title: Newborn screening for CF in a regional paediatric centre: the psychosocial effects of false-positive IRT results on parents.
abstract: Neonatal screening for cystic fibrosis (CF) has been established in Leeds since 1975. The current method is measuring IRT and genotyping. Newborn screening for CF results in a small but significant number of false positives. This study explored the psychosocial reactions to such results in a group of parents (N=21) using semi-structured interviews. Responses were analysed using descriptive statistics and well-validated content analysis. Mothers described a range of emotions during the screening process including anxiety, distress and upset. Waiting for the repeat IRT test results was identified as the most emotionally difficult stage. Discussion focuses on good practice and implications for CF services.
authors.affiliation: Academic Unit of Behavioural Sciences, School of Medicine, University of Leeds, 15 Hyde Terrace, Leeds LS2 9LT, UK.
authors.forename: Janette
authors.initials: J
authors.lastname: Moran
authors.forename: Kirsten
authors.initials: K
authors.lastname: Quirk
authors.forename: Alistair J A
authors.initials: AJ
authors.lastname: Duff
authors.forename: Keith G
authors.initials: KG
authors.lastname: Brownlee
mesh_terms: D000328:Adult; D001007:Anxiety; D003550:Cystic Fibrosis / Q000175:diagnosis*; D004644:Emotions; D005189:False Positive Reactions; D005260:Female; D006801:Humans; D007231:Infant, Newborn; D007407:Interviews as Topic; D008297:Male; D015997:Neonatal Screening / Q000009:adverse effects / Q000523:psychology*; D010287:Parent-Child Relations; D013315:Stress, Psychological / Q000209:etiology*