Information needs of parents of children with congenital anomalies across Europe: a EUROlinkCAT survey.

ABSTRACT: Parents of children who have a congenital anomaly can experience significant worry about their child's health. Access to clear, helpful, and trustworthy information can provide a valuable source of support. In this study the aim was to explore the information needs of parents/carers of children with congenital anomalies across Europe. A cross-sectional online survey was developed in nine languages to measure parents' information needs, including: (1) the 'helpfulness'/'trustworthiness' of information received from eight relevant sources, and (2) overall satisfaction with information received. Parents/carers of children (0-10 years) with cleft lip, spina bifida, congenital heart defect [CHD] requiring surgery, and/or Down syndrome were recruited online via relevant organisations in 10 Europ

SUBMITTER: Marcus E 

PROVIDER: S-EPMC9652126 | biostudies-literature | 2022 Nov

REPOSITORIES: biostudies-literature