Long-term retention and associated practices among Community Client Led Antiretroviral Distribution groups (CCLADs) in Uganda: A mixed methods study

Abstract

Background: HIV testing and the initiation of antiretroviral therapy (ART) are critical steps in treating people living with HIV (PLHIV), but maintaining PLHIV on treatment over time remains challenging. This study was conducted to assess retention and attrition among PLHIV who were enrolled in community client-led antiretroviral distribution groups (CCLADs) in Uganda. Then, positive deviants were identified and their uncommon practices were explored for promoting long-term retention. Methods: In this explanatory mixed methods study, for quantitative part, longitudinal medical data of PLHIV were collected from 65 health facilities in 12 districts in East Central, Uganda. Survival analysis and Cox regression were used to assess retention and risk factors for attrition. For qualitative part, medical data were used from four districts with high attrition rates. Within the four districts, nine health facilities were identified where retention of PLHIV in CCLADs was high. Then, 50 clients were purposively selected for in-depth individual interviews (n=22) or five focus group discussions (n=28). A thematic analysis was conducted to identify uncommon but successful practices. Joint displays were created integrating quantitative and qualitative results. Results: A total of 3,055 PLHIV in CCLADs were included in the study. Retention rates at 6, 12, 24, 36, and 96 months, were 97.4%, 95.8%, 94.4%, 93.7%, and 88.6%, respectively. Factors for attrition were small CCLAD group sizes (Hazard ratio [HR] 3.84 Confidence Interval [CI], 95% CI 2.08-7.06); receiving older regimens (HR 1.70, 95%CI 1.13-2.56); virologic failure (HR 3.43, 95% CI 12.23-15.26); and duration on treatment [less than five (HR 2.04, 95% CI 1.16-3.59), six to ten years (HR 1.71, 95% CI 1.03-2.83)]. Of the 22 clients interviewed, eight were positive deviants. Positive deviants were PLHIV who stayed in their initial CCLADs the longest while remaining virally suppressed. Positive deviants' practices were as follows: fostering family-like settings, providing financial or self-development advice, and promoting a healthy lifestyle. Conclusions: Retention of PLHIV in CCLADs was high in the initial twelve months, but steadily declined thereafter. Effective interventions such as the positive deviance approach could help identify affordable, culturally acceptable, and local methods that promote long-term retention of PLHIV in CCLADs.