Ask before you ask

Knowledge emerges only through invention and re-invention, through the restless, impatient, continuing, hopeful inquiry human beings pursue in the world, with the world, and with each other.

Paulo Freire, Pedagogy of the Oppressed¹

The Commission on Social Determinants of Health lists low education levels, living in poverty, and being of Indigenous ancestry as 3 of the 14 social determinants of health^2,3; however, the connection between health and education has largely left communities and Indigenous peoples out of the conversation. This article describes phase 1 of 4 in a community-led research project that was co-created with urban Indigenous Elders to support an urban Plains Cree community composed of numerous First Nations residing in Treaty 6 Territory. This mixed-methods participatory social justice⁴ study was co-created with Elders to illuminate how health and literacy intersect and how community can engage in influencing the social determinants of health in “a good way.” The other 3 phases were data collection, authentic engagement, and celebration of participation (phase 2); data entry, participatory analysis, interpretation with the community, and celebration of participation (phase 3); and identification of the changes that evolved from the findings, co-designing a community-led program of research that reflected the desired changes, co-implementation of the changes, co-dissemination of the findings, and co-evaluation of the program (phase 4). It was deemed imperative by the Elders involved in phase 1 that health care practitioners needed to reflect on how colonialism affects all peoples.

Freirean theory,^1,5,6 the calls to action outlined in the final report of the Truth and Reconciliation Commission of Canada,⁷ and action research^8,9 teach us that inquiring from within and giving local communities the ability to share their lived experience can be liberating, productive, and sustainable. Traditionally, Indigenous Elders sought to build the bonds of community and advise on matters important to the community. However, there is a paucity of research about how to work with Elders¹⁰ and promote authentic engagement. In addition, there is no common understanding on how Indigenous peoples define health, wellness, and social determinants of health, or determine research questions that could tackle the root causes of health disparities.¹¹

Research undertaken has frequently neither reflected an Indigenous worldview nor provided benefits to Indigenous peoples who have participated.⁴ Our research sought to shift the conversation from health disparities to capacity building by engaging with Elders as the foundational step (phase 1) to working in and with the community. The complexity of health disparities, the local context (eg, intergenerational impact of residential schools, day schools, the Sixties Scoop, colonization, trauma) implores researchers to dig deeper with the community into the root causes.¹² Appropriate engagement with Elders laid the foundation for authentic engagement,¹³ created ethical space,¹⁴ and facilitated a richer understanding of community-based participatory health research.

Thus, the research questions that were co-created with the Elders were the following:

1. What are the current connections between literacy and health within urban Indigenous families?

2. What literacy issues continue to marginalize the community?

3. How would you like this information shared or disseminated?

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