Chapter 5: Population-Specific HIV/AIDS Status Report: People living with HIV/AIDS - Current research

Chapter 5 - Current HIV/AIDS Research

Research into HIV and AIDS in Canada is multidisciplinary. This chapter presents an overview of research projects on people living with HIV/AIDS (PHA) funded between 2008 and 2010, focusing on research in the behavioural, economic, epidemiological, legal, and psychosocial fields. Selected characteristics are identified in the analysis of the projects, including geographic location and affected population. Project characteristics analyzed include community research capacity, research dissemination, health policy research, and knowledge transfer. Other research themes analyzed include the determinants of health, treatment, mental health, and resilience. A complete list of the 148 projects identified can be found in Appendix B, with their original abstracts (where available).

5.1 Methodology

The information in this chapter was gathered from national and selected provincial organizations that provide funding for HIV/AIDS research in Canada or provide venues for presenting HIV research. At the national level, these included the 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). Provincial funding organizations from which information was gathered include the British Columbia Centre for Excellence in HIV/AIDS, the Michael Smith Foundation for Health Research (MSFHR), Le Fonds de recherche du Québec - Société et culture (FQRSC) and the Ontario HIV Treatment Network (OHTN).

Research projects included in this chapter met all of the following selection criteria:

(1) The project was funded by one of the above organizations at some time between 2008 and 2010. For projects from CIHR and most projects from OHTN, where detailed information on project start dates was available, the two-year period between October 2008 and October 2010 was used.

(2) The project had a specific focus on HIV/AIDS and is related to PHA.

(3) The project research was based in Canada or immediately relevant to Canadians living with HIV/ AIDS.

Exclusion criteria included the following:

(1) The research project was related exclusively to vulnerability for HIV infection and/or prevention work.

(2) The research project was related to basic science, microbiology and/or clinical medicine.

(3) The research project was an international study conducted abroad by Canadian researchers, unless the nature of the study would provide additional insight for the lived experience of Canadian PHA.

It was assumed that research completed before 2008 would have been published and identified in the academic and grey literature review completed for the previous chapters of this status report. Hence, it is excluded from this chapter. Thus, given the sometimes long lag-time between research and publication, some material may not be included in either section. Projects included in Appendix B were scheduled to be completed in 2008 or later, or are currently under development. In addition, research funded by the private sector is not included in the scope of this report.

It should be noted that research funded through basic science, microbiology, or clinical medicine funding streams is highly relevant to PHA. This research was excluded, however, as the scope of this report is on the lived experience of PHA and the impact of the determinants of health on PHA.

It should be further noted that all of the populations affected by HIV and AIDS in Canada were included in the research criteria, including gay men and other men who have sex with men, people who use injection drugs, Aboriginal peoples, women, people from countries where HIV is endemic, youth at risk, and people in prison.

5.1.1 Methodological Limitations

A limitation of the selection strategy is that some projects received grants from more than one organization, or more than one grant in a different year from the same organization. Thus, some projects may be documented in Appendix B more than once. Conversely, some funding was provided to support researcher salaries, student grants, knowledge translation, or operating costs; thus, the same funding source may support more than one project over a successive period of years, where only one project is outlined in the application to the funding source.

A second limitation in the methodology is that abstracts and full descriptors were not available for all projects. In some cases, PHA may not have been identified as a population studied in summary information available on the projects. To counter this limitation, projects for which there were no abstracts were included only if any of the search terminology were used in the title or noted as project keywords. Some project descriptions required further exploration and, where possible, principal investigators were contacted to determine whether their projects were specifically related to PHA in Canada. In short, some projects relevant to PHA may not have been documented through the search process due to the limitations of the search strategies, exclusion criteria, and the scope of this report.

5.2 Overview of HIV/AIDS Research Funded Between 2008-2010

This section presents an overview of the 148 research projects that were identified as funded between 2008-2010 on issues related to living with HIV or AIDS in Canada. Information presented in Appendix B includes the following: the research project title, the investigator name(s), the project abstract, and the dates and sources of funding. Each research project is identified with a project identification number (e.g., R1) corresponding to the project description in Appendix B. Note that some projects are referenced more than once in the analysis, because more than one theme can be identified in the project description.

5.2.1 Distribution of Research Projects by Geographic Location

The geographic location of each research project was assessed by identifying the province or territory where the research is located. The majority of the 148 research projects do not identify a primary location for the research. Of the 71 projects that identify a location for the research, 18 are located in British Columbia. Ten are being conducted in Alberta, Saskatchewan, and Manitoba combined, with an average of three per province. Fifteen projects are based in Ontario and 10 in Quebec. Three projects are located within the Atlantic Region. In addition, 15 projects were identified as having a national scope. None of the currently identified projects are located within the territories.

Note: No location was identified for the other 77 projects.

5.2.2 Distribution of Research Projects by Population

Of the 148 projects identified, 79 (53%) of the projects address specific populations, including Aboriginal peoples, peoples from countries where HIV is endemic, people who use injection drugs, youth, women, gay or other men who have sex with men, people in prison, transgender and other populations. The remaining 47% of projects identify other populations or focus on PHA generally. Several of the projects identify more than one population, and thus appear more than once in the description and analysis below.

N.B.: The total does not add up to 79, as some projects address two or more populations.

5.2.2.1 Aboriginal People Living with HIV/AIDS (APHA)

As discussed in Chapter 2, Aboriginal people in Canada, including First Nations, Inuit and Métis, represent approximately 3.8% of the Canadian population; yet they make up a disproportionally high number of HIV infections, accounting for an estimated 8.9% of all prevalent infections in 2011. (1) Of the 148 projects in this review, 13 projects focusing on APHAs were funded between 2008 and 2010. In the Population-Specific HIV/AIDS Status Report: Aboriginal Peoples (2010), which looked at projects funded between 2006 and 2008, 16 of the 149 projects identified in that report were focused on APHAs. (2)

Three projects examine issues related to accessing health services. Project R3 examines the challenges of accessing health services in remote communities. Project R17 examines the impact of alcohol addiction on the ability of APHAs to access services, while project R66 explores the experience of recently released Aboriginal prisoners in accessing community-based health services. Two projects focus on building Aboriginal research networks and capacity. [R5, R136].

Four projects focus on Aboriginal women. Research areas include culture and gender as determinants of health for Aboriginal women living with HIV [R67], maternal health [R78], and the impact of violence experienced by Aboriginal women [R123] and two-spirit women [R142]. One study compares the resilience of indigenous PHAs in Canada, New Zealand, and Australia [R119]. Two projects [R70, R136] examine the intersection of culture and Aboriginal peoples' experience of health while living with HIV or AIDS. One project examines co-infection among Aboriginal people who use injection drugs in the context of families living with HIV [R70]. Although one third of Aboriginal persons living in Canada who are diagnosed with HIV infection are under the age of 30 years, only one project looks specifically at young aboriginal people; R132 focusses on HIV and hepatitis C vulnerabilities of young aboriginal drug users, and will include a case management intervention aimed at APHA.

Some studies funded between 2006-2008, identified in the Population-Specific HIV/AIDS Status Report: Aboriginal Peoples (2010), examine how homelessness and access to food affect APHA; however, none of the studies identified in this report explore these issues among APHA in Canada. The unique needs and challenges of specific Aboriginal populations, such as First Nations, Inuit or Métis PHA are not addressed in any of the studies identified.

5.2.2.2 People Living with HIV/AIDS who use Injection Drugs

As observed in Chapter 2, the incidence and prevalence of HIV among people who use injection drugs accounted for an estimated 16.9% of prevalent infections in Canada at the end of 2011. (3) Ten projects focus on PHA who use injection drugs; six of these focus on access and adherence to antiretroviral medication regimens [R6, R45, R60, R89, R97, R109]. Project R109 examines issues experienced by female sex workers who use injection drugs. Projects R31 and R70 focus on co-infection with hepatitis C, and project R89 examines treatment adherence among individuals co-infected with hepatitis C. Project R132 explores HIV and hepatitis C vulnerabilities among young aboriginal people who use drugs. Project R31 examines relationships among polysubstance abuse, mental health, and co-infection. Finally, project R24 examines ways of involving people who use injection drugs in assessing how to improve their access to services.

5.2.2.3 Youth Living with HIV/AIDS

Eleven projects focus on youth living with HIV/AIDS. The projects primarily examine the support systems available to HIV-positive youth and their intimate relationships. Project R122 examines issues experienced by sexually active youth. Project R37 explores the issues of support and service needs of young women living with HIV with a focus on sexual health, and project R61 examines family support systems. R12 looks at health management and responses to treatment, social relationships and sexual health for adolescents living with HIV. Project R32 explores issues experienced by youth who were born with HIV and the impact of antiretroviral treatment. Project R117 is a research partnership and capacity-building meeting that focuses on issues related to youth. Project R9 examines the effectiveness of human papillomavirus vaccine on youth living with HIV. Projects R13 and R14 examines ways to improve health services for street youth. R132 follows a cohort of young Aboriginal people who use injection drugs, including looking at HIV care for those who are HIV-positive.

5.2.2.4 Women Living with HIV/AIDS

Women accounted for an estimated 23.3% of all prevalent infections in Canada at the end of 2011, with heterosexual contact and injection drug use identified as the two main exposure categories. (4) Thirty-four projects were identified that focus specifically on HIV-positive women. Of these, 12 projects look at issues related to pregnancy and perinatal treatment, with the impact of antiretroviral medications being the predominant focus [R18, R21, R32, R58, R73, R74, R99, R105, R108, R118, R121, and R126]. Six projects examine fertility intentions of HIV-positive women and pregnancy planning [R73, R74, R105, R108, R118, R121].

Other selected research projects that focus on HIV-positive women covered a variety of topics. Three projects examine barriers and access to health services [R3, R13, R37]. Five projects describe the experiences of women who are from countries where HIV is endemic, and their experience of stigma and social supports, including familial relationships [R58, R62, R76, R78, R113]. Five projects look specifically at the experience of Aboriginal women living with HIV [R3, R13, R58, R67, R123]. Projects R123 and R142 focus on sexual violence and homophobia experienced by HIV-positive women, and projects R50 and R109 explore the experience of sex workers (including survival sex workers).

One project explores how antiretroviral therapy requirements and responses differ in women from men, including adverse events [R115], another addresses cognitive impairment and memory issues [R81], and a third project examines the impact of the human papillomavirus vaccine [R9].Project R94 looks at lipodystrophy on women living with HIV/AIDS. Projects R53, R54, R57 and R112 are evaluations of programs and services provided to HIV-positive women.

5.2.2.5 Gay Men and Other Men who Have Sex with Men Living with HIV/AIDS

As discussed in Chapter 2, the exposure category men who have sex with men (MSM), continues to account for the largest proportion of positive HIV test reports, representing an estimated 46.7% of prevalent infections at the end of 2011. (1) Of the 148 projects identified in this report, 10 focus on gay men and other men who have sex with men; of these, five look at issues surrounding the risk behaviours of positive men who have sex with men, including "poz prevention" strategies to reduce the risk of onward transmission in serodiscordant relationships [R7, R35, R43, R120, R124]. One of these projects examines the behaviours of MSM living with HIV/AIDS who use gay Internet cruise websites to meet partners [R43]. This project also examines social and personal perceptions of stigma, as does R38. The utilization of health services [R75] and citizenship and race [R137] are also addressed.

5.2.2.6 PHA from Countries Where HIV is Endemic

As discussed in Chapter 2, PHA from countries where HIV is endemic represented an estimated 14.9% of prevalent infections at the end of 2011, though only approximately 2.2% of the Canadian population. (1)

Fourteen projects focus on PHA from countries where HIV is endemic. Three look at [R40, R65, R134] the relationship between of HIV serostatus and immigration policies. Two projects examine housing issues [R26, R62], and three explore social relationships, including family relationships [R110] and the relationship between social support and quality of life for women living with HIV [R76, R113]. Project R39 looks at contextual factors that impact treatment, including the experience of stigma. Project R77 examines gender-based violence and the experience of sub-Saharan immigrants to Canada. Only one project examines access to services [R14]. Project R130 funds a research think-tank.

Many of these themes were also identified in the 19 research projects funded between 2007-2008, and discussed in the Population-Specific HIV/AIDS Status Report: People from Countries where HIV is Endemic: Black people of African and Caribbean descent living in Canada (2009). (5)

5.2.2.7 People in Prison Living with HIV/AIDS

As noted in Chapter 2, the prevalence of HIV in the federal prison population was 1.6% in 2006. (6) Two projects focus on PHA in prisons in Canada [R66, R133]. Project R66 examines the experience of APHA who were recently released from prison in accessing health services. Project R133 studies ways to reduce the transmission of HIV and other sexually transmitted and bloodborne infections.

5.2.2.8 Transgender People Living with HIV/AIDS

Two related projects focus on the transgender community. R140 explores issues experienced by transgender PHA, such as social marginalization. The same study also examines how social factors - such as health care access and the source and stability of one's income - can affect quality of life for transgender people living with HIV/AIDS. Project R141 is a symposium funded to present the research findings from project R140.

5.2.2.9 Other Populations Living with HIV/AIDS

Within the funded research, six projects focus on populations other than the eight populations identified by The Federal Initiative to Address HIV/AIDS in Canada. One project's study population involves heterosexual men living with HIV [R91]. Two projects explore the experience of older Canadians living with HIV [R59, R138]. One project focuses on people living with HIV in rural and remote locations [R72] Two projects look at improving the uptake of antiretroviral medications and HIV care among sex workers [R50, R109].

5.2.3 Community-based Research, Health Policy Research, Research Dissemination, and Capacity Building

Community-based research (CBR) is a collaborative approach to research that involves all partners in the research process. CBR attempts to combine knowledge and action for social change with community health to eliminate health disparities. CBR brings researchers together with members of the community to accomplish the following: identify the issues; collect, analyze, and interpret the data, and then decide how to use the results to inform policy, change practice, and improve conditions in the community. Twenty-five of the funded projects support CBR [R5, R7, R17, R24, R26, R49, R51, R53, R57, R62, R66, R78, R82, R84, R86, R88, R91, R92, R98, R108, R112, R114, R136, R140, R142]. The majority of the projects identified were funded by the CIHR's Community-Based Research funding streams.

Eleven projects focus on health policy research [R18, R30, R33, R40, R41, R50, R106, R108, R109, R116, R139]. Three projects are about health policy related to pregnancy and HIV [R18, R105, R108] and seven projects relate to knowledge translation supporting health policy development [R29, R64, R72, R80, R88, R105, R147]. Six projects focus on health policy surrounding treatment [R33, R41, R50, R109, R116, R127]. One project [R40] is about immigration policy as it pertains to PHA.

Twenty-two projects were identified that focus on research dissemination and knowledge transfer [R1, R2, R15, R19, R25, R30, R36, R42, R64, R77, R79, R80, R82, R88, R102, R104, R106, R112, R129, R139, R141, R148]. Of these, two are symposia that address issues related to disclosure [R1, R2]. Project R42 is a meeting to discuss issues facing the treatment of patients with non-B subtypes of HIV. Project R79 is a conference organized by the BC Centre for Excellence in HIV/AIDS to present the annual HIV antiretroviral update to clinicians, pharmacists, and healthcare providers. Project R104, the National Aboriginal Centre for HIV/AIDS Research, fosters research-community partnerships and supports the mobilization of research knowledge translation among stakeholders. Project R129 is the Ontario HIV Treatment Network's Research Conference, which provides an opportunity for Canadian HIV investigators to showcase advances in basic science, clinical, socio-behavioural, epidemiological, and community-based research. Project R141 is a symposium bringing together transgender people, researchers, service providers, and policy makers to discuss the quantitative data from the Trans PULSE survey, and to plan "research to action" strategies. Project R148 is a workshop focusing on HIV-1 infected subjects with slow disease progression.

Eight projects focus on capacity-building [R5, R24, R25, R29, R88, R91, R92 and R108]. Four of these focus on a specific population, including Aboriginal people [R5], people who use injection drugs [R24], heterosexual men [R91], and women living with HIV [R92]. The remaining projects are funded to develop capacity-building research networks that examine the interplay between living with HIV and the determinants of health.

5.2.4 Determinants of Health

Fifty-three of the 148 projects address specific determinants of health. Six of the projects adopt a general determinants of health approach (where more than three determinants of health are addressed through the research project).

N.B.: The total does not add up to 53, as some projects address two or more determinants of health.

Nineteen projects explicitly address issues related to access to health and other services. Of these, three projects examine health services for APHA [R3, R17, R66]. Five projects focus on perceptions of stigma and discrimination experienced by PHA accessing healthcare services [R3, R47, R56, R128, R142].

Eight projects include research on the role of social support for PHA and 14 address social environments and stigma. Project R59 explores social participation among people aging with HIV. Five projects [R26, R62, R82, R106, R114] address physical environment issues related to housing and PHA. Two projects look at employment and labour force participation [R44, R49].

Nineteen projects examine aspects of personal health practices and coping mechanisms. Research topics include alcohol use [R17], smoking [R8, R51], sexual behaviours [R7,R12, R35, R45, R98, R122, R124, R133], HIV testing [R35], and HIV disclosure [R12, R53, 112, R122]. PHA populations addressed include gay men, street youth, youth born with HIV, women, people in prison and Aboriginal people.

Six projects examine the role of culture [R66, R67, R70, R121, R123, R136]; some of these were discussed in the section on key populations. Projects R67, , R123 and R136 examine intersections between Aboriginal culture and gender, and project R66 looks at the relationship between Aboriginal culture, offender subculture and healthcare practices in order to improve healthcare for APHA recently released from prison. R70 looks at the culturally specific healthcare needs of Aboriginal families living with HIV/AIDS. . Gender is examined in eight projects: in the context of aging [R59], women [R126], impact of antiretroviral medications [R63], Aboriginal women living with HIV/AIDS [R67, R123], APHA [R136], and violence [R77, R123].

No projects were identified that address income and socio-economic status, education, literacy or healthy child development. Food insecurity, a marker of low socio-economic status, was studied in projects R22 and R84, with a focus on the impact on treatment outcomes. Seven projects address multiple determinants of health.

Other themes:

Three projects look at the experience of violence by PHA [R10, R77, R123,]. Five projects explore the issues of PHA in family situations [R61, R62, R70, R86, R143]. One project examines disability in the context of HIV [R46]. Two projects focus on quality of life for the aging population living with HIV [R59, R138].

5.2.5 Overview of Research Projects Addressing Treatment

Fifty-seven of the 148 projects focus on access to care and treatment (Table 4). Eight projects present general or broad topics related to treatment, such as the impact of taking the human papillomavirus vaccine during treatment and the assessment of pain-related treatment issues, and other treatment-related topics. Projects funded through basic science, microbiology, or clinical medicine funding streams were excluded from the scope of this report; however, there may be projects on these topics funded in those streams that are relevant to the lived experience of PHA.

Thirteen projects address adherence to antiretroviral medication regimens. Four projects examine resistance to antiretroviral medications, and nine examine adverse events related to treatment with antiretroviral medications. Five projects focus on the general subject of antiretroviral medications [R16, R63, R79, R89, R116].

Seven projects look at co-infections of HIV and hepatitis C [R34, R83, R100, R101, R102, R107, R111], one looks at co-infection with herpes [R28] and five projects examine co-morbidities and HIV with a focus on diseases such as cancer and cardiovascular disease.

Eight projects examine treatment intervention [R8, R45, R50, R55, R57, R88, R96, R109], with three looking at optimizing strategies to reach key populations [R45, R55, R109]. Twelve projects address treatment outcomes and responses and disease progression; these include two projects that look at the impact of food insecurity on treatment outcomes [R22, R84], and two that look at slow disease progression [R144, R148].

5.2.6 Mental Health

Two projects examine issues related to mental health and mental illness [R31, R57]. One addresses co-occuring polysubstance abuse, psychosis and viral infections [R31], and the other looks at a case management intervention to improve the well-being of women living with HIV/AIDS.

5.2.7 Resilience

Two research projects focus explicitly on resilience, health, and well-being in relation to HIV/AIDS [R61, R119]. These projects focus on dimensions of the health and wellness of PHA. One addresses the experience of APHA [R119] the other addresses family life [R61].

5.3 Areas for Further Research

A selection of areas for further study has been identified through the analysis of data included in this chapter, the research syntheses in Chapters 3 and 4, and by the Status Report Working Group.

Geography:

• The experience of PHA in the Prairies, Atlantic Provinces and northern regions.
• The experience of PHA in rural and remote communities, including First Nations, Métis and Inuit communities.

Specific Populations:

• The experiences of gay, bi-sexual, two-spirit and other men who have sex with men living with HIV are underrepresented in current research (given that they make up 48% of prevalent infections).
• Men who identify as straight, including men from countries where HIV is endemic.
• Women's experience of living with HIV, outside of the context of fertility and pregnancy.
• Living with HIV in prison and life after being released from prison.

Determinants of Health:

• The influence of the following determinants on PHA quality of life: income and social status, education and literacy levels, and healthy child development.
• Employment is pivotal to well-being, yet underrepresented in current research.
• Cultural beliefs and practices and their impact on people living with HIV/AIDS.

Access to Care and Treatment:

• Prevalence of co-morbidities and co-infections among PHA, and impact on their quality of life and life expectancy.
• Evaluations of the effectiveness of complementary therapies for PHA, either as stand-alone treatments or in combination with antiretroviral medications.

Living with HIV:

• The impact of living with HIV on sexuality, intimacy, and sexual function.
• PHA experiences with, and perspectives on, disclosure to sexual and drug-sharing partners.
• Activity limitations and participation restrictions in the context of exercise regimes.
• Benefits of exercise regimes for PHA.
• Greater involvement of people living with HIV/AIDS (GIPA).

Resilience:

• Personal and societal factors contributing to PHA resilience.
• Assets-based approaches that support PHA in identifying positive assets and capacities that can be preserved, used, and enhanced.

5.4 References

(1) Public Health Agency of Canada. Summary: Estimates of HIV prevalence and incidence in Canada, 2011. Ottawa: Centre for Communicable Diseases and Infection Control, Public Health Agency of Canada; 2012.

(2) Public Health Agency of Canada. Population-specific HIV/AIDS Status Report: Aboriginal Peoples. Ottawa: Public Health Agency of Canada; 2010.

(3) Public Health Agency of Canada. HIV and AIDS in Canada: Surveillance Report to December 31, 2009. Centre for Communicable Diseases and Infection Control, Public Health Agency of Canada; 2010.

(4) Public Health Agency of Canada. HIV/AIDS Epi Updates, July 2010. Chapter 1: National HIV prevalence and incidence estimates in Canada for 2008. Centre for Communicable Diseases and Infection Control, Public Health Agency of Canada; 2010 May.

(5) Public Health Agency of Canada. Population-specific HIV/AIDS Status Report: People from countries where HIV is endemic: Black people of African and Caribbean descent living in Canada. Ottawa: Public Health Agency of Canada; 2009.

(6) Correctional Service of Canada. Infectious disease survey 2005-2006 - unpublished data. 2012.