Hand function and appearance following reconstruction for congenital hand differences: A qualitative analysis of children and parents

Background: Congenital hand differences induce social, psychological, and functional challenges for children. However, little is known about how children perceive their outcomes after reconstructive or what concerns children have. Methods: A total of 33 children (aged 6 to 17 years) who were treated for congenital hand differences, and their parents, participated in qualitative, semistructured interviews regarding the child's hand function and appearance. Discussion focused on the influence of congenital hand differences on the child's daily activities, school, and participation in sports and music. The interviews were open format to allow for spontaneous emergence of relevant themes followed by guided questioning. The interviews were transcribed verbatim and analyzed using qualitative coding, iterative comparisons, and frequency analysis to reveal perceptions of children and parents. Results: In this sample, 73 percent of children and parents reported difficulty with hand function. Children experienced difficulties with personal care (58 percent), school activities (30 percent), and household tasks (27 percent). Children were bothered by hand appearance (48 percent), pain (30 percent), and weakness (24 percent). Complex anomalies were associated with greater disability and limitation in sports and music. Conclusions: Children with congenital hand differences are concerned with the aesthetics of their hands and limitations in their ability to perform activities. Children were often discouraged by activities that their peers accomplished easily, but with increasing age demonstrated adaptive behaviors to accommodate in their "own way," suggesting the uniqueness of their limitations. Patients may benefit from early hand therapy guided toward areas of concern to enhance functional adaptation.