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Barriers, facilitators and recommendations for the implementation of newborn sickle cell screening program in tribal
Nithin Rajamani1, Apoorva Pandey2, Suchitra Surve3
1ICMR-National Institute of Immunohaematology, Mumbai, Maharashtra, India.
Insights
Newborn screening for sickle cell disease (NBS for SCD) in India faces barriers like stigma and poor health system integration. Addressing these socio-cultural factors and enhancing collaboration is key for effective SCD management programs.
Area of Science:
- Public Health
- Genetics
- Health Systems Research
Background:
- Newborn screening for sickle cell disease (NBS for SCD) is crucial for early detection and management.
- A 2019 study in India focused on early screening, follow-up, and care for infants with SCD in tribal regions.
- The study aimed to identify implementation barriers and facilitators for NBS for SCD.
Purpose of the Study:
- To identify barriers and facilitators affecting the implementation of newborn screening for sickle cell disease in tribal regions of India.
- To provide insights for developing effective policies and comprehensive management programs for SCD in prevalent areas.
Main Methods:
- A qualitative exploratory descriptive approach was employed.
- In-depth interviews were conducted with 127 participants, including parents of newborns with SCD.
- Data analysis utilized NVivo14, with themes identified through frequency analysis and classified using the Multilevel Ecological Model of Health (MEMH).
Main Results:
- Twenty-five themes emerged, with barriers including stigma, local beliefs, lack of health system integration, and difficulties in blood sample collection/testing.
- Facilitators identified were the inclusion of frontline health workers, skilled personnel, and regular follow-ups.
- Recommendations included integrating NBS for SCD into the health system, behavior change communication, and enhanced stakeholder collaboration.
Conclusions:
- Barriers and facilitators exist across multiple levels, necessitating a holistic approach to SCD management.
- Comprehensive SCD programs must address socio-cultural factors and integrate with the health system.
- Findings offer valuable insights for shaping NBS policies in SCD-prevalent regions.
Background:
Newborn screening for sickle cell disease (NBS for SCD) is essential for timely detection and management. In 2019, a study encompassing early screening, follow-up, and comprehensive care for SCD babies was undertaken in seven SCD-prevalent tribal regions of India. The study also aimed to identify the barriers and facilitators affecting its implementation.
Methods:
A qualitative exploratory descriptive approach was used to conduct in-depth interviews with purposively selected participants (n = 127) including parents of newborns with SCD. The data were compiled and analysed using NVivo14. Predominant themes were identified through frequency analysis and the number of references, and they were further classified using the Multilevel Ecological Model of Health (MEMH).
Findings:
Twenty-five themes emerged, of which thirteen highlighted barriers, the predominant ones being stigma & local beliefs, lack of integration of NBS with the health system, accessibility challenges and difficulties with blood sample collection & testing. Seven themes addressed facilitators such as the inclusion of frontline health workers, skilled human resources and regular follow-ups. Five themes emerged for recommendations including integrating NBS for SCD into the health system, behaviour change communication and enhanced stakeholder collaboration.
Interpretation:
The study identified barriers and facilitators across multiple levels, advocating the need for a holistic approach. The findings suggest that a comprehensive SCD management program must address socio-cultural dimensions and effectively integrate with the health system, providing valuable insights for shaping policies for NBS in SCD-prevalent areas.
Funding:
The study was funded by the Indian Council of Medical Research.
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