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

• Published in: Journal of the International AIDS Society 2017, Vol.20 (1), p.21374-n/a
• Main Authors: Pellecchia, Umberto, Baert, Saar, Nundwe, Spencer, Bwanali, Andy, Zamadenga, Bote, Metcalf, Carol A., Bygrave, Helen, Daho, Sarah, Ohler, Liesbet, Chibwandira, Brown, Kanyimbo, Kennedy
• Format: Article
• Language: English
• Subjects: Acquired immune deficiency syndrome; Adult; AIDS; Anti-HIV Agents - therapeutic use; Antiretroviral agents; Antiretroviral drugs; Antiviral agents; ART delivery; Care and treatment; Community Health Services; Control; Counseling; Delivery of Health Care; differentiated care; Discrimination against AIDS virus carriers; Dosage and administration; Drug therapy; Female; Focus Groups; Health care; Health facilities; Health Personnel; HIV; HIV infection; HIV Infections - drug therapy; Human immunodeficiency virus; Humans; Malawi; Male; Management; Medical care; Medical personnel; Patients; Practice; Qualitative Research; Retention; service delivery; Social Stigma; Stigma; Studies; Support groups; Surveillance; task‐shifting; Workers
• ISSN: 1758-2652; 1758-2652
• DOI: 10.7448/IAS.20.1.21374

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.