Barriers to effective follow-up treatment for Rheumatic heart disease in jmma, ethiopia: a grounded Theory analysis of the patient experience

Abstract

ACKGROUND: Rheumatic fever and rheumatic heart disease continue to be a major public health concern for many resource-poor countries. Although considered most cost-effective and sustainable for treatment programs to be integrated into existing health systems, such recommendations are difficult to up-scale in rural settings. Additionally, adherence to monthly follow-up treatment remains challenging for rheumatic fever/rheumatic heart disease patients who struggle to meet the costs required to seek treatment. More research is therefore required to enhance our understanding of the barriers patients encounter when seeking care in order to improve access to services and sustain follow-up treatment. The objective of this study was to identify the factors influencing the treatment seeking behavior of rheumatic fever/rheumatic heart disease patients and their caregivers and to develop a conceptual tool to improve health service utilization of rural patients. METHODS: Using the principles of grounded theory, 20 patients with rheumatic fever/rheumatic heart disease and 13 caregivers of pediatric rheumatic fever/rheumatic heart disease patients were interviewed through a process of theoretical sampling. Participants were recruited at the Jimma University Hospital Chronic Illness Follow-up Clinic. RESULTS: Three categories of barriers emerged as fundamental factors influencing patients and caregivers to seek care. Firstly, patient perception of illness and medication played a large role in the rationalization process of care seeking. The second category, quality of care and service delivery, was largely influenced by patient medication side effects, treatment schedule, clinic distance and rapport with health staff. The third category, costs associated with care, involved both the financial burden and opportunity costs of traveling to the clinic. CONCLUSIONS: Disease perception, quality of service and cost associated are major factors affecting rheumatic fever/rheumatic heart disease follow-up at Jimma University Specialized Hospital follow-up clinic. These 3 categories led to the development of a conceptual tool that can be used by health providers and policy-makers to improve the use of health services for critical follow-up care.