Resilience in mobilising and sustaining access to resources for managing HIV: A study of clients on antiretroviral therapy in Central Uganda

Abstract

Since the early 2000s, free antiretroviral therapy (ART) has been scaled up in Uganda and other resource-poor settings. However, socio-economic limitations continue making it difficult for people living with HIV (PLHIV) in Uganda to sustain access to necessary treatment resources. For several people on ART in Uganda, continuous access to resources for managing HIV is a matter of resilience. While several studies have examined the challenges people on ART in resource-poor settings experience in accessing treatment resources, focus on their resilience has been minimal. This study provides insights into resilience among people on ART in a resource-poor setting. Using an ethnographic approach, I examine how people on ART in Central Uganda mobilise and sustain access to necessary treatment resources in a context of scarcity. Study participants were recruited from Naggalama Hospital (private not for profit) and Mukono Health Centre IV (public), both located in Mukono district. The study was implemented sequentially with 50 PLHIV initially selected for in-depth interviews, of which 15 were followed up for six months. This was later complemented with a survey of 395 PLHIV. The resources people on ART consider necessary for managing HIV transcend antiretroviral medicines and the resources commonly identified as critical for their adherence such as food and transport. While sustained access to treatment resources is constrained by a myriad of socio-economic limitations such as poverty and medicine stockouts, people on ART exhibit resilience by proactively mobilising their individual and environmental resources to minimise the impact of the adversities. Resilience is facilitated by a combination of protective factors at individual, household, health facility and community levels. The clients’ good physical health, belief in the life prolonging benefits of HIV medicines and own initiative are important at individual level, while possession of income and physical assets is a key factor at household level. The provision of free HIV services, flexibility of treatment procedures and good client health worker relations are vital at health facility level. Access to social capital and the collectivist norms that facilitate its availability are key protective factors at community level. Clients’ capacity to minimise risk from multiple access barriers was more profoundly enhanced when they had income, physical assets and social capital from diverse networks. Having an income enabled 74.1% to access resources for managing HIV at home, 55.5% at the health facility and 80.1% at community level. Clients’ resilience in mobilising resources for managing HIV is a function of multi-level protective factors. Thus, primarily focusing on improving and sustaining the physical health of PLHIV through provision of free ART is not enough in offering protection from risks posed by the multiple adversities they encounter. Building protective factors at multiple levels is necessary if clients’ resilience in mobilising resources for managing HIV/AIDS is to be enhanced. Interventions to improve clients’ access to income and social capital are particularly critical in facilitating resilience among people on ART in a resource-poor setting.