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.”
From Research to Practice
The role of storytelling
Medicine and healing are not just about technology and treatment, but also about the human-to-human interactions and trust that clinicians build with patients and their families. In order to provide holistic care, clinicians need to understand a patient’s personal situation and experiences to gain a better perspective of the bigger picture affecting their health.
For Indigenous people – historical misinformation, isolation and a distrust of Western medicine has created a large gap within our healthcare system. Many of the health disparities experienced by Indigenous peoples are closely connected to the history of colonization.
Storytelling, an important practice in Indigenous cultures, can be facilitated through arts-based activities and/or talking circles. This practice has the potential to help rebuild trust and close this gap by validating and expressing experiences, as well as nurturing relationships. Incorporating this sharing of knowledge into healthcare plays a vital role in creating a culturally-sensitive environment where Indigenous people feel comfortable and respected while receiving healthcare.
By respecting culture and involving communities through traditional Indigenous practices like storytelling, healthcare professionals can improve health outcomes for underserved and marginalized communities.
