Abstract
BACKGROUND: There have been impressive advancements made in preventing and treating HIV. However, the impacts have not been experienced equally across demographics in England. African born persons, in particular women of Black African ethnicity, continue to be disproportionately affected by HIV. HIV prevention campaigns have often overlooked social, cultural, and structural factors that shape access to HIV prevention. OBJECTIVES: This paper explores how women of African and Caribbean heritage understand HIV within their social networks, and how they perceive HIV and sexual health services. This insight is needed to develop more inclusive and effective approaches to HIV prevention. DESIGN: This study adopted a participatory action research framework, acknowledging lived experience as a basis of knowledge. METHODS: Focus groups and one-to-one interviews were used to collect qualitative data from a local community women's group between June 2021 and November 2021. In total, 23 women of African and Caribbean heritage participated in this study. Four women opted to take part in a one-to-one interview, and 19 women participated in one of five focus groups. Data were analysed using an applied thematic analysis. RESULTS: Three key themes emerged from the data. Enduring fear of HIV rooted in past lived experiences: Fear of HIV derives from traumatic lived experiences, which have shaped trust in health care services in England and limited the acceptance of information about HIV treatment, such as U=U (Undetectable = Untransmittable). Responsibility for HIV transmission and prevention: There was a low perception of HIV acquisition risk, shaped by personal circumstances and stigmatising beliefs. For those acknowledging they may be at risk of HIV acquisition attributed this to the behaviour of their male partners. Motivation to change attitudes and reduce stigma: Participating in this study provided a safe space for women to share their experiences of HIV, ask questions, and learn new information, revealing focus groups as an effective method of raising awareness and reducing stigma. CONCLUSIONS: Multiple factors shape the understanding of HIV and uptake of HIV prevention among women of African and Caribbean heritage. Local, community-specific, and participatory HIV prevention interventions are needed to understand and respond to these factors.