“We are part of a family”. Benefits and limitations of community ART groups (CAGs) in Thyolo, Malawi: a qualitative study

Abstract

Introduction: In 2012 Community ART Groups (CAGs), a community-based model of antiretroviral therapy (ART) delivery were piloted in Thyolo District, Malawi as a way to overcome patient barriers to accessing treatment, and to decrease healthcare workers’ workload. CAGs are self-formed groups of patients on ART taking turns to collect ART refills for all group members from the health facility. We conducted a qualitative study to assess the benefits and challenges of CAGs from patients’ and healthcare workers’ (HCWs) perspectives. Methods: Data were collected by means of 15 focus group discussions, 15 individual in-depth interviews, and participant observation in 2 health centres. The 94 study participants included CAG members, ART patients eligible for CAGs who remained in conventional care, former CAG members who returned to conventional care and HCWs responsible for providing HIV care. Patient participants were purposively selected from ART registers, taking into account age and gender. Narratives were audio-recorded, transcribed, and translated from Chichewa to English. Data were analyzed through a thematic analysis. Results: Patients and HCWs spoke favourably about the practical benefits of CAGs. Patient benefits included a reduced frequency of clinic visits, resulting in reduced transportation costs and time savings. HCW benefits included a reduced workload. Additionally peer support was perceived as an added value of the groups allowing not only sharing of the logistical constraints of drugs refills, but also enhanced emotional support. Identified barriers to joining a CAG included a lack of information on CAGs, unwillingness to disclose one’s HIV status, change of residence and conflicts among CAG members. Participants reported that HIV-related stigma persists and CAGs were seen as an effective strategy to reduce exposure to discriminatory labelling by community members. Conclusions: In this setting, patients and HCWs perceived CAGs to be an acceptable model of ART delivery. Despite addressing important practical barriers to accessing ART, and providing peer support, CAGs were not well known by patients and had a limited impact on reducing HIV-related stigma. The CAG model of ART delivery should be considered in similar settings. Further measures need to be devised and implemented to address HIV-related stigma.

Engaging men in HIV programmes: a qualitative study of male engagement in community‐based antiretroviral refill groups in Zimbabwe

“…Similar findings have been reported in studies in rural Uganda and South Africa, among others . Gender dynamics were also an undercurrent in a Malawi study where tension between traditional patriarchal household roles and the expected equality of men and women in a CARG was noted as a challenge . Our study adds to this emerging literature by suggesting a direct link between stigma, masculinity concerns and low male involvement in community‐based DSDM.…”

“…Perceptions of CARG benefits and disadvantages among study participants were consistent with data from Malawi, South Africa and Mozambique . When asked specifically about reasons why men might not participate in CARGs, participants identified fear of HIV‐related stigma, lack of information about CARGs, lack of male‐only groups and few perceived personal benefits of CARG membership.…”

“…When asked specifically about reasons why men might not participate in CARGs, participants identified fear of HIV‐related stigma, lack of information about CARGs, lack of male‐only groups and few perceived personal benefits of CARG membership. Although similar findings have been reported in other studies , we used an explicitly gendered perspective and examined these barriers from men’s viewpoints.…”

“…Lack of information about health services has long been cited as a common barrier to men’s healthcare‐utilization behaviour globally and more recently, to low uptake of community‐based DSDM. In a Malawi study, ART patients not enrolled in CAGs also reported little awareness of the model , whereas in a South African study of adherence clubs, participants were confused about eligibility criteria, enrolment procedures and referral criteria . Better and intensified information and education campaigns, preferably in workplace and entertainment venues, are needed to reach more men and more effectively.…”

“…Studies of male engagement in HIV peer support groups have found that income‐generating activities may cushion men from HIV‐related stigma . A Malawi study found that income‐generating activities, though not part of the formal CARG structure, were spontaneously initiated and highly valued . Linking CARGs to local organizations that offer such support may be more feasible and sustainable than requiring individual HFs and/or MoHCC to play this role.…”