Abstract

Objective: To investigate the psychosocial implications for families whose infant was identified as a cystic fibrosis carrier by newborn screening.

Design: Prospective psychosocial assessment.

Setting: Primary care.

Respondents: Study: (a) families of an affected infant identified by screening (n = 9); (b) families of a carrier infant identified by screening (n = 10). Control: group of mothers from the general population (n = 82).

Interventions: Questionnaires and semistructured interviews.

Main outcome measures: Attitude to screening, assessments of the mother/baby relationship, anxiety, wellbeing.

Results: All families were in favour of screening, with no evidence that the mother/baby relationship, anxiety or wellbeing had been adversely affected. Parents, however, did identify problems in terms of the service delivery protocol and genetic counselling practice.

Conclusion: Six months after disclosure, carrier identification was not perceived by parents to be problematic.