This is one of the few studies to have explored the relationship between the social networks of PLHAs and their engagement in HIV prevention advocacy. We observed that all participants had discussed HIV and advocated for specific HIV protective behaviours (i.e., HIV testing, condom use, seeking HIV care) with at least one alter, and on average, participants had engaged in these prevention advocacy discussions with 50–70% of the members in their network. These findings imply that prevention advocacy may be a relatively common and natural behaviour of PLHA, particularly those in HIV care.
Our findings indicate that the proportion of alters who know the PLHAs HIV status may be the most influential social network characteristic with regard to the proportion of network members with whom HIV protective behaviours are discussed. This network characteristic was associated with the three advocacy behaviours that relate to HIV in general or HIV prevention—discussion of HIV, abstinence or condom use, and seeking an HIV test. The important role of the social network's knowledge of the PLHAs HIV status highlights the significance of HIV disclosure to HIV prevention advocacy. Our prior analysis of the social network data from this sample revealed that the participants had generally surrounded themselves with alters who they felt were supportive and trustworthy, and who were mostly peers and family members [22
]. In the context of having friends and family who one can trust and rely on, it is not surprising that such individuals are comfortable disclosing their status within their network, and also discussing HIV and protective behaviours. Though not in the context of social network research, the importance of disclosure to prevention efforts is consistent with the findings of other studies [23
Our prior analysis revealed that the networks of our sample were generally dense and had high levels of interconnectedness, suggesting that information and attitudes such as messages encouraging HIV prevention, testing and care could rapidly travel through the network. In the analysis reported here, measures of network structure revealed that greater interconnectedness and less isolation and fragmentation of alters were at least marginally associated with prevention advocacy on the part of the respondent. The combination of these findings reveals the potential for PLHA to make a tremendous impact on HIV prevention in their families and communities.
With regard to the prevention advocacy behaviour of encouraging HIV-positive members to seek HIV care, the correlates of this behaviour were only with regard to the participant's individual characteristics. In particular, being younger or female was associated with discussing HIV care with HIV positive alters, compared to being older or male. A possible explanation for this gender difference is that women may be socialized to act as caregivers more so than men, which may contribute to women being more likely to encourage others in need to seek medical care.
The findings also highlight the role of ART and adherence in HIV prevention advocacy among PLHA. Being on ART and on ART for a longer time were marginally associated with discussing HIV in general and the need to seek HIV medical care, respectively, and ART adherence was significantly associated with discussing HIV with more network members. Perhaps people who are on ART and who adhere to treatment experience greater benefits from HIV care and thus have stronger beliefs in the value of HIV treatment and care. This in turn may motivate them more to discuss HIV and encourage others to seek treatment.
There are several limitations to be considered in interpreting these findings. The study was designed to be exploratory, not to generate population level parameter estimates or to be representative. We are not able to generalize to all PLHA in Uganda and the region because those in HIV care (who comprise all of our convenience sample) may be less stigmatized, more comfortable disclosing their HIV status, and have greater social support since they must have a “treatment supporter” within their social network to be eligible for ART—a common requirement for receipt of ART in much of sub-Saharan Africa. We elicited only 20 alters per respondent, which we expect to be sufficient to establish basic information about the networks of this population, but a larger number of alters may have allowed us to capture a more complete range of the members of these networks, particularly nonfamily network members such as coworkers. Therefore, our data speak more so to prevention advocacy within the relative inner circle of the social networks of PLHA. The cross-sectional nature of the study limits the ability to capture the effects of time on ART and in HIV care on the composition and structure of social networks and engagement in prevention advocacy. And finally, the small sample size limited our statistical power and it is likely that several of the marginal findings would have been significant otherwise.
At a time when new innovative concepts for HIV prevention interventions are needed to make further inroads against the spread of the HIV epidemic, our study data suggest that PLHA have the potential to serve as a key part of the solution, not only in regards to reducing their own risk behaviour, but also as powerful agents for health behaviour change and HIV prevention among their families, friends and community. Social network-based interventions that facilitate and empower PLHA to strengthen their engagement in HIV prevention advocacy behaviours, which are already common and occurring naturally among many PLHA, could allow prevention messages to penetrate entire communities at a faster rate and more effectively than existing interventions that mostly target individuals. Comfort with HIV disclosure appears to play a key role in enabling PLHA to be comfortable engaging in prevention advocacy, indicating the importance of efforts to reduce both internalized HIV stigma and community-based HIV stigma and discrimination. Further research is now needed to build upon this initial preliminary data, to learn more about the benefits as well as potential risks associated with PLHA engaging in HIV prevention advocacy, and to develop and test interventions that enable PLHA to safely and effectively serve as agents for HIV prevention, thereby no longer being viewed as the source of the HIV problem, but the central force behind the solution to the HIV epidemic.