Parents’ perspectives of the new neonatal BCG vaccination pathway in England: a qualitative study

Abstract

Background

The neonatal Bacillus Calmette-Guérin (BCG) selective vaccination pathway in England was revised in September 2021 due to the introduction of a national evaluation of newborn screening for Severe Combined Immunodeficiency (SCID). BCG is a live attenuated vaccine that is contraindicated in infants with SCID, hence BCG vaccination was moved from soon after birth to after SCID results were available, typically at 14–17 days. The transition also shifted vaccination delivery from maternity units to community clinics, raising concerns about potential barriers to access and lower vaccine uptake.

This study explored parents’ experiences of navigating the new neonatal BCG vaccination pathway and identified access barriers and enablers.

Methods

A qualitative study was conducted involving semi-structured interviews with 30 parents of infants eligible (or invited) for BCG vaccination in two urban areas where SCID screening was implemented. Participants were recruited through vaccine providers and community centres. Thematic analysis of interview transcripts was conducted using the ‘Framework Method’, incorporating an inductive approach.

Results

Parents were unaware of SCID screening and the changes to the neonatal BCG vaccination schedule and encountered diverse challenges in accessing the vaccine. Assessment errors led to eligibility confusion, with some ineligible infants receiving vaccine invitations. Many parents first learned about BCG vaccination on the postnatal ward, describing it as a “surprise vaccine,” with limited antenatal discussion diminishing informed decision-making. Appointment notification systems were inconsistent, with some parents receiving short-notice invitations or no notification at all. Physical access barriers included unfamiliar and distant clinic locations, transport, and the physical challenges of traveling soon after birth with a newborn. Parents with limited social support or financial constraints faced additional difficulties.

Conclusion

Parents were generally accepting of the need to amend the BCG timeline on account of SCID screening; however, we identified distinct accessibility concerns that varied from those associated with the routine immunisation programme. These barriers, and the separateness of the BCG programme from routine services, impacted parental experiences and vaccine uptake. Addressing these challenges is important to meet neonatal BCG uptake targets and support tuberculosis prevention efforts in England.