Trust, Needles and Community: What Keeps Rheumatic Heart Disease Patients in Care in Northern Uganda

In the district health centers of Kitgum and Oyam in northern Uganda, a quiet medical routine unfolds every month. Patients, many of them children and young adults, line up to receive an injection of benzathine penicillin G, a long-acting antibiotic that is the only proven way to prevent recurrent attacks of acute rheumatic fever and to slow the progression of rheumatic heart disease. The injection is painful, the regimen is unrelenting, and the payoff is invisible: nothing dramatic happens when the treatment works. A new qualitative study published in BMC Public Health has now examined, in unusual depth, why some patients keep returning month after month while others drift away, and its findings offer a blueprint for how decentralized care programs across low-resource settings might hold on to the people they treat.

The research, led by Jafesi Pulle of the Rheumatic Heart Disease Research Collaborative in Uganda and the Uganda Heart Institute, together with colleagues at Makerere University, the University of Washington, the University of Cincinnati and Cincinnati Children’s Hospital Medical Center, was embedded within the ADUNU program, short for Accelerating Delivery of Rheumatic Heart Disease Preventive Services in Uganda. Rather than measuring adherence with pill counts or clinic logs, the team wanted to understand the lived experience of retention: what patients, caregivers, community leaders and healthcare providers themselves believe keeps people engaged with a preventive therapy that must continue for years, often for a decade or more, without interruption.

Methodologically, the study combined three focus group discussions with purposively selected patients, caregivers, community leaders and healthcare providers, alongside fifteen in-depth interviews with patients receiving care and, in two cases, their caregivers, of which fourteen interviews were included in the final analysis. The researchers deliberately sampled for variation in sex, age, adherence to prophylaxis and geographic location, so that the picture emerging from the transcripts would not simply reflect the most accessible or most compliant patients. Three independent coders then applied thematic content analysis, using a hybrid of inductive and deductive coding informed by two established frameworks: the Integrated Behavioral Model, which explains health behavior through intention, perceived norms and self-efficacy, and the Consolidated Framework for Implementation Research, which maps how interventions interact with the health systems that deliver them.

What emerged was not a single barrier or a single motivator but a layered account of retention as a dynamic, multilevel process. At the individual level, the strongest driver was a patient’s perceived necessity of the injections. When people understood that the penicillin was protecting their heart valves from further damage, motivation to attend was robust. But that understanding was fragile. Emotional responses to the diagnosis, particularly fear and uncertainty among newly diagnosed patients, could either galvanize engagement or push people toward denial. And the physical experience of the injection itself mattered enormously: the pain of intramuscular benzathine penicillin, delivered deep into the muscle with a wide-bore needle, was a recurring theme, and how patients were prepared for and supported through that pain shaped whether they came back the following month.

Around the individual sat a web of interpersonal supports that the authors found to be decisive. Caregivers, usually parents or older relatives, did much of the practical work of retention, from remembering appointment dates to arranging transport. Peer encouragement among patients normalized the routine and reduced the sense of being singled out by illness. Perhaps most striking was the role of distributed reminder systems, in which the responsibility for remembering an appointment was spread across family members, neighbors and community health workers rather than resting on the patient alone. In practice, this turned attendance into a shared social obligation, a form of distributed accountability that buffered against the forgetfulness, fatigue and competing demands that erode adherence in any long-term therapy.

Trust in healthcare providers emerged as another central pillar. Patients and caregivers who felt known, respected and well informed by the nurses and clinicians delivering the injections reported far greater confidence in the treatment itself. That confidence mattered because the benefits of secondary prophylaxis are abstract: a child who feels healthy has to trust that a monthly injection is preventing damage she cannot see or feel. Conversely, where communication was thin or staff turnover disrupted continuity, confidence wavered. The study also documented a darker social force: stigma. In communities where knowledge about rheumatic heart disease was limited, patients sometimes concealed their diagnosis or their clinic visits to avoid being labeled, and this concealment directly undermined engagement with care.

At the level of the health system, the researchers identified four features that shaped whether patients believed the decentralized program was worth trusting with their future. The first was the reliable availability of benzathine penicillin itself; stockouts, even occasional ones, sent a signal that the system could not guarantee the continuity on which the entire strategy depends. The second was workforce stability, because patients built relationships with specific providers and lost confidence when those providers disappeared. The third was the capacity of staff to deliver patient education, turning each clinic visit into an opportunity to reinforce why the injections matter. The fourth was continuity of service at decentralized sites close to patients’ homes, which removed the crushing transport costs and lost income associated with traveling to distant referral hospitals.

The significance of these findings extends well beyond northern Uganda. Rheumatic heart disease remains one of the most common forms of heart disease among children and young adults in low- and middle-income countries, and the World Health Assembly has called for global action to reduce deaths from the condition. Secondary prophylaxis is the cornerstone of that response, yet programs worldwide struggle with exactly the problem this study dissects: the therapy only works if it is delivered without interruption, for years, to populations facing poverty, long distances and limited health infrastructure. By showing that retention is produced through the interaction of individual perception, relational trust, social support and system reliability, the study reframes adherence as a property of the whole care ecosystem rather than a personal virtue of the patient.

The authors translate this insight into concrete programmatic recommendations. Strengthening counseling at diagnosis and at every subsequent visit could stabilize patients’ perceived necessity of treatment and soften the emotional shock of a lifelong diagnosis. Expanding community-based reminder mechanisms, building on Uganda’s Village Health Team network, would formalize the distributed reminder systems that patients and caregivers already improvise. Addressing stigma requires community education that demystifies rheumatic heart disease, so that a clinic visit becomes unremarkable rather than something to hide. And stabilizing the workforce, through training, supervision and retention incentives, protects the provider relationships on which patient confidence rests. None of these interventions is technologically novel; their power lies in being aimed at the actual determinants of retention rather than at assumptions about noncompliance.

There are limits worth noting. The study was conducted within a single, well-supported integrated control program, and its participants were drawn from patients already in contact with care, so the perspectives of those who dropped out entirely may be underrepresented. Qualitative findings from Kitgum and Oyam, a region still recovering from decades of conflict, may not transfer unchanged to other settings. Yet the analytical frameworks the team used are designed to support generalization of principles rather than of specific details, and the multilevel structure of the findings, individual, interpersonal and systemic, maps cleanly onto the challenges faced by RHD programs across sub-Saharan Africa and beyond. As Uganda and its neighbors scale up decentralized rheumatic heart disease services, the lesson from this study is clear and quietly radical: the monthly penicillin injection is only the visible tip of a care system, and it is the invisible architecture of trust, family, community and reliable supply that determines whether that needle is there when the patient arrives.

Subject of Research: Patient retention in secondary prophylaxis care for rheumatic heart disease in northern Uganda

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

Article References: Pulle, J., Otim, I. O., Pardo, M., Nakagaayi, D., Sewankambo, N. K., Okello, E., Webel, A. R., Rwebembera, J., Beaton, A., Watkins, D., Danforth, K., & Kayima, J. (2026). Understanding what retains patients in rheumatic heart disease care: a qualitative study of an integrated control program in northern Uganda. BMC Public Health. https://doi.org/10.1186/s12889-026-29741-8

Image Credits: AI Generated

DOI: 10.1186/s12889-026-29741-8

Keywords: rheumatic heart disease, secondary prophylaxis, benzathine penicillin, patient retention, Uganda, ADUNU program, qualitative research, implementation science, health systems, stigma, community health workers, decentralized care