Parental experience after diagnosis of a congenital upper limb difference: a national survey

Abstract

Congenital hand and upper limb differences may be detected during antenatal ultrasonography or visually at birth. We investigated the experience of parents when they first learned that their child had an upper limb difference. This national retrospective cross-sectional quantitative and qualitative survey within the UK and Ireland received 261 responses from parents of children. Differences were first suspected antenatally among 41% of respondents and in 57% postnatally, with 2% unsure. Of the children, 54% were seen in a clinic by a specialist congenital hand surgeon within 3 months and 88% within 12 months, with 73% of respondents feeling unsupported after a diagnosis that was unexpected. Qualitative analysis outlined a broad spectrum of parental concerns about the quality of information received, especially regarding the child’s future biopsychosocial needs. This study showed the need for more support for parents from frontline healthcare professionals and the need for a streamlined referral pathway. Level of evidence: IV