Sociodemographic characteristics of focus group participants (n
104) are reported below in . The mean participant age was 38 y (standard deviation 9.1), over half of participants (62.4%) reported an annual income below CDN$19,999, and the majority of participants (61.5%) were born outside of North America ().
This study aimed to explore experiences of stigma/discrimination and coping among diverse HIV-positive women. On the basis of previous literature, it was hypothesized that women would experience stigma based on HIV-positive serostatus, gender, race/ethnicity, gender identity, and sexual orientation. Inductive coding resulted in identifying an additional source of stigma (involvement in sex work) and multiple levels (micro, meso, macro) () in which coping and stigma processes operated.
Experiences of Stigma Experienced by Women Living with HIV in Ontario
Findings highlight the intersection of stigma across micro, meso, and macro levels: HIV-related stigma; sexism and gender discrimination; racism; homophobia and transphobia; and sex work stigma. highlights the focus groups that discussed each theme.
HIV-Related Stigma: “It's Such a Taboo Topic”
Participants discussed experiences of multiple types of stigma (felt-normative, internalized, enacted stigma, symbolic) associated with being HIV-positive that were manifested across micro, meso, and macro levels of influence.
Micro level forms of stigma were described in both intrapersonal and interpersonal domains. Intrapersonal levels of stigma included intense shame and internalized stigma; internalized stigma refers to a stigmatized individual's acceptance of negative beliefs, views, and feelings towards the stigmatized group and oneself 
. As a transgender participant described: “Accepting yourself with HIV is hard. It's really hard. It's hard to live with it. It's hard to have a normal life.” The severe consequences of intrapersonal stress caused by internalized stigma are evidenced in another narrative: “the first thing you think of is how yucky you are, and then some people think suicide. I know a few people that have killed themselves” (Northern Ontario, small city).
Participants also discussed hiding their HIV-positive serostatus from friends and family to manage felt-normative stigma in interpersonal domains. Felt-normative stigma refers to awareness of negative societal attitudes and fear of discrimination 
. As a young woman stated: “I've had HIV for five years now. My parents don't know and I'm scared to tell them, because my mom will have a heart attack”.
Participants described that when they did disclose their HIV-positive serostatus they often experienced enacted stigma in interpersonal spheres. Enacted stigma encompasses overt acts of discrimination, such as social exclusion and violence 
. A young woman explained: “You think they're close friends, you decide to open to them and say, ‘I have HIV’. But then they don't want anything to do with you anymore. They stop calling, they stop coming over.” Thus participants found it difficult to accept their own HIV-positive serostatus and often hid their serostatus to avoid upsetting family and friends. This nondisclosure caused intrapersonal stress: “inside of me I'm dying of sadness, having to hide this” (African Caribbean).
HIV-related stigma was described as embedded in community and social norms (meso level). Symbolic stigma refers to othering, blaming and shaming of a marginalized group (e.g., PLHIV) and people associated with this stigmatized group (e.g., sex workers) 
. For example, symbolic HIV-related stigma frames HIV as a “dirty” and “immoral” disease. A sex worker explained: “cancer doesn't have as much as stigma as AIDS or HIV. Because it's sexually transmitted people look at it like you're dirty, you're not clean, bringing it on yourself.” This account suggests that the sexually transmitted nature of HIV differentiates it from other diseases and results in the attribution of blame towards PLHIV. Felt-normative HIV-related stigma constructs PLHIV as dangerous: “you're labeled as the pest of the society because you're infected” (Latina). This stigma may contribute to the silence regarding HIV: “There is a fear, denial and a total silence in the community about it” (South Asian).
This fear and silence regarding HIV present barriers to disclosing one's HIV-positive serostatus: “It's such a taboo topic, so it's really hard to have an open conversation about HIV. Because you don't know how that person is going to perceive you” (sex worker). These fears of mistreatment may be justified as participants described widespread enacted societal stigma. An African Caribbean participant explained: “discrimination is everywhere once they know you have HIV.” Other participants described being “ostracized” (injection drug using [IDU]) and “treated like garbage” (formerly incarcerated).
Enacted HIV-related stigma was also experienced in social services and health care domains (macro level). This stigma was at times subtle, and other times overt. A sex worker described: “once my ODSP [disability] worker found out that I was HIV-positive, she was just different. Her attitude changed.” A Francophone African woman expressed frustration with health care treatment: “I was in crisis—I had to go see a doctor. When she came in she had three pairs of gloves and yet it wasn't even a problem related to HIV! She kept her distance and could barely touch me. When she finally came closer I said: ‘If you do not remove your gloves you do not touch me!’”
Sexism and Gender Discrimination: “He Was Going to Take My Son Away”
Sexism and gender discrimination were highlighted in relationships and societal attitudes and participants highlighted a dearth of women-specific HIV services. Participant stories suggest that internalized HIV-related stigma may render it difficult to leave abusive interpersonal relationships (micro level). A young woman described: “when you have HIV, you want to be loved unconditionally. Fear of leaving the relationship, that you wouldn't find another person to love you, to treat you the way that he was treating you before, you take abuse.” Internalized stigma may present a barrier to leaving unhealthy relationships: “a lot of the times people blame themselves for being abused” (sex worker).
Other participant accounts indicate that their HIV-positive status was exploited in inequitable relationships with male partners. A participant (Northern Ontario, small city) recounted: “I did not tell my ex [I was HIV-positive]; I knew he was going to take my son away. Somebody wrote him a letter and said ‘keep your son away from his mother, she's HIV positive.’ My son was told by his daddy he's going to catch AIDS.” Community and social (meso level) norms may silence discussion regarding violence against HIV-positive women. An African Caribbean participant explained: “Women with HIV often end up in abusive relationships, suffer from violence. People don't want to talk about that. There's no program specific to women with HIV in violent relationships.”
Sexism and gender discrimination were highlighted in employment systems (macro level). A sex worker explained: “I lost my job because my manager stalked me. You know, just being a woman in general and then working in the sex trade—you can't demand respect in the health care system or in the employment system.” Participant narratives highlighted a lack of women-specific programs and services at ASO (macro level). An African Caribbean participant described that this exclusion may be due to perceptions of HIV as a “gay man's” disease: “most of these ASO do not cater specifically for women. I think that comes from the fact that long back HIV and AIDS was well known to be a white gay man's disease.”
Racism: “You're Thinking ‘You Come from Africa, You Don't Understand’”
Racism was highlighted in daily life, research, HIV services, and health care. An Aboriginal participant articulated: “We are suppressed as natives in our nation” (Northern Ontario, town); this invokes the perception that racism is a phenomenon of daily life. Such daily experiences of racism often resulted in intrapersonal stress (micro level): “I can go on for days with the racism. Everything just builds up” (African Caribbean).
Participants' narratives highlighted community and social norms (meso level) that exclude and silence the voices of people of color. A Francophone African woman described that with regard to HIV services, “The African community, for example, we are not informed about anything. Nothing at all.” These limited opportunities for Africans to participate in HIV programs suggest institutionalized racism in HIV services. Another participant expressed: “women of color are silent about their needs and what they want exactly from an ASO because we think it can't be changed. They're afraid if they say anything, it will be taken from them” (African Caribbean). This narrative reflects the experiences of women of color who may feel disempowered in HIV service delivery because of the intersection of race/ethnicity and gender.
Enacted stigma was discussed in research and health care (macro level). A participant articulated: “research is all about the White folks and what the White folks want to get from the Black people” (African Caribbean), highlighting the perception that white researchers exploit black bodies. Institutionalized racism was also noted in health care and pregnancy planning. For example, a participant described differential treatment at a fertility clinic: “Because you are black, if you go to the clinic and you say you wanna have a baby, they say, ‘Why do you wanna have a baby when you know your situation?’ Well they don't say that to the white people” (African Caribbean). This account suggests that the interaction of race/ethnicity and HIV serostatus may result in less support in pregnancy planning for black HIV-positive women in comparison with white HIV-positive women.
Homophobia and Transphobia: “They See You Being Queer as Being Demonic”
Participants recounted experiences of homophobia and transphobia within familial, community, and health care institutions. In the interpersonal sphere (micro level), participants described experiences of familial violence: “in my community they know that I'm bisexual. I got my HIV through my brothers, they gang raped me” (lesbian, bisexual, and queer [LBQ]). On an intrapersonal level, participants' stories highlighted the convergence of HIV-related stigma and homophobia was difficult to cope with. One woman reflected: “I think the stigma is double—it's stigma because you're HIV, stigma that you're not straight. The pressure is just too much to carry. It's just too much to handle” (LBQ).
Stigmatizing community and social norms (meso level) construct sexual minorities as “demonic” and HIV as a “gay disease.” A participant articulated: “they see you being queer as being demonic or evil” (LBQ). This suggests felt-normative stigma shapes socioreligious attitudes towards sexual minorities. An IDU participant noted: “People made it [HIV] such a dirty thing because ‘it's a gay disease’.” This narrative reflects the symbolic stigma surrounding HIV as a “gay disease.” The convergence of homophobia and HIV-related stigma often resulted in enacted stigma such as violence: “if you're gay, lesbian, bisexual, or queer, and you're HIV positive, and you come out, you will be killed because it's like you're the one who start that virus” (LBQ). Several participants noted sexual violence motivated by homophobia or transphobia as a route of HIV infection.
Participants highlighted discrimination and exclusion within health care and HIV services (macro level). For example, a transgender participant's account of accessing health care services is indicative of enacted stigma: “I had a massive heart attack, a quadruple bypass, and I was going to go to rehab for two weeks. I had a hell of a time getting in there because their facilitator there said ‘we don't have any place to put something like that.’”
Exclusion and invisibility of LBQ and transgender women within HIV services signals heterosexism. Heterosexism refers to the normalization of heterosexuality and the subsequent invisibility of nonheterosexual sexualities 
. To illustrate, an LBQ participant explained: “the HIV prevention course only talks about condoms. So, you don't even know what else is dangerous for you as a queer woman, because all you know is heterosexual.” Services for HIV-positive women were described as predominately heterosexual, while LBQ and transgender women's services were primarily for non-PLHIV—rendering it difficult for participants to disclose both an HIV-positive serostatus and an LBQ/transgender identity in the same context.
Sex Work Stigma: “They Treat You Like You're a Rat”
In the focus group conducted with women involved in sex work, participants highlighted felt-normative, enacted, and symbolic stigma experienced because of their HIV-positive serostatus and involvement in sex work. Participants' descriptions of micro-level stigma primarily involved interpersonal processes with family and friends. Several women explained that they lost friendships after disclosing an HIV positive serostatus and/or sex work involvement; this resulted in fear of disclosure. One participant described: “I've been positive for almost ten years. And I don't even tell half the people I know. As soon as I tell them they distance themselves.” This experience suggests felt-normative HIV-related stigma plays an integral role in shaping interpersonal relationships. As another woman explained: “with the drug abuse and the sex trade and being HIV [positive] they treat me totally different.” This account highlights the intersection of sex work stigma, HIV-related stigma, and drug use stigma. A participant articulated: “As someone who has worked in the sex trade, I keep it a secret a lot. Because even when I meet new friends, sometimes they're not the nicest people. And they'll say comments about working girls. They treat you like you're a rat. Like you're this small [makes a small space between her fingers]. Like you belong in a sewer.”
Fear of disclosing sex work involvement and HIV infection may also influence relationships with family and reduce access to care: “a lot of people don't even tell their families because of fear of being judged. So that can discourage people from disclosing and getting the proper supports and help that they need.” Sex work stigma and HIV-related stigma may also impact sex workers' children: “I do know from past experience with kids, and being a parent figure, that kids discriminated because their family members are in the sex trade. And even more, shun the kid out because the parent's got HIV. That is a big problem in public schools” (sex worker).
Participants highlighted community and social norms (meso level) that endorse symbolic HIV-related stigma directed toward sex workers. Symbolic stigma constructs sex workers as vectors of disease: “we all know that most people think that prostitutes are disease-carrying people. And if they really educated themselves around prostitution, they would know that prostitutes are pretty well-educated on protecting themselves on not getting diseases.” Sex workers may be incorrectly blamed as personally responsible for their HIV infection: “because you got it (HIV), you're careless. You're irresponsible. You're seen that way. But you're not.” Another woman articulated that people have the misconception that “You weren't protecting yourself” and clarified that “it could have been a broken condom from a long-term boyfriend. And all of a sudden everyone treats you like dirt.” Participants highlighted that sex workers are at risk for experiencing sexual violence: “there's a lot of date rapes.” Symbolic stigma may also exacerbate the intersection of sex work stigma, transphobia, and HIV-related stigma: “As soon as you say you're transgender, they automatically think you're a sex trade worker. And if you are a transgender sex trade worker, they automatically put you in a category where you're HIV [positive], and that's wrong” (transgender).
Participants discussed enacted sex work stigma within legal and health care systems (macro level). A transgender participant explained that she applied for refugee status but: “the immigration gave me a deportation order because they said I was a prostitute with HIV.” This suggests that legal protection for transgender human rights may be compromised because of sex work stigma and HIV-related stigma. Problems with medical systems were also articulated. One participant described: “I've been to a psychiatrist once and I hated it. I went there and I told him how I was feeling. I was very upset. I told him about working in the sex trade. And as soon as he heard that, he wanted to know, ‘How much were you charging? What kind of things were you doing? Describe it to me.’ I'm like, ‘Excuse me? Are you getting off on my stories? Are you serious? I'm not here to entertain you, I get paid to entertain. What the hell! I'm here because I need you to help me.’”
Participants reported being labeled and treated differently when receiving primary health care. As one woman recounted: “I had a friend who told one doctor that she worked in the sex trade and all of a sudden it's on her record. So every doctor she goes to now sees it on the paper. ‘Oh really, she's in the sex trade, let's test her for this and this and this.’ And she's like, ‘well I've already been tested for that. I don't have any of that stuff.’ But they'll do it every single time. They don't treat you like a normal patient.”
Another participant described being harassed by her family physician after disclosing her involvement in sex work: “I told one doctor at a clinic I was a dancer and I had pulled a muscle. After that he asked me out for a date, he asked me for my number. He called me at my house when I was 18 years old.” This narrative reflects the intersection of sex work stigma with gender discrimination. Such experiences led a sex worker to ask: “who do you get help from when you need help?”
Coping Strategies Enacted by Women Living with HIV
Participants described varied coping strategies that helped them to manage the stress of living with intersectional stigma and to live positively. These strategies constitute resilience (micro), social networks (meso), and challenging stigma (macro). highlights the focus groups that discussed each coping strategy ().
Resilience: “I Always Live with Hope”
Resilient coping includes personality and attitudinal traits such as tenacity, optimism, and problem solving in difficult situations, and is associated with positive psychological outcomes 
. Participant testimonies reflected such traits. For example, a South Asian participant characterized coping as: “just being strong. You just have to think positive.” This account suggests optimism may be an important coping strategy. A sex worker's narrative reflects fighting back against internalized stigma and blame for childhood sexual abuse: “A lot of times people blame themselves for being abused. I was one of the very few people that didn't. I didn't think I was dirty. I just thought that person was a total piece of crap. And I felt that that had nothing to do with who I am.”
An LBQ participant highlighted the importance of: “self-determination, it's knowing what you really want in life and be focused on it.” An African Caribbean woman's testimony demonstrates tenacity and problem solving: “We have a lot to face. And, at the end of the day we sit and we feel depressed, we feel bad, but we have children to look after, send them off to school, some of us work. So, we get up and we face the day like nothing is going on, although we're hurting inside. I think that's our greatest strength.”
Faith and prayer may be personal resources integral to coping. A young woman articulated: “for me, praying is number one. I always keep praying to God that he would just guide me through all of this. Giving God praise for everything that he's done that's taken me through this whole thing.” This importance of spirituality was reiterated in a sex worker's account: “we went on a spiritual retreat and I feel that it would benefit a lot of people who have HIV because God's a strong presence.”
Social Networks: “I Want to See More Peer Support”
Social networks of HIV-positive women emerged as a vital coping resource. A participant noted: “Sometimes the things that you have to face, you become so suicidal at many points in your life. You want to just end it. But then you meet friends; there are groups that can really help you to pull through. They give you strength” (LBQ). This narrative elucidates the benefits of support groups in helping HIV-positive women cope with intrapersonal stress. Support groups were described a way to combat feelings of isolation: “It's good [to] know you're not alone. And, I think people with HIV, the first thing within the first week, is to get into a group and talk” (Northern Ontario, small city). In addition to combating loneliness, support groups can provide a forum for sharing experiences and learning: “you can share experiences, so that you can help each other, so that you can feel better. Sometimes if you are alone you feel weak and you need somebody to say, ‘oh, I'm not alone in this world’” (young woman). Social support groups can be particularly important for sex workers who have multiple stigmatized identities: “because there is some similarity in lifestyle, people tend to feel more comfortable and open up when they're talking with somebody that's been through the same experiences” (sex worker). Because of these myriad benefits, more social support groups for HIV-positive women were called for: “I want to see more peer support” (IDU).
Challenging Stigma: “Stand against the Stigmatization of Ourselves”
Challenging stigma was described as important for HIV-positive women's coping and empowerment; this involved engagement of HIV-positive women in fighting for equal rights. A Francophone African woman explained: “I think it's really important to stand against the stigmatization of ourselves and discrimination. You have the rights of a person just like everyone else.” Participants articulated “I think what needs to happen is political action” (urban) and advocacy “a woman with HIV advocating for somebody else who has HIV, that's a good idea” (formerly incarcerated). These accounts reflect the need for political mobilization. A critical component of challenging stigma may be education: “I think it is important to have education for the gay men or the lesbians to have a voice to fight stigma. No discrimination, no stigma” (LBQ). A sex worker described that community-based education can also address sexism and sex work stigma: “I think that if there is more education, the discrimination will also go away a little bit because people will have a better understanding of what these people actually go through. And that would be a big motivation if we went to schools about HIV, or specifically for sexual assault or sex trade work. And then everyone would not judge it and think of that person being dirty or that person is gross.”
Other participant narratives highlight the need for empowerment of HIV-positive women to challenge stigma in HIV services and research. Participants explained that HIV services: “should refocus on empowering women” (African Caribbean) and “we're the ones who are supposed to make the decisions” (Asian). This empowerment of HIV-positive women also applies to HIV research: “women should have more say in what research is being done” (sex worker). A sex worker explained: “I think we have to be more vocal. Otherwise they won't know what we go through and how we feel and what we need. And it would be nice to inform everyone of what's going on.” This statement reflects both the importance of articulating one's needs as well as educating others.
Reconfiguring research involves challenging the hierarchy in which HIV-positive women are research participants: “I really think that we have to be recognized for more than just as participants—we should be directing it” (industrial city). Involving women as directors of research and service providers also recognizes knowledge of lived experience: “how better can you help a woman with HIV, than have a woman counselor that has it and showing that they're functioning, they're healthy, and that they can survive in this world with HIV?” (IDU). It may also reduce social distance between service providers and participants: “I think that we could bring something to the table because we have firsthand knowledge and we've walked in those shoes. Working here [sex work agency] and being involved in prostitution myself—I'm able to connect with the other women” (sex worker).