Abstract

Chronic Kidney Disease of unknown origin (CKDu) has appeared across Sri Lanka’s North Central Province (NCP) since the 1990s as an epidemic, unexplained by conventional associated risk factors. During the past few decades, a large number of studies attempted to determine the unknown etiology of CKDu. Despite these investigations, no concrete conclusions were developed, though a number of contradictory hypotheses emerged. The present ethnographic study was carried out in two endemic areas, labelled as “CKDu hotspots”, and illuminates how curing takes place between biomedicine and traditional cultural practices. Our ethnographic study thoroughly scrutinized three decades of lived experience, lay-perceptions and local discourses on CKDu. We used a qualitative study design with a transcendental phenomenological approach and employed a mixture of ethnographic methods. Data collection techniques included participant observation, in-depth interviews, focus group discussions and key informant interviews. Data was analysed by using an interpretive thematic analysis model. Findings revealed that lay people have constructed a popular discourse on CKDu, and we explored their views on the origin, etiology and prevalence of CKDu in their locality over the past few decades. Patients’ narratives revealed that there were currently a number of gaps in service delivery. These were mainly due to distant relationships between healthcare providers and CKDu patients. Lay people in affected communities were marginalized throughout the investigation process to determine the unknown etiology, their involvement marginalized to merely acting as objects for scientific instigation. The affected communities strongly believed that CKDu was a recent phenomenon resulting from the mismanagement of the natural environment due to social and lifestyle changes. These findings highlight local dynamics of healthcare seeking behaviours which demand complementary medicine system, particularly given the number of limitations in the biomedical system. Empirical evidence generated from this study suggests a conceptual shift to an ethno-medical model to address CKDu. Improving cultural competency and communication skills among healthcare providers in public health are crucial in order to apply a “bio-psychosocial perspective” in healthcare delivery system and bridging the gap between hospital and the community.

Highlights

  • Chronic Kidney Disease of unknown origin (CKDu) has appeared across Sri Lanka’sNorth Central Province (NCP) since the 1990s as an epidemic, unexplained by conventional associated risk factors such as hypertension and diabetes (Abeysekera et al 1996; Athuraliya et al 2009; Athuraliya et al 2011; Jayatilake et al 2013; Rajapakse et al 2016; Ranasinghe et al 2019)

  • Patient narratives reveal that the majority of patients in both Medawachchiya and Padaviya Divisional Secretariat (DS) divisions were diagnosed with CKDu during the productive age in their life-span

  • Insights offered from the perspective of “lay” community members suggest the need for a conceptual shift within the ethno-medical model to address CKDu as a community problem

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Summary

Introduction

North Central Province (NCP) since the 1990s as an epidemic, unexplained by conventional associated risk factors such as hypertension and diabetes (Abeysekera et al 1996; Athuraliya et al 2009; Athuraliya et al 2011; Jayatilake et al 2013; Rajapakse et al 2016; Ranasinghe et al 2019). The number of those affected and dying has shown a progressive increase, threatening the existence of entire communities living in these areas. Since Sri Lanka lacks a comprehensive psycho-social support system, the loss of productivity, the costs of care and preventive measures have cumulative impacts on affected communities while pushing many toward a new type of poverty situation

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