'We Should Not Be Quiet but We Should Talk': Qualitative Accounts of Community-Based Communication of HIV Pre-Exposure Prophylaxis

"Existing PrEP programming should embed community leader participation in PrEP programming and engage the trust, knowledge, and potential of community leaders to support PrEP uptake and acceptance."

When tailored to local and cultural specific needs of the population and owned by the community, community-based programmes can support the local health system, decentralise health care, and be sustainable. For HIV prevention, culturally appropriate and context-specific messaging is particularly important due to the social complexities and phenomena that have arisen from HIV and AIDS. Community leaders (CLs) can serve as crucial gatekeepers, change agents, and local capacity builders for HIV prevention, including the implementation of pre-exposure prophylaxis (PrEP). This qualitative study stems from formative research conducted within the Eswatini PrEP demonstration project where data collected with PrEP clients, stakeholders, and health workers highlighted CLs as central to PrEP demand creation, awareness, and promotion.

The researchers employed a case study design and conducted semi-structured in-depth interviews (IDIs) with 25  male and female CLs working within the catchment area of the PrEP demonstration project in the Hhohho region in Eswatini. They purposively selected the CLs to capture diversity in age, gender, and position within the community. CLs from rural and semi-urban areas were identified through the community leader system within their respective chiefdoms.

First, we present the context in which CLs operate, which is a complex space that affects the content and delivery of HIV and PrEP information. In brief, there is a conflict between HIV prevention and religion, culture, and values. Traditions and traditional beliefs passed down by elders are thought to represent "real" Eswatini culture but can be quite conservative. Stigma and misinformation are commonplace, and men and young people are seen as particularly hard to reach. Traditional medicine is a frequently used and trusted HIV prevention and treatment option. The CLs consider HIV a main challenge for the health of Eswatini and can see the need for HIV education, want their communities to be educated and informed about PrEP, and are highly motivated to support the implementation of PrEP. The CLs feel that evidence-based information about HIV and HIV prevention should be regularly shared in the religious space.

In this context, CLs feel they are important communicators of culturally appropriate PrEP messaging. They use their position to provide leverage for unique, effective, and easily accessible messages and platforms to reach the community in a manner that ensures trust, relatability, familiarity, and shared faith. Most of the CLs regularly talk about HIV, including the importance of condom use and the availability of PrEP, with their communities. One-on-one, couple, family, small group, male and female only, community, and church group meetings that take place within the home and at appropriate community locations are the key approaches to reach the community with messages about HIV prevention and PrEP. CLs feel they are trusted and see trust manifesting in the conversations they are able to engage in, and they have a reach that extends beyond formal health services. CLs explained that, as they are part of the community, they hold similar values and talk in a way that replicates the local dialect, use words that hold local significance, and can discuss, name, and debate the medicines that traditional healers provide, for example. CLs are also able to provide personal examples and, as some are HIV positive themselves, can share their story to detail the process and persuade community members to visit the hospital.

CLs also pointed to some other influential people who may be leveraged in PrEP communication in Eswatini:

• Some CLs who also worked in churches explained that community members who attend church service trust their religious leaders and the health information given by them. CLs explained that religious leaders promoting PrEP would increase its acceptance and interest within church congregations. If not promoted by religious leaders, some members might say, "Jesus never used any pills so for me kneeling down and praying is enough. I don't use pills" (29 year-old male).
• CLs said some men prefer visiting traditional healers rather than going to clinics or hospitals because they trust the traditional healers more than health workers. Traditional healers' ability to persuade community members to take herbs instead of medicine was significant and was described as a reason that "our culture will kill us" (39-year-old male). CLs felt that understanding how these traditional healers could be harnessed to share information that was as accepted as their support would be essential for future HIV prevention programmes.

The paper's discussion section outlines some avenues for future work in this area, including, for example:

• CLs spoke of stigmatising messages sent by religious leaders, traditional healers, and also some CLs, which continue to challenge the promotion of PrEP and need to be overcome to increase community acceptance. Much work suggests that addressing stigma requires multidisciplinary approaches that are educational and local. CLs could identify sources where stigma emerges, and react by engaging in one-on-one conversations where stories, experiences, and local narratives can be conveyed, alongside evidence-based information.
• Applying this study's findings by actively involving CLs in PrEP promotion requires investment in training to inform local leaders about PrEP and reinforce existing knowledge about HIV prevention. Training should also involve communication approaches and strategies to harness the positive dimensions of the conflict within the HIV prevention communication space. An example of existing training in this field is the SAVE toolkit, developed by the International Network of Religious Leaders Living with or Personally Affected by HIV and AIDS (INERELA+), which equips religious leaders with evidence-based information on HIV and how to use this information appropriately in a religious setting to create awareness in the community.
• CLs emphasised they would like to see a clear health-sector strategy for their involvement in future PrEP roll-out, even though they felt confident about their general HIV knowledge and about using their communication and community engagement methods and spaces for discussions of HIV and PrEP.
• More knowledge is required regarding the role of other influential local leaders - such as religious leaders and traditional healers - and community members to ensure consistent and non-stigmatising messaging reaches those who want to use PrEP and could benefit most.

In conclusion: "Understanding how to better leverage trust in CLs for information dissemination will be pivotal for the success of future HIV prevention programs."