Taking Up Indigenous Research in the HIV Endgame Renée Masching and Tracey Prentice HIV Endgame II November 2016
Acknowledging and Honouring Traditional Territory of the Mississaugas of New Credit Nation Keepers of our Homefires
Who is CAAN? National non‐governmental, not‐for‐profit Membership driven with more than 500 individual and organizational members First Nation, Inuit and Métis staff, membership and partners also with allied staff members and partners Engagement from the grassroots to the UN
Telling the Aboriginal Story: Digging Deeper into A-Track Surveillance Data from Community Engagement Meeting Regina, SK June 23, 2016
Honouring Community Ownership
Background Public Health Agency of Canada in collaboration with All Nations Hope Network , Aboriginal community groups and the Regina Qu’Appelle Health region A behavioural and biological surveillance survey in Regina. The pilot survey was conducted between December 2011 and June 2012.
What did we learn? • The findings highlight some of the critical issues that exist around risk behaviours and the transmission of HIV in the Aboriginal population in Regina including: – history of family separations – History of incarceration – a high HIV prevalence amongst survey participants, with a strong connection to past or current use of injection drugs – more people who didn’t know that they had HIV than the estimated proportion of 25% for the overall Canadian population of people living with HIV 7
Learning to Tell Our Story • The stories we want to tell are important but different – Public Health interpretation and implications – Community interpretations • Results give life to the Aboriginal reality • We want to tell our story – and we need to learn how to work with the data to do this 8
Stable Homes, Strong Families
Stable Homes, Strong Families • Linking living with HIV with Indigenous culture and housing programs and policy • decolonizing and Indigenous methodologies and principles of two‐eyed seeing, • five 4‐day Digital Storytelling workshops in Toronto (x2), Victoria, Regina and Fredericton. – visual narratives that synthesized images, video, voiceovers, music, and text to create first‐person reflections on home.
Findings • embodying home • home is a journey • home is necessary for managing health • home as a relational and cultural experience • Meanings of home were connected to family, nature, culture and as a source of sacredness that resides within
Family Matters
Family members living with or affected by HIV experience many things including: • Financial strain and stress at work • Stigma and discrimination • Reduced access to health care • HIV‐related episodic illnesses • psychological stresses – These can contribute to risky behaviours.
Recommended Support/Care Models Many families will isolate themselves from their extended families and communities to protect themselves. • Culturally appropriate and holistic care models – respect cultural beliefs – combine care that complements traditional teachings and values • Supports should consider the whole family
Some of the key messages: • Need more/secure funding • Need more front line staff • APHAs should be involved in all areas including program development and delivery • Need more services for family members affected by HIV • Need more advertising of programs • Need more youth involved in all areas
Some Storytelling Circles Key Messages • Need programs where people living with HIV can go with their family members • Need supports for family members affected by HIV where they can address challenges they face • Need to address discrimination and exclusion
Where are we going?
A N I NDIGENOUS HIV R ESEARCH F EAST CIHR CTN Meeting, CAC Special Session, Montreal, QC, November 3, 2016
Acknowledgements • Traditional Territory of the Mississaugas of New Credit • Knowledge Keepers, Partners & Research Team Missing: Charlotte Loppie; Liviana Calzavara; Mona Loutfy; Sean Rourke; Kirsten Smith
Acknowledgements • Consultation & Survey Participants, Local Elders & Community Partners Missing: Charlotte Loppie; Liviana Calzavara; Mona Loutfy; Sean Rourke; Kirsten Smith
WELCOME TO OUR FEAST
Why a Feast? • Feast: an elaborate and usually abundant meal often accompanied by a ceremony or entertainment – also be as simple as berries • All people/nations feast • Celebrate/mark significant occasions with food • Social occasion / communal • Nourishing to body, mind, soul, and community • Everyone’s gifts/offerings are welcomed and valued • No one is turned away • Spiritual significance – spiritual practices • Ancestors
PROTOCOLS
PLANNING
Communities within communities Straight Families, Métis Men incl. Inuit Fathers ??? People Women who use drugs People Prisoners who use Trans Solvents Women Franco ??? phones & Men Northern Rural & On ‐ Reserve 2 ‐ Spirit 2 ‐ Spirit Youth Women Men ???
��� PREPARING
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SHARING
Issues/Themes HIV, Program Co ‐ Morbidities Delivery Racism, HIV & Intersecting Incarceration Stigma & SDoH Structural Discrimination /Systems Culture Research & IDU & Sexual & Healing Harm Reproductive Indigenous Reduction Health Health HIV Testing Measurement Families & Colonization & Kinship Accessing & Diagnosis & Impacts Engaging in Vaccines, Health & Prevention, Trials, Social Services Treatment Biomedicine & Care
Issues/Themes • Racism, HIV (and Related) Stigma & Discrimination* • in ALL systems, services and communities • Intersections with poverty, homelessness, substance use, gender and sexual orientations (stereotypes) • Accessing and Engaging in Health and Social Services* • particularly in northern and rural/remote communities (specialist care) but also in cities/communities • intersections with above • caring for clients with complex needs, Hep C, co ‐ morbidities
Issues/Themes • Colonization and its Impacts • Impact of trauma / historical trauma / trauma ‐ informed care • Intergenerational impact of residential schools / 60s scoop / child welfare system / Missing and Murdered Women • TRC Recommendations • HIV, Co ‐ Morbidities and Intersecting SDoH • Hep C, TB, Cancers, Diabetes, etc. • Including Substance Use, Poverty, Homelessness, Joblessness, Mental Health and Illness, etc.
Issues/Themes • HIV Testing & Diagnosis* • POC Testing • Awareness, Access to, and Increased Rates of Testing • Peer Navigators • Cultural relevance • Families / Kinship • Couples, Mothers, Fathers, Children • Women, Men & Youth • Child and Family Services • Families of Choice
Issues/Themes • Incarceration • HIV prevention and care inside • Reintegration • Harm Reduction • How can we increase uptake/understanding by communities / Elders / Leaders? • Wellness Research / Strengths ‐ Based / Resilience* • Culture / Healing / Traditions across the lifespan ‐ Resisting ‐ Reclaiming ‐ Restoring – Rekindling ‐ Reconciling
Issues/Themes • Prevention, Treatment & Care* • PrEP and PEP • Adherence and SDoH • Pain management • Traditional medicines and HIV • Integrating traditional and western models of care • Aging with HIV • Vaccines / Trials / Biomedicine • Issues of representation ‐ Indigenous / women / trans • Recruitment and retention challenges • Lack of ‘context’ for people’s lives • More mixed methods & integration of lived experience in research design
Issues/Themes • Structural/Systems Research • Understanding how existing structures/systems contribute to / create conditions for HIV in Indigenous communities • Shifting our gaze – looking upstream • Looking at ourselves • HIV / Indigenous education in health care professions / governments / services • Indigenous health measurement • Surveillance & indicators
Taking up the End game begins with successful Indigenous Research
Researching in a Good Way • Indigenous research / CBR • Indigenous led research as effective, engaging, exciting • Indigenous approaches / methods • Inclusive of/grounded in Culture / Elders / Ceremony • Focus on Strengths / Healing / Wellness / Restoration • Holistic ‐ Indigenous concepts of health • Combining Indigenous and Western approaches • Innovative, interdisciplinary approaches • GIPA / MEPA / MEWA • PHA engagement/training • Building local capacity/networks/knowledge
Researching in a Good Way • Need to synthesize work that’s already been done • Action ‐ oriented ‐ Program Science / Implementation Science / Intervention Research as important steps towards finding solutions • More/Better KTE and published articles so others can learn
GIVE AWAY
TAKE AWAYS
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