Parents' responses to receiving sickle cell or cystic fibrosis carrier results for their child following newborn screening.

ABSTRACT: Universal newborn screening for sickle cell disorders and cystic fibrosis aims to enable the early identification and treatment of affected babies. Screening can also identify infants who are healthy carriers, with carrier results being the commonest outcome for parents and professionals to discuss in practice. However it is unclear what the effect will be on parents on being informed of their baby's carrier result. Semi-structured face-to-face interviews were conducted with a purposeful sample of 67 family members (49 mothers, 16 fathers, 2 grandparents) of 51 infants identified by universal newborn screening as carriers of cystic fibrosis (n=27) and sickle cell (n=24), across all health regions in England. Data were analysed by thematic analysis with subsequent respondent validation. Unt

SUBMITTER: Ulph F 

PROVIDER: S-EPMC4666569 | biostudies-literature | 2015 Apr

REPOSITORIES: biostudies-literature