Stigma has long been recognised as a serious and debilitating feature of the HIV epidemic. There have been various studies of HIV stigma internationally and many attempts to combat it, with mixed success.
At the same time many people working in the area emphasise the haziness of the issue. Both experiences and ideas about what stigma is can vary from one person to the next. Stigma is a concern because it compromises the human rights of PLHIV, affecting their health and wellbeing just as the virus does. Stigma also affects prevention efforts because it makes it less attractive for HIV-negative people to get tested.
In 2011, NAPWHA undertook a project to try and understand stigma in an Australian context. It conducted a survey and a number of interviews with people living with HIV to try and get a better sense of their concerns. The project aimed to: generate an evidence base for combating HIV-related stigma so as to improve health outcomes for PLHIV and support ongoing prevention efforts; build awareness about stigma and social research among PLHIV using a participatory model of research; translate the research findings into practical and useful recommendations for community-based HIV/AIDS organisations, policymakers, government advisory groups and relevant health services; and provide a rigorous measure of HIV stigma that will inform the implementation of the sixth National HIV Strategy and provide evidence for the development of future national strategies.
Twenty-seven interviews were conducted by peer interviewers and 697 people completed the survey. Survey respondents included 662 men, 32 women and three transgender people. Roughly 85% identified as gay men and this is broadly representative of the Australian epidemic. People’s year of diagnosis varied from 1981 to 2011 with the average being 1999. Four-fifths of the sample were on treatment and the average year of commencement was 2002. About one-third said they had noticeable symptoms of HIV. Two-thirds said their quality of life was good or very good and a little over half said they were satisfied or very satisfied with their health.
MOST PLHIV MODERATELY AFFECTED
When measuring stigma we used an internationally respected scale that, once analysed, showed a moderate experience of stigma among respondents. Some examples of the questions we asked in the scale and people’s responses were: 34% agreed with "I feel guilty because I have HIV"; 77% agreed with "Telling someone I have HIV is risky"; 35% disagreed with "I never feel ashamed of having HIV"; 42% agreed with "I work hard to keep my HIV a secret"; 40% agreed with "Most people think that a person with HIV is disgusting"; and 40% agreed with "I have been hurt by how people reacted to learning I have HIV".
We also asked people about their experiences with HIV treatments: 42% agreed with the statement "If I go to an HIV clinic I am concerned that someone might see me"; 47% agreed with "I avoid taking my meds in public"; 42% agreed with "I worry that people might see me collect my meds from the pharmacy"; 64% agreed with "I am concerned that if I have physical changes from HIV meds people will know that I’m HIV+"; and 61% agreed or strongly agreed with "I worry that side-effects can make my status apparent".
When we looked at the characteristics of people who experienced greater amounts of stigma they were more likely to be single, have a lower level of education, report noticeable symptoms of HIV and experience stress , depression or anxiety. People with less experience of stigma were more likely to be resilient, have good self-esteem, be satisfied with their health, have good quality of life and good social support and be more likely to engage in the HIV community.
We also asked respondents to tell us who and where they had disclosed their status.
The highest levels of disclosure tended to be in the more intimate areas of life — sex, family and friends — as well as healthcare settings.
There were lower levels of disclosure in more public arenas of life — work, housing and community.
PROBLEMS WITHIN THE GAY COMMUNITY
When we asked in which arenas of life people had experienced most stigma, by far the most common responses were in relation to sexual partners, community and the media. Given that about 85% of the sample were gay men and said they identified with gay community, this suggests that we still have quite a bit of work to do here. A number of people have noted the irony that more stigma exists in the one place we would hope to find greater understanding and tolerance.
In conclusion, it is important to note that not all PLHIV experience stigma and this is encouraging. It is also worth noting that PLHIV are not immobile in the face of stigma but avoid it in certain ways — especially by managing their identity and carefully choosing the contexts in which they disclose. As we move into the next phase of the project that aims to turn the research into practice, we will be exploring ways to better support the resilience of people with HIV so that stigma has less of an impact.
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