Maternal Awareness and Perception in Successful Implementation of Neonatal Screening Program

Abstract

Context: New-born Screening (NBS) is gaining the momentum from medical fraternities, but the grass root

implementation is yet a far reality. Mothers, the immediate caretakers of their new-borns, play a pivotal role

in healthcare decisions of their neonates which directly relies on their knowledge and perspectives on health

literacy.

Aims: To understand the role of maternal awareness and perception in implementation of NBS for inborn

errors of metabolism (IEM).

Methods: This qualitative study design adopted purposive sampling to recruit thirty-five postnatal mothers

on third day post-delivery from general wards of tertiary care hospital. Mothers were interviewed using

semi-structured questionnaire.

Results: Lack of awareness, strategic outreach programs, government initiatives in mothers and associated

economic issues posed a major challenge in the implementation of nation-wide NBS program. Post

intervention of health literacy on NBS and IEM, most mothers were eager to both participate and advocate

NBS at par with goals of the action component for comprehensive NBS module designing. Counselling

services for NBS, when offered antenatal and postnatal period, created an acceptance rate that was dependent

on the affiliation of the competent authority involved in the counselling and information dissemination

process and the setting in which the counselling intervention was administered.

Conclusions: While there exists a considerable knowledge deficit on disorders of new-born and the

importance of early screening, the affiliation of the counsellor influenced mother’s perception. This

emphasizes the radical need for antenatal counselling, outreach programmes by healthcare professionals to

ensure success of NBS; the goal of limiting neonatal morbidities arising from IEM, a reality