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August 9, 2026BMC Public HealthOpen Access

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

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Authors

JSJyoti SinghIndian Institute of Public Health GandhinagarPGParul GaztaNational Institute for Implementation Research on Non-Communicable DiseasesJGJanesh Kumar GautamNational Institute of Occupational Health

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Implication

Qualitative study identifies complex barriers to healthcare access for sickle cell disease in tribal communities, suggesting urgent intervention measures.

Key Points

  • This study aims to uncover the barriers faced by individuals with sickle cell disease and their caregivers in accessing healthcare services in tribal areas of Rajasthan.
  • Qualitative, exploratory approach using in-depth interviews with 30 participants (18 patients and 12 caregivers)
  • Participants selected through purposive sampling from January to June 2025
  • Data analyzed thematically using the socio-ecological model and NVivo version 15 for coding.
  • Identified barriers include structural factors like poverty and geographic isolation, and SCD-specific challenges such as stigma and invisible symptoms.
  • Emerging themes included psychosocial distress and caregiver burden at individual and interpersonal levels, respectively.
  • Organizational and policy-level issues included inadequate diagnostic facilities and lack of awareness of national health initiatives.

Cite This Study

Singh et al. (2026) studied this question.

synapsesocial.com/papers/6a782d7b2e1896536c84098dhttps://doi.org/10.1186/s12889-026-28301-4
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Also Consider

Synapse has enriched 5 closely related papers on similar clinical questions. Consider them for comparative context:

  1. 1A mixed-methods evaluation to optimize the existing hospital based sickle cell disease care model from a tribal area of Gujarat, India2026
  2. 2Beyond the Diagnosis: Lived Experiences of People with Sickle Cell Disease in South India2026
  3. 3Advancing sickle cell disease care in India from prevention to management: Challenges and way forward2026
  4. 4Public Health Awareness of Sickle Cell Anemia: A Qualitative Descriptive Study among Educated Young Adults in India2026
  5. 5Impact of genetic counselling on awareness and mental health in sickle cell families2025