The Kotawêw Indigenous HIV/STBBI Doula Project: How kinship has guided our research journey
The Kotawêw Indigenous HIV/STBBI Doula Project is a community response to the disproportionate impact of HIV and other sexually transmitted and blood-borne infections (STBBIs) on Indigenous women and gender-diverse people. While our work is currently in the research phase, our goal is to co-create a curriculum to train Indigenous doulas who can support community members by fostering connections to HIV/STBBI prevention and treatment services through care grounded in kinship and traditional practices.
Our core team is made up of Indigenous women and Two-Spirit researchers with lived experience, and allies. The project is co-led by two Elders/Knowledge Holders, Albert McLeod and Leslie Spillett, as well as co-principal investigator Laverne Gervais. This work is personal for all of us and guided by a collective understanding that HIV and STBBIs affect not just individuals but entire kinship networks. Aunty Rose, a community member with lived experience who shared her story in our research, expressed this beautifully:
You’ve always heard the saying, ‘It takes a community to raise a child.’ It also takes a community to grow with HIV, to be informed about HIV, to understand HIV, to get educated.
Her words reflect a truth that resonates through all the stories we have gathered. Kinship, relationships, connection and community are essential parts of HIV and STBBI care.
The word kotawêw, derived from Cree, means “making a fire”. This act of creating warmth and light symbolizes the doulas’ role in igniting hope and healing within the community. By offering culturally safe and relational care, these doulas illuminate the paths of Indigenous women, as well as Two-Spirit, trans and gender-diverse people who are navigating complex health journeys.
Our Elder Leslie Spillett often speaks of fire as a sacred force that, like each of us, carries purpose. Fire brings people together and serves as a calling to return home. When we care for the fire, it cares for us. The Cree word for fire, iskotêw, translates to “the heart of a woman”. This teaching guides our work as we tend to the fire within our relatives – keeping their hearts, spirits and well-being at the centre of our care.
What is an Indigenous HIV/STBBI doula?
As reproductive and birthing approaches that encompass Indigenous practices and ways of knowing experience a meaningful revival, there has been a resurgence in the traditional role of helpers, known as doulas. Rooted in the tradition of people with experience giving birth supporting each other through pregnancy, labour, birth and postpartum, doulas offer continuous non-medical, physical, emotional and advocacy support. While research has extensively explored the traditional roles of doulas in the context of birth, there is a notable gap in understanding their potential contributions to HIV and STBBI care and prevention for First Nations, Inuit and Métis women, as well as Two-Spirit, trans and gender-diverse people.
Our project aims to bridge this knowledge gap by exploring the role of Indigenous doulas in HIV/STBBI prevention and care. We are dedicated to uncovering insights that can enhance the support and care provided by doulas within these communities.
An Indigenous HIV/STBBI doula walks alongside individuals living with or affected by HIV and STBBIs, fostering relationships rooted in kinship, advocacy and cultural connection. This role goes beyond conventional healthcare support: it involves offering guidance, companionship and access to cultural practices, such as sharing circles and connections to Knowledge Holders.
Our early findings highlight that an HIV diagnosis often feels like a lonely road. Many relatives shared experiences of isolation and difficulty finding safe spaces where they could discuss their diagnosis. They emphasized the importance of having a doula who shares lived experience – another Indigenous person who understands firsthand the stigma and challenges of living with HIV or having an STBBI. This shared understanding can create a sense of safety and trust, breaking down barriers caused by stigma.
Community wisdom and key themes from our preliminary findings
Throughout this journey, relatives, Knowledge Holders and helpers have shared invaluable insights that have shaped the foundation of our work. These insights include the importance of building trust and fostering long-term relationships, as well as centring cultural practices like storytelling and sweat lodges to reaffirm identity and complement biomedical care. Tangible support, such as system navigation, harm reduction resources and access to housing and healthcare, is essential for meeting basic needs. Emotional support, including advocacy and reducing isolation during diagnoses, is vital for well-being. Many also emphasized that addressing stigma and gender-based colonial violence requires education, trauma-informed care and community-led healing.
Helpers and service providers underscored the importance of providing non-judgmental care and culturally safe support while navigating systemic challenges. Knowledge Holders highlighted the need for cultural humility and spiritual guidance, while relatives spoke about the emotional labour of supporting loved ones and their own experiences of stigma.
A call to action
Our call to action is for communities, researchers and healthcare systems to look beyond Western biomedical models of care. We understand that the needs of community members are holistic and cannot be addressed solely through clinical approaches. Care for Indigenous people living with or affected by HIV/STBBIs must be rooted in Indigenous ways of knowing, relational care and kinship values.
The Kotawêw Indigenous HIV/STBBI Doula Project is a step toward restoring systems of care based on connection and community. By reclaiming traditions and centring kinship in care, we hope to disrupt the current overrepresentation of Indigenous people affected by HIV and STBBIs and build a future where no one has to walk those journeys alone.
We invite our relatives, community members and allies to gather around the fire with us, tending to it with care and purpose so that it may continue to bring warmth, light and healing to all who need it.
Candace Neumann is a Métis artist, student, doula, sundancer, cedar bath practitioner, community worker and facilitator from Winnipeg, Manitoba. She is currently enrolled in the Master of Social Work program in Indigenous Knowledges at the University of Manitoba.
Melissa Morris is Two-Spirit/Indigiqueer and proudly holds citizenship with the Manitoba Métis Federation, tracing her ancestral roots to the Red River Settlement in Northern Manitoba and Saskatchewan. Melissa is a prominent activist, using her strengths-based narrative to address the disparities that Indigenous people living with STBBIs encounter. Melissa serves as the community coordinator at the Waniska Centre for Indigenous STBBI Research and works through their community partner Ka Ni Kanichihk, additionally, she is the Manager at the Village Lab. In her spare time, Melissa volunteers with the Nine Circles Community Health Centre, where she serves on the board of directors and the Lived Experiences Advisory Committee.
Rusty Souleymanov, PhD, is an associate dean and associate professor in social work at the University of Manitoba, with interdisciplinary training in social work, public health and psychology. He is also the director of the Village Lab. His research centres on the health and well-being of socially and economically marginalized communities, with the aim of informing culturally sensitive models of HIV programs, healthcare and community-based services. Rusty serves on the board of directors of Nine Circles Community Health Centre, Realize, Shared Health Manitoba, and on the stewardship team of the Manitoba HIV/STBBI Collective Impact Network.