Background: In the age of undetectability and wide usage of ART, the 2015 UK Stigma Index (UKSI2015) indicates that stigma - felt, anticipated, or enacted - remains a persist feature in the lives of almost half of people living with an HIV diagnosis. As a result, the quality of life for people who are living with HIV (PLWHIV) is negatively affected. This research, which is a continuation of the quantitative data formulated by the UKSI2015, aimed to ask why people who are living with HIV experience stigma in this way.
Methods: 35 semi-structured interviews were carried out with a representative sample of PLWHIV. Interviews were conducted either in person, viva skype or over the phone. The researcher who conducted these interviews is HIV+. It is her status that afforded her a common ground with interviewees. The methods employed in the analyses of the data were pre-determined themes and inductive analyses.
Results: This research found that felt, anticipated or enacted stigma is a complex process. It varies over time and is manifested in various situations, ranging from disclosing status to a new partner to discussing diagnosis with healthcare professionals and employees. It also demonstrated that there are differences in how heterosexual women and homosexual men accept and come to terms with their diagnosis. And also, how they experience stigma. Furthermore, it illustrated that people who are HIV+ are often unaware of what it means in terms of transmission when undetectable. Moreover, it demonstrates that of those who were interviewed, 90% experienced anticipated stigma, primarily because of a lack of knowledge within the wider population.
Conclusions: This research demonstrates that PLWHIV are still experiencing stigma, especially anticipated stigma. Furthermore, this research clearly shows that if the general public were aware of what it means to be living with HIV, then those who have HIV would experience less stigma. This research has the possibility to not only influence how voluntary organisations address the needs of those living with HIV, but also to inform national policy. It also proposes that there should be a unifying voice from the medical community when discussing what it means to be undetectable.