WATER JOURNEY: INDIGENOUS PEOPLES IN CANADA AND HEPATITIS C Sandy-Leo Laframboise Alexandra King The Lowitja Institute International Indigenous Health and Wellness Conference 2016 Melbourne, Victoria AU November 09, 2016
The journey begins Background: We experience way too much hep C Fueled by historical and ongoing trauma New and really good Hep C meds that cure We need a hep C research agenda developed by and for Indigenous peoples Purpose: Explore culturally resonant approaches to help us, Indigenous peoples, in our journey of healing, wellness and self-empowerment We want us, Indigenous people, to get full benefit from the new hep C meds and ideally maintain, if not eliminate, this health inequity We need a national strategy for Indigenous people in Canada and hep C
HOW WE DID IT
Approaches Self-determination / decolonization / OCAP By us, for us Two-eyed seeing Led by Indigenous people, working with our allies/supporters/friendlies Research approach
Worldviews Western Ways of Knowing Indigenous Ways of Knowing
Two-eyed Seeing The perspective of two-eyed seeing, as put forward by Mi kmaq Elder Albert Marshall: To see from one eye with the strengths of Western Ways of Knowing And to see from the other eye with the strengths of Indigenous Ways of Knowing and to use both of these eyes together.
Ancestral wisdom Meaningful involvement of Elders Making research about ceremony Smudging, tobacco protocol, song/dance/drumming Feasting Including wellness in research If you are bringing someone into darkness, you must leave them with some light. Elder Sharon Jinkerson-Brass
Wellness for each person
Community wellness 9
Our Amazing Team: Water Journey Research Steering Committee Most are Indigenous Community, academic and student researchers Elders and Healers Community members with lived hepatitis C experience Activists, peer researchers and allies
OUR EVENT (VANCOUVER, JULY 2015)
Starting and ending the day with ceremony Opening prayer and blessing Offering of tobacco Song, drumming and dance Medicine bundles Final group sharing circle Co-creating a Community Button Blanket Closing ceremony and prayer
Sharing circles Our questions: What is your experience of being an Indigenous person living with hepatitis C? What have you learned that you can share for the benefit of others? How has your (male, female, two-spirit or transgender) Indigenous identity affected your healing journey? Have you encountered barriers in accessing treatment? Have you been able to navigate those barriers? Data analysis Validation sessions
RESULTS MAJOR THEMES
Strength, resilience and hope Learning and mentoring from sharing stories and experiences Self-defined individual healing journeys Leadership in community healing journeys Active inclusion of Indigenous people in driving the research agenda
STRENGTH, RESILIENCE AND HOPE The reason why I believe I m still alive is because I looked into the face of my demons. I stopped pushing them behind me, and stopped pretending they weren t there. I brought them out in front of me, right, so I could learn to love them. And that s way harder to do than it is to say. ~ Women s Circle
Intersectionality Our realities are shaped by interaction of: Complex, systematic injustices and inequities Upstream factors (e.g., Indigeneity, gender, colonization) Drug use, homelessness, incarceration, stigma, HIV co-infection Can both hinder and aid healing journey Experienced in unique ways by Indigenous people Care cascade needs to address more than hep C
INTERSECTIONALITY Multi-generational trauma that s enormous. That is absolutely huge. That is the reason why things are the way they are. Because of all of that history ~ Validation Session I was in foster care also, my whole life. And I ran away from foster parents at the age of 10 because nobody was hearing me out, and hearing me cry. So, I turned to the streets. That s how I got my hep C. ~ Women s Circle
Barriers across care continuum Mistrust of medical system: Historical (tool of colonization) Current (discrimination, lack of cultural safety) Socioeconomic, geographic barriers Anxiety, fears and mythology related to treatment and side effects Depression, hopelessness, suicide Strong need for healing and wellness
BARRIERS ACROSS CARE CONTINUUM Our geographical context transportation and infrastructure up here. How do you get to them? How do you do the testing? How do you deal with all those appointments? What about other needs? That s probably one of our largest issues up here. ~ Validation Session
Conflicting priorities Many competing priorities for people living with hep C Hep C often has no symptoms or causes non-specific symptoms Stigma At the individual, healthcare provider and systems levels
CONFLICTING PRIORITIES They want to focus on my HIV rather than my hep C. So I don t even know what s going on with it. ~ Women s Circle Many of the people we were talking to knew we re hep c positive and yet didn t feel like it was a priority. There are other things going on. ~ Validation Session
Health literacy Lack of hep C knowledge (participants, healthcare providers, frontline service providers) Lack of adequate explanations Misinformation and horror stories Lack of access to appropriate information throughout the care continuum (timing, format)
HEALTH LITERACY When I got my viral load for the first time, the nurse practitioner gave me my numbers. I asked her if that was good or bad. And she didn t know. Because there is just a general lack of knowledge everywhere. It s within the healthcare system. Any time one of my clients went in and they got an antibody test back for hepatitis C, the doctor tells them Well you have hepatitis C. That s not true. It s you have been exposed to a virus. ~ Validation Session
Transformation Importance of finding purpose along one s healing journey A turning point, event, activity or cause which gave people a sense of purpose Unique for each individual Examples include cultural and spiritual involvement, volunteering, activism, supporting others or a loved one
TRANSFORMATION So, I started to learn culture and tradition, I started on my healing journey. I started to come out of the darkness and into the light. ~ Two Spirit Circle [Hepatitis C] was a wake up call. A time in your life [to think about] who you are. What you do. What you want to be. What you want to do. ~ Validation Session
NEXT STEPS LAND-BASED HEALING ACTIVITIES
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MIIGWETCH! We acknowledge and are most grateful to our Elders, the research team, the research steering team and the participants. This reserch was supported by CIHR and CanHepC. Sandy-Leo Laframboise: dancingtoeaglespirit@gmail.com Alexandra King: alexandra.king@ubc.ca 778.870.4104