Meeting standards for community-engaged Aboriginal health research

More than one million Canadians, representing almost 4% of the nation’s total population, self-identify as First Nation, Métis or Inuit (the three main Aboriginal groups in Canada) (1). Nearly one-half of the Aboriginal population is made up of children and youth younger than 24 years of age (1). Aboriginal children, youth, and their families are strong and resilient peoples with rich, diverse cultures and languages. Despite these strengths, significant health disparities exist between Aboriginal and non-Aboriginal populations (2,3). These disparities occur, in part, as a result of past and current colonial practices, intergenerational trauma secondary to residential school experiences and the ongoing impact of racism (2–5).

As researchers, we have become especially adept at documenting ‘problems’ in Aboriginal communities but are less skilled at identifying community strengths, resources and culturally relevant solutions. Aboriginal scholar Marlene Brant Castellano quotes an Aboriginal Elder who describes a widely held view, “If we have been researched to death…maybe it’s time we started researching ourselves back to life” (6). In addition, research, as it is conducted by Western science, is often rejected by many Indigenous scholars worldwide as a continuing aspect of colonialism (6,7). The importance of community engagement in research has been demonstrated repeatedly and the most sustainable improvements in communities have been shown to occur when members contribute in meaningful ways to health solutions (8,9).

In the current issue of Paediatrics and Child Health, Lemstra et al complete a series of cross-sectional studies (10,11 [pages 10–14], 12 [pages 15–20]), in which they use survey data to document the prevalence of many of the disparities facing Aboriginal communities including youth suicide ideation and high-risk behaviours (tobacco, alcohol and marijuana use) that lead to poor health, as well as other potential risk indicators (10–12). The prevalence of these conditions has been documented in a number of studies and surveys involving Aboriginal populations (13,14); however, the authors note that this is the first time this information has been documented for on-reserve youth in Saskatchewan. In the present commentary, we use the issues raised by these articles to highlight the importance of engaging in more culturally responsive research with Aboriginal communities.

In their three cross-sectional studies, Lemstra et al (10–12) examined data from a number of surveys and scales designed for use in the general population. They state in their two most recent publications that “41 community consultations occurred”; however, it is unclear from the articles how these consultations contributed to the identification of the survey questions and subsequent potential explanatory variables. Was the choice of variables a part of the 41 community consultations? Was the community given the opportunity to identify other questions that may not have been a part of the surveys but were important to them? How were community Elders and knowledge holders involved? In their concluding paragraph, Lemstra et al (11,12) suggest that the risk indicators they identified could be used to assist in the development of prevention interventions, but how effective will those interventions be if the strongest potential explanatory variables are not included in the analysis? The ‘best’ variables require engaging the community in culturally appropriate and meaningful conversations that explore their understanding of the issues being studied and how these issues might be addressed. If the variables included are chosen by researchers who have minimal understanding of the lived experience of community members, then important information may be missed and prevention interventions that are developed based on study results are less likely to be useful.

Engaging the broader community is especially important in Aboriginal communities where collectivism and holism are valued over individualism. Engaging a wider range of community members as meaningful partners in all aspects of the research may have led to the identification and inclusion of variables that many communities believe to be important, such as intergenerational trauma, racism and cultural disruption. Furthermore, community-identified variables may have been reframed as protective factors including spirituality, safe, supportive and connected communities, and strong community infrastructure (15). This reframing of ideas changes the context from one of problem identification to one of opportunity and solutions. This dynamic is critically important in communities where stereotypes are often perpetuated as a result of research presented out of context and without the partnership of community members.

Many Aboriginal and other research organizations recommend that researchers follow the principles of ownership, control, access and possession (OCAP) model developed by the First Nations Regional Longitudinal Health Survey and the First Nations Information Governance Centre (16). The OCAP principles call for engaging the community in research that is more holistic, community controlled and meaningful. They support the use of a community-based participatory research (CBPR) approach (17). The Tri-Council Policy Statement (TCPS) on ethical conduct for research involving humans, developed by the Canadian Institute for Health Research, the National Science and Engineering Research Council and the Social Science and Humanities Research Council, also emphasize the importance of a participatory approach to any research that involves Aboriginal people (18). The TCPS guidelines further state that community Elders and knowledge holders should be consulted to ensure appropriate research design, ethical conduct and accurate interpretation of results. Lemstra et al (11,12), state that OCAP principles and the TCPS guidelines were followed and that extensive community consultation took place; however, community collaboration, a critical piece and the hallmark of CBPR, and the engagement of community Elders and knowledge holders appears to be missing. Consent, consultation and collaboration encompass different levels of community participation. Consent implies approval to move forward with a research project and consultation, which was performed by Lemstra et al (11,12) includes efforts to obtain community input. Collaboration goes one step further, ensuring meaningful and equitable partnerships between researchers and community members in all stages of the research. Anyone engaged in Aboriginal health research has a responsibility to ensure that not only researchers but communities have a complete understanding of the OCAP and TCPS principles and guidelines and their option to engage in a collaborative, community-based participatory approach.

CBPR is an important and relatively recent research philosophy in the medical sciences. It is not a method or methodological stance, but rather ‘an orientation to research’ that transforms the roles of researcher and researched (8,9). CBPR gives voice and power to community members, builds strengths and resources within the community, provides a critical understanding of the causes and consequences of the issues under investigation and empowers the community to define their own research questions and to apply local knowledge and experience to data (8,9). It addresses the need for knowledge translation by ensuring that end-users come together at the beginning of the project, contribute their expertise, participate in decisions made throughout the research process and share ownership of the research data and outcomes (18). These factors lead to more relevant and effective interventions, policy recommendations and social change aimed at improving the health of community members (18,19).

The literature includes many examples of the use of CBPR in medical research. Recent examples include the cultural adaptation and implementation of a substance abuse prevention program for Aboriginal children and youth (20) and a collaborative after-school program to prevent obesity in African American children (21). In epidemiological studies, including studies based on survey data, Leung et al (22) found that CBPR improves our understanding of the context in which disease occurs and increases the relevance of results to applied health and policy development.

The growing interest in CBPR is related to an accumulating understanding that complex health and social problems are ill-suited to ‘outside expert’ research and the effectiveness of CBPR where health disparities and systemic inequities are a factor (8,9). The principles and practice of CBPR have been thoroughly documented in numerous textbooks and peer-reviewed publications (19,23). A number of peer-reviewed journals are now dedicated to research that encompasses a CBPR approach, and centres of higher education throughout North America have developed partnerships, institutes and affiliations with nonprofit organizations that advocate for and support the scholarship of engagement. While some communities may not be prepared for or interested in full collaboration, they may also be unaware or not fully informed of their option to play a much larger role.

If we are going to make a difference in the health of children and youth, we must move beyond conventional approaches to health research and increasingly conduct collaborative research in partnership with Aboriginal communities. As researchers, we need to share power, authority and control and encompass a new approach to research that values the contributions of those affected by the issues being studied. There is a critical difference between community-‘placed’ (even when approved by leaders) and community-‘based’ research. A community-based participatory approach to research builds the capacity of community members to identify strengths and resources that will contribute to health solutions, including the implementation of effective and sustainable prevention interventions. CBPR contributes to policy changes that address the root cause of health disparities while the research process itself supports a process of decolonization through empowerment and social justice (9).

Lemstra et al (10–12) have taken some of the steps toward a community-based participatory approach to research, but we are hopeful that future researchers will take the process one step further toward meaningful and collaborative community partnerships. This process, while more time consuming, is in the end more rewarding.