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Chapter 5 – Current HIV/AIDS Research

HIV/AIDS research in Canada extends to behavioural, biomedical, clinical, economic, epidemiological, legal and psychosocial fields of studies. Aboriginal HIV/AIDS research also includes community-driven research projects that examine issues that are identified by Aboriginal communities. Flicker et al note that “including communities most affected by HIV in the research process makes it more likely that results will be acted upon” [1] and the research will be responsive to the needs of these communities.

For example, the Canadian Institutes of Health Research (CIHR) HIV/AIDS Research Initiative includes a Community-Based Research Program, which works in partnership with CIHR’s Institute of Aboriginal Peoples’ Health. A key feature of the Community-Based Research Program is the involvement of Aboriginal communities and organizations in the design and implementation of research projects. This approach provides study populations with control of the research they are involved in and helps to disseminate the knowledge that has been created back to that community to assist them in addressing HIV/AIDS.

In addition, there are specific ethical guidelines available for research with Aboriginal populations. For instance, the principles of ownership, control, access and possession/protection are important in the field of Aboriginal HIV/AIDS research and indicate “that Aboriginal people have relinquished the notion of ‘being researched,’ and have taken up the call to become active participants in the research process” [2]. Work continues in this area to reflect the needs of First Nations [3;4], Inuit [5;6] and Métis communities [7]. In addition, CIHR has developed Guidelines for Health Research Involving Aboriginal People [8] which aim to facilitate the development of mutually beneficial research partnerships, resulting in ethical and culturally relevant research. Furthermore, the Interagency Advisory Panel on Research Ethics (comprising CIHR, the Social Sciences and Humanities Research Council or SSHRC, and the Natural Sciences and Engineering Research Council or NSERC) is revising the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans which contains a chapter regarding research involving Aboriginal peoples [9].

A review of funded research specific to HIV/AIDS and Aboriginal peoples in Canada identified 49 separate research projects. Of these projects, the majority focus on APHAs, prevention, youth, injection drug use and other substance use, issues related to HIV/AIDS service provision, and enhanced Aboriginal community research capacity. See Appendix B for a complete list of research projects captured in this analysis.

In general, the research projects identified are conducting psychosocial and behavioural research, which will allow for the description of experiences and the identification of needs, issues, challenges and solutions by community members, and, in some situations, service providers. The general areas of investigation are as follows:

  • Risk-taking behaviour and contributing factors;
  • Barriers to accessing services;
  • Strategies to enhance design and delivery of programs and services;
  • Strategies for increasing access to programs and services; and
  • Community research capacity development and research dissemination strategies.

5.1 Methodology

The information in this chapter was gathered from the following organizations: Canadian Institutes of Health Research (CIHR), the Canadian Association for HIV Research (CAHR), the Canadian Foundation for AIDS Research (CANFAR), and the Social Sciences and Humanities Research Council of Canada (SSHRC). It was assumed that research completed before 2006 would have been published and identified in the academic and grey literature review completed for the previous chapters of this status report. Therefore, projects were included that were either completed in 2006 or later, or are currently under development.

5.2 Research Analysis

This section offers an overview of current research (2006 to 2008) being undertaken on issues related to HIV/AIDS among Aboriginal peoples. Using the information presented earlier in the status report, this chapter attempts to assess whether currently funded research on the HIV/AIDS epidemic among Aboriginal peoples responds to identified needs and gaps.

Information in Appendix B includes research project titles, the names of investigators, the project abstract, dates, and the source of funding. In the following analysis, research projects are identified with a number (e.g. R1) corresponding to the project description in Appendix B.

5.2.1 Geographic distribution of research projects

The majority of the research projects do not identify a primary location for the research. Of the 22 projects that identify a location for the research, 8 are focused on British Columbia [R7-R10, R20, R24, R26, R35]; 6 of these projects focus on Vancouver and/or the Downtown Eastside neighbourhood in Vancouver, two projects also examine the Aboriginal populations in Prince George and Kamloops, and one project examines Aboriginal communities in northern British Columbia.

The remaining 14 projects focus on Aboriginal populations in Alberta [R38], Saskatchewan [R23, R29], Ontario [R2, R6, R39, R47], Quebec [R4, R19], and the north [R1, R16, R44]. In addition, 2 projects focus on research capacity development in eastern Canada, including Labrador and Nunavut [R27], and western Canada, the Yukon and Northwest Territories [R28].

5.2.2 Research projects addressing prevention, care and treatment

There are 25 research projects which address the themes of prevention, care and treatment, representing 51% of the projects.

Prevention

Given the over-representation of Aboriginal people among new HIV infections, prevention is a key element of the response to HIV/AIDS in the Aboriginal population. There are 13 current research projects which focus on prevention. Of these projects, four are focused on prevention in First Nation communities [R4, R15, R16, R47], and one examines prevention among Inuit youth [R44]. Six of the projects address prevention issues among Aboriginal youth [R4, R11, R21, R31, R44, R46]. Two projects focus on barriers to prevention in high-risk populations: Aboriginal youth who inject drugs [R31], and Aboriginal women engaged in survival sex work [R26].

Access to care

The issue of access to health care is an important and complex determinant of health that can impact on the well-being of Aboriginal people living with, and at risk of, HIV/AIDS. There are 14 projects which examine the issue of access to care for Aboriginal people in the context of HIV/AIDS [R2, R3, R5, R6, R10, R13, R15, R19, R22, R26, R32, R34, R43, R44]. Two of these projects focus on access to care issues among First Nations people and communities [R6, R15]; none of the projects focus on the unique needs of Inuit or Métis people.

Ten of the research projects focus on issues related to service provision; seven of these projects focus on service provision for APHAs [R5, R6, R10, R22, R32, R43, R48]. Two of these projects focus on cultural competency among HIV/AIDS service providers in First Nation communities. Two research projects examine the impact of gender, culture and HIV status for Aboriginal women when accessing HIV/AIDS services [R43, R48]; one of these projects focuses on two-spirit women, a significant research gap in the current literature. Another project examines factors that promote well-being among APHAs who use substances, the impact of gender, culture and HIV status for Aboriginal women when accessing services, and the service needs of Aboriginal families impacted by HIV/AIDS.

Although stigma and discrimination have a significant impact on Aboriginal people living with, and at risk for, HIV/AIDS, only two projects specifically identify stigma and discrimination in the context of HIV/AIDS service provision as a focus of the research [R12, R48]. The significant impact of stigma and discrimination on APHAs suggests that more research is needed to determine best practices for addressing this issue.

Five projects focus on barriers to accessing services and issues related to HIV treatment [R2, R10, R19, R26, R38]. Themes addressed in the research include beliefs, attitudes, risk behaviours and barriers to prevention and treatment for Aboriginal women, experiences of APHAs including access to services, treatment outcomes, mental health and well-being, and maternity experiences of mothers living with HIV/AIDS. Three of these projects examine issues of access to care for Aboriginal women: barriers to prevention and treatment for Aboriginal women who are engaged in survival sex work [R26]; access to care and treatment for Aboriginal mothers who are HIV positive [R19]; and, knowledge, attitudes and experiences of Aboriginal women in Ontario regarding HIV and HIV risks [R2]. One project examined improving access to HIV services, education, screening and treatment for Aboriginal people in northern British Columbia [R10]. One project examines the relationship between alcohol use among APHAs and access to care [R3].

Mental health

Two projects examine mental health among APHAs [R34, R49], a subject area with little research currently available. Both projects examine depression among APHAs, and consider depression in the context of the social determinants of health, “as it relates to the ongoing stigmatization of HIV/AIDS, social isolation, lack of knowledge of HIV and its treatment, alcohol and drug use, personal biographies involving abuse and family disruption, medication side effects and poverty” [R34].

5.2.3 Research projects addressing specific populations

Thirty-six of the current research projects address issues pertaining to specific populations, including First Nations and Inuit (none of the research projects focused on Métis); Aboriginal people living with HIV/AIDS; people who inject drugs; youth; women; and, two-spirit, gay, lesbian, bisexual and transgender people. Projects that focus on specific populations represent 73% of all current research projects.

HIV/AIDS and First Nations, Inuit and Métis people

Five of the research projects focus on First Nations communities [R4, R6, R15, R16, R47]. Two of the projects focus on First Nations communities in Ontario, one on the James Bay Cree of Quebec and another on the Tlicho First Nation communities in the Northwest Territories. Three of the research projects focus on prevention programs, while the other two projects focus on the interplay between culture and successful HIV/AIDS service provision in First Nation communities.

There are two research projects that focus on Inuit and the territory of Nunavut [R1, R44]. These projects work on building HIV/AIDS research capacity in Nunavut, and examine approaches to HIV/AIDS education, screening and treatment for Inuit youth.

None of the current research projects identified focus on Métis people.

Aboriginal people living with HIV/AIDS

There are 16 projects that focus on APHAs [R5, R6, R10, R12, R14, R19, R22, R32-R34, R37-R39, R43, R48, R49]. As discussed in the previous section on Access to Care, 7 of these projects focus on the needs of APHAs in the context of service provision.

The absence of adequate housing and homelessness can greatly impact the physical and mental well-being of people at risk of, and living with, HIV/AIDS. As discussed in the previous chapter, research suggests that Aboriginal people are over-represented among homeless populations across the country. Two current research projects are examining this impact and strategies to address issues related to housing and homelessness for APHAs [R37, R39]. Similarly, access to healthy and nutritious food is an important determinant of health for PHAs, but there is currently little data available that examines this link among APHAs. There is currently one study underway that examines food choice and perceptions of nutritional needs among Aboriginal people in the context of HIV/AIDS [R14].

There are a number of gaps in the focus of current research. For example, although First Nations, Inuit and Métis PHAs have unique needs and challenges, there was only one project which focused on First Nations PHAs and none of the projects focused on Inuit or Métis PHAs. Although Aboriginal women make up nearly half of all new HIV-positive test reports, only 4 of the projects focused on women living with HIV/AIDS [R19, R29, R43, R48]. Two projects addressed Aboriginal mothers living with HIV/AIDS [R19, R29]. Similarly, although nearly one-third of Aboriginal persons who are diagnosed with HIV infection are under the age of 30, none of the research projects focused on the needs of young APHAs.

As discussed in Chapter 4, research suggests that APHAs experience increased mortality with an HIV diagnosis than non-Aboriginal PHAs [10], and experience reduced access to medical treatment [11-13]. One research study in northern Alberta is exploring outcomes of HAART among PHAs and APHAs [R38].

People who inject drugs

Injection drug use is the main exposure category for HIV infection for Aboriginal men and women. There are 7 research projects that focus on injection drug use and HIV/AIDS among Aboriginal people [R7-R9, R20, R24, R31, R35], 5 of which focus on Aboriginal youth who inject drugs. As research suggests that Aboriginal people are over-represented among persons who are co-infected with HIV and hepatitis C, it is encouraging that 4 of the 5 current research projects on injection drug use among Aboriginal people are examining prevention and vulnerability for both HIV and HCV infection [R9, R20, R24, R31].

Youth

Almost one-third of Aboriginal people who receive an HIV diagnosis are under the age of 30. There are 11 research projects focused on Aboriginal youth, comprising 22% of the research projects [R4, R7-R9, R11, R13, R20, R21, R31, R44, R46]. Seven of the projects focus on HIV prevention and examine themes such as barriers to HIV prevention among high-risk youth that inject drugs and other substances, factors influencing condom use among Aboriginal youth, and arts-based approaches to HIV prevention. One project focuses on First Nations youth [R4] and another on Inuit youth [R44]; none of the projects focus on Métis youth.

Women

There are 6 research projects focused on Aboriginal women and HIV/AIDS [R2, R19, R26, R29, R43, R48]. Although Aboriginal women make up nearly half of all new HIV-positive test reports among Aboriginal people, only 12% of the current HIV/AIDS research projects focus on Aboriginal women. Two of the projects examine the impact of gender in the context of HIV/AIDS service provision for Aboriginal women [R43, R48]. Two projects address issues related to motherhood in the context of HIV/AIDS [R19, R29], and 1 explores the knowledge, attitudes and experiences of Aboriginal women regarding HIV and HIV risks [R2]. The remaining project examines barriers to HIV prevention and treatment among Aboriginal women engaged in survival sex work [R26].

Two-spirit, gay, lesbian, bisexual and transgender people

Only 1 research project focuses on this population [R48]. This project focuses on experiences of homophobia for two-spirit women accessing HIV/AIDS services. This project will begin to fill a significant research gap, as currently there is little available research that specifically examines two-spirit women’s experiences regarding HIV/AIDS. However, the lack of current research projects on two-spirit, gay, lesbian, bisexual and transgender Aboriginal people is problematic given the multi-faceted impacts of homophobia and discrimination which can contribute to increased vulnerability in this population.

5.2.4 Resilience

The majority of available research on HIV/AIDS among Aboriginal people focuses on issues that increase the population’s vulnerability to HIV and AIDS. As a counter-balance to this focus on vulnerability, there are several research projects that focus on and/or utilize Aboriginal community resilience, health and well-being to address issues related to HIV/AIDS [R16, R33, R42]. These projects focus on dimensions of health and wellness of people living with HIV/AIDS, and resilience in Aboriginal communities in responding to HIV/AIDS.

5.2.5 Community research capacity, research dissemination and knowledge transfer

There are 15 projects which focus on and/or contribute to increasing research capacity and knowledge translation for Aboriginal communities [R1, R7, R12, R13, R16-18, R22, R23, R27, R28, R36, R37, R40, R41]. These projects involve community partners in research projects and capacity building workshops, and focus on areas including design and implementation of research dissemination strategies; development of best practice guidelines; promotion of cultural competence among academic researchers; systematic data synthesis; research networking; and ethical considerations for HIV/AIDS research in Aboriginal communities. Increasing community research capacity ensures that research is relevant to the needs of Aboriginal communities, thereby increasing knowledge translation for improved policy and programs.

5.3 Areas for Further Research

Though the following list should not be considered exhaustive, a selection of areas for further study identified in this chapter and by the Status Report Working Group includes:

  • The unique needs of First Nations, Inuit and Métis people in relation to HIV prevention, care, treatment and response;
  • HIV risks resulting from addictions other than injection drug use among Aboriginal peoples;
  • HIV risk behaviours and access to prevention, care, treatment and support services for Inuit living in urban areas; 
  • HIV risks associated with housing instability (e.g. couch surfing) for Aboriginal peoples, in urban and rural/isolated locations;
  • Impact of multi-generational trauma on HIV risk among Aboriginal peoples;
  • HIV-related vulnerabilities of elderly Aboriginal people who may not perceive themselves to be at risk for HIV/AIDS;
  • HIV risks associated with sex work/survival sex among transgender Aboriginal peoples;
  • HIV-related risks for incarcerated and recently released Aboriginal peoples;
  • Transition to sex work and HIV risks for Aboriginal peoples moving from rural to urban areas;
  • The needs of two-spirit, gay, lesbian, bisexual and transgender Aboriginal peoples living with and at risk of HIV/AIDS;
  • The needs of First Nations, Inuit and Métis women living with, and at risk of, HIV/AIDS;
  • Wise practices in the design of interventions to reduce stigma associated with HIV/AIDS among Aboriginal peoples;
  • The impact of literacy on vulnerability to, and resilience against, HIV/AIDS;
  • Health outcomes of HAART among APHAs;
  • Access to Elders for APHAs and ensuring Elders have knowledge of HIV/AIDS;
  • The use of traditional medicines to address and treat HIV/AIDS by Aboriginal people;
  • HIV co-morbidity (e.g. diabetes, sexually transmitted infections, tuberculosis, mental and physical disability) and the challenges of managing multiple conditions for APHAs; and
  • The experience of death and dying for APHAs, their families and communities.

5.4 References

[1] Flicker S, Larkin J, Smilie Adjarkwa C, Restoule JP, Barlow K, Dagnino M, et al. "It's hard to change something when you don't know where to start": unpacking HIV vulnerability with Aboriginal youth in Canada. Pimatisiwin: A Journal of Aboriginal and Indigenous Community Health 2007;5(2):175-200.

[2] Canadian Aboriginal AIDS Network (CAAN). OCAP: ownership, control, access and possession. Ottawa: CAAN; n.d.

[3] Assembly of First Nations (AFN). O.C.A.P. ownership, control, access and possession: First Nations inherent right to govern First Nations data. Ottawa: AFN [website]. Available from: http://www.afn.ca/misc/ocap.pdf This link will take you to another web site (external link) [cited 2009 August]; 2007 Jun.

[4] National Aboriginal Health Organization (NAHO). Ownership, control, access, and possession (OCAP) or self-determination applied to research: a critical analysis of contemporary First Nations research and some options for First Nations communities. Ottawa: First Nations Centre, NAHO [website]. Available from: http://www.naho.ca/firstnations/english/documents/research/
FNC_OCAPCriticalAnalysis.pdf This link will take you to another web site (external link)
[cited 2009 August]; 2009.

[5] National Aboriginal Health Organization (NAHO). Ethics and research. Ottawa: Inuit Tuttarvingat, NAHO [website]. Available from: http://www.naho.ca/inuit/e/ethics/ This link will take you to another web site (external link) [cited 2009 August]; 2009.

[6] Inuit Tapiriit Kanatami, Nunavut Research Institute. Negotiating research relationships with Inuit communities: a guide for researchers. Ottawa and Iqaluit: Inuit Tapiriit Kanatami and Nunavut Research Institute; 2006.

[7] National Aboriginal Health Organization (NAHO). Métis research ethics. Ottawa: Métis Centre, NAHO [web site]. Available from: http://www.naho.ca/metiscentre/english/backgrounder_ethics.php This link will take you to another web site (external link) [cited 2009 August]; 2009 Jun.

[8] Canadian Institutes of Health Research (CIHR). CIHR guidelines for health research involving Aboriginal people. Ottawa: CIHR [website]. Available from: http://www.cihr-irsc.gc.ca/e/29134.html This link will take you to another web site (external link) [cited 2009 February]; 2007 May.

[9] Interagency Advisory Panel on Research Ethics. Draft 2nd edition of the tri-council policy statement: ethical conduct for research involving humans. Ottawa: Interagency Secretariat on Research Ethics; 2009 Dec.

[10] Lima VD, Kretz P, Palepu A, Bonner S, Kerr T, Moore D, et al. Aboriginal status is a prognostic factor for mortality among antiretroviral naive HIV-positive individuals first initiating HAART. AIDS Research and Therapy 2006;3:14.

[11] Wood E, Kerr T, Palepu A, Zhang R, Strathdee SA, Tyndall MW, et al. Slower uptake of HIV antiretroviral therapy among Aboriginal injection drug users. Journal of Infection 2006;52(4):233-6.

[12] Miller CL, Spittal PM, Wood E, Chan K, Schechter MT, Montaner JSG, et al. Inadequacies in antiretroviral therapy use among Aboriginal and other Canadian populations. AIDS Care 2006;18(8):968-76.

[13] Wood E, Montaner JSG, Tyndall MW, Schechter MT, O'Shaughnessy MV, Hogg RS. Prevalence and correlates of untreated human immunodeficiency virus type 1 infection among persons who have died in the era of modern antiretroviral therapy. Journal of Infectious Diseases 2003;188(8):1164-70.

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