Implications of carrier identification in newborn screening for cystic fibrosis.

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.

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.