ArticleWellcome open research2025
Equipping Persons with Sickle Cell Disease, Transforming Care: A Protocol Paper on Feasibility and Acceptability of Self-Management Package in the Tribal Communities of Southern India.
Article in Wellcome open research, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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5 authors.
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Abstract
Introduction: Sickle cell disease affects tribal communities unequally. Self-management empowers the patient to take corrective actions, improve decision-making, and deepen understanding of the disease. Considering the unique challenges of the tribal community, implementing self-management complementary to the prescribed clinical management for sickle cell disease care can lead to greater autonomy, improved health outcomes, and, ultimately, quality of life. Hence, this study aims to develop a feasible and acceptable self-management package for tribal persons living with Sickle cell disease and caregivers residing in the Mysuru and Chamarajanagar districts of Karnataka. Method: The study will be conducted in two phases. In the first phase, a self-management package will be developed with insights from health providers working with Persons living with sickle cell disease, non-government organisations, Subject experts and persons with sickle cell disease and caregiver. This package will be implemented in the second phase for persons living with sickle cell disease. Participants will undergo capacity-building training and receive regular follow-up for 12 months through monthly telephonic calls and a few home visits. Assessment will be done with Acceptability Intervention Measurement (AIM) and Feasibility Intervention Measurement (FIM) at regular intervals. Suggestions and feedback will be added to make the package more comprehensive. Thus, the expected outcome is an acceptable and feasible self-management package. Conclusion: This proposed study is an important step towards addressing a critical gap in sickle cell disease management in tribal populations in India. The anticipated outcome of this research is to enhance self-management practices in individuals with sickle cell disease.
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