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Access to Sickle Cell Disease Treatment in the Indigenous Tharu Population of Nepal
Journal of Investigative Medicine ; 71(1):35, 2023.
Article in English | EMBASE | ID: covidwho-2319539
ABSTRACT
Purpose of Study Sickle cell disease (SCD) is a hemoglobinopathy that disproportionately affects the indigenous Tharu population of Nepal, a marginalized ethnic group concentrated in the Dang district. There are significant global disparities in the prognosis of SCD;in low-income countries, which lack screening and management infrastructure, up to 80% of those born with SCD are undiagnosed and less than half survive beyond 5 years of age. Since 2015, University of British Columbia medical student teams have collaborated with a local community partner, Creating Possibilities (CP), to improve SCD awareness, screening, diagnosis, and management for the Tharu population in and around Dang. Community members with SCD have previously expressed numerous challenges in obtaining treatment once diagnosed. This study aims to better understand difficulties in accessing SCD care for this community. Methods Used The Access to SCD Care Questionnaire was developed from items in existing scales, deductive and inductive item generation, and feedback from expert local partners to ensure it is culturally appropriate, needs-specific, and easily understandable. The questionnaire includes closed-ended questions using a Likert scale and open-ended interview prompts. It centers around five core themes personal beliefs, community attitudes, finances, transportation, and medical infrastructure. Interviews were conducted in Tharu (local dialect) by CP staff members in January to March 2022. Themes and sub-themes were qualitatively analyzed. Summary of

Results:

Participants aged from 14 to 42 with an equal sex ratio, a total of 12 interviews were conducted before study saturation was reached. All participants reported at least one minor or major problem with access to SCD care in each of the five core themes of the questionnaire. Inadequate healthcare infrastructure was the most frequently reported barrier, with participants reporting lack of local medication accessibility and low supplies at further district hospitals. Additionally, despite government funding for treatment coverage, participants reported difficulties obtaining the necessary legal documents to prove eligibility. The second largest perceived barrier to care was transportation, which was reported to be costly, time-consuming, and not readily available. Regardless of sub-theme, participants reported that system-wide effects from COVID-19 perpetuated these issues. Conclusion(s) Results from the Access to SCD Care Questionnaire demonstrate that availability and accessibility to medications and transportation services are the primary challenges to receiving SCD care in this indigenous community. Therefore, future interventions for this community should focus on these findings. In contrast with previous literature, community stigma and personal beliefs were not often reported as hindering SCD treatment. This may be attributed to successful education campaigns within this specific community or due to participation bias.
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Full text: Available Collection: Databases of international organizations Database: EMBASE Language: English Journal: Journal of Investigative Medicine Year: 2023 Document Type: Article

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Full text: Available Collection: Databases of international organizations Database: EMBASE Language: English Journal: Journal of Investigative Medicine Year: 2023 Document Type: Article