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Arch Dis Child Fetal Neonatal Ed. 2003 Nov;88(6):F467-71.

Implications of carrier identification in newborn screening for cystic fibrosis.

Author information

1
Institute of Medical Genetics, University of Wales College of Medicine, Heath Park, Cardiff CF14 4XN, Wales, UK. parsonsep@cardiff.ac.uk

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.

PMID:
14602692
PMCID:
PMC1763227
[Indexed for MEDLINE]
Free PMC Article
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