The psychology of “cure” - unique challenges to consent processes in HIV cure research in South Africa

• DOI: 10.1186/s12910-019-0348-z
• Publication Date: 2019-01-24T13:03:23Z
• Authors: Keymanthri Moodley; Ciara Staunton; Theresa Rossouw; Malcolm de Roubaix; Zoe Duby; Donald Skinner
• Keywords: Thematic Analysis; Philosophy of medicine; Research Ethics

Consent processes for clinical trials involving HIV prevention research have generated considerable debate globally over the past three decades. cure/eradication is scientifically more complex and consequently, consent in this field are likely to pose a significant challenge. Given that efforts now moving toward eradication, stakeholder engagement inform appropriate ethics oversight of such timely. This study sought establish perspectives wide range stakeholders treatment cure research. In total, 68 South African participated two qualitative modalities. In-depth interviews (IDIs) were conducted with purposive sample 42 individuals - audiotaped consent. Twenty-six focus group discussions (FGDs). Thematic analysis transcribed IDIs FGDs was conducted. The majority respondents indicated there could be unique challenges requiring special attention. particular, given complexity science, translation concepts into lay language would critical potential participants adequately appreciate risks benefits early phase experimental interventions. Furthermore, aid understanding against background desperation cure, specially trained facilitators required assist psychological assessment prior avoid curative misconceptions. Long-term participant assess durability mean process prolonged, necessitating annual re-consent. Building trust maintain long-term relationships retain participants. Unique requirements Africa include maximise trial procedures, need follow-up. However, dimension must not underestimated. Beyond an emotional impact advances discourse from healing. Consequently, enhanced support counselling. has several important implications review