Mothers' accounts of screening newborn babies in Wales (UK)

To explore mothers' accounts of screening newborn babies to increase our understanding of how they define screening and talk about the process of consent.

A purposive sample of mothers, whose newborn babies had recently been screened, were invited to take part in a semi-structured interview.

Primary and community-care settings in one region of Wales, UK.

Mothers (n=18) who had recently given birth and been offered screening for their newborn babies.

Information giving about newborn screening was reported to be ad hoc, with most women receiving information in the postnatal period. Mothers talked about newborn screening as a routine procedure that 'had' to be done. There was some recognition that consent for screening should have been given, but this was often compromised because the test was being offered by a trusted health professional and a social expectation that responsible mothers should have their babies tested.

Mothers agreed that information about newborn-baby screening should be given during pregnancy. This is in line with recent recommendations from the UK Newborn Screening Programme Centre. This policy urgently needs to be translated effectively into everyday practice. In addition, the nature of consent required for each test needs to be clarified so that midwifery practice is not compromised and mothers are aware that some tests are advisable whereas others, for less treatable diseases, are a matter of individual choice.