Women's Health Matters

Text Size
Jump to body content

Stigma and coping strategies among HIV-positive women are complex and overlapping

By Maria Serraino

When a condition is perceived unfairly, it adds to the challenges of living with that condition. The stigma that may accompany issues such as mental health, violence or HIV not only poses an additional hurdle to the people affected by those issues, but is also a barrier to improved treatment and care.

A recent study in PLoS Medicine, conducted by Women’s College Research Institute scientists in collaboration with Women’s Health in Women’s Hands, a community partner, found that marginalized women living with HIV in Ontario experience overlapping forms of stigma and discrimination. Aside from HIV-related stigma, women experience discrimination and stigma including racism, sexism and gender discrimination, homophobia and transphobia.

The researchers, led by WCRI scientist Dr. Mona Loutfy, point out that the forms of stigma operate on several levels, from intra- and interpersonal, to larger-scale discrimination and exclusion from the community and services. The researchers call these levels micro, meso and macro, and found that the coping strategies that women use also operate over these levels.

According to background information in the study, HIV infection rates are increasing among women in Canada, and women account for 22 per cent of Canadians living with HIV. Moreover, there is a disproportionately high infection rate among marginalized women. 

Through focus groups, the researchers explored how Ontario women living with HIV experience stigma and discrimination, and what coping strategies they use. Participants included 104 diverse HIV-positive women in five cities across Ontario. They were divided into 15 focus groups including transgender women, women with experiences of incarceration, injection drug users, Francophones, sex workers, young women, lesbian/bisexual/queer women, HIV-positive women service providers, women of different racial backgrounds and women from different-sized towns and cities throughout the province. Focus groups were used because they help promote community involvement and allow for in-depth conversations. 

The researchers found that women living with HIV in Ontario experienced multiple types of stigma at different levels: micro (individual attitudes and beliefs), meso (social and community norms) and macro (organizational/political).

On a micro, intrapersonal level, participants discussed how experiences of stigma reduced their self-esteem, self-worth and at times, increased depression and/or suicidal thoughts. Internalized HIV-related stigma (negative beliefs or attitudes about people with HIV that the women themselves come to accept) made it difficult for women across the focus groups to leave abusive relationships – fearing that they wouldn’t find another person to love them.  

Women describe feeling intense shame and internalized negative feelings about themselves. Many from the transgender and LBQ groups experienced homophobia and transphobia within their families, community and health-care institutions, and described acts of violence towards them. Participants in the sex worker group described stigma because of their HIV-positive status and involvement in sex work, describing lost friendships and fear of disclosure.  

At this level, women described hiding their HIV-positive status to help manage the fear of discrimination and the negative social attitudes, reducing their ability to receive the proper support and help they need.

At this micro level, the women across all focus groups demonstrated a coping strategy of resilience, optimism and spirituality to help them deal with intrapersonal stress. They spoke of remaining strong, thinking positively (and not blaming themselves), renewing faith, solving problems and continuing to live on with their lives, work and children. 

At the meso level of community and social norms, HIV-positive participants describe social exclusion and ostracism on the basis of having one or more stigmatized identity. Many women describe racism resulting in the exclusion and silencing of the women of colour, and community and social norms that silenced discussion regarding violence against them.

Also, many women reported feeling symbolic stigma (the shaming and ‘othering’ of a marginalized group) as they were framed as having a ‘dirty’ and ‘immoral’ disease. Women from the sex workers group described feelings within the community as being vectors of the disease. Many described feeling a backlash from society that they ‘had brought the disease upon themselves’. Further, across focus groups, many women described a fear, denial and total silence in the community about HIV, silencing discussion regarding violence and discrimination against HIV-positive women.

At the meso level, joining social support groups emerged as an important coping resource for HIV-positive women, allowing them to deal with intrapersonal stress and combat feelings of isolation. Women described social groups as being an outlet; a place where they didn’t feel alone, could share their experiences with others who could relate and help each other.

On a macro, organizational and political level, HIV-positive women experienced discrimination and reduced access to care in social services and health care, and stigma within legal systems. The women described that health-care workers treated them differently and that governments are deterred from taking fast, effective action against the HIV epidemic. Many described feeling frustrated with the health care treatment they were receiving, reporting that even health care workers’ attitudes changed once they found out about their HIV-positive status.

Many highlighted discriminatory and inequitable treatment based on their skin colour and sexual orientation or lifestyle, while others reported of sexism and gender discrimination in employment systems. Women across the focus groups reported that racism resulted in a lack of research for women of colour and invisibility and exclusion from HIV services.

At the macro level, challenging stigma through engagement in fighting for equal rights was described as important for HIV-positive women’s coping and empowerment. Women described standing up against the stigmatization and discrimination, because they have rights just like anyone else. They explain wanting to be a part of the education and help with research because they have lived experience and can identify with other people living with HIV. 

The study explains that a critical component of challenging stigma may be education, as many women described that a lack of education resulted in people not fully understanding what people living with HIV are going through.

The findings of the study indicate that marginalized HIV-positive women living in Ontario experience overlapping forms of stigma and discrimination, and that the stigma and discrimination operate over micro, meso and macro levels. The coping strategies adopted by the women also operate over these levels.  

The researchers suggest that addressing the complex, multi-level stigma experienced by women with HIV will require a complex and multi-level approach. Interventions should work on the micro, meso and macro levels, and might range from counselling, to awareness campaigns, to improved care for people living with HIV, to antidiscrimination training and campaigns that address various forms of stigmas. It’s also important to recognize and address the ways that different types of stigma interact with each other – such as HIV stigma and homophobia and racism. They explain that there is a need for culture, race/ethnicity, sexual orientation and gender to be better integrated into health care and HIV support services.

The study appears in the Nov. 22 issue of PLoS Medicine, and is available at http://www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001124.

Jump to top page
  • A publication of:
  • Women's College Hospital