HIV Testing and Care in Canadian Aboriginal Youth: A community based mixed methods study

Background HIV infection is a serious concern in the Canadian Aboriginal population, particularly among youth; however, there is limited attention to this issue in research literature. The purpose of this national study was to explore HIV testing and care decisions of Canadian Aboriginal youth. Methods A community-based mixed-method design incorporating the Aboriginal research principles of Ownership, Control, Access and Possession (OCAP) was used. Data were collected through surveys (n = 413) and qualitative interviews (n = 28). Eleven community-based organizations including urban Aboriginal AIDS service organizations and health and friendship centres in seven provinces and one territory assisted with the recruitment of youth (15 to 30 years). Results Average age of survey participants was 21.5 years (median = 21.0 years) and qualitative interview participants was 24.4 years (median = 24.0). Fifty-one percent of the survey respondents (210 of 413 youth) and 25 of 28 interview participants had been tested for HIV. The most common reason to seek testing was having sex without a condom (43.6%) or pregnancy (35.4%) while common reasons for not testing were the perception of being low HIV risk (45.3%) or not having had sex with an infected person (34.5%). Among interviewees, a contributing reason for not testing was feeling invulnerable. Most surveyed youth tested in the community in which they lived (86.5%) and 34.1% visited a physician for the test. The majority of surveyed youth (60.0%) had tested once or twice in the previous 2 years, however, about one-quarter had tested more than twice. Among the 26 surveyed youth who reported that they were HIV-positive, 6 (23.1%) had AIDS at the time of diagnosis. Delays in care-seeking after diagnosis varied from a few months to seven years from time of test. Conclusion It is encouraging that many youth who had tested for HIV did so based on a realistic self-assessment of HIV risk behaviours; however, for others, a feeling of invulnerability was a barrier to testing. For those who tested positive, there was often a delay in accessing health services.


Background
The overall HIV infection rate among Aboriginal persons in Canada has been estimated to be 2.8 times higher than among non-Aboriginal persons [1]. In 2006 Aboriginal persons accounted for 24.4% of the reported AIDS cases for which ethnicity was known [2], however, only 3.8% of the Canadian population report Aboriginal ancestry [3]. Almost half of the Canadian Aboriginal population are 24 years or younger with a median age of 27 years (Statistics Canada). Coupled with this demographic, Aboriginal youth are over-represented in the HIV epidemiological data. Canadian Aboriginal persons are infected with HIV at a younger age and at a higher rate than non-Aboriginals [2]. High rates of teenage pregnancy [4], inconsistent condom use [4,5], high rates of sexually transmitted infections (STIs) [6], along with feelings of invulnerability, contribute to the susceptibility of Aboriginal youth to HIV infection.
Traditionally, HIV prevention approaches have focused on uninfected populations. More recently, reducing transmission of the virus in persons already infected with HIV has been identified as an urgent research and public health priority [7,8]. HIV testing and counselling services are considered essential components of a comprehensive HIV prevention program due to the potential to reduce HIV transmission. Several authors [9][10][11] have reported that high risk behaviour is lower among individuals who are aware of their HIV status, compared to individuals who are unaware. A recent report on HIV testing and counselling [12] highlighted the need for research to explore the structural factors that influence counselling, testing and partner notification, particularly among individuals who are socially marginalized and most vulnerable to infection.
Research on HIV testing among youth suggests that, in general, younger people perceive that they are less vulnerable [2,13] and are less likely than older individuals to access HIV testing [14]. However, youth at higher risk for HIV who are connected with programs may be more likely to test for HIV [15,16]. There is no published literature specifically on HIV testing among Canadian Aboriginal youth despite this population being highly susceptible to infection; however, some evidence suggests that Aboriginal youth access HIV testing as much or more than the general population [17]. Similarly there is little research on HIV care received by Canadian Aboriginal youth, although one study reported that following infection with HIV, youth faced challenges in accessing appropriate services, particularly from AIDS service organizations [18].
Knowledge about HIV testing and care in the Aboriginal community is limited. Research suggests that Aboriginal persons may be reticent to access testing and care for HIV.
Ontario Aboriginal inmates were less likely to have ever had an HIV test and more likely to report that they didn't know where to get a test than non-Aboriginal inmates [19]. An analysis of Canadian AIDS cases between 1996 and 2005 revealed that Aboriginal persons were significantly more likely to have a late diagnosis of their HIV infection [20]. This trend also was suggested in an analysis of AIDS-related deaths among First Nations individuals in Vancouver [21]. First Nations individuals became more acutely ill earlier, had shorter survival rates, and more admissions and hospital days than others. A more recent study [22] reported that Aboriginal persons accessing highly active antiretroviral therapy (HAART) had shorter survival rates and mortality rates 3 times higher than non-Aboriginals.
In order to focus on prevention activities, including during the post-infection period, it is important to assess factors that motivate individuals to have an HIV test, and subsequently make decisions about their care and treatment. The purpose of this national community-based study was to answer the following research questions: In this paper we present findings from interviews and surveys related to these key questions. Pseudonyms are used in the quotes from the interviews.

Methods
In light of the limited knowledge about HIV testing and care in Aboriginal youth in Canada, an exploratory mixed method design was selected, including a cross-sectional survey and in-depth interviews. Eleven community-based organizations in seven provinces and one territory assisted with recruitment of participants between January 2004 and February 2005. The organizations included Aboriginal health and friendship centres and AIDS service organizations. Aboriginal men, women, and transgendered between 15 and 30 years of age, living in rural and urban communities, English or French speaking, were invited to participate. The term Aboriginal referred to youth who selfidentified as First Nations, Métis, or Inuit.
A community-based research (CBR) approach, incorporating the principles of Ownership, Control, Access and Possession (OCAP) for research involving Aboriginal communities guided the study [23]. The project was a collaboration between the Canadian Aboriginal AIDS Network (CAAN), the Public Health Agency of Canada (PHAC), and researchers at the Universities of Alberta, Calgary, and Toronto. Ethical approvals were obtained from research ethics boards at each university, PHAC, and the Aurora Research Institute in the Northwest Territories. The research team received direction and guidance on the questions, the design of the study, and the interpretation and dissemination of the findings from a community advisory committee (CAC) that included Aboriginal youth, Aboriginal Elders, and representatives from community-based organizations. This overall approach ensured that the research was congruent with the Canadian Institutes for Health Research (CIHR) Guidelines for Health Research Involving Aboriginal People [24].
A self-administered survey was developed based on an extensive review of the published literature, unpublished reports, and the experience of research team members. It was pre-tested with the CAC to enhance face and content validity, translated into French, and then was pilot tested with two groups of Aboriginal youth, one English and one French speaking (total n = 19). A representative from each participating organization completed a training session to ensure methods were consistently applied. Convenience and network sampling [25] were used to recruit youth to complete the surveys or participate in an interview. Prior to enrolment, researchers ensured free and informed consent for each participant and obtained necessary signed documentation. Participants were provided with a private space to complete the survey. To ensure confidentiality, the two project coordinators (one for Eastern Canada and one for Western Canada) distributed the surveys, and all participants placed their completed survey in an envelope. Survey and interview respondents were provided with a small token of appreciation for their participation. Participating organizations also received a small compensation for staff time spent promoting the research project and assisting with the recruitment.

Data Management and Analysis
Survey responses were coded, entered, and verified using SPSS version 11.5 statistical software (SPSS, Inc., Chicago IL.). Descriptive statistics were produced for all survey items, and cross-tabulations and associational statistics were produced for key outcomes including HIV testing. Bivariate relationships were examined using appropriate statistics (e.g., Chi-square, Fisher's Exact test, t-test). A two-sided p value of less than 0.05 was considered to indicate statistical significance. Open-ended survey item responses were coded using thematic analysis [26]. The coding framework for the qualitative interviews was developed inductively by three members of the research team, including the principal investigator, one co-investi-gator, and one project coordinator. This process involved the reading and discussion of three interviews to develop consensus on the emerging themes. The qualitative software program QSR N6 was used to assist with the labelling, revising, and retrieval of codes during analysis of the interviews.

Sample
Four hundred and thirteen (n = 413) Aboriginal youth from Vancouver, Edmonton, Winnipeg, Ottawa, Toronto, Montreal, Halifax, Labrador, and Inuvik completed the survey and twenty-eight (n = 28) Aboriginal youth participated in in-depth, semi-structured interviews. Youth from all ten provinces and one territory participated in the study. The survey and interview samples were similar in terms of gender distribution of participants (females: 52.8% in survey, 57.1% in interviews). The survey participants were slightly younger (average age = 21.5 years, median = 21.0 years) than the interview participants (average age = 24.4 years, median = 24.0). Approximately half (50.8%) of the survey participants had tested for HIV (n = 210), and of these, 26 (12.4%) were HIV-positive. In comparison, almost all interview participants (89.2%) had tested for HIV, and of these, 9 (36.0%) youth were positive. Tables 1 and 2 provide additional information about participant characteristics.
Of the 28 interview participants, 25 self-identified as First Nations (FN), two were Inuit, and one was Métis. While youth participating in the interviews shared many stories of very challenging circumstances (e.g., street involvement, homelessness, prostitution, sexual abuse as a child, and trouble with the law), many also shared stories that reflected their sense of personal responsibility, focus on personal health, involvement with community, family, and cultural activities.

Reasons for testing or not testing for HIV
Surveyed youth were presented with a list of reasons for HIV testing from which they could choose multiple responses (see Figure 1). Among youth who had had an HIV test (n = 210), the most common reasons for testing were having sex without a condom (43.6%), and being pregnant or thinking that they were (35.4%).
Youth also were presented with a list of reasons for not testing for HIV (n = 203) (see Figure 2). The most common reasons provided for not getting tested were a selfperception of being a low risk for HIV (45.3%) and the self-perception of not having had sex with an infected person (34.5%).
The youth who participated in interviews shared many attitudes and beliefs related to HIV, AIDS, and sexuality that provide a more in-depth understanding of factors that may influence youths' decision to have an HIV test. For example, the feeling of "invulnerability" in relation to HIV risk and the belief that "it can't happen to me" were common among participants. The youth attributed these feelings to normal "risk-taking" youth behaviour and, at times, a greater concern with issues such as pregnancy: All kids engage in risky behaviour. It's part of being young, is just taking risks and taking chances and being dumb, in some cases. They know that their friends are doing it and have been doing it, and they're fine, and they've not had any problems, no one's gotten pregnant yet or whatever...

(Irene, FN, Female)
Among the interviewed youth, it was very common to fear HIV, AIDS, and HIV testing and some of the youth viewed AIDS as a death sentence. The fear of AIDS could be both a motivator and a detractor to HIV testing. For example, Sara was positive for hepatitis C, and although she felt that her risk of AIDS was lower, she was very frightened of AIDS and believed that the majority of persons infected with the disease would die:  For the 40 youth who tested outside their current community or the community where they lived at the time of the HIV test, 10 indicated that they did so because "no one knew me," 9 because "I knew the health worker", 6 because "there was no HIV testing in their community", and 3 because "my family was there to support me." The youth who had been tested for HIV were more likely to report a previous STI (47% vs 12%; p < .001), a history of injecting drug use (21% vs 5%; p < .001), or having had anal sex with any partner (25% vs 15%; p < .008) than youth who had not been tested.
Almost three-quarters (74.1%) of youth who had been tested (n = 210) reported they had taken their last test between 2002 and 2004, and only 13.3% of those who had ever tested for HIV reported that they had not tested within the last two years. The majority of youth (60.0%) had tested once (36.8%) or twice (23.2%) in the past two years (see Figure 3). Although most participants tested at medical clinics and hospitals, several expressed support for drop in testing sites that provide flexibility in access to HIV testing services. Sam was able to access HIV testing in conjunction with other services offered by a drop-in centre: Reasons for not testing for HIV (n = 203) Figure 2 Reasons for not testing for HIV (n = 203).
You could be here to use the food bank. Nobody's really sure. And people are coming, going in and out so much, suppose you duck into one of these doors and get tested, then nobody's the wiser that that's why you were here.

The relationship between testing and care
Of the 26 surveyed youth who reported they were HIVpositive, 8 (30.8%) indicated they had symptoms at the time of diagnosis, including 6 (23.1%) who were told they had AIDS. Twenty-five of the HIV-positive youth provided information on accessing care. Twelve (48.0%) said that they had visited a doctor after HIV diagnosis and 10 youth provided information on the time interval between their HIV diagnosis and when they first saw a doctor (see Table 3 The finding that a few participants who were IDUs had symptoms of HIV illness at the time of diagnosis, suggests Number of times youth tested within last 2 years (n = 210) Figure 3 Number of times youth tested within last 2 years (n = 210). Trent continued to inject drugs and avoid his HIV positive diagnosis until he was admitted to hospital with pneumonia.
[Drug addicts are] more interested in using drugs than maintaining their health. I've really seen people who are really, really ill, and they don't notice that they're ill, 'cause they're using drugs... That's the way I was too. Before, I got really, really sick, and I ended up in the hospital...

Discussion
Several of the interviewed youth shared stories of very challenging circumstances, which while placing them at high risk for HIV infection, must be interpreted within the broader social, political, historical, and economic context. In Canada, many Aboriginal individuals and communities share a continuing history of marginalization and discrimination, and an increased burden of ill-health, arising from the legacy of colonization [27,28]. In order to acknowledge this history and plan effective interventions, it is important to shift the dialogue away from risk behaviours to the broader concept of risk environment [29,30].
Recognition of the influence of the risk environment on vulnerability to HIV has been documented in Aboriginal youth and women. In a recent Canadian study [31], Aboriginal youth were more aware of the structural factors, including the impact of colonialism that influenced their HIV risk than their non-Aboriginal counterparts. Similarly, Aboriginal women living with HIV highlighted the influence of historical trauma on their response to HIV testing and counselling [32].
HIV testing rates and reasons for testing among youth vary depending on the recruitment settings, the population, and the age of the youth. In the current study, approximately half of the surveyed youth had been tested for HIV, but this proportion is probably not representative of Aboriginal youth in general since some of the recruitment was done in settings that provide HIV testing services. Peralta and colleagues [33] reported that 30% of primarily African American youth between 12 and 24 years had been tested for HIV, with older youth being more likely to test. Similarly, a national survey of South African youth [13] found that older youth were more likely to report having been tested for HIV. In a large American survey of sexually active adolescents 22% had been tested for HIV [16]. Testing rates among youth in high risk situations however, may differ from those in the general population. Among youth 18 to 25 years enrolled in a detoxification program a high proportion (85%) had been tested for HIV, and 74% of youth accepted HIV testing as part of a research study [34].
In the current study the most commonly cited reason (43.6%) for testing was "I had sex without a condom", with smaller proportions of youth stating that they had been tested because it was part of screening for sexually transmitted diseases (20.4%) or it had been recommended by a health professional (16.6%). The finding that a large proportion of the youth independently initiated screening is encouraging and has been reported elsewhere, however the limited influence of health professionals on HIV testing differs in comparison to previous research. Concern that HIV had been contracted through sexual behaviour was a major reason for HIV testing in HIV-positive and HIV-negative American youth [35]. Most youth reported that their decision to have an HIV test was also influenced by a health professional's recommendation. A recent chart review [14] to explore reasons for HIV testing among American youth 13 to 18 years of age found that among those with a documented reason for testing, routine screening was the most common reason for HIV testing, with few adolescents having self-initiated their HIV test.
The reasons that youth gave for not having an HIV test are similar to those given in other studies, however the ordering of reasons both confirms and refutes those given in other studies. Almost half (45.3%) of the youth in the current study stated that "I am at low risk for HIV" as the reason for not having had an HIV test. Similarly, 54% of the youth in a study by Peralta and colleagues [33] felt that they were at low risk for HIV. In Peralta's study, the most common reason (63%) that youth had not been tested was they had never been offered an HIV test, whereas in the current study only 25.1% of the youth mentioned that a doctor or nurse had not recommended an HIV test.
The findings in the current study related to where youth went for their most recent test differs significantly from other research findings. The largest percentage (34.1%) of youth went to a physician for their most recent test, while only a small number (4.4%) went to an anonymous testing clinic. Murphy and colleagues [35] reported that approximately two thirds of their sample of both HIVpositive and HIV-negative American youth were tested at clinics that offered anonymous or confidential testing. This variation may reflect the difference in health systems in Canada and the United States, with Canadian youth feeling more comfortable accessing physicians for HIV testing due to universal health care.
Youth participants were fearful and anxious about HIV, AIDS, and HIV testing and a significant proportion viewed AIDS as a death sentence. The portrayal of HIV and AIDS in Aboriginal media using emotionally charged, often negative terminology [36] may contribute to the fear of HIV and AIDS. Furthermore, HIV and AIDS have been strongly associated with death since early in the epidemic [37], particularly prior to the availability of treatments such as antiretrovirals. MacPhail and colleagues [38] reported that South African youth associated a positive diagnosis with decreased opportunities for the future, including the ability to marry and become a parent. Aboriginal youth in a recent Canadian study [31] were also anxious about HIV and more likely to view AIDS as a death sentence than non-Aboriginal youth. Similarly, a Canadian study [39] that explored the experiences of Aboriginal men and women living with HIV reported that it was common for participants to equate an HIV diagnosis with a death sentence and that about half of the participants had either considered or attempted suicide following their diagnosis. The authors suggested that this was related to a desire to "numb the pain, to help along the inevitable, or to avoid going through what they had seen others experience" (p.159).
The decision to submit to an HIV test may produce anxiety and fear among adults and youth alike. Worthington and Myers [40] suggest that the anxiety associated with HIV testing is complex and is related to risk perceptions, stigma, and the patient-provider power dynamic. The finding that youth often made the decision to have an HIV test based on their assessment of past behaviour has been reported elsewhere in studies with non-Aboriginal youth. An American study [34] reported that for adolescents in a detoxification program their perception of HIV risk might be more important than their reported risk behaviours in their decision to accept an HIV test.
Previous studies have documented that Aboriginal persons are more likely to have a late diagnosis of their HIV infection [20] and less likely to receive optimal anti-retroviral therapy [41]. A troubling finding in the current study was the delay in seeking medical care following diagnosis with HIV. Only about a third (38%) of the HIV-positive surveyed youth had been to a physician during the first year following diagnosis. Similarly, among the interviewed youth, delays in seeking care from a physician ranged from a few months to seven years, thereby limiting prevention and care opportunities. The delay in seeking care following a positive HIV test seen in the current study is markedly different from studies with non-Aboriginal populations. Seventy-seven percent of HIV-positive youth in the charts reviewed by Grant and colleagues [14] accessed care within two months of diagnosis. Flicker and colleagues [18] reported that urban HIV-positive youth had difficulty accessing resources and suggest that urban youth may be "falling through the cracks" (p.308) in terms of meeting their needs for services and support.
The use of a mixed method design in the current study enabled the research team to describe HIV testing behaviours and care decisions in a large sample of Canadian Aboriginal youth, while at the same time develop a more in-depth understanding of factors influencing youths' decision to have an HIV test and access care. In most cases, the findings from the interview data supported and confirmed the findings from the survey data. In all cases, the richness of the qualitative interview findings assisted the researchers to provide a more comprehensive description of the issues related to HIV testing and care in Aboriginal youth. Despite the benefits related to integrating both qualitative and quantitative data collection methods, the study findings must be interpreted carefully in light of the sampling techniques used. Both the survey and interview samples were recruited using convenience and network sampling and weighted toward those who had tested for HIV to reflect the research interest. Therefore, the findings may not be representative of the true frequency of testing among Aboriginal youth in the community. Furthermore, HIV testing experiences and the time period between diagnosis and accessing care were self-reported and therefore response bias may have influenced the youth responses.
The findings from the current study provide important new insights into the factors that motivate Aboriginal youth to have an HIV test, and subsequently, if positive, make decisions about accessing care and treatment. This is an important contribution, particularly in light of the limited research on the health needs of Métis, urban Aboriginals, First Nations people not on reserve, and Aboriginal women and children in Canada [42].
Accessible, confidential, and/or anonymous HIV testing is an integral component of a comprehensive approach to HIV prevention. While recognizing the critical importance of HIV testing, it is important to acknowledge that it is not a panacea to eliminate HIV transmission within communities and populations. A few researchers have raised interesting paradoxes related to HIV testing, demonstrating an increase in risk behaviours among HIV testers.
Ryder and colleagues [43] reported that in a Canadian population, repeat HIV-negative testing frequently resulted in confusion about what constituted risk and occasionally led individuals to think that they were immune to HIV. Mechoulan [44] used data gathered from American men who had sex with men (MSM) to demonstrate that following the introduction of antiretrovirals, HIV testers took more risks than non-testers. In the current study, a significant proportion (25.2%) of the youth had tested more than twice in the previous two years and some admitted to being regular tester. The relationship between HIV testing and behaviour change is complex and therefore, messages encouraging HIV testing in Aboriginal youth must be accompanied by HIV prevention information.

Conclusion
In the current study, approximately half of the surveyed youth and almost all of the interviewed youth had been tested for HIV. Of the youth who had tested for HIV, 12.7% of the surveyed youth and 36% of the interviewed youth indicated that they were HIV-positive. These rates are likely to be higher than the HIV sero-prevalence rates of Canadian Aboriginal youth due to limitations in the study design described above. The most common reasons for the surveyed youth to have an HIV test were they had had sex without a condom and, for females, were pregnant or thought that they were. Among both groups of youth, the feeling of invulnerability and the perception that they were at low risk for HIV was common. It is encouraging that many of the youth who tested for HIV did so based on a realistic self-assessment of their HIV risk; however, it is of concern that for others, a feeling of invulnerability was a barrier to testing. Furthermore, it is worrying that there frequently was a delay in seeking health services for the youth who tested positive. These findings provide important insights for the design and implementation of comprehensive HIV testing services for Canadian Aboriginal youth that acknowledge the influence of structural factors on HIV vulnerability. and interpretation of the quantitative data. JM, RJ, and TP provided expertise for the analysis and interpretation of the qualitative data. All authors assisted with the development of the manuscript and read and approved the final manuscript.