Towards a new understanding of HIV-related stigma in the era of efficient treatment- A qualitative reconceptualization of existing theory.

AIM

To further develop Earnshaw and Chaudoir's HIV stigma framework by describing the experiences of HIV-related stigma among people living with viral suppression in a context where HIV is well controlled and to investigate how these experiences correspond to the stigma mechanisms of the framework.

DESIGN

Qualitative study using interviews and a framework approach to analysis.

METHODS

People living with virally suppressed HIV in Sweden were recruited through an outpatient clinic and interviewed about their experiences of social aspects of living with HIV. The interviews were audio recorded, transcribed and analysed using a framework approach.

RESULTS

Fifteen participants (eight women and seven men, aged 30-64 years) were interviewed from March to September 2017. They described stigma around HIV as a barrier in many situations. Anticipated and enacted stigma were found to be more complex than is described in the existing literature. Being labelled as a person with HIV was found to be an important and persistent part of the stigma experience. Disclosure was found to be context-related and a result of a process of negotiating and weighing the relevance of disclosing HIV, perceiving HIV as a private matter and feeling a responsibility to disclose one's HIV status to others. An important reason for nondisclosure was to avoid being labelled with HIV, which would then become their most defining feature.

CONCLUSIONS

The HIV stigma framework could benefit from revision for people living with virally suppressed HIV.

IMPLICATIONS

The present findings, which indicate the role of health professionals in relation to disclosure and labelling, may guide nurses and other healthcare personnel in providing counselling and support for people who live with virally suppressed HIV and experience stigma.