Beliefs about HIV cure: A qualitative study of people living with HIV in Soweto, South Africa

Abstract

Background: Rare cases of HIV cure exist. Clinical trials of HIV cure are also underway. However, little is documented about how potential cures are perceived by African people living with HIV, although they are key stakeholders.

Objectives: We explored knowledge, beliefs, and experiences about HIV cure in Soweto, South Africa.

Method: We conducted qualitative research with five stratified focus groups (N = 49). Consenting adults living with HIV were eligible. Facilitators asked participants about their knowledge of HIV cure, experience of purported cures, and beliefs about cure possibilities. Transcripts from audio recordings were thematically analysed.

Results: Participants had knowledge of the concept of cure as eradication, not remission. Three main themes emerged about possible HIV cures. Firstly, hope and scepticism: people feared unequal access to technologies. Secondly, cultural and conventional approaches: there were beliefs in traditional healers, scepticism towards culturally purported cures (e.g. imbiza herbal tonic), and a desire for medical cures to obviate pill burdens. Thirdly, anticipated socio-behavioural effects: beliefs existed that cures might improve happiness, reduce emotional burdens of disclosure, facilitate HIV-free generations, increase risk behaviours, and reduce health checks, but not change societal attitudes to HIV.

Conclusion: In Soweto, South Africa, people living with HIV hope for medical technologies – such as cure and long-acting treatments – to relieve the biopsychosocial burdens of chronic treatment. Despite treatment knowledge, some people try culturally purported cures for HIV. In HIV cure trials, consent language should avoid ‘cure’ when remission is meant. Care should address pill burden, and counselling should address sex, substances, exercise, and nutrition.