Exploring barriers to healthcare access among individuals with sickle cell disease and their caregivers in the tribal areas of Rajasthan: application of socio-ecological model

Le résumé fourni par la source

Sickle Cell Disease (SCD) is a prevalent genetic disorder in tribal communities of India. Often residing in secluded areas with minimal health facilities, accessing timely and effective care becomes challenging. While prior studies document clinical, epidemiological and interventional aspects of the disease, the understanding of tribal SCD patients’ real-life challenges remains unexplored. Therefore, this study aims to identify the multifaceted barriers that hinder access to healthcare services among individuals diagnosed with SCD and their caregivers in Rajasthan, with particular emphasis on the tribal populations residing in the Udaipur district. This study employed a qualitative, exploratory approach, conducting in-depth interviews (IDIs) with tribal SCD patients and caregivers using semi-structured interview guides from January to June 2025. A total of 30 participants, including patients ( n = 18) and caregivers ( n = 12), were recruited using purposive sampling. Interviews were voice-recorded, transcribed verbatim, translated into English, and analysed thematically using the Socio Ecological Model. NVivo version 15 software was used for data organisation and coding. Barriers to healthcare were shaped by both generic structural factors i.e., poverty, poor infrastructure, and geographic isolation and SCD-specific challenges such as invisible symptoms, stigma, and unpredictable crises. Certain subthemes emerged across the five levels of the socio-ecological model. At the individual level, these were psychosocial distress, limited disease awareness, low health literacy, and delayed care. At the interpersonal level, caregiver burden and financial strain were major constraints. At the community level, faith-based healing practices, stigma, and transport barriers hindered timely access. Organisational barriers included inadequate diagnostic facilities, poor provider communication, limited engagement of frontline workers, and gaps in accountability. At the policy level, complete unawareness of the National Sickle Cell Anaemia Elimination Mission reflected weak program outreach. This study highlights the complex, interconnected barriers tribal communities face in accessing SCD care, which reinforce one another, delaying timely care. Addressing these issues requires a multilevel, community-centred approach, including culturally appropriate health education, strengthened primary healthcare systems, the integration of traditional healers, and improved frontline worker training.

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