HIV prevention for Aboriginal women in Canada
By Renée Masching, Doris Peltier, Tracey Prentice and Randy Jackson
on behalf of CAAN
Within the Aboriginal community in Canada, HIV is having a profound impact on women and young people. This is a disturbing trend that requires a robust, immediate and ongoing response. This article emphasizes the importance of dedicated HIV prevention efforts to engage Aboriginal women as leaders and the community as a whole to meet the needs of women and maximize their health. We can and we must prevent new exposures to HIV and help prevent the too frequent rapid progression to AIDS for those living with HIV.
According to 2006 Census results, close to 1.2 million people identify as First Nation, Inuit or Métis (Aboriginal), representing 3.8% of the population of Canada.1 Aboriginal Peoples share a common history of colonization and a common world view grounded in relationships with each other and the natural world; however, there is also great diversity from coast to coast to coast. We speak more than 55 languages in 11 major language groups;2 there are 615 formal First Nations bands, 2,284 reserves, 52 Inuit communities3 and countless Métis settlements. Just over half (51.2% or 600,700 of 1,172,790) of all people who self-identify as Aboriginal are female. In addition, almost half (48%) of the Aboriginal population in Canada is under the age of 24, compared with 31% of the general Canadian population.1 These numbers describe a small part of the diversity of the Aboriginal population in Canada. We have different traditions and ceremonies; we live differently in urban, rural and isolated settings; and when assessing the colonial impacts on health, our challenges (including access to health professionals and information) vary widely.4,5
While Aboriginal Peoples make up 3.8% of the population, we made up 8% of all people living with HIV and about 12.5% of all new HIV infections in Canada in 2008. Three decades into the HIV epidemic, Aboriginal women bear a disproportionate share of the burden of HIV infection. Between 1998 and 2008, women represented 48.8% of all positive HIV test reports among Aboriginal Peoples compared to only 20.6% of positive test reports among women of other ethnicities.6 It is essential to note that HIV ethnicity statistics are not reported nationally from Ontario or Quebec, provinces with a high prevalence of HIV and where a significant proportion of the Aboriginal population reside.6
Rates of HIV infection among Aboriginal women continue to climb with new epidemics emerging in Saskatchewan7 and Manitoba.8 This reality affects all members of our communities, including Aboriginal men and the family unit as a whole.9 Given the young age of our population, the potential for women of childbearing age to be exposed to HIV is cause for concern.
Prevention in the Aboriginal community
We know that prevention within the Aboriginal community in Canada is most effective and realistic when it is community-driven and culturally sensitive.10 Successful prevention initiatives must:
- engage community, including HIV-positive Aboriginal women, in the planning and delivery of programs and services
- be holistic11 and recognize that our physical, mental, emotional and spiritual health are interconnected
- respond to the unique needs of women
- address the broader social determinants of health12 and, specifically, the determinants of Aboriginal people’s health13
- address the root causes of risk-taking behaviours, not just risk behaviours themselves
- support the principle of self-determination and other principles laid out in the UN Declaration on the Rights of Indigenous Peoples
A holistic approach to HIV prevention is consistent with Aboriginal world views that perceive all peoples and all of creation to exist in relation to each other in a dynamic whole.14 When one part of the circle is unwell, the whole is weakened and becomes unwell. This principle infuses an understanding of good health for the individual and for the community.
The Aboriginal social determinants of health must be taken into consideration to contextualize Aboriginal realities. In addition to income security, employment, education, food and shelter, these include colonization, racism, social exclusion, self-determination and cultural continuity (the degree of social and cultural cohesion within a community).12,13 This approach shifts the focus of prevention initiatives in Aboriginal communities from individual behaviours, which run the risk of ‘blaming the victim,’ to structural determinants of health inequalities, which recognize the impact of socio-historical and political context in creating ‘risk environments’ that shape and constrain an individual’s behaviour.
Approaches that target early prevention by addressing the root causes of risk-taking behaviours15 that may occur later in life contribute to improving women’s overall well-being. The safety and well-being of girls and young women, growing up with strong role models and information to maintain good health, is central to our future. Research on sexual violence reveals connections between Aboriginal women’s early experiences of abuse and the ongoing cycle of violence that can lead to exposure to HIV,16 further emphasizing the benefits of early prevention interventions.
Prevention initiatives will have a greater impact if they aim to reduce potential harms and make activities safer—for example, promote safer sex as opposed to no sex; encourage people who use drugs to reduce their consumption rather than telling them to not use at all; and assess a community’s readiness to implement such an approach.17 (See CAAN's Assessing Community Readiness manual, workbook and poster.)
HIV prevention among Aboriginal women means preventing new exposures and preventing the rapid progression of the disease among those who are HIV-positive. This encourages women with HIV to attend to their own health and wellness, lowers the risk of being exposed to multiple strains of HIV and reduces the risk of passing HIV to others (this is known as positive prevention).
An emerging priority for engaging Aboriginal women in Canada is to emphasize the positive: both, people who are HIV-positive and a positive outlook that contributes to good health. Kecia Larkin, long
-time Aboriginal AIDS activist identified the acronym PAW, for positive Aboriginal women, to capture this concept explicitly. PAW also has a strong cultural connotation as bears figure prominently in many Aboriginal cultures and in Aboriginal storytelling. Recent arts-informed research has shown that PAWsitive prevention that builds on the strengths that Aboriginal women already possess is meaningful, powerful and contributes to re-affirming the central role of women in the community.18 Consistent with this perspective, CAAN has taken action on the recommendations from the research report Our Search for Safe Spaces16 by developing a PAW-licy statement regarding the need to create safe spaces. Nurturing girls, looking after our women and engaging our men, youth and Elders in healthy ways are central to the prevention of HIV.
Meaningful engagement of positive Aboriginal women (PAW) in prevention
These are some of the key elements and approaches that can help engage HIV-positive Aboriginal women in HIV prevention:
Allow for the self-determination of positive Aboriginal women—“we know what we need”
Share decision-making responsibilities with Aboriginal women
Set ground rules when gathering, to help create a safe space
Remember that positive Aboriginal women have a role as Inner Guides who share their lived experiences with women and girls ‘at risk’
Consider using a sharing circle model for capacity-building, team-building, knowledge transfer and exchange of women’s teachings
Use participatory approaches that engage Aboriginal women in meaningful ways
Use and create opportunities for arts-based approaches to HIV prevention, such as drum-making, ceremonial skirt-making, photography and photovoice, quilt-making and digital storytelling
Make gathering spaces as inclusive as possible, by creating spaces for the children of the women and attending to barriers to participation—for example, by providing adequate childcare monies when needed
Recognize that women are part of a larger community and offer opportunities for women to learn alongside their families, partners and children
Remember that all women are part of the circle: be inclusive of two-spirit, lesbian, bisexual and trans women
Disseminate accessible information on HIV prevention to Aboriginal women and develop “positive messaging” for women and girls
- Honour the sacred role of Aboriginal women by acknowledging special events for women, creating an event to celebrate being a woman and learning about the traditional roles of women
Prevention in action
Increasingly, the activities undertaken by Aboriginal AIDS organizations are informed by research. In addition, we are driving our response to HIV with policy and strategic planning. The seminal document pulling all of this together is Environments of Nurturing Safety (EONS), produced by CAAN in consultation with more than 300 Aboriginal women across Canada.19 EONS offers context and history, identifies the needs of Aboriginal women and outlines a five-year strategy to address those needs.
In partnership with the Native Women's Association of Canada, CAAN’s PAW-licy statement informs the creation of safe spaces, such as “PAW Dens.” The statement is designed so that an organization can easily adapt the policy and endorse it, to demonstrate their support and commitment. At the heart of the policy, “CAAN recommends the creation of environments where PAW can thrive; nurturing spaces to address the impact of trauma and violence. Together, men, women, children, and Elders can all support PAW and their children in every region of Turtle Island.”
A robust HIV prevention campaign must take into consideration that infrastructures within Aboriginal communities and Aboriginal organizations are limited. Oftentimes, Aboriginal people reside outside of major urban centres, which limits our access to healthcare services and places additional demands on organizations to provide resources and outreach services, ranging from education sessions to support. Strong partnerships with organizations that share similar mandates and the incorporation of HIV messaging in creative ways across diverse sectors will increase the visibility of HIV prevention. Increased and sustained investments in relational care-building relationships with Aboriginal people living with HIV and AIDS and their communities will result in improving health.20
In 2011, the theme for Aboriginal AIDS Awareness Week (December 1 -5) was “It takes a whole community to support change.” Each individual, family, community and Nation can make a difference. Prevention is grounded in grassroots actions supported by policy and the direct engagement of leaders. Aboriginal women are the caregivers for their families and for their communities. How we respond to our women underpins how our communities will function. Learning about HIV risk, learning about risk reduction and examining how actions are contextualized and labelled will contribute to reducing risk by nurturing understanding and reducing HIV stigma. Allies, non-Aboriginal individuals and organizations, can contribute to the response. There is an incredible capacity for all of us to respond in simple ways and in a larger context through services and policies.
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- 8. Manitoba Health. Statistical Update: HIV and AIDS. Report to December 31, 2010. Available from: www.gov.mb.ca/health/publichealth/surveillance/hivaids/dec2010.pdf
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- 17. CAAN. Assessing Community Readiness and Implementing Risk Reduction Strategies. Halifax, Nova Scotia: Canadian Aboriginal AIDS Network; 2011.
- 18. Visioning Health Research Team. Visioning Health: Positive Aboriginal Women’s (PAWs) Perspectives on Health, Culture and Gender. Saskatchewan AIDS Conference, Regina, Saskatchewan, Dec 1-2, 2011.
- 19. Peltier D. Environments of nurturing safety (EONS): Aboriginal women in Canada: five year strategy on HIV and AIDS. Dec 2010-Dec 2015. Canadian Aboriginal AIDS Network; Dec 2010.
- 20. CAAN. Relational Care: A guide to health care and support for Aboriginal People living with HIV/AIDS. Ottawa, Ontario: Canadian Aboriginal AIDS Network; 2008.