This may be perhaps the first study to describe the composition and structure of the social networks of PLHA in Africa and how those features might relate to treatment related variables like time since diagnosis and time on ART. Previous studies have reported only network composition,1–12
not structural or functional characteristics. Using an egocentric, personal network approach, we sought to explore these networks with an emphasis on identifying patterns with regard to makeup of the network members, the extent to which alters are aware of the individual's HIV status, internalized stigma, discrimination and social support received by the individual from those in their network, and the degree of connectedness among network members. In addition, we explored whether these network characteristics are associated with the amount of time that someone has been aware of their HIV status, whether a respondent was on ART, and the duration of ART treatment (the latter of which is a proxy for exposure to the HIV clinic environment and support). Greater understanding of the social network characteristics of PLHA may provide key insights into how HIV clients could be effective agents for positive behavioural change and HIV prevention in their social networks through network-and relationship-based interventions that take advantage of social influence mechanisms.13–20
With regard to composition, network members were on average the same age as the index participant, reflecting the predominance of peers rather than parents or children. Men and women were equally represented in these networks regardless of whether the respondent was a male or a female. Nearly half of the elicited members were described as family or relatives and another quarter were described as friends. This finding runs counter to Latkin et al., who found that while respondents may name at least one family member, family was not the primary component of their social networks.2, 9
They also run counter to el-Bassel at al's findings among HIV+ men and women.5, 6
However, these studies focus largely on drug using HIV+ populations in the United States. Thus, is it unknown whether the differences are because of geographic location (United States v. Africa) or behavioral differences (drug use). The high proportion of family in these networks, we believe, is indicative of the larger average size of extended families in Uganda, but these findings also suggest that family and friends remain the core of the social life of these PLHA, despite changes that may have been caused by the epidemic.30
Ncama and colleagues noted that high proportions of family members are correlated with higher levels of social support, but argue that a more diverse network (such as one that contains family, friends and coworkers as we have found among our sample) may be more effective in the long run.10
The fact that most individuals report gender-balanced networks composed of similarly-aged friends and family (likely brothers, sisters, and cousins given similar age measures) suggests that in this context peer-based interventions will likely reach a range of individuals who share similar patterns of HIV risk behaviors with the advocate. Homophily within these networks also suggests that peer influence mechanisms may encourage behavioral change within these networks.
Other known HIV-infected individuals represented just over 10% of the network members of the study participants, though there may be others whose status is unknown. This suggests that prevention advocates will likely reach an appropriate (though diverse) audience, comprised of those who are HIV positive and may need encouragement to enter care, those who are HIV- and may need information on prevention activities, and those who do not know their status who may need encouragement to be tested. However, the diversity in respondents' networks vis-à-vis HIV status suggests that a range of prevention advocacy activities should be built into any network-based intervention.
While relatively few network members were thought to be HIV+, participants believed that nearly half of their alters (on average) knew the participant's HIV status. We believe this finding indicates a fair amount of active HIV status disclosure to non-HIV+ network members, though we recognize that people may become aware of a person's HIV status without that person directly telling them, such as through indirect disclosure or deduction.31
Having more network members aware of the respondent's HIV status was generally related to having more trusted network alters who provided advice and tangible support. Roughly 70% of the sample found their personal networks to be supportive overall, and an equal proportion found the clinic environment and other clinic patients to be supportive. Furthermore, very few expressed feeling shameful about their HIV disease. In general, these data indicate a supportive social environment surrounding PLHA in Uganda, or at least in urban Kampala.32
This supportive environment suggests that network members, due to their trust of the advocate, may be more likely to listen and adopt new behaviors than they would if those behaviors were suggested by an unknown individual. Trust-based peer influence mechanisms may prove to be powerful vectors for behavioral change within these networks.
However, it is noteworthy that one quarter of the sample reported that at least some of their former network members stopped calling or visiting once they became aware of the respondent's HIV status, and a sizeable minority (30%) described their social network of family and friends, and fellow HIV clients at the clinic, as unsupportive. These latter findings highlight the continued presence of HIV discrimination and its potential as a barrier to disclosure of HIV and prevention advocacy behaviors. This finding underscores the importance of developing specific guidelines for determining the risks associated with disclosing HIV status in the context of network-based prevention advocacy behaviors. Given the same network composition, prevention advocacy may be safe for some and not for others. Interventions should be designed to help educate PLHA on the risks associated with prevention advocacy.
The network structures of study participants can be characterized as well-connected (fairly high density), with few isolated members and a high proportion of interactions among network members. On average, approximately half of the network members interact at least sometimes with each other, and roughly two-thirds of the alters typically make up a single network component, meaning that they are connected to each other either directly or indirectly through relations to other alters. The vast majority of participants had networks with only one or two components, and only 20% of alters were isolates. With the high level of density observed in these networks, and just under half of the network members knowing the respondent's HIV status, it was rare to observe networks in which a person had isolated those who were aware of their HIV status from those who were not aware. While there is little evidence of individuals being rejected by or isolating themselves from those closest to them (based on the density and isolates measures in our study), it is possible that an individual could have been rejected by some of his or her family members (data that were not collected in this study) yet still maintain a high proportion of family members in their network. Because we would be able to see whether family members left or joined the network and would know how frequently a respondent interacted with his or her network members over time, a longitudinal study would shed more light on this phenomenon.
With respect to interventions, few isolates and fairly dense networks suggest that information exchanged through peer advocacy has the opportunity to diffuse through these networks fairly easily and efficiently, and that others will have the opportunity to reinforce that information as it flows to and through them. The presence of behavioral `feedback loops' among connected individuals further strengthens direct peer influence mechanisms.
Analysis of how time since HIV diagnosis and ART status were associated with social network characteristics revealed that both greater time since diagnosis and being on ART were generally associated with an increase in the proportion of network members who were also HIV-positive, greater awareness of the respondent's HIV status among their network members, and greater perceived social support from the network. This finding could be explained by the increased amount of exposure to HIV peers and opportunities to make friendships as a result of being part of and possibly more exposed to the HIV community and associated organizations, support services and prevention messages at the clinic (e.g., posters, dramas or educational videos), and the more frequent clinic visits associated with ART. Contrary to these findings, and contrary to each other, greater time since HIV diagnosis was associated with a greater likelihood of feeling shameful about one's HIV status, while being on ART was associated with a lower likelihood of feeling shameful. We did not capture the date of entry into HIV care, so it is possible that these findings reflect circumstances in which considerable time had passed between testing HIV-positive and entering HIV care. It could also reflect a cohort effect, in which those who have been diagnosed for longer are from a group that feels more HIV-related shame and internal stigma. However, the increased exposure to the HIV clinic environment and support associated with being on ART may help individuals feel less internal stigma related to being HIV positive. These opposing findings also underscore how little is known about how the availability of treatment resources and the visibility of PLWHA in treatment affect stigma (both internal and external) and discrimination, further evidenced by the conflicting results found in Maman et al.33
The network diagrams in , while merely descriptive, when combined with these analyses, suggest that the ART process may reduce stigma associated with HIV status disclosure. That is, perhaps the frequency or periodicity of clinic attendance or the amount of time spent at the clinic each visit or some other care-related variable works in some way to reduce internalized stigma. One possible factor may be that this clinic site, like most HIV clinics in Sub-Saharan Africa, requires that at least someone in the client's network be aware of the client's HIV status and is able to act as a treatment supporter. Also, the improved health associated with ART can motivate and empower clients to reveal their status. In addition, needing to take antiretroviral medication may encourage clients to disclose their status rather than needing to explain the presence of medications.
These findings have implications relative to how PLHA might expect their networks to change as they become more involved in treatment. That is, as treatment progresses, PLHA may find their network composition changing to include more trusted individuals who know the PLHA's status and who provide advice. The PLHA may also find that their networks become more interconnected, with fewer separate components. Further exploration of network structure and content, through an intervention that uses a network diagram to facilitate discussion, might be useful in exploring who might be an appropriate treatment buddy, who it may be appropriate to disclose HIV status to, who might be able to act as a network `coordinator' to facilitate provision of support (e.g., transportation, food, etc.), or who might be a potential source of problems with respect to disclosure or treatment. This approach has been used in other health contexts with positive results.35, 36
These findings also have implications relative to HIV clients' potential for being advocates for HIV prevention in their social networks. In general, respondents report that a considerable proportion of their current network members are aware of their HIV status and are supportive and trustworthy. This suggests that HIV clients are fairly comfortable disclosing their HIV status and thus may also be comfortable discussing HIV and advocating for prevention and protective behaviors (e.g., HIV testing, condom use) with members of their network without the concern of losing social ties. Alternatively, HIV clients may have lost or eliminated network members who are unsupportive or to whom they would feel uncomfortable disclosing their status or discussing HIV prevention and protective behaivors. The mechanisms leading to our respondents' network composition can only be determined with further longitudinal study. The density and interconnectedness of the networks, however, indicate that information and attitudes can rapidly travel through these networks; hence, messages encouraging HIV prevention and testing could be highly effective in promoting behavioral change throughout the network. Higher network interconnectivity, more advice seeking (communication), less need for high levels of trust to disclose HIV status, and less maintenance of a component of individuals ignorant of their HIV status are features that would facilitate discussion of HIV and HIV related behaviors and attitudes. Interconnectivity may also suggest that prevention advocacy behaviors may extend to other network members via `ripple effects'.
Network-based interventions35, 36
may also be effective, though rather than focusing on how PLHA might modify or activate their networks to improve treatment adherence and long-term health outcomes, these interventions might focus on whether the network is one that enables an individual to advocate for prevention safely (perhaps outside the core network elicited in our study but with the support of the core) and which individuals in the core might be effective targets for prevention messages or useful partners for prevention advocacy behaviors in the larger social context. That the most popular network member (the alter most connected to other alters in terms of frequency of contact) is connected to nearly half of all network members should not be overlooked. The extent to which this alter could be encouraged to further promote prevention or serve as a role model for prevention behaviours could have significant impact on improving the perceived norms in the network regarding the use of condoms and HIV testing. Research by Kelly et al.37
involving popular opinion leaders as agents for prevention in other parts of the world have demonstrated the effectiveness of this strategy in promoting HIV prevention. The persistence of discrimination in some circumstances, does, however, argue for the importance of training to help PLHA determine when and with whom it is appropriate to advocate for risk reduction behaviors.
Beyond the implications for encouraging all PLHA to advocate for HIV prevention behaviors, findings may, ultimately, indicate that ART patients are more probable prevention advocates than non-ART patients. Our findings suggest that those on ART may have more heterogeneous networks, which means they may have access to a wider variety of individuals for prevention advocacy. Further, because they are on ART, they are likely to have been exposed to or have experienced all the possible changes in social network composition, structure, stigma and social support that might occur. Thus, they are better prepared to speak to the kind of experiences PLHA may have to withstand in the course of the disease. Finally, those on ART have likely already achieved some level of network equilibrium, with drastic changes in their own networks less likely as they increase their prevention advocacy behaviors.
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; thus, sample size is small, limiting generalizability. We are not able to generalize to all PLHA in Uganda and the region because those attending clinics (who comprise our convenience sample) are likely to be less stigmatized and more comfortable disclosing their HIV status and may have greater social support since they must have a treatment supporter to be eligible for ART. 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 non-family network members such as co-workers. The cross-sectional nature of the study limits the ability to capture the effects of the duration of ART and HIV care on social network dynamics; longitudinal prospective studies are needed to assess the impact of time, HIV care and ART on the composition and structure of social networks more fully.
In summary, we have learned that for this group of PLHA, network members know their HIV status, are trusted, provide advice and support, and are well-connected to each other. Network features (e.g., proportion of individuals who know the PLHA's status) are related to being on ART and time on ART. These findings suggest that PLHA surround themselves with a social context that enables PLHA to feel fairly protected and supported if they choose to discuss HIV and prevention. With respect to treatment, those on ART may be better prepared to act as prevention advocates. More research is needed, however, to delineate and define the social network characteristics of this population and explore how PLHA can be empowered to act as agents for change for HIV prevention within these networks. Further research should investigate how treatment-related variables such as time since diagnosis, being on ART, and time on ART might directly affect prevention advocacy behaviors in more detail. Longitudinal studies will also allow us to explore the dynamics of PLHA's social networks, providing even more insigt into how the treatment process may affect the social context surrounding PLHA. This paper, however, presents a first step in that direction.