Introduction

Leprosy, also known as Hansen’s disease, has historically been one of the most stigmatised and significant public health issues in Nepal. The national leprosy elimination program has been implemented in Nepal since 1913/14, with ongoing government efforts to support people with leprosy [1]. Though Nepal achieved the milestone of eliminating leprosy as a public health problem in 2010, defined by the World Health Organization (WHO) as a registered prevalence of less than 1 case per 10,000 population. However, challenges such as early case diagnosis, complication management and disability prevention persist [1]. Leprosy causes long-term damage to peripheral nerves, skin, and other organs and develops complications during multi-drug therapy (MDT) treatment, such as leprosy reaction, neuropathic pain, and relapse and may lead to disability if not detected and managed promptly [2]. However, it is essential to note that leprosy is a disease, whereas disability is a potential consequence that may result from untreated or inadequately managed leprosy [2,3].

Leprosy remains a public health concern, especially in 23 globally prioritised countries, including Nepal [4,5]. As per data from 2023, In South Asia, India continues to report more than 10,000 new cases, while other countries (Bangladesh, Nepal and Sri Lanka) each reported 1000–10,000 new cases [5]. Although Nepal is geographically located in South Asia, early references often included it in Southeast Asia’s statistics due to WHO regional classification with Nepal contributing to 2% of the total burden in South Asia [6]. As per WHO reports, globally, new cases decreased by 19.3% between 2013 and 2022. The COVID-19 pandemic reduced the detection of new cases due to restricted health service access and reduced active case finding [5]. For example, new case detection in Nepal dropped markedly in 2020 with the reporting of 2173 new cases but began to rebound in the post-pandemic period, with the country reporting 2,523 new cases in the fiscal year 2022/23 [1].

Rupandehi district has historically been one of the leprosy-endemic districts in Nepal. It still carries a notable leprosy burden, possibly underestimated due to multiple socio-health system factors. Rupandehi district has a registered prevalence of 1.2 per 10,000 population as of 2024. New case detection rates in Rupandehi have often been above the national average and grade 2 disability(G2D) cases still occur, indicating missed or late detections [1].

MDT is the WHO-recommended combination of antibiotics consisting of rifampicin, dapsone, and clofazimine administered over 6–12 months depending on the leprosy categorization to eliminate infection and prevent resistance [7]. The WHO classifies leprosy according to the WHO disability grading system, where grade 0 means no impairment, grade 1 means loss of sensation in the hand, eyes or foot, and grade 2 indicates a higher degree of disability compared to grade 1, G2D indicates visible deformities or damage in eyes, hands, or feet at diagnosis indicating more significant functional impairment and potential for long-term complications [8]. G2D was present in 189 (7.5%) new leprosy cases diagnosed [1]. This reflects the delay in diagnosis and indicates the complications such as nerve involvement, irreversible complications and the occurrence of new disabilities. This not only reflects the clinical burden but also increases stigma and social exclusion. These complications require comprehensive examinations including nerve function assessments and eye-hand-foot scores at the beginning and end of MDT treatment [4].

The healthcare system in Nepal can be categorised into three levels: primary (health posts), secondary (district hospitals), and tertiary (specialised institutions). Leprosy services are decentralised, with health posts serving as the primary point of contact for individuals seeking healthcare in the community. This initial contact serves as the first point for leprosy services such as leprosy diagnosis, MDT initiation, disability grading, complications management, referral and follow-up. The key health care providers responsible for implementing leprosy care and support services in the health post include the health post-in-charge and the leprosy focal person who has either a health assistant or auxiliary health worker background with leprosy training [9]. The level of health care provider’s care and support required may vary depending on the individual’s needs and the stage of the disease [4]. To guide the healthcare providers, Nepal has standard leprosy operational guidelines [10] adopted and aligned with WHO guidelines [11] to facilitate the implementation of care and support of leprosy for disability prevention and management in health facilities such as health posts, hospitals, and referral centres.

Despite these efforts, health posts in Rupandehi district lack essential skin smear tests, and skilled laboratory personnel to perform these tests. Consequently, they rely heavily on referrals. Participants from remote areas of Rupandehi district must travel 1–2 hours to reach Butwal for a skin smear test. Thus, healthcare providers refer patients to Butwal for these tests and to specialised hospitals in Kathmandu for leprosy-related complications, such as lepra reaction and ulcer management, if local health facilities cannot address them. Participants from these remote regions face considerable challenges due to transportation difficulties, often needing to travel 10–12 hours to reach specialised hospitals like Anandaban in Kathmandu for managing leprosy complications, resulting in out-of-pocket expenses, long waiting times and inconvenience for socio-economic disadvantaged populations.

In the socio-cultural context of Nepal, leprosy continues to carry a deep-rooted stigma, fueled by myths and misconceptions, which often end up in discrimination and social exclusion. Individuals may adopt harmful practices such as using inappropriate oils or herbal remedies, excessive soaking of wounds, or delayed wound care [12]. Such practices discourage seeking immediate leprosy care and support from healthcare providers, increasing the risk of complications and disabilities [13–15]. Good self-care practices like routine wound cleaning, protective footwear, and regular self-inspection can significantly lower the risk of ulceration and disability [10,11]. Engaging healthcare providers is crucial to recognise early symptoms, manage any side effects, and motivate individuals to practice good self-care to prevent disabilities and reduce stigma [16].

Implementation fidelity refers to the degree to which an intervention or program is delivered as intended by the program developers. High fidelity ensures that established leprosy recommendations and protocols are properly implemented by healthcare providers, resulting in better patient outcomes. In contrast, low fidelity explains why these underperform while being well-designed. Assessing implementation fidelity allows researchers to better understand how and why an intervention works, as well as the extent to which outcomes might be improved [17].

The relevance of studying implementation fidelity in leprosy care and support in the Rupandehi district lies in understanding how effectively Nepal’s leprosy operational guidelines are implemented at the local level. Although national prevalence may be low, persistent leprosy complications, G2D cases, and stigma in leprosy-endemic districts like Rupandehi indicate gaps in policy and practice, justifying this research. While grey literature briefly discusses implementation fidelity in leprosy care and support [18], peer-reviewed studies systematically exploring fidelity in low-resource settings like Nepal remain scarce. This gap limits the development of evidence-based strategies aimed at enhancing service delivery [18].

This study explores the implementation fidelity of leprosy care and support for disability prevention and management in the leprosy-endemic region of Rupandehi, Nepal, which ultimately bridges the gap between existing leprosy policies and their practical application. Furthermore, this study provides empirical evidence, enabling healthcare providers and policymakers to understand the barriers and facilitators affecting implementation fidelity and suggest tailored interventions to enhance the quality of service delivery. In this study, data were collected once over two months, from 25^th February to 30^th April 2024, with participant enrolment beginning on 25^th February 2024.

Materials and methods

Participant selection

Participants were selected via purposive and selective sampling, ensuring alignment with leprosy service availability and geographical locations. This allowed for a rich and in-depth exploration of the research question until data saturation. The data collection period for the study was from 25^th February to 30^th April 2024, with participant enrolment beginning on 25^th February 2024.

For KIIs, ten health facilities from leprosy pocket areas were selected in consultation with the focal person for neglected tropical disease from the Health Office, Rupandehi. Twelve (12) KIIs were carried out with the healthcare providers, including the health facility in charge or the leprosy focal person, until data saturation. The health facilities selected for KIIs were Devdaha, Basantapur, Semara Bajar, Padsari, Tikuligadh, Bodhabar, Kerwani, Shankarnagar, Parroha and Dudhrakshya. In addition, two health facilities, Kerwani and Semara Bajar and a satellite clinic were observed qualitatively due to their higher caseloads and experience in managing complicated leprosy cases. FGDs were conducted with members of two SHGs, Namuna and Hariyali SHGs identified by the Health Office, Rupandehi. Participants over 18 years of age from the SHGs were contacted through The Leprosy Mission Nepal, Butwal. Fourteen (14) information-rich people with leprosy participants from SHGs were contacted and invited for the FGDs in two phases.

Table 1 summarizes the socio-demographic characteristics of 14 individuals with leprosy, all of them were associated with the SHGs. Nine (9) of the participants were males and 5 of them were female on the contrary. The age range varied from 25 to 60 years. The occupations of the participants varied from agriculture, daily wage, shopkeeper, house manager, auto driver and job holder at a cooperative.

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Table 1. Socio-demographic characteristics of the people with leprosy.

https://doi.org/10.1371/journal.pone.0327465.t001

Table 2 gives an outline of the socio-demographic characteristics of 12 healthcare providers, i.e., health facility in-charge or leprosy focal person from 10 health facilities, all associated with the health facilities of Rupandehi district. Seven (7) of the healthcare providers were males and 5 of them were female on the contrary. The age range varied from 29 to 48 years and professional experience varied from 6 to 25 years.

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Table 2. Socio-demographic characteristics of the Healthcare Providers (HCP).

https://doi.org/10.1371/journal.pone.0327465.t002

Data analysis

The data analysis followed Braun and Clarke’s thematic analysis framework involving systematic steps to ensure the credible interpretation of the findings and their linkages to the research objectives [20]. First, the research team familiarised themselves with the data by reviewing transcripts and observational notes. The data were transcribed verbatim in Nepali and then translated into English. The English-translated versions were used for coding and thematic analysis. The research assistant and principal investigator validated the data after transcription and ensured its accuracy.

Initial codes were generated through line-by-line coding, capturing key elements such as diagnostic tools and healthcare provider skills. These codes were reviewed and grouped into broader subthemes, such as “Accessibility of the service,” which summarised challenges like diagnostic kit availability, referral mechanisms, and human resource gaps. Subthemes were further aggregated to form broader themes and refined to ensure alignment with the data, to support the findings. For instance, participants highlighted delays caused by insufficient diagnostic kits and the financial burden of accessing tertiary care.

To support the analysis, data were coded using qualitative analysis software. We used Deedose software to organize and manage the coded data. Inductive coding allowed for the generation of new codes, as stated in Table 3 and a codebook was developed to ensure consistency among researchers. All types of data (KIIs, FGDs and observation) were analysed using the same thematic analysis with special attention paid to the nature of the data source. A manifest analysis was conducted to analyse the qualitative data and to interpret a comprehensive understanding of facilitators and barriers to the fidelity of leprosy care and support implementation. A preliminary analysis was shared with stakeholders for feedback and data triangulation. These findings were interpreted in the context of national leprosy operational guidelines [10].

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Table 3. Comparison of national leprosy operational guideline and actual implementation of leprosy services.

https://doi.org/10.1371/journal.pone.0327465.t003

Results

This section categorises themes and subthemes as per research objectives. It is further categorized into three major themes and 10 sub-themes.

Discussion

This is the first study to qualitatively explore implementation fidelity in leprosy care and support for disability prevention and management in the Rupandehi district of Nepal. The study’s findings highlight strengths such as sufficient adherence to national leprosy operational guidelines [10], ensuring the prompt initiation of MDT, case diagnosis, complicated cases referral, and regular follow-up. However, poor adherence was observed in managing lepra reactions, ulcer cases, and self-care activities.

The findings of this study highlight the importance of Nepal’s holistic approach to leprosy care and support, particularly through free MDT provision, free treatment, and financial incentives (e.g., a cash-based incentive of 1000 NPR upon completing the MDT treatment), which have improved treatment adherence and reduced stigma. These findings align with a study from Brazil, where a cash transfer programme improved treatment adherence and cure in multibacillary cases [21].

To reach the endemic areas and marginalized populations, the participants of this study have identified the critical role of satellite clinics in screening, diagnosis and managing complications. This important initiative to facilitate leprosy has successfully reduced the financial burden associated with travelling to the tertiary hospital in Kathmandu for routine follow-up for disability prevention and management by providing quality leprosy care provision in the local communities.

Referrals to monthly satellite clinics and tertiary hospitals, such as Anandaban Hospital in Kathmandu, ensured specialized care for complex leprosy cases. The use of referral slips from health facilities with accurate diagnoses and contact details made the referral process simpler to receive specialized care and support. Furthermore, the engagement of FCHVs in the treatment process was found to have assisted in treatment adherence by suspecting and referring the cases, and following up on leprosy cases. These approaches enhance the quality and accessibility of leprosy services.

Healthcare providers engaged in complication management through quarterly VMT/ST, basic pain management, self-care training and timely referral of complicated cases to Anandaban Hospital. This shows a coordinated approach to disability prevention aligning with several similar studies [22,23]. However, local health facilities’ lack of resources and expertise for complication management of lepra reaction and ulcer care remains a major challenge. This inadequacy resonates with findings from other low-resource settings where healthcare providers often face similar constraints [24].

The majority of healthcare providers showed an extensive knowledge of cardinal signs and MDT regimens which demonstrate sufficient adherence to national leprosy operational guidelines [10] aligning with WHO guidelines [11]. This is foundational knowledge for healthcare providers for an accurate diagnosis. On the contrary, findings from relevant studies [25–28] revealed that medical professionals involved in the treatment lacked case management and treatment guidelines awareness. Our findings suggest that readily available and user-friendly treatment guidelines facilitate the primary reason for the healthcare provider’s adherence. The healthcare provider maintained standardized care across several healthcare facilities due to national leprosy operational guidelines clarity. In addition, adherence to MDT regimens for specified durations (6, or 12 months) ensured appropriate and effective treatment. In certain cases, particularly those with persistent complications treatment durations were extended based on clinical judgement. These treatment extensions were implemented following national leprosy operational/WHO guidelines, and healthcare providers’ adherence to treatment extensions helped to improve patient outcomes.

The availability of free MDT at public facilities is crucial in ensuring treatment adherence among developing countries with limited access to health services [14,28]. Similarly, our study findings resonated with the availability of free MDT and their immediate enrolment for improving treatment adherence. Furthermore, follow-up strategies such as regular contact through phone calls, home visits, and involvement of FCHVs and treatment supporters ensured continuous care, compliance and treatment adherence.

The implementation strategy practised in the Rupandehi such as the capacity building of healthcare providers prioritizing the leprosy pocket areas, regular follow-up visits including VMT/ST, pill count, cross verification of MDT strips and involvement of family members as treatment supporters could be replicated in other resource-constrained settings globally to improve healthcare provider adherence to leprosy services. Furthermore, practical approaches like medicine strips requirement during follow-up, pill counts for cross verification and monitoring the treatment progress closely resonate with strategies proposed in a similar study [29].

Skin smear examination is crucial for accurate diagnosis, classification, monitoring of treatment, and disease severity assessment [30,31]. However, our study findings revealed several gaps in accurate diagnosis at the local health post despite having basic lab facilities. The absence of skin smears due to the unavailability of trained lab personnel and diagnostic kits at local health posts has forced people to travel to hospitals in Butwal for skin smear tests leading to financial and logistic burdens on both the people with leprosy and the healthcare system. So, the healthcare providers in this study have expressed their disappointment over the systematic barrier and stressed the dire need for skin smear training for lab personnel of health posts and diagnostic tools to perform skin smear tests locally.

Few studies [27,32–34] have demonstrated the effectiveness of leprosy training to increase existing knowledge. Healthcare providers appreciated the benefits of training programmes as training equipped them with the necessary abilities to manage leprosy. However, as leprosy care advances, there is an urgent need for complication management training, focusing on treating lepra reactions and ulcer care. This reflects a regional need across South Asia in which misdiagnosis and several consultations before diagnosis were major contributors to the delay [35].In contrast, our findings demonstrate healthcare providers handled complications by doing assessments, providing basic ulcer dressing, and imparting self-care skills.

The majority of SHG respondents were satisfied with the timely treatments, comprehensive assessments, counselling, contact tracing and the consistent availability of MDT in health facilities. This finding is consistent with a few studies [4,36] that highlighted timely and comprehensive care in managing leprosy. However, our observation and findings suggest that people with leprosy faced difficulties in treating complications such as ulcers and lepra reactions. The primary reason is due to mobility issues, and also financial burdens. On the other hand, a significant number of participants reported experiencing severe adverse effects, including acute weakness, skin discoloration, nausea, and dizziness, which the healthcare providers inadequately managed. These findings align with a few studies [7,29,36–38] that highlight the need for better management of adverse drug reactions to improve treatment adherence.

In Nepal, MDT duration varies based on case type: 6 months for paucibacillary cases and 12 months for multibacillary cases. However, complications like lepra reactions or ulcers require treatment extensions. Our research findings show that participants expressed frustration with the daily pill burden, significantly when treatment was prolonged, which led to nonadherence. For example, the healthcare provider narratives exemplified the incident of an individual who ‘threw away’ MDT because of the side effects and pill burden. Furthermore, our study findings aligned with studies from India and Brazil in which patients were found to be non-adherent and admitted to forgetting to take their medicines, being careless at times about taking their medicines and patients admitted to stopping the medicines [38,39]. Global studies indicate that treatment extensions can strain patient compliance if not supported by strong assistance measures [37].

Our findings suggest a significant pill burden as a result of the drug regimen may impact adherence and overall quality of life of people with leprosy. Healthcare providers emphasized the necessity of comprehensive counselling and family involvement to mitigate these challenges, aligning with findings from [14], where patient adherence was closely linked to provider fidelity to follow-up protocols. Numerous studies carried out by [13,15,40–42] are consistent with our study findings regarding the pill burden and patient non-adherence to the medicine regimen.

The findings of our study indicate that demographic characteristics, particularly age and remote residence, play a critical role in access to leprosy diagnosis and continuity of treatment. Older adults and people from remote areas experienced delays in leprosy services due to transportation difficulties and a lack of awareness. Similar urban-rural disparities have been confirmed in India and Bangladesh [43,44].

Stigma and discrimination were identified as the key attitudinal barriers that compromise treatment adherence and influence people with leprosy’s willingness to reveal their condition and seek timely care and support. Due to fear of discrimination and social exclusion, many people with leprosy in this study chose to seek anonymous care and support from distant facilities rather than going to nearby health facilities while few people refused treatment due to superstitious beliefs hindering the effectiveness of treatment. These kinds of superstitious beliefs often delay leprosy care and ultimately result in disability. This finding is consistent with a study [45] in which superstitions had a strong impact on health-seeking behaviour in people with leprosy.

Apart from this, high out-of-pocket expenditure, superstitious beliefs and difficulty in travelling, and institutional barriers (such as inadequate resources, lack of skilled human resources and inconsistent drug supply) hindered service delivery. Participants are discouraged from getting essential care due to the high cost of transportation and other associated costs. Our study findings are consistent with these studies [46–48]. The institutional barriers, such as insufficient infrastructure and resources also hindered the leprosy services. Furthermore, privacy concerns in the absence of separate examination rooms also discouraged from seeking treatment. These findings are consistent with a study done by [49]. To address this issue, healthcare providers must be sensitised to enhance their communication skills and responsiveness.

Policy-level improvements are needed to improve the fidelity of leprosy care delivery in health post of Rupandehi district. Prioritized interventions, such as investing in skin smear services at the local health post, are critical to ensuring swift and accurate diagnosis. Integrating complication management into leprosy training is critical for equipping healthcare providers with complication management skills. Furthermore, strengthening physical infrastructure at health posts allows for patient confidentiality and comfort, which are crucial for reducing stigma as well as increasing treatment adherence.

Our study findings identified several facilitators of leprosy services such as adequate human resources, involvement of treatment supporters, effective communications, and the role of external development partners. The involvement of family members in follow-up visits to monitor progress and treatment adherence is another key facilitator to follow MDT regimen, motivation and emotional support for well-being and self-care. Our study findings aligned with study [50], which highlighted the role of psychosocial support in leprosy recovery.

While comparing the health facilities, we found fidelity of implementation varied significantly across the health facilities, highlighting the key gaps in service provision that impact the leprosy services. The majority of health facilities show sufficient fidelity, the main reason is adherence to national leprosy operational/WHO guidelines which led to the delivery of standardized leprosy services. On the other hand, few health facilities show poor fidelity since they follow national leprosy operational/WHO guidelines inadequately and rely heavily on referral services for leprosy management. The inconsistency in service delivery highlights the gaps in training, resource allocation and treatment protocol adherence.

Strengths and limitations of the study

This study only covered the participants from one of the leprosy endemic districts, i.e., Rupandehi district which may not be generalised in some cases, however, the findings provide important policy input for the policymakers. Furthermore, this study focused on healthcare providers from local health facilities who provided the same leprosy care and support services, limiting insights from another setting, such as a hospital, which may offer different resources and strengths in leprosy care and support services.

The researcher initially intended to select an identical number of healthcare providers, i.e., leprosy focal person and health facility in charge of interviews until data saturation. However, challenges such as staff transfer and the new appointment of a leprosy focal person resulted in 12 healthcare providers from 10 health facilities being interviewed.

Conclusion

The role of health care providers is crucial not just for early diagnosis, and complications management but also to provide holistic support beyond existing guidelines, including promoting self-care and addressing the barriers. Healthcare providers have been found to adhere sufficiently to Nepal’s leprosy operational guidelines. Accurate and prompt diagnosis, robust follow-up, and referral centre accessibility are major strengths, but challenges such as unskilled lab personnel in local health facilities, and over-dependence on referral centres remain major concerns. Participants value healthcare providers’ timely care, accurate assessment, counseling and self-care engagement. However, they have major obstacles due to the daily pill burden of MDT, drug side effects and leprosy complications. Furthermore, the leprosy stigma complicates the accessibility and treatment adherence.

The major barriers to leprosy services include referral financial hardship, complication management, drug side effects, and institutional obstacles. However, facilitators include treatment supporter involvement, effective communications, the role of an external development partner, and support from the local government to enhance service accessibility. Addressing these barriers while leveraging facilitators is crucial to achieving the global target of Zero disability set by the global leprosy strategy 2021–2030.

Supporting information

Acknowledgments

We thank the WHO/TDR postgraduate scholarship program/ Universitas Gadjah Mada, Indonesia for providing scholarship. This study would like to acknowledge the study participants, The Leprosy Mission Nepal, and Health Office Rupandehi for their support during the study process. We express our sincere gratitude to Sunil Nepal, Ghanshyam Pandey, Anita Mahotra, Bishnu Dhungana and Sita Ale for their invaluable support during the research process.