Understanding what retains patients in rheumatic heart disease care: a qualitative study of an integrated control program in northern Uganda

Secondary antibiotic prophylaxis for rheumatic heart disease (RHD), usually delivered as monthly intramuscular benzathine penicillin G, is the only proven strategy to prevent recurrent acute rheumatic fever and delay disease progression. Because prophylaxis requires long-term, uninterrupted delivery, sustained patient engagement and reliable health-system support are essential. We conducted a qualitative study to identify multilevel factors that retain patients in RHD care within an integrated RHD control program in northern Uganda. We conducted three focus group discussions with purposively selected patients, caregivers, community leaders, and healthcare providers, together with 15 in-depth interviews involving patients receiving care and, in two interviews, caregivers (14 interviews analysed) under the Accelerating Delivery of Rheumatic Heart Disease Preventive Services in Uganda (ADUNU) program. Sampling sought variation in sex, age, prophylaxis adherence, and geographic location. Transcripts were analysed using combined inductive and deductive coding informed by the Integrated Behavioral Model (IBM) and the Consolidated Framework for Implementation Research (CFIR). Three independent coders applied thematic content analysis to identify key themes. Retaining patients in RHD care was a dynamic process shaped by interacting determinants across multiple levels. At the individual level, perceived necessity of prophylaxis, emotional responses to diagnosis, and experiences of injection pain influenced motivation. Interpersonal factors, including caregiver support, peer encouragement, and distributed reminder systems, reinforced attendance and shared accountability for care. Relationships with healthcare providers based on trust strengthened confidence in prophylaxis treatment, while stigma and community knowledge gaps undermined RHD care engagement. At the health system level, availability of prophylaxis medicine, stability of the workforce, capacity to provide patient education and continuity of service shaped patients and caregivers’ confidence in decentralized care delivery. Retention in decentralized RHD programs is produced through the interaction of individual perceptions, relational trust, social support networks, and health-system reliability. Strengthening counselling, expanding community-based reminder mechanisms, addressing RHD stigma, and stabilizing and improving workforce capacity may enhance retention and treatment continuity as RHD programs scale in Uganda and similar low-resource settings.