Health Seeking Behavior of Tharu Ethnic Population about Sickle Cell Disease

Abstract

Background: Sickle cell disease (SCD) significantly affects the Tharu ethnic group in the Terai region of Nepal and India, where reliance on traditional healing delays formal medical care. Understanding their health-seeking behaviors, influenced by cultural beliefs and socioeconomic factors, is crucial for developing effective interventions and addressing existing research gaps. Methods: This study employs focus group discussions (FGDs) to explore health-seeking behaviors related to sickle cell disease (SCD) among the Tharu ethnic population in Raptisonari rural municipality, Nepal. We purposively sampled Tharu adults (18+) diagnosed with SCD or caring for someone with it. Four FGDs, each with 12 participants, examined barriers (financial, geographical, sociocultural) and enablers (community support, traditional healers) of healthcare access. Audio recordings were transcribed and thematically analyzed. Ethical approval was secured, and informed consent ensured confidentiality. Findings: The analysis of focus group discussions revealed key themes influencing health-seeking behaviors related to sickle cell disease (SCD) among the Tharu ethnic population, categorized into facilitators and barriers. Facilitators included strong support from family and community, which encouraged individuals to seek medical care, and access to traditional healers who provided culturally accepted treatment and referrals to modern healthcare. The availability of local healthcare services and health education programs also promoted awareness and timely intervention. In contrast, barriers included cultural beliefs that stigmatize SCD as a supernatural punishment, economic constraints such as high treatment costs and lost wages, geographical challenges related to distance from healthcare facilities, lack of awareness about available services, and concerns about the quality of care in local health facilities. Conclusion: Cultural beliefs, economic constraints, and systemic healthcare challenges significantly impact access to care. Targeted interventions must address these unique dynamics to improve healthcare outcomes for individuals affected by SCD.