The Parent’s Experience of Clubfoot Diagnosis Across the UK

Abstract

This study presents a UK-wide snapshot of the experiences of families of children with idiopathic congenital talipes equinovarus (CTEV). 111 families with 112 affected children completed a questionnaire containing open and closed questions about demographic data, diagnosis, treatment, and support, from 50 of 72 UK counties. All children were born between July 2002 and June 2007. CTEV was diagnosed prenatally in 81 (72%) infants. Most families (73, 66%) felt that the prenatal care they received could have been improved. The most common complaint (38 families) was lack of information at the time of diagnosis. The most common reaction (50 families) was shock or distress. A comparison between modes of information delivery revealed that prenatal consultations and leaflets were commonly provided but that families preferred prenatal consultations, the internet, and a DVD. Almost all families (102 out of 111, 92%) who responded said they sought information independently. Most families (84%) used the internet and some were distressed by what they found. We conclude that the experience of families when a child is diagnosed with CTEV during the 20-week prenatal ultrasound scan is less stressful when good quality information is provided or when families are signposted to reputable sources.