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Implications of carrier identification in newborn screening for cystic fibrosis

Parsons, Evelyn Patricia, Clarke, Angus John and Bradley, Don M. 2003. Implications of carrier identification in newborn screening for cystic fibrosis. Archives of Disease in Childhood 88 (6) , pp. 467-471. 10.1136/fn.88.6.F467

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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.

Item Type: Article
Date Type: Publication
Status: Published
Schools: Medicine
Healthcare Sciences
Uncontrolled Keywords: screening; cystic fibrosis; carrier detection; psychosocial issues
Publisher: BMJ Publishing Group
ISSN: 0003-9888
Last Modified: 15 Dec 2017 08:34
URI: http://orca-mwe.cf.ac.uk/id/eprint/776

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