# Patient perspectives and barriers to effective home-based care in lymphatic filariasis: A mixed methods study from Puducherry, India

## TL;DR

This study from India finds that only 46% of lymphatic filariasis patients follow home-based care due to social, economic, and mental health barriers, suggesting the need for broader systemic support.

## Contribution

The study provides new insights into patient perspectives and barriers to home-based care for lymphatic filariasis using mixed methods in India.

## Key findings

- Only 46.4% of participants regularly practiced home-based limb care.
- Key barriers included limited social support (84.7%), perceived disease burden (33.0%), and mental health issues (15%).
- Structural, socioeconomic, and cultural factors significantly influence adherence to care practices.

## Abstract

Morbidity Management and Disability Prevention (MMDP) remain an under-addressed component of lymphatic filariasis elimination. Despite the simplicity of the hygiene-based regimen, adherence to these practices remains low due to multiple barriers, exacerbating chronic suffering. As the primary role remains vested in the patients, this study explores their perspectives and barriers to home-based care to inform strategies to improve outcomes. This study employed a mixed-methods approach using an explanatory sequential design. The quantitative phase involved a cross-sectional survey of 321 adult patients from Puducherry and adjacent areas of Tamil Nadu, utilising a validated questionnaire informed by the Self-Management Assessment Scale (SeMaS) framework. The qualitative phase comprised 12 in-depth interviews (IDIs) and four focus group discussions (FGDs), with participants evenly distributed based on gender and health-seeking behaviours, and the data were analyzed using deductive thematic analysis. Only 46.4% of participants regularly practised home-based limb care. Morbidity management scores were significantly higher among patients with an income (p = 0.005) and regular healthcare visits (p < 0.001), and lower among those with grade 4 lymphedema (p < 0.001). Participants under 60 years (p < 0.001), women (p = 0.015), and those with higher grades of lymphedema (p < 0.001) perceived a higher disease burden. Key barriers pertaining to home-based care were identified in social support (84.7%), perceived disease burden (33.0%), and mental health issues (15%). Qualitative findings highlighted the interactions of socioeconomic, structural, and cultural factors, indicating the key role of structural factors alongside individual-level determinants like locus of control, self-efficacy, and emotional well-being. The findings underscore the need for a multifaceted approach that transcends individual-level interventions to include systemic reforms, such as policy integration, capacity building, and community-driven support mechanisms. Addressing the barriers holistically and tailoring the solutions addressing diverse disadvantaged groups can enhance adherence to morbidity management practices.

Lymphatic filariasis is a neglected tropical disease that causes chronic suffering to the affected due to damage it inflicts on the lymphatic system, often resulting in lymphedema and associated disabilities. Managing lymphedema through home-based care is critical to improving patient outcomes, yet adherence to this simple regimen remains low. Given the global progress towards the elimination of lymphatic filariasis, it is important to improve outcomes for millions already affected. This study explores the barriers patients face in adhering to home-based limb care practices in Puducherry and Tamil Nadu, India. Using a mixed-methods approach, we conducted a survey with 321 patients and followed up with in-depth interviews and focus group discussions. We found that only 46.4% of participants consistently practised home-based care, with adherence significantly influenced by socioeconomic factors, healthcare access, and disease severity. Younger participants, women, and those with advanced lymphedema reported higher disease burdens. Key barriers included limited social support, high perceived disease burden, and mental health challenges. Our qualitative findings revealed that structural, socioeconomic, and cultural factors play critical roles in influencing adherence. The study highlights the need for policy integration, capacity building, and community-driven support mechanisms, alongside individual-level interventions to enhance morbidity management and disability prevention. These insights can guide targeted strategies to improve care for diverse disadvantaged groups affected by LF.