The psychosocial impact of congenital hand and upper limb differences on children: a qualitative study

Abstract

This qualitative study explored the psychosocial concerns of children born with congenital hand and upper limb differences (CHULDs) from the point of view of these children and their parents. Qualitative, in-depth, semi-structured interviews were conducted face-to-face with eight parent–child dyads. Open format questions allowed spontaneous emergence of relevant themes, followed by guided questioning. Thematic analysis of audio-recorded and transcribed interviews found that children as young as 5 years old had unique and meaningful opinions about their CHULD, of which parents were sometimes unaware. Children reported that unsolicited questions from peers caused significant stress, and this increased around the time of surgery. All children used planned responses to peers as an effective coping mechanism. Children also identified positive aspects of their difference, including an increased sense of determination and an appreciation for being unique. Strategies that may improve psychosocial outcomes for children with CHULDs are discussed. Level of evidence: IV