Taking Up Indigenous Research in the HIV Endgame

Renée Masching and Tracey PrenticeHIV Endgame IINovember 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 MeetingRegina, 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

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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

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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?

AN INDIGENOUS HIV RESEARCH FEAST

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

People who use drugs

Women

2‐Spirit Men

Trans Women & Men

Youth

Families, incl. 

Fathers

Northern Rural & On‐Reserve

Straight Men

People who use Solvents

Métis

Francophones

Inuit

2‐Spirit Women

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Prisoners

PREPARING

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SHARING

Issues/Themes

IncarcerationStructural/Systems Research

Accessing & Engaging in Health & 

Social Services

IDU & Harm 

Reduction

Prevention, Treatment & Care

HIV Testing & 

DiagnosisFamilies & Kinship Colonization 

& Impacts

Racism, HIV Stigma & 

Discrimination

HIV, Co‐Morbidities & Intersecting 

SDoHCulture 

& Healing

Indigenous Health 

Measurement

Vaccines, Trials, 

Biomedicine

Sexual & Reproductive 

Health

Program Delivery

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 synthesizework 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

Key Messages

• There’s always room at the table ‐ Broad spectrum of issues that need attention and need collaboration

• Research with Indigenous communities and about Indigenous issues must attend to Indigenous research approaches (Protocols and Practice)

Full Team Acknowledgement

• Renée Masching Nominated Principal Knowledge User• Charlotte Reading Principal Investigator• Marni Amirault Principal Knowledge User• Sherri Pooyak Principal Knowledge User

• Catherine Worthington Co‐Investigator• Kevin Pendergraft Knowledge User• Liviana Calzavara Co‐Investigator• Mona Loufty Co‐Investigator• Saara Greene Co‐Investigator• Sean Rourke Co‐Investigator• Terry Howard Knowledge User

• Patrick Brownlee Collaborator

Additional Acknowledgementsacey Prentice Project Coordinator

rsten Smith undertook an extensive literature search and eveloped a database of resources

andy Jacksonwrote a narrative from the lit

der Cliff Thomas and Knowledge Keeper Wanda Whitebirdned us in developing our Feast framework

nded by CIHR, FRN 127103

Reneem@caan.ca