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

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.