Anoop C. Choolayil

Public health research often relies on top-down approaches that do not adequately address local needs or engage end-users as active participants. This article narrates the implementation of a bottom-up health research approach at the Model Rural Health Research Unit (MRHRU) in Puducherry, India, aimed at prioritising community participation in health research. The model leverages a participatory approach to integrate local stakeholders into the research process. The study outlines a structured, democratic process for stakeholder engagement, beginning with the identification and network-building of stakeholders and progressing through collaborative brainstorming, priority setting and project development. By aligning research initiatives with these ‘felt needs’, the MRHRU facilitates relevant and impactful health interventions. This approach, while grounded in the local context, provides a model for setting health priorities based on community perceptions, adaptable to other regions and settings, underscoring the benefits of participatory health research in eliminating health disparities and achieving health equity.

Individuals from marginalised backgrounds are often “placed” in spatial planes marked by disadvantages and poor resource availability, impacting their health outcomes. This study explored the role of spatiality in shaping health outcomes, with scrub typhus–a neglected tropical disease (NTD) of zoonotic origin–as an illustrative case. Employing a spatial justice framework, the study investigated the intersection of geospatial and socio-spatial factors influencing health and illness experience in Puducherry, India. An interdisciplinary mixed-methods approach was employed, involving geospatial hotspot mapping of 256 individuals who were diagnosed with scrub typhus over a period of 12 months, vector studies in the hotspots and a go-along ethnography with participants selected from the hotspots. Quantitative findings revealed a higher incidence during cooler months and post-rainfall among households proximate to vegetation and agricultural land, and the vector studies confirmed the presence of mite vectors in these areas, reinforcing the geospatial links to vulnerability. Qualitative findings highlighted how socio-spatial factors like housing conditions, decaying infrastructure, systemic neglect, poor patient education, and mobility create disproportionate vulnerability to the marginalised. The study underscores the importance of addressing the spatiality of health in its geo-spatial and socio-spatial dimensions to reduce the disease burden and the need for spatially informed public health interventions to address NTDs.

From a spatial justice perspective, this article argues that the spatial plane is ‘constructed’ and that socio-spatial configurations can create and intensify health inequities for vulnerable sections. Employing a mixed methods design, the study inquired about the impact of socio- spatial elements on Vector-Borne Diseases (VBDs) in Puducherry, India. The quantitative phase involved geospatial mapping and household surveys of 650 random individuals from Puducherry who had recovered from dengue, chikungunya or scrub typhus over one year, followed by qualitative in-depth interviews of 30 individuals selected purposively from the first phase participants. The findings show how people are ‘placed’ in spatial planes that are constantly being ‘constructed’ by social forces, leading to an inevitable ‘entanglement’ with vectors. While certain sections possess the resources to ‘modify’ or ‘nullify’ these disadvantages, the disadvantaged continue to live in this entanglement. The complex interaction of geographical and social components in the case of VBDs necessitates debates on health equity from a spatial justice perspective. In fact, it can be argued that spatial justice serves as the foundation for health equity, on which other interventions can be built in communities endemic to VBDs.

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 (LF) is a neglected tropical disease affecting communities in tropical and subtropical regions marked by poor socio-economic conditions. Regular hospital-based follow-up and home-based Morbidity Management and Disability Prevention (MMDP) are below par among LF patients due to reasons ranging from travelling costs to stigma. Telehealth interventions are suggested as a promising adjunct tool in such scenarios, integrating medical expertise and accessibility, but rarely used for LF. This article reflects on the insights from an LF clinic on the potential of telehealth interventions in enabling patients to access medical care and improving their home-based MMDP. Despite challenges like poor digital literacy and access to technology, the telehealth service facilitated remote consultations and dissemination of educational materials, allowing clinicians to monitor patient conditions and provide necessary medical guidance. The approach has shown substantial potential in improving lymphedema care, particularly in resource-limited settings, by offering a feasible solution to the barriers faced by traditional healthcare delivery. The pilot program underscores the importance of continued research and adaptation to optimize telehealth interventions for chronic disease management, ensuring comprehensive and accessible care for underserved populations.

The caste system and resulting social exclusion are important social determinants of health inequity in India. This article critically analyzes the influence of the caste system on health inequity in India, starting with a historical perspective and moving to the current status. The article argues that the caste system has deprived Dalits and tribal people in India of achieving health equity. The programs to promote health are often disease-specific and not culturally informed, leading to poor attention at the policy level to the intersecting disadvantages that make Dalits and tribal communities vulnerable, resulting in poor health. The authors suggest strengthening and promoting primary care, improving health access for Dalit and tribal populations, and the need for pivotal changes in the medical education system, shifting the emphasis from specialized care to training family physicians to be oriented toward community health needs, keeping health equity in perspective.