Abstract
In this article, we consider how the broad context of Aboriginal people’s lives can shape their experience and understanding of their HIV diagnosis. We conducted interviews across Canada with 72 Aboriginal people living with HIV who also reported feelings of depression. Consistent with what has been found in previous studies, participants responded to their HIV diagnosis with shock, disbelief, and often anger. Prior depression, drug and alcohol use, multiple losses, stigma, and social isolation also shaped how participants experienced their diagnosis. We consider how the history of colonization of Aboriginal communities in Canada relates to the experience of HIV diagnosis, and end with a discussion of the service implications of our findings.
Keywords
The diagnosis of HIV is a stressful and life-changing event. Previous research has examined people’s responses to news of their HIV infection, and a few studies have examined how the immediate context in which a diagnosis is given influences the ways people react. Relatively few researchers, however, have considered the influence of the broader context of people’s lives in their responses. In this article, we examine the responses of Aboriginal people living with HIV to news of their infection and consider how their personal histories and sociocultural backgrounds appear to have shaped their experience of diagnosis. We conclude with a discussion of colonization and its impact on participants’ experience of their diagnosis, and of the implications of our findings for practice with Aboriginal people.
People often react to an HIV diagnosis with shock, surprise, disbelief, anger, depression, and thoughts of suicide (Anderson et al., 2010; Anderson et al., 2009; Hult, Maurer, & Moskowitz, 2009; Kako, Stevens, & Karani, 2011). A recent study of African American young adults with HIV found that their HIV diagnosis was often reported to be the most traumatic event they had ever experienced (Radcliffe et al., 2010). Stevens and Hildebrandt (2006) explored the reactions of HIV-positive women to their diagnosis. They described the participants’ immediate reactions as devastation, shock, and indignation. Stevens and Hildebrandt also described longer-term reactions to the diagnosis: depression; submersion of the news, which allowed them to continue with their everyday lives; an escalation of drug and alcohol use; feelings of shame; and increased feelings of suicidality. These authors reported that they did not find differences in how people reacted across the dimensions of ethnicity or race, socioeconomic status, education, time since diagnosis, or rural/urban residence. Although research such as this suggests that people have broadly similar reactions to learning that they are HIV positive, questions remain as to whether the diagnosis has the same meaning for people from different social and cultural backgrounds.
People seek HIV testing for a variety of reasons: some are encouraged by their health providers, some suspect that they might be at risk of having acquired HIV following the diagnosis of a sexual partner, and some seek testing as a part of routine examinations, such as during pregnancy (Stevens & Tighe Doerr, 1997). Previous research has shown that the immediate context of diagnosis is important to the ways individuals respond to the news that they are infected. For example, the nature of the interaction with the health provider and the provider’s perceived sensitivity or professionalism can greatly affect how a diagnosis is experienced (Hult et al., 2009; Roth & Nelson, 1997; Worthington & Myers, 2003). Relatively little attention has been paid to the larger context in which a diagnosis is made. Roth and Nelson, however, noted that the timing of the diagnosis in the historical context of the epidemic influences how individuals receive the news, as does an individual’s membership in an “illness community.” For example, gay men might identify more easily than others with the AIDS community that exists in many larger urban centers; this community can provide them with resources and support in understanding their diagnosis.
Understanding the meanings attached to an HIV diagnosis is particularly important for Aboriginal communities in Canada which, like many other disadvantaged communities, have been disproportionately affected by HIV. Aboriginal people accounted for 3.8% of the Canadian population in 2006. In 2008, Aboriginal people represented about 8% of all people living with HIV and AIDS and 12.5% of new diagnoses, and the infection rate of Aboriginal people was 3.6 times higher than the non-Aboriginal population (Public Health Agency of Canada, 2010). Aboriginal people often have negative experiences with health care services and less access to antiretroviral treatment (Miller et al., 2006). Aboriginal people tend to be diagnosed with HIV later than non-Aboriginal Canadians (Lima et al., 2006) and they have higher mortality rates, even after starting antiretroviral therapy (Martin, Houston, Yasui, Wild, & Saunders, 2011).
A recent study of HIV testing experiences of Aboriginal youth in Canada found that the majority felt they were treated with respect, but nonetheless often experienced apprehension or shame as a result of the testing experience (Worthington et al., 2010). In addition to facing an increased risk of HIV infection, Aboriginal people in Canada also suffer from psychological distress, such as depression, at a greater frequency than non-Aboriginal people (Kirmayer, Brass, & Tait, 2000). Although there is considerable variation, rates of suicide among Aboriginal groups in Canada are between 3 and 6 times higher than the rest of the Canadian population (Advisory Group on Suicide Prevention, 2003; Kirmayer, 1994).
Increased vulnerabilities faced by many Aboriginal communities with regard to HIV and mental illness result from the history of colonization. Previous government policies in Canada led to forced relocation of communities, the apprehension of Aboriginal children from their families by child welfare agencies, and the placement of children in residential schools (Royal Commission on Aboriginal Peoples, 1996). Such policies seriously damaged Aboriginal families and other social institutions, led to the abuse of children, and disrupted cultural traditions. Children in residential schools were allowed little, if any, contact with their families, and many were physically and sexually abused (Barlow, 2009; Kirmayer et al., 2000; Trocmé, Knoke, & Blackstock, 2004). Intergenerational trauma might have resulted from such treatment, because these children learned parenting skills in often uncaring institutions, and as a result were often unable to parent their own children effectively. Those who had parents in residential schools have been shown to be at increased risk for depression (Bombay, Matheson, & Anisman, 2011). Moreover, such policies led communities to lose their traditional beliefs because children in residential schools and foster homes were actively discouraged from learning their traditions and language.
The loss of cultural traditions and language, racism, and social disconnection that result from colonization continue to undermine the health of Aboriginal people (King, Smith, & Gracey, 2009). Social conditions that characterize many Aboriginal communities in Canada, such as high levels of unemployment and poverty, the lack of adequate housing, low levels of educational attainment, and a high level of mobility, contribute to increased risks of HIV infection (Public Health Agency of Canada, 2010). A disproportionate number of Aboriginal people in Canada struggle with substance use issues (Kirmayer et al., 2000), which can increase HIV risk behavior (Thompson et al., 2009). Alcohol and drug use have also been shown to be related to increased frequency of depression and other mental health concerns (Hirschfeld, Kosier, Keller, Lavori, & Endicott, 1989). A history of sexual abuse among young Aboriginal people significantly raises the likelihood of self-harm, suicide ideation and attempts, and a diagnosis of a mental illness (Pearce et al., 2008). Relatively high rates of suicide among Aboriginal people have been cited as a result of the legacy of colonization and residential school experiences (Advisory Group on Suicide Prevention, 2003; Kirmayer, 1994)
In this article, we describe findings from interviews with 72 Aboriginal people living with HIV and AIDS who also reported feelings of depression. We describe participants’ experiences in receiving their HIV diagnoses and how they understood their HIV infection in relation to their personal and social backgrounds. Our data come from a national study that examined HIV and self-reported depression among Aboriginal people living in Canada (Jackson et al., 2008). In an earlier article from this study (Cain et al., 2011), we discussed how participants saw their depression as being related to their Aboriginal backgrounds and the many challenges facing Aboriginal communities in Canada. Depression, for example, was closely linked in the minds of participants to their experiences with racism, their history in foster and adoptive homes, childhood abuse, disconnection from family and community, and substance use. In the discussion below, we focus specifically on their experiences of HIV diagnosis.
Method
This community-based project was prompted by concerns expressed by Aboriginal People living with HIV and AIDS (APHA). The APHA caucus of the Canadian Aboriginal AIDS Network (CAAN), a national coalition of individuals and organizations that provides leadership, support, and advocacy for Aboriginal people living with and affected by HIV and AIDS, asked the organization to address the mental health concerns of its members. In keeping with the principles of community-based research, investigators from CAAN were members of the research team, and the project was guided by a National Research Advisory Committee that was comprised of Elders, Aboriginal people living with HIV, and Aboriginal community members from across the country. Fifteen community organizations (Aboriginal AIDS service organizations, friendship centers, and Aboriginal health centers) assisted with recruitment in several locations across Canada: Ottawa, Toronto, Vancouver, Edmonton, Winnipeg, and the Atlantic region.
The research was guided by the principles of community ownership, control, access, and possession of research data aimed to ensure that Aboriginal cultural values and self-determination were respected and protected in the research process (Schnarch, 2004). The study design was reviewed by members of the APHA Caucus at CAAN, and following this, ethics approval was obtained by each of the university-based members of the research team.
Aboriginal people with HIV were invited to participate in the study if they self-identified as Aboriginal (First Nations, Inuit, or Métis) and had experienced what they defined as depression or profound sadness. We did not limit the sample to those who had received a diagnosis of clinical depression because we expected that there would be cultural differences in how emotions, such as depression, would be experienced and understood, and that many Aboriginal people would not seek formal Western psychological or psychiatric treatment. The purposive sample included participants of various backgrounds, ensuring that they differed along the lines of Aboriginal group, gender, sexual orientation, age, length of time living with HIV, and self-perceived health status.
We conducted in-depth semistructured interviews lasting from 60 to 90 minutes and focused on participants’ experiences of HIV, depression, and the ways depression influenced how they managed their health and HIV. The vast majority of interviews were conducted in a private space provided by the community organizations that assisted us with recruitment. A few participants chose to be interviewed in a neutral location such as a coffee shop or hotel room. With the permission of participants, interviews were audio recorded, transcribed, and thematically coded and analyzed using Atlas.ti (2005) to manage the data.
A coding scheme was developed by three members of the research team. As suggested in the methodological literature (Patton, 2002), we started with a set of initial themes based on our research questions and starting assumptions. This coding scheme evolved as more data were collected and analyzed. The coding scheme that emerged for the larger study from which this article is drawn included themes on personal and family background, cultural issues, depression and HIV, formal and informal supports, substance use, and recommendations for service. In this article, we focus on these themes as they relate to participants’ discussions of their HIV testing and diagnosis. To help ensure the trustworthiness of our analysis and the relevance of our study to community needs, we presented our research plans at a national conference and a national meeting on HIV in Aboriginal communities, and we consulted with our National Research Advisory Committee. In these ways, we sought input from community members, some of whom were participants in the study, on our research design, research questions, and analysis. This process helped to enhance the rigor of our study.
Findings
We interviewed 72 participants from across Canada. Fifty-five participants (76%) self-identified as First Nations, 11 (15%) identified as Métis, 2 (3%) identified as Inuit, and 4 (6%) identified as “other,” perhaps indicating that they did not see themselves in one of the categories offered. Forty-five (63%) of participants were men, 23 (31%) were women, and 4 (5.5%) identified as transgender. Twenty-four participants (33%) self-identified as gay/lesbian/Two-Spirited, 1 42 (58%) identified as heterosexual, and 6 (8%) as bisexual. The age of participants ranged from 26 to 54 years, with an average age of 40. The length of time that participants had been living with HIV at the time of the interview ranged between less than 1 year and 22 years, with an average of 9 years from diagnosis. Forty-two participants (58%) reported that they had mild symptoms related to their HIV; 27 (38%) reported no symptoms, and 3 (4%) reported serious symptoms at the time of their interview. Twenty-eight participants (39%) reported that they were not taking HIV medications at the time of their interview.
Reacting to an HIV Diagnosis
The diagnosis of HIV was a life-altering event to which participants responded with shock, disbelief, and often anger. Some recalled “shut[ting] down” and getting “tunnel vision” when they were given their test results. One woman described the devastation she felt after learning about her HIV status when she was pregnant:
I remember that I just kept crying and I couldn’t talk. I cried all the way from the doctor’s office. I cried all the way home. People were seeing me on the streets, I didn’t care I was crying. Got home, my mom, she just said, “What’s the matter?” And I just burst out, I was like, “I’m going to die.”
Many participants did not consider themselves to be at risk of infection, making their diagnosis hard to absorb. A participant who was fairly recently diagnosed described her reaction in the following terms:
I was really shocked at first. I didn’t know what to think. I think I was pretty much closed in, like the whole world just stopped for a second. And I was like, “Oh no,” and, “I’m gonna die.” That’s the first thing that went through my head, and the second thing was, “I didn’t think I could get it. I didn’t think I could ever get HIV. That’s not supposed to happen to me. It could happen to everybody else, but not me.”
Shame and guilt were common reactions among participants on learning of their HIV infection, because many saw the diagnosis to be the result of their behavior relating to injection drug use or sex. Many spoke of how their shame kept them from telling others of their diagnosis: “I was embarrassed to tell people how I felt. I was, I don’t know, I just didn’t feel right about it. Like it was something to be ashamed of, that thing I had.” Anger, too, was a common reaction. Some were angry at the person they believed had infected them, and some were angry at themselves for getting infected. Others experienced a more generalized anger. One man reported,
Well, if I’m going to die, I don’t care about myself or anybody, so I committed a serious offense, which was a home invasion. And I got a six-and-a-half year sentence on that, and so when I was in prison, I was more depressed because now I’m alone in prison.
Others described what Stevens and Hildebrandt (2006) called “submersion,” where they “pushed down the awareness of having HIV infection and held it under water so that it could not breathe and influence their lives” (p. 216). To carry on their ordinary routines, they simply did not let themselves think about the diagnosis. One man described how he and his partner dealt with the news:
We both felt really emotional, like where we sort of cried “Oh my God” and we were kind of crying and it was very upsetting, and then almost instantly we just sort of shoved it to the back of our minds in many ways and just carried on and just sort of thought that, well, we’ll deal with things as it comes along, but if we didn’t stress it too much, if we didn’t think about it too much, if it didn’t become the focus of our lives, then it wasn’t going to impact them that much.
In these ways, our findings are consistent with the previous literature on how people react to HIV diagnosis. The interviews revealed, however, that the backgrounds of participants shaped how they understood their diagnosis in particular ways.
Drug and Alcohol Use
Drug and alcohol use was cited by virtually all participants as a major personal concern. Almost everyone discussed substance use, either current or in the past, as a key health and social problem. Many started drinking at a young age; several spoke of drinking at age 7 or 8. One man discussed his childhood on a reserve: “We were taught to drink when we were young. I was drinking shots of whiskey when I was eleven with my Dad, watching the hockey games.” Others talked about how they drank heavily and used drugs as adults, over the course of many years. The drugs used included marijuana, barbiturates, cocaine, and heroin, among others. A number of participants ended up living for a time on the streets, and some engaged in the sex trade or in crime to support their substance use.
Substance use was a significant feature in participants’ responses to their HIV diagnosis. Given an often long-established pattern of substance use, many responded to the stress and anxiety of their diagnosis by drinking or using drugs. Most participants believed their diagnosis led them to increase their drinking and drug use significantly, at least for a while. An Inuit woman recalled her reaction to her HIV diagnosis:
I was so shocked by it, I couldn’t believe it. . . . I didn’t accept it right away, and I just started drinking right away, and felt ashamed inside and did things and ended up on the streets for maybe five years, six years. I never accepted it for all those years.
Several participants stated that they were not able to focus on their HIV until they dealt with their substance use. During this time HIV seemed to fade into the background:
I was more in tune with my alcohol abuse, trying to sober myself up and learning about my addictions than I was about my status with HIV. . . . After I stayed sober for a little over a year—a little over a year and a half, two years—then I started dealing with the HIV issue, but it wasn’t until I started learning about my addiction first.
Although most participants discussed the influence of their HIV diagnosis on their substance use, several described their diagnosis as a turning point. The diagnosis was an opportunity to reassess their lives and to make changes for the positive. One participant described leaving her doctor’s office after receiving her diagnosis:
I can remember leaving his office and standing at the train station. The hardest and scariest, loneliest time of my whole life was standing right there. [Crying] All I remember was standing there, arguing out loud, should I live or should I die? For a while I stood there arguing out loud about the pros and cons of each. I decided I wanted to live. Even to this day, I haven’t stuck a needle in my arm and I haven’t had a drink since.
Depression
A number of participants reported that they became depressed on learning their HIV status. These reactions are similar to the relationship between HIV diagnosis and depression that has been described elsewhere (Anderson et al., 2009; Stevens & Hildebrandt, 2006; Stevens & Tighe Doerr, 1997). On receiving news of their infection, many participants lost hope and isolated themselves from others. Some experienced rejection from those around them, which they said led to depression. For some, it seemed inevitable that HIV diagnosis would lead to depression: “They go hand in hand. I find that, having given it some thought over the years, it’s almost impossible to have one without the other. You can’t have been diagnosed with HIV and not have some form of depression.” Hearing the diagnosis, at least initially, as “a death sentence,” many of these participants did not see a future for themselves. Such feelings of depression were short-lived for some people, but for others, they endured for years.
In contrast to such accounts of depression following diagnosis, most participants reported that they struggled with depression long before their HIV diagnosis. This observation needs to be understood in the context of participants’ lives. About one third of the sample (23/72) spoke of a history of childhood abuse, and more than 10% (9/72) disclosed being sexually abused as children. Substance use was an element in most of these stories. Several participants, for example, believed that their parents’ drinking led to physical or sexual abuse, or neglect. As a result of such experiences, many participants (23/72) were placed in foster care or adoptive homes. Many also pointed out that the inadequate parenting they received, and early experiences of abuse and neglect, were central to their own substance use and to feelings of depression that existed prior to their HIV diagnosis: “The cause of my depression when I was sixteen years old was the abuse and fighting and drinking and everything at home. The lack of love, the lack of understanding—you name it, I wasn’t getting it.”
Participants saw complex links between their preexisting feelings of depression and their drinking and drug use. Some understood their substance use as a way of dealing with preexisting depression, but others believed that it led to depression:
Drugs, alcohol, they’re not worth it. And you know, it’ll harm you, and that’s not even the worst part. I mean, the physical effects are bad, but one of the side effects of the drugs and alcohol is, the after effect is, depression. If you’re not already depressed, on some level before you start, you will be afterwards.
Such issues were paramount concerns for many participants, and their HIV diagnosis was not seen as the major contributor to their feelings of depression. Here is how one participant put her HIV in perspective:
I don’t really think about the HIV too much. I’m more concerned with the drug use, which I guess is related to HIV, because that’s how I got HIV, right? It doesn’t bother me right now, the HIV, but that doesn’t mean that I’m happy with the way things are right now. Because basically my HIV status right now is kind of stable, but I worry about other things like my hep [hepatitis] C, and you know, the drug issues.
Such accounts of depression prior to diagnosis were different from what is generally reported in the literature. For these participants, diagnosis was not the cause of their depression, but it made their preexisting depression worse and increased their struggle to bring it under control. One participant reported,
I was diagnosed as suffering from depression . . . but since I’ve had this news [HIV diagnosis], it has been more hard to cope with. I’m feeling down in the dumps a lot. It seems to be more increased.
Similarly, another noted, “The depression comes from the roots of alcohol and the upbringing of my life, but to be slapped in the face with HIV just sent it skyrocket[ting].”
The causal links between depression and their HIV diagnosis was inverted for a number of participants in that their depression contributed to behaviors that increased their risk of acquiring HIV. For these individuals, depression led to their diagnosis, not the other way around. For example, one participant reported that repeated physical and sexual abuse in childhood led to depression, which in turn led to frequent drug use combined with unprotected sex with multiple partners:
I think what it is, is that I really didn’t feel so good about myself and I just didn’t care. . . . Because looking back, you say, okay, crystal meth [methamphetamine] and the raw sex and the HIV, it was like a slow kind of suicide for me. I just wanted to get it over with. This is one way of doing it . . . and it’s all because of depression.
In this participant’s mind, depression and HIV were causally linked, but rather than HIV leading to depression, he believed that his depression led to his HIV, at least indirectly.
Faced with the many harsh realities in their lives, it was perhaps not surprising that a number of participants reported that they attempted or seriously contemplated suicide. Most of them did so before their HIV diagnosis, but several described how they became suicidal only after learning of their HIV infection. After finding out that she had HIV, one woman jumped from a bridge, breaking her pelvis and several other bones. Many participants spoke of family members, friends, and acquaintances who had killed themselves, so the possibility of suicide after their HIV diagnosis—particularly on top of their own histories of depression and struggles with substance use—did not feel distant from their lives.
Diagnosis and Death
A significant number of participants were not receiving antiretroviral treatment at the time of their interview. Of 72 participants, 28 (39%) reported that they were not taking any HIV medications. With less access to treatment and the additional treatment challenges that can come from inadequate housing and substance use, diagnosis represented more of a realistic life threat for many participants than for other Canadians living with HIV (Pearce et al., 2008). As Flowers et al. (2006) have noted, an HIV diagnosis “is equivalent to a prognosis of death” (p. 110) for those without access to treatment.
Moreover, participants often talked about repeated and significant losses. They reported that their lives, from an early age, had been marked by the premature deaths of friends and family members. The following narrative about experiencing close deaths was not uncommon in the interviews:
I have a lot of death in my close family. My cousin died when I was sixteen. She was my best friend. She died in a car accident that we were in. . . . My cousin died, then my aunt and uncle. They were very close to me, they were really, really nice to me, of all my aunts and uncles, and then they both died, and then my grandfather died, then my friend died, my other friend died, then my mother died, then my uncle died, and my grandmother’s sister died. Those are all people that I knew really, really well, who were really important to me. And so, yeah, it’s kind of depressing I guess in some ways.
Another respondent connected the losses he had experienced with both depression and drinking:
I’ve been going through a lot of depression in the last . . . like a lot more than usual in the last few months because of the losses that have been happening, and just dwelling on people that I’ve lost. And I’ve been drinking a little bit during this time.
HIV diagnosis represented one more factor in participants’ lives that they anticipated could lead to premature death. In this context, this would not seem far removed from the other losses that characterized their lives and the lives of those around them. It was not surprising, as a result, to hear that many heard their HIV diagnosis as a death sentence despite any assurances they received about advances in medical care.
Stigma and Isolation
Many people diagnosed with HIV experience stigma, either because they are gay, have engaged in injection drug use, or are involved in the sex trade (Herek, 1999; Mill, Edwards, Jackson, Austin, & Reintjes, 2009). This was true for the participants, who also often dealt with issues of racism and homophobia. Aboriginal people are often stigmatized by community members as a result of their HIV status (Mill et al., 2009). Stigma led some participants to conceal their HIV status and, to isolate themselves from friends and family. Social isolation often served to compound the sense of previous losses:
It’s really hard because I want to tell people, but I’m just really afraid of how they’re going to react or what they’re going to say. I’ve already lost a lot of people through my drug use. I’m just afraid of losing more people in my life.
For many participants, the fear of being rejected by family and community was realized. Some had supportive family, friends, and communities, but more frequently, participants told stories of being cut off from those they loved: “I’ve met my half-brothers and -sisters, and none of them wanted anything to do with me, except one half-sister, ever since they found out I was HIV, anyway.” Some were advised by family members to stay away from their home communities.
The isolation of others was more self-imposed. Some participants took it on themselves to break contact with family and community despite the family’s wishes to have them home. Others cut ties, anticipating rejection from family members: “When I found out I was HIV, I was ashamed of myself and I didn’t want my family to shun me like everyone else does that finds out that I have HIV.” Other participants felt compelled to protect their family from community gossip and from “the burden of having a person in the family with AIDS.” Gossip in small communities was an important concern for participants; gossip was also a concern for those living in larger cities who were involved in the relatively small local networks of Aboriginal people. Stigma meant that participants who often felt marginalized by dominant Canadian society also felt alienated from their home communities, families, and friends. This increased their sense of isolation, their feelings of betrayal and anger, their depression, and for some, led to increased substance use.
Although isolation from family and community was cited as an important concern for participants, reconnecting to community was often described as a key source of strength. Several participants talked of rediscovering, or discovering for the first time, cultural traditions, and reconnecting with their communities. These connections often resulted from their efforts to deal with their substance use or depression. One man explained,
I’ve never ever recognized my heritage or anything native or Aboriginal about me. I don’t know my language, I don’t know where I’m from, I don’t know where my parents are from. I’m about as far away from my parents as I can get, from where my Aboriginal ancestry lies. But the last couple of months, I am learning about native medicine, ceremonies, sweat lodge, going to sweats, and I’m thinking maybe I could learn something. . . . Up until a couple of months ago, I didn’t know squat [anything] about any kind of Aboriginal anything. But my knowledge is growing, and it’s kind of odd because I’ve been feeling an urgent sense that I need to know more, and I need to know quickly. And I’m really hoping that I learn something or come across something that might help me get this depression under control.
Discussion
Understanding people’s experiences of receiving an HIV diagnosis is crucial to providing appropriate care and support. As Stevens and Tighe Doerr (1997) noted, “Initial subjective experiences of HIV seropositivity can have ramifications for future outcomes of longevity, quality of life, and prevention of transmission” (p. 523). Our understanding of how diagnosis is experienced needs to take into account both the microlevel realities of people’s lives, as well as the macrolevel features of their social and cultural contexts (Lawton, Ahmad, Peel, & Hallowell, 2007).
In this article we have examined how the broader contexts of participants’ lives appeared to shape their experiences and understandings of their HIV diagnoses. For some, an HIV diagnosis represented another in a long series of challenges with regard to their health and emotional well-being, although it was not necessarily the most important or most immediate struggle they faced. Talking about their diagnoses led many to speak about their relationships to family and community, substance use, or feelings of alienation and isolation. A history of multiple losses in their lives led some, fatalistically, to understand the diagnosis to mean that they would soon die—as many others in their lives had done—despite their awareness of effective HIV treatments. Negative experiences with health care services meant that some participants had little faith that they would receive needed care and support.
The relationship between participants’ social and cultural backgrounds and their experience of diagnosis was not exclusively negative. Our findings reveal that an HIV diagnosis could give new meaning to aspects of individuals’ lives. Diagnosis led several participants to reevaluate their priorities and relationships to others. An HIV diagnosis led some participants to reach out and seek stronger ties to their family and community. Several spoke of how their HIV diagnosis prompted them to seek treatment for their depression or substance use, which in turn led them to explore the traditional beliefs and practices of their community. In doing so, they learned to feel better about their Aboriginal selves and they gained a stronger sense of belonging to a community. In these ways, diagnosis helped to shape their cultural identity and their ties to others.
The history of colonization is a significant reality that shaped participants’ experience of their HIV diagnosis. The legacies of residential schools and the apprehension of children, the disruption of traditional language and culture, and the many social and economic problems that resulted from government assimilation policies were reflected in how participants talked about their HIV diagnosis. Cultural disruption resulting from colonization continues to fuel social and economic challenges such as poverty and poor health outcomes experienced by many communities (King et al., 2009). These challenges also contribute to higher rates of HIV (Public Health Agency of Canada, 2010) and greater psychological distress (Kirmayer et al., 2000).
The disruption of family ties meant that many participants experienced inadequate parenting as children, feelings of anger and betrayal, and social isolation. Early experiences with substance use at home often resulted in ongoing struggles with drugs and alcohol, which in turn might have contributed to HIV risk behavior. Many Aboriginal people have less access to health care, which was apparent in the relatively low rates of HIV treatment among participants. Ongoing racism and discrimination contribute to isolation and self-blame. Such issues were not detached, but central to how participants talked about their HIV diagnosis.
How individuals subjectively understand their diagnosis has practice implications, and awareness of the various meanings patients ascribe to their diagnosis will help ensure that professionals are able to provide appropriate support, services, and follow up. At the time of diagnosis, it can be difficult to sort out what to address first, and individuals receiving a diagnosis can have different priorities than those of their health and social service providers. Health care providers might focus on medical or clinical issues and fail to address the broader social and cultural implications for those receiving an HIV diagnosis. Providers need to be mindful that the diagnosis touches on a host of personal and community issues that might appear to have little to do directly with HIV.
Authors such as Bucharski, Reutter, and Ogilvie (2006) outlined the need for culturally appropriate testing and counseling for Aboriginal women, which includes attending to such issues as ensuring a nonjudgmental interpersonal style, sensitivity to historical trauma and the effects of colonization, and respect for individual choice and Aboriginal cultural practice. Our findings support such conclusions and serve to remind practitioners that how individuals hear and respond to diagnosis is only partly a function of the news relating to their health. Service providers need to address more than HIV: they need to support people in making sense of their diagnosis in light of their personal history, their personal strengths and resources, and their community ties and traditions. For example, helping some Aboriginal clients connect to community support, traditions, and language, and build a sense of belonging—in addition to accessing needed health services—might be key to supporting them after receipt of an HIV diagnosis. Collaborations or partnerships with traditional healers can help ensure culturally competent care, and HIV and substance use issues might need to be addressed simultaneously (Barlow et al., 2008).
In this article we have examined the particular experiences of Canadian Aboriginal persons living with HIV, but our findings have implications for our understanding of how other socially marginalized groups might experience medical diagnoses. Racial and ethnic identity, experiences with racism and discrimination, community beliefs about health and healing, community members’ degree of trust in Western health care services, and people’s connections to family and community can all play important roles in shaping how they hear and understand news of their health condition, and what they do about it.
Footnotes
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and or publication of this article: Support was received from the Canadian Institutes for Health Research and the Ontario HIV Treatment Network.