A socio-ecological model of the management of leprosy reactions in Indonesia and India using the experiences of affected individuals, family members and healthcare providers

Putri, Annisa Ika; Peters, Ruth M. H.; De Sabbata, Kevin; Mengistu, Brittney S.; Agusni, Regitta I.; Alinda, Medhi Denisa; Darlong, Joydeepa; Listiawan, M. Yulianto; Prakoeswa, Cita R. S.; Walker, Stephen L.; Zweekhorst, Marjolein B. M.

Abstract

Background: Leprosy reactions (LR) are immune-mediated complications of leprosy that may be associated with severe and irreversible nerve damage. Non-medical aspects, such as financing, service provision, and healthcare resources in the management of LR are generally overlooked as studies tend to concentrate on clinical features and treatment. Barriers to accessing care and services are a major cause of suboptimal care for people with leprosy. This study aims to explore the barriers to and facilitators of high-quality care and management of LR in two leprosy-endemic countries with different health care models – Indonesia and India – and identify areas for improvement. Methods: A socio-ecological model was adopted. Data were obtained from 66 interviews with individuals who experienced LR and were seeking care at the two study sites. In addition, immediate family members of individuals with LR and healthcare workers attending to people with leprosy participated in seven focus group discussions (FGDs). Results: This study highlights the significant impact of public health insurance regulations and uptake at the macrosystem level on the provision of healthcare services, clinical decision-making, care expenditure, and the psychological well-being of individuals with LR in Indonesia and India. Lack of specialized health professionals and communication challenges were identified in both study populations. Indonesian participants encounter additional challenges due to a fragmented information system and drug shortages. This study identifies key facilitators in providing high-quality care for LR-affected individuals, including financial assistance, availability of corticosteroid alternatives, timely provision of care, and counselling. It found that the high coverage of public health insurance cards in the Indonesian model has increased access to care among individuals affected by LR, despite the challenges. Conversely, the Indian model of care offers treatment subsidies. The advantage of the Indonesian model is its ability to provide wider access to high-quality care, whereas the Indian model focuses on those in most need. This study emphasizes the importance of addressing these challenges through improved communication strategies, education aimed at the affected individuals, and accessible medical care. Furthermore, variations in care-seeking behaviour and self-care practices were observed in both sites, underscoring the need for culturally sensitive and comprehensive approaches to the management of LR. Conclusion: The study findings demonstrate that the factors identified at the four systemic levels are interrelated and have an impact on the access, acceptability, and management of LR services. Despite its accessibility and wider coverage of public health insurance, the integrated service model in Indonesia faces challenges associated with complex regulations and the availability of medication. India’s care model offers intensive, specialised care but has difficulties in ensuring sufficient health personnel, resources, and public health insurance coverage. These findings highlight the need to address these challenges to ensure timely, effective, and comprehensive care for individuals with LR.

Citation

Putri, A. I., Peters, R. M. H., De Sabbata, K., Mengistu, B. S., Agusni, R. I., Alinda, M. D., …Zweekhorst, M. B. M. (in press). A socio-ecological model of the management of leprosy reactions in Indonesia and India using the experiences of affected individuals, family members and healthcare providers. BMC Health Services Research, 25(1), Article 196. https://doi.org/10.1186/s12913-025-12340-5

• Journal Article Type: Article
• Acceptance Date: Jan 28, 2025
• Online Publication Date: Feb 3, 2025
• Deposit Date: Feb 5, 2025
• Publicly Available Date: Feb 10, 2025
• Journal: BMC Health Services Research
• Publisher: Springer Verlag
• Peer Reviewed: Peer Reviewed
• Volume: 25
• Issue: 1
• Article Number: 196
• DOI: https://doi.org/10.1186/s12913-025-12340-5
• Keywords: Person-centred care, Management of leprosy reactions, India, Universal health coverage, Indonesia, Delivery of healthcare services
• Public URL: https://keele-repository.worktribe.com/output/1072232
• Publisher URL: https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-025-12340-5
• Additional Information: Received: 19 February 2024; Accepted: 28 January 2025; First Online: 3 February 2025; : ; : This study followed the Declaration of Helsinki to ensure respect for all participants and protect their health and rights []. Three ethical review committees approved this study: Dr. Soetomo General Academic Hospital (070/91/301.4.2/Litb/II/2019), the Leprosy Mission Trust India (5/vii/C-37), and the London School of Hygiene and Tropical Medicine (17007). Before data collection, all participants were given a verbal explanation of the nature and purpose of the research. The participants were informed of the protocol and the consent was then obtained. Participants were informed that interview or FGD questions focused on the issues they encountered during the provision of care and may elicit unpleasant memories. Participants were also informed of their right to not answer questions and leave the study at any moment without explanation. Participants signed a consent form, and approval of minors’ responsible adult was sought. Individuals gave verbal consent if they were unable to provide written consent for any reason, such as illiteracy or physical impairments that prevented them from writing, and the researcher noted it in writing before the start of the interview. A witness, such as the research assistant or a family member of the participant, observed this discussion and signed the consent form after ensuring that the participant fully understood their rights and risks. The researcher’s affiliation with the hospital in Indonesia might have influenced the willingness of participants to openly share any negative experiences. Participants might have been concerned that sharing negative feedback could affect their care or work at the hospital. Despite the consent form stating that participation was voluntary and that participants could withdraw at any time without repercussions, they still had the right to decline to answer any questions that made them uncomfortable.; : Not applicable.; : The authors declare no competing interests.