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L-R: Dr. Mona Loutfy, Doris Peltier and Renée Masching (Canadian Aboriginal AIDS Network)

Healing Through Research

Engaging Indigenous communities in solutions to improve health

For many Indigenous people, the history of colonization and the negative experiences associated with it have resulted in distrust of the healthcare system. It can be extremely difficult to engage Indigenous communities in health services, and even more so to have them participate in research studies. Inclusion of Indigenous participants in research is essential in understanding the health gaps that they experience and developing culturally-sensitive healthcare services.

“It’s important for us to first recognize their potential experiences and lack of connection to Indigenous culture that come from the long history of colonization and practices like residential schools,” says Dr. Mona Loutfy, senior scientist at Women’s College Research Institute (WCRI). “Taking the time to build trust and relationships with Indigenous people and their communities is the first step in engaging them in both healthcare programs and research studies.”

Indigenous women living with HIV, a group that Dr. Loutfy works with closely in both her clinical practice and research program, are particularly affected by the significant health disparities faced by Indigenous peoples. Indigenous women living with HIV require care that goes beyond standard HIV treatment and addresses the trauma from experiences related to colonization, including disruption of the family unit and increased levels of violence. This trauma not only puts Indigenous people at risk for contracting HIV, it also makes it difficult for them to navigate the healthcare system once they have HIV due to distrust in healthcare institutions.

“Indigenous people view health and well-being in a more holistic way that is very different than Western medicine,” adds Dr. Loutfy. “By understanding this view and using culturally-aware practices, we can work with Indigenous people to help them determine what they want and need in their healthcare.”

Community-based approaches to research are an essential part of culturally-aware practices and a method that Dr. Loutfy has employed in her research program for 15 years. This approach involves connecting Indigenous people with community-based organizations such as the Native Women’s Resource Centre of Toronto and the Canadian Aboriginal Aids Network (CAAN), as well as hiring Indigenous women to participate in conducting research.

It has been a priority for Dr. Loutfy’s research program to hire and train Indigenous women living with HIV to work as peer research associates, who will go out into their communities to find, connect and consent research participants. These peer research associates also conduct focus groups, interviews and/or surveys.

“It really is crucial to have an Indigenous woman living with HIV working with me, who knows the individuals in their community and is able to meet with potential research participants in spaces where they feel most comfortable,” notes Dr. Loutfy. “In turn, by hiring these women to be research associates, we are able to support them in achieving success within the academic system – another colonized institution. Our research associates have been incredibly successful in obtaining graduate degrees and scientist positions.”

Another fundamental part of the research process is to know and follow Indigenous protocols including working with Elders and partaking in ceremonial traditions like the giving of tobacco. Before they agree to participate in research, Indigenous women will ask if these traditions and protocols have been followed. The Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – guidelines required for research involving humans – has an entire chapter on research involving First Nations, Inuit and Métis peoples of Canada that emphasizes the importance of observing Indigenous protocols in research studies. These guidelines also outline the necessity of having a Memorandum of Understanding (MOU) with an Indigenous community, in addition to a community engagement plan. For Dr. Loutfy’s research to improve health for Indigenous women living with HIV, the Women and HIV Research Program has an MOU with CAAN, their Indigenous community partner.

Indigenous drum used in memorandum of understanding ceremony

“When we established our MOU with CAAN, we had a ceremony to formalize the agreement and celebrate the friendship between the two groups,” adds Dr. Loutfy. “We also decided to give CAAN the funding dollars from the research grant to allow them to make decisions about where the money should go. This supports self-determination of Indigenous people – providing them the autonomy to make their own decisions about the work that is going to impact their communities.”

Autonomy over data collected on Indigenous people is another important part of the research process. Ownership, Control, Access and Possession (OCAPTM) standards assert that First Nations have control over data collection processes in their communities, and that they own and control how this information is used. For Dr. Loutfy’s Canadian HIV Women’s Sexual and Reproductive Health Cohort Study, the team had a data transfer ceremony with the Indigenous Community Advisory Board to show respect for these principles and continue to build upon the relationship of trust.

The way data is collected for Indigenous research projects is tied closely to cultural traditions and practices. In Strong Bear Women’s Journey, Dr. Loutfy and her colleagues used community-based research methods to determine the healthcare needs and experiences of Indigenous women living with and affected by HIV in Toronto and Thunder Bay to offer recommendations for delivering appropriate care. These women occupy a complex social positioning that is affected by factors such as colonization, racism and HIV stigma, as well as additional responsibilities associated with womanhood that coincide with barriers impacting access to healthcare.

In the first phase of the study, Indigenous research coordinators hosted a series of sharing circles where they just talked and no research was gathered to allow for trust to be built with the participants. A three-day drum-making retreat was then conducted where additional sharing circles served as research focus groups for collecting data about their experiences.

“We know that Indigenous people really enjoy reconnecting with cultural practices, like drum- and doll-making, that have been lost within many communities,” says Dr. Loutfy “It is important for us to integrate these arts-based activities into our studies, so that engaging in research becomes part of the healing process for Indigenous people.”