based Participatory Research (ICBPR) approach. Herein, we describe ICBPR, provide an example of how it was utilized in the PSS study, and provide practice-based guidance to support future research and policy with Indigenous communities.

DEFINING INDIGENOUS CBPR

Community-based participatory research (CBPR) represents an orientation that aims to address power imbalances between researchers and the “researched.”³ CBPR authentically engages those most affected by research, including participants, their families, and other people in the community, and can help address past wrongdoings of researchers by building relationships and trust in service to community action.⁴ Key values of CBPR focus on power-sharing, partnership, and collaboration between researchers and communities, and receptiveness to and value in feedback from participants.⁵

ICBPR extends standard CBPR approaches by acknowledging the significance of unique historical, cultural, and ongoing circumstances specific to Indigenous communities.⁶ An ICBPR approach is particularly important within Indigenous communities because of past research harms, lack of inclusion of Indigenous researchers, and underutilization of Indigenous knowledge, methodologies, and priorities.⁷

Our Johns Hopkins Center for Indigenous Health (JHCIH) team has worked in partnership with Tribal Nations for more than 30 years. Current work includes partnering with more than 155 Tribal Nations in 26 states and includes more than 260 employees, 88% of whom identify as Indigenous. The JHCIH operationalizes ICBPR through (1) acknowledgment of historical experiences of research in Indigenous communities; (2) upholding and promoting tribal sovereignty and Tribes’ inherent rights to govern research within their Nations; (3) understanding and valuing diversity within and across Tribes and Indigenous Peoples; (4) honoring cultural knowledge keepers and incorporating cultural strengths into the research process; (5) broadening metrics of success to be inclusive of community action, dissemination, and team relational well-being; and (6) investing financially and otherwise in the training and support of Indigenous scholars to become public health leaders in their community and beyond.

OPERATIONALIZING INDIGENOUS CBPR

To demonstrate the application of ICBPR principles and how they facilitated and enhanced recruitment and retention efforts, we provide examples and brief descriptions from the PSS study (Table 1).⁶

TABLE 1—

Examples of Indigenous Community-Based Participatory Research (ICBPR) in the Project SafeSchools Research Study

ICBPR Principle	Corresponding Principle From Laveaux and Christopher6	Project SafeSchools in Practice
Acknowledgment of historical experiences of research in Indigenous communities	Acknowledge historical experience with research and with health issues and work to overcome the negative image of research	Community-based research teams; power-sharing
Upholding and promoting tribal sovereignty and Tribes’ inherent rights to govern research within their Nations	Recognize tribal sovereignty	Local institutional review board approvals; data-sharing protections
Understanding and valuing diversity within and across Tribes and Indigenous Peoples	Differentiate between tribal and community membership	Community as a unit of identity
Honoring cultural knowledge keepers and incorporating cultural strengths into the research process	Recognize key gatekeepers; utilize Indigenous ways of knowing	Community advisory boards; leveraging care from cultural medicine people; Navajo Wellness Model
Broadening metrics of success to be inclusive of community action, dissemination, and team relational well-being	Plan for extended timelines; interpret data within the cultural context	Balancing research and service activities
Investing financially and otherwise in the training and support of Indigenous scholars	Prepare for leadership turnover	Scholarships for study staff; webinars for study team to understand results; participatory writing processes

Research in Indigenous Communities

The PSS study employed community-based research teams that consisted of Diné (Navajo) researchers from the communities where the research would occur. Local teams worked to create trust and transparency with individual participants to encourage study participation and ensure retention. This included maintaining flexible schedules, meeting participants in the communities, and translating questions and forms into Navajo. These methods have been strengthened by the teachings of our ancestors, to listen and be patient with individuals no matter the circumstances. Local teams were supported by an Indigenous and allied leadership team, in which two out of five members were Diné. This power-sharing approach by an ethically and culturally diverse pool of multidisciplinary investigators created meaningful leadership for the study team and supported recruitment and retention efforts.⁸

Tribal Sovereignty and Research

Tribes are sovereign nations. While PSS was reviewed and approved by the Johns Hopkins Bloomberg School of Public Health institutional review board, we also sought approval from the Navajo Nation Health and Human Subjects Research Review Board for research activities, ongoing dissemination efforts, and manuscripts published with data collected from Tribal members. These processes, while sometimes slower than research conducted outside Indigenous contexts, are critical for ensuring that any research is done in accordance with the Tribe’s rights to govern studies within their Nations.

Diversity Within and Across Indigenous Tribes

The Navajo people’s community connectedness stems from the traditional teaching of k’e, a term that incorporates relationship and emotional ties within family, extended family, community, the nation, and the natural environment.⁹ From a young age, every Navajo is taught that love, care, compassion, and acknowledgment are universally extended to oneself and others. Although this teaching is a central principle across Navajo peoples, the community also contains great diversity. In each of the study communities, local teams worked within differing service landscapes and community models to tailor recruitment and retention approaches while remaining grounded in k’e. For example, in one of the local communities, the flea market was an active place to recruit participants, while in another, local sports games and other gatherings were strategic sites.

Cultural Keepers of Knowledge and Strengths

The study engaged a community advisory board to provide wisdom and feedback throughout the study. The community advisory board included several cultural knowledge keepers who provided their unique expertise on study activities. In addition, team members worked with participants to support and facilitate connections to supplementary care in the community, including cultural medicine people who could support participants in their healing journeys. Finally, we utilized the Navajo Wellness Model¹⁰ to help guide study efforts. This model emphasizes the Navajo teachings on how to maintain health and wellness, or Hózhó, through key domains of moral and behavioral conduct and maintenance of relationships that help people be resilient and thrive.^10,11 The research team used the model to guide how to care for survey participants.

Because acute intervention was not a component of this study, administration of the surveys served as key times when the research team could check in with families and help support holistic health. The research team was aware of families who needed more support and was able to provide some basic supplies to these families. Survey incentives supported additional needs for families. A major part of the surveys included the identification of those more in need and connection to resources in the community for those and other needs. The research team maintained an updated list of local resources and services and used their positions in the community to help facilitate “warm handoffs” and efficient connections to outside care. In this way, the research team approached survey administration not just as a research activity but also as a way to check in on people in the community and make sure those people felt supported according to their needs. However, this additional resource navigation presented a challenge for the team. Supporting community members who were struggling took time, effort, and mental energy. Research staff learned over time how to balance the demands of supporting others in their communities with their own professional boundaries and need for self-care. To address these challenges, our team offered paid time off, encouraged self-care activities either as a group or off-hours, and facilitated connections to traditional practitioners in cases where those services would be helpful to the research team members.

Broadening Metrics of Success

This study was launched during an ongoing pandemic in a community that has historically been harmed by research and was disproportionately affected by COVID-19. As such, it was critical to ensure that our study was coupled with supportive public health services. This involved supporting schools with the implementation of COVID-19 testing (e.g., developing communication materials, laying out workflows, providing training, ordering supplies, facilitating parent education and outreach, and holding biweekly meetings with schools). Although the research team obtained secondary data from the schools to analyze, there was minimal control by the research team on how schools implemented testing. This service provision in the midst of an ongoing crisis helped to build relationships and trust that supported recruitment and retention efforts. It was also challenging to prioritize research during a public health crisis. Participants were often juggling work, childcare, and other commitments. School partners were navigating a complete paradigm shift in how to engage and teach students. In this context, it was hard for participants to find time to complete surveys or interviews. To address this challenge and complete research activities, our teams worked off hours and met people during lunch and at school. Research staff also facilitated warm handoffs between each other to maximize staff time availability.

Training and Support of Indigenous Scholars

Our teams worked both locally and at a distance to support our Indigenous team members in furthering their educations and goals in public health. The learning was bidirectional in many cases and included didactic applied online presentations related to how to design a study or interpret results, participatory writing processes whereby the local study team members were provided time to contribute to manuscripts, support for local Diné student research assistants to work on aspects of the project and analyze data for school projects, and ongoing support and bidirectional mentorship between more senior and junior members of the research team. Moreover, JHCIH works with junior Indigenous scholars to provide scholarships and ongoing training through a certificate program.

CONCLUSION

The PSS study enrolled a total of 357 adult participants within six months across two tribal communities. The follow-up rate between the baseline and second survey was 85.2%, and the follow-up rate between the second and third surveys was 92.4%. PSS study staff also supported partner schools to conduct more than 100 000 COVID-19 tests that helped identify cases before spread and contributed to a safer return to in-person learning. We attribute the strong follow-up rates and partnerships with schools to the ICBPR processes and methods described previously.

Integrating principles of ICBPR fostered an environment of trust and collaboration that supported recruitment, retention, and partnerships within the PSS study. By honoring and elevating thoughtful community knowledge and engagement, ICBPR processes can be used to generate solutions to address health inequities and improve public health efforts.