The study aimed to determine the predictors and outcomes of participating in CARGs among PLHIV. This study found that having a family member in CARG, perceiving privacy in CARGs, perceiving peer support in CARGs and failing to disclose HIV status within 6 months of diagnosis were independent predictors of participation in CARGs. There was a statistically significant difference in STI acquisition and knowledge levels between those participating in CARGs and non-participators. There were no statistically significant differences in viral load suppression, TB acquisition and adherence to ART between those participating in CARGs and non-participators.
Having a family member in a CARG was a significant motivator for participating in CARGs.
Perhaps family members acted as models to their relatives and this was likely the source of the enhanced self-efficacy that subsequently influenced other family members to join the CARG.
This may have also motivated them to overcome disclosure concerns and led to their subsequent participation. Given such a scenario there would be need to explore the modalities of upscaling family based refill groups in areas where the uptake of CARGs is minimal. In this study, a significant proportion of those who were participating heard about CARGs from their family members and friends. This might have also promoted awareness on CARGs. Lack of awareness on where to find CARGs was cited as a major barrier to participation. Apollo et al (2018) in Zimbabwe and Madiba et al (2012) in South Africa also reported lack of awareness as a major barrier to participation in ART groups (9,19).
Perceiving benefits like peer support in CARGs quadrupled the odds of participation. Contrary to this finding, a study by Apollo et al in Zimbabwe revealed that lack of benefits was a barrier
41 to participation in CARGs (9). This statistically significant finding entails the adoption of the Health Belief Model’s construct of perceived benefits. A person would accept the recommended health action if it is perceived as beneficial (33). This result was buoyed by the finding that, clients in CARGs were getting beneficial support from peers which include sharing experiences on disclosure, adherence, cervical cancer screening and prevention of STIs. Social contacts provide emotional, behavioural, practical support, a platform to access information and peer support in managing chronic conditions like HIV (34).
Qualitative findings highlighted that the benefits of CARGs were beyond clinical care as those in CARGs were no longer paying consultation fees and were starting their small income generating projects. This finding was consistent with Holmes et al (2011) who found that peers are a source of a collective voice for advocacy, joint income generating opportunities and easier access to services (34). Continuous education on CARG benefits must be provided to clients to maximize their participation.
Perceived privacy was found to be an important predictor for participation in CARGs. The odds of participation was five times among clients who perceived privacy in CARGs than those who did not. This finding could be explained by the observation that CARGs are composed of few people ranging from 6-15 who know each other, are more likely to understand each other, keep secrets and maintain confidentiality. CARG members can only visit the clinic once a year for their routine check-ups. A fifth of study participants cited lack of confidentiality at the health facility since OI/ART services were being provided at an open space which could have forced them to join CARGs. A previous study by Olga et al, (2011) found contrary results where a third of clients had concerns about their privacy in a support group (21).
42 Fear of stigma was observed as a hindrance to participation in CARGs as evidenced by reduced odds [0.24] of participation in CARG by those who feared stigma relative to those who were not afraid. This was contrary to Olga et al, (2011) in South Africa who found that stigma was not a barrier to participation in support groups (21). Qualitative data highlighted that clients did not want to participate in CARGs because disclosure of their status to everyone in the group was inevitable. Disclosure of status can make some people unease since one will be afraid of the utility of such sensitive information after disclosure. This observation was buttressed by the fact that those who did not disclose within six months were 57 % less likely to participate in CARGs as compared to those who would have disclosed. Similar findings were reported by Madiba et al (2012) in South Africa (19). Another study by Madiba et al, (2013) in South Africa found no association between disclosure and participation in support groups despite clients citing lack of privacy and not wanting people to know their status as barriers (16). It has been observed that fear of stigma usually inhibits disclosure, yet disclosure is the basic foundation or ingredient in group formation. Therefore it is important to ensure that clients are encouraged to overcome their fears of disclosure to enable them to join and enjoy the benefits of being in CARGs.
The study found that fear of inadequate monitoring of those in CARGs by health workers was an independent predictor of participation in CARGs. Clients who feared inadequate monitoring by health workers were 72% less likely to participate in CARGs. Qualitative findings also supported this where clients were advocating that they should be seen by a health worker per every ART refill visit so that they know if the medicines are working. This is despite an emphasis on the promotion of community based HIV management strategies and the need for viral load monitoring of HIV clients which is recommended once a year (6,8). There is emphasis that since the majority of HIV positive clients are stable they can only be seen during
43 their viral load visit or whenever they are sick. A qualitative study done in Zimbabwe had consistent findings were lack of direct patient monitoring was noted to be a major barrier to participation in CARGs (9).
Clients who were employed were more likely to participate in CARGs. Although this association was weak and not significant, it could be explained by the fact that the majority of those who were participating had attained at least secondary education hence more likely to have been employed. The majority of clients revealed that it was now easier for them to get their medicines since they were no longer required to come to the facility per every resupply.
This was contrary to other studies were employed clients mentioned lack of time to attend meetings as a barrier (14,19). PLHIV who were more than 40 years of age were more likely to participate in CARGs. People who are more than 40 years of age are mature and are more likely to overcome stigma issues. These same findings were also reported in Swaziland, Mozambique, and South Africa (13,14,16).
Males were less likely to participate in CARGs than females on bivariate analysis. The association between gender and participation in CARGs was weak but plausible. During FGDs participants pointed out that men did not want to participate in CARGs and if they do they do not attend the monthly meetings. The majority of men in CARGs were reported to be sending their wives to collect their medicines from the group leaders. This finding could be attributed to poor health seeking behaviours of men which has been noted in several public health programs. The non-attendance by men is worrisome since CARG members discuss and offer peer support during CARG meetings. Clients also assess each other in terms of physical health and adherence during these meetings. Men cited that they were too shy to be in the same group
44 with women hence they could prefer the family group model or men only groups. Several studies in Zimbabwe, Swaziland, and Mozambique also reported the same (12–14).
Knowledge levels were significantly high among clients who participated in CARGs. This might be due to the widespread exposure to CARG information. Clients who are knowledgeable about CARGs are more likely to get involved and participate in CARGs because of their understanding of the benefits. In this study, three-quarters of cases reported having received education on CARGs as compared to only a third of the controls. Acceptability of public health programs depends on high knowledge levels of the target population. Therefore exposing clients to adequate information on the importance and benefits of CARGs might improve their participation.
The study also looked at differences in behavioural and treatment outcomes of participation in CARGs. The major finding was that those who were participating in CARGs were less likely to acquire STIs. The majority of the CARG leaders were village health workers (VHW) who usually have condoms to distribute in the community. Hence those in CARGs had higher chances of getting these condoms and engage in protected sexual intercourse thereby reducing their likelihood of acquiring STIs. CARG participants mentioned that they discuss several healthy lifestyles which include the prevention of STIs and the correct use of condoms which could have reduced their risk. Although not significant, this study found out that single clients were more likely to participate in CARGs than couples on bivariate analysis. There is a possibility that singles were engaging in protected sexual intercourse or were not engaging at all. Clients who participate in CARGs activities were more likely to adopt positive sexual behaviours than those who do not. Tumwikirize et al, (2016) also found the same results were PLHIV who participated in support groups were more likely to live less risky sexual lives (29).
45 This study found no difference in adherence to ART between participators and non- participators. This finding could be due to continuous education given to the non-participators at the health facility during their refill visits and peer education among participators. The majority of study participants revealed that they were receiving adherence education during their visits. CARGs can promote peer support which enhances adherence and can result in relief and relaxation.
This study also found no difference between participators and non-participators in terms of viral load suppression and the acquisition of TB. Those participating in CARGs were above the 90% country target for viral load suppression (3) as compared to the non-participators. This could be attributed to high adherence in CARG participators as compared to non-participators.
In this study, a viral load suppression rate of 93% among CARG members was higher than the 87% which Okoboi et al, (2015) found in Uganda (28). A meta-analysis comparing community versus health facility-based interventions in LMICs also found no differences in ART adherence, viral load suppression, and all-cause mortality (27).