“I don’t know when he will be back”: life-changing events challenge the community ART Group model– a qualitative research study, Tete, Mozambique

BACKGROUND: Since 2008 in Mozambique, patients stable on antiretroviral therapy (ART) can join Community ART Groups (CAG), peer groups in which members are involved in adherence support and community ART delivery. More than 10 years after the implementation of the first CAGs, we study how changes in circumstance and daily life events of CAG members have affected the CAG dynamic. METHODS: A qualitative study using individual in-depth interviews (27) and focus group discussions (8) with CAG members and health care providers was carried out in Tete province, rural Mozambique. Purposive sampling was used to select participants. Data were transcribed and translated, and manual thematic analysis carried out to identify codes, which were then categorized in sub-themes and themes. RESULTS: Data were collected from 61 CAG members and 18 health-care providers in 2017. The CAG dynamic was affected by life events and changing circumstances including a loss of geographical proximity or a change in social relationships. Family CAGs facilitated reporting and ART distribution, but conflict between CAG members meant some CAGs ceased to function. In some CAGs, the dynamic changed as pill counts were not carried out, members met less frequently or stopped meeting entirely. Some members did not collect ART at the facility when it was their turn, and others stopped taking ART completely. Health care providers were reported to push people living with HIV to join CAGs, instead of allowing voluntary participation. Some CAGs responded to adherence challenges by strengthening peer support through counselling and observed pill intake. Health-care providers agreed that strengthening CAG rules and membership criteria could help to overcome the identified problems. CONCLUSIONS: Changing life circumstances, changes in relationships and a lack of participation by CAG members altered the CAG dynamic, which sometimes affected adherence. Some CAGs responded to challenges by intensifying peer support, including to those diagnosed with virological failure. To ensure flexible implementation and modification of CAGs to the inevitable changes in life circumstances of its members, feedback mechanisms should be implemented between CAG members and the health-care providers. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12889-021-12087-8.