Lived Experiences of Adults with Rheumatic Heart Disease on Follow-Up at Tikur Anbessa Specialized Hospital: A Descriptive Phenomenological Study.

Abstract

Abstract Background: Rheumatic heart disease (RHD) is a significant public health concern in low- and middle-income countries(LMICs), including Ethiopia,  with increased morbidity and mortality. Benzathine penicillin G (BPG) is recommended as a secondary prophylaxis to prevent RHD disease complications and progression.. What it means to live with RHD while taking BPG prophylaxis has not been well studied. Therefore, this study aimed to explore the lived experiences of RHD patients currently receiving care in Tikur Anbessa Specialized Hospital in Ethiopia. Methods: A descriptive phenomenological study design was employed on purposively selected adult RHD patients receiving BPG prophylactic injections and RHD care.  In-depth interviews were conducted to capture RHD patients' lived experiences. The transcribed interviews were analyzed using Colaizzi’s descriptive phenomenological method. The results of this study were presented using the Consolidated Criteria for Reporting Qualitative Research (COREQ). Results: Five themes and eleven sub-themes were identified. The themes identified in the study were (1) Limited knowledge of  RHD and its treatment, (2) poor quality of life (3) social impact of RHD (4) limited access to RHD care and BPG prophylaxis, and (5) RHD patient experiences of the treatment process. Conclusions and recommendations: Different themes and sub-themes around lived RHD patients’ experiences were identified. Multifactorial interventions such as education, ensuring access to treatment, improving community awareness of BPG prophylaxis, and improving communication between BPG prescribers and RHD patients were recommended. Awareness-enhancing education and training should be given whenever possible to clear misconceptions about BPG prophylaxis injection to RHD patients and their BPG providers. [Ethiop. J. Health Dev. 2025; 39(3)] Keywords: BPG prophylaxis, Rheumatic heart disease, qualitative, phenomenology, Ethiopia