Barriers to effective foot care: A mixed-methods assessment among persons with leprosy-related foot disabilities living in a leprosy colony in Bankura, West Bengal

Introduction

Leprosy remains a major public health concern despite significant advances in global healthcare. In 2023, 184 countries reported 1,82,815 new cases, including 9,729 cases with Grade 2 disabilities, predominantly affecting WHO's African and Southeast Asian regions.¹ Among the various complications of leprosy, plantar ulceration represents a formidable challenge in patient care, persisting as a major cause of disability despite the global decline in disease prevalence.^2,3

Foot ulcers primarily result from neuropathy; the contributory factors include sensory loss over the plantar surface, resultant high-pressure mediated tissue necrosis combined with mechanical injury, thermal injury, and infection.⁴ Management of these ulcers poses a significant clinical challenge as they frequently manifest years after successful completion of multidrug therapy (MDT), moreover, they are resistant to conventional wound management strategies. This necessitates innovative approaches for the prevention of such complications.

Self-care practices have emerged as a cornerstone intervention in preventing the progression of foot ulcers and disabilities among individuals affected by leprosy.^5,6 These practices represent a fundamental aspect of disability prevention and management as primary prevention, particularly in resource-limited settings where access to specialised healthcare services may be constrained. Systematic daily foot examination protocols have demonstrated significant efficacy in identifying potential complications before they progress to severe disabilities. The core components of effective self-care practices include daily soaking and scraping of feet, meticulous wound care, and the maintenance of proper foot hygiene. These interventions are fundamental in preventing the development of calluses, fissures, and ulcers, which can lead to more severe complications if left unmanaged. Additionally, the incorporation of protective microcellular rubber (MCR) footwear and regular exercise regimens has shown promising results in maintaining joint mobility and preventing deformities such as foot drop and contractures.^6–8

From a public health perspective, self-care practices can significantly reduce the burden on healthcare systems.^9,10 The leprosy colony setting provides a unique opportunity to study the real-world challenges and barriers in implementing self-care practices among patients with established disabilities, which can help to identify the gaps between policy implementation and ground-level realities. Thus, our study aimed to assess the footcare practices and their sociodemographic determinants along with exploring the barriers to their proper implementation.

Methods

Sample size and sampling

Cochran's formula was applied to determine the sample size for the quantitative strand. Considering the standard normal deviate as 1.96 (5% type-I error); the estimated prevalence of Grade 1 and Grade 2 disability of foot among leprosy-affected persons of 98.37% (as per a study conducted in Tamil Nadu, India) and taking relative error in precision as 2.5%, the minimum sample size that needed to be surveyed was 102.¹² A total of 104 participants were surveyed during the study. Convenience sampling was done for the quantitative strand for selection of the study participants instead of probabilistic sampling due to the absence of a comprehensive and up-to-date list (sampling frame) of leprosy-affected persons with foot disabilities in the community, along with logistical constraints and limited resources. House-to-house visit was conducted, and leprosy-affected persons fulfilling eligibility criteria were recruited. If there were two or more eligible participants in a household, one participant was selected through a random lottery method.

For the qualitative strand, study participants with unsatisfactory foot care practices were selected based on their quantitative foot care practice scores, derived from a structured questionnaire. Individuals with the lowest foot care practice scores were purposively chosen to maximise information richness, as those with the poorest adherence were more likely to experience or reflect multiple, complex, and severe barriers (e.g., socio-cultural, structural, and behavioural). This approach also aimed to highlight extreme challenges and capture worst-case scenarios in self-care, thereby ensuring greater conceptual depth in the analysis. The sample size for the qualitative strand was guided by the principle of data saturation, which was achieved by the seventh in-depth interview (IDI) [Figure 1].

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Figure 1:

Procedural flowchart of the study.

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Results

Discussion

This mixed-methods study provides valuable insights into barriers to foot care practices among leprosy-affected individuals with foot disabilities in Bankura, West Bengal. The findings reveal a concerning pattern of inadequate foot care practices, with 84.6% of participants exhibiting unsatisfactory foot care practices despite the critical importance of these practices in preventing further complications. The study found particularly low compliance with daily foot examination (24%), soaking feet in water (26%), performing daily foot and ankle exercises (24%), and MCR footwear usage (51.9%). A study by Lal et al. noted that 53.6% of participants were currently using MCR footwear, closely matching our study finding.⁷ The high prevalence of poor foot care practices highlights a pervasive challenge in leprosy disability management despite the availability of prior established guidelines under the National Leprosy Eradication Programme (NLEP) program.

The qualitative findings revealed three major barrier categories: cognitive, socioeconomic, and product-related. Limited understanding and misconceptions about foot care were reported by our participants. The low perceived severity among Grade 1 disability patients in our study supports Srinivas et al.'s assertion that patient delay was the major reason for the risk of disability among adult leprosy patients.¹⁴ This underscores the need for health education that effectively communicates the risk of progression. Socio-economic constraints, particularly the necessity for begging as a livelihood, represent a significant barrier to foot care implementation. A study by Lima et al. found that respondents had prior information about face, hand, and foot care, but identified economic constraints, time constraints, and lack of interest as significant obstacles.¹⁵ Product-related barriers, particularly the design and quality issues with MCR footwear, are noteworthy findings. The inadequate compliance with MCR footwear use is particularly concerning, as protective footwear has been consistently identified as a crucial component in preventing plantar ulcers in multiple studies.⁸ The gender-inappropriate design reported by female participants corresponds with Govindharaj et al., who reported that female patients expressed their willingness to have footwear without a back strap. Complaints about fit and durability issues also align with previous studies, which significantly impacted usage rates.¹⁶ Lal et al. noted reduced usage of MCR footwear during social events and festivals.⁷ These parallel findings suggest that successful MCR footwear programs must address fit customisation, durability, gender-appropriate design, and adequate distribution frequency to improve adherence and effectiveness.

Another major issue for persons with leprosy-related disabilities is the lifelong need to practice self-care routines. This is difficult to sustain without regular encouragement and support from others. Support groups, family-based interventions, and peer education may offer valuable platforms to address motivation barriers and provide social reinforcement for proper foot care practices. Family support to practise self-care is effective in mitigating leprosy-related disabilities, especially with foot impairments.¹⁷ In communities across regions where leprosy remains prevalent, Self-care support groups, a promising model of patient-centred care, are receiving attention.¹⁸ Self-care support groups comprise individuals affected by leprosy and often their family members who meet regularly with the shared purpose of promoting self-care, prevention of recurrent ulcers, and the worsening of disabilities through shared learning and support. Ebenso et al. found that self-care groups in Nigeria reduced ulcer prevalence and improved patients' sense of control over their health, leading to fewer hospital admissions.¹⁹ This is consistent with findings from other studies. Deepak et al. highlighted that leprosy-affected individuals in Mozambique perceive self-care groups as valuable for preventing disabilities and enhancing social participation.²⁰ Benbow and Tamiru also described positive outcomes of self-care groups in Ethiopia, including improved wound management, personal hygiene, and social confidence among members.²¹ These studies collectively suggest that family and peer support, via self-care groups, can be an effective strategy for addressing the multifaceted needs of leprosy-affected individuals.

The present study provides evidence-based insights into India's NLEP in the context of disability prevention. The gaps identified in foot care practices highlight the need for following targeted interventions within the existing delivery framework.

a) Tailored Behaviour Change Communication (BCC): The current BCC strategy under NLEP primarily focuses on reducing stigma and discrimination associated with leprosy. This approach should now be expanded through tailored BCC strategies to actively promote self-care practices to halt the future progression of disability. Special emphasis should be placed on individuals with Grade 1 disability, who often underestimate their risk of disability progression. In this regard, Information, Education, and Communication (IEC) materials promoting daily self-care practices, such as foot inspection, taking rest if redness or blister present on foot, covering foot with cloth if cuts or wounds present, soaking in water, scraping away hard skin, application of oil, avoiding sitting cross legged, walking or sitting for long hours, exercise, use of MCR footwear, etc., should be re-emphasised and disseminated alongside MDT completion campaigns to reinforce preventive behaviours from the early stages of disability.

b) Peer support: Family members, peers, and self-care support groups can be trained to promote self-care. They can provide sustained motivation, enhance psychosocial support, and improve adherence to self-care practices among leprosy-affected persons.

c) Innovative technology support: Disability prevention and medical rehabilitation (DPMR) services of NLEP include the provision of protective MCR footwear. Still, the current approach lacks a systematic mechanism for user-centred feedback. To improve compliance and user satisfaction, the footwear provision system should be upgraded by integrating Computer-Aided Design and Computer-Aided Manufacturing (CAD/CAM) technologies, allowing for better customisation according to the individual foot shape of persons affected by leprosy. This must be supported by improved supply chains and robust quality management systems to ensure improved fit, comfort, and durability.

d) Integrated standardised assessment tool for self-care compliance monitoring at programmatic level: While the current monitoring indicators under NLEP emphasise case detection, treatment completion, disability rates, and stigma reduction, there is presently no provision for monitoring self-care adherence or disability preventive behaviours. To address this critical gap, standardised assessment tools should be developed to measure self-care compliance. These tools can be integrated into the Nikusth 2.0 digital platform to enable systematic tracking and evaluation of disability preventive behaviours among leprosy-affected persons.

e) Future scope of research: Multi-centric studies can be carried out across different regions to capture the perspectives of various stakeholders, e.g., leprosy-affected persons, their family members, healthcare providers, programme implementers, etc., in mapping out the barriers to foot care practices, in real-world scenarios. This holistic approach would enable the development of culture and custom-specific BCC strategies that are tailored to diverse geographical and socioeconomic contexts within the NLEP of India.

Strengths

The mixed-methods approach of this study is the key strength, allowing for a more comprehensive understanding of the factors influencing foot care practices. The integration of qualitative insights with quantitative data enhances the reliability of the findings.

Limitations

Conducting this study in a single leprosy colony and non-probabilistic sampling method may limit generalisability, and self-reported data may be subject to response bias.

Conclusion

This study uniquely contributes to existing literature by employing mixed methods to comprehensively assess both the prevalence and underlying factors affecting foot care practices. The explanatory sequential design provided deeper insights into the interplay between quantitative findings and the lived experiences of participants. These findings underscore the need for multifaceted interventions that address knowledge gaps through culturally appropriate education, socioeconomic support through sustainable livelihood options, and improved footwear design that considers gender preferences, comfort, and durability. By addressing these multifaceted barriers, leprosy control programs can improve adherence to foot care practices and ultimately reduce the burden of disability among affected individuals. Future research should focus on testing such integrated approaches to improve foot care practices among leprosy-affected individuals, with particular attention to gender responsive interventions and innovative health education methods that address the specific barriers identified in this study.