Barriers, facilitators and recommendations for the implementation of newborn sickle cell screening program in tribal communities: findings from a qualitative multicentric study in India

Abstract

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.