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

Factors affecting hand cosmesis and the aesthetic impact of surgery on congenital hand differences in Finland

“…Nails are perceived as essential for the normal appearance of fingers, while nails in the wrong places seem to negatively impact appearance, which could be why a hand with nubbins and nails was perceived as cosmetically less pleasing than a nearly identical hand without nails. The results of this study further strengthen earlier findings that the thumb does not affect appearance more than any other finger, and that the total number of normal-appearing digits matters (Nietosvaara et al, 2021).…”

“…The results of Bellew et al (2011) were based on parent and patient reports, which do not necessarily reflect the general population's viewpoints. Other studies have reported differences in results reported by caregivers compared with laypeople and care providers, with the former often giving better scores (Gkantidis et al, 2013;Goldfarb et al, 2007;Nietosvaara et al, 2021). In this study, we found the answers of caregivers and patients consistent with those of the other participants.…”

“…Aesthetic outcome after surgery has been evaluated in a few studies (Goldfarb et al, 2007;Libberecht et al, 2011;Staines et al, 2005;Yen et al, 2006), but the measurement of these were usually fairly subjective and reported, as 'improved, good, or satisfying' according to surgeons, parents or both. Malformations can cause functional, cosmetic and psychological disability, which may partly be related to stress from peers (Andersson et al, 2011;Bickham et al, 2017;McDougall et al, 2021). For this reason, improving the hand's appearance has been reported as more important than functional improvement for children and their parents' following surgery by some authors (Libberecht et al, 2011).…”

“…For this reason, improving the hand's appearance has been reported as more important than functional improvement for children and their parents' following surgery by some authors (Libberecht et al, 2011). A previous study on the general perception of congenitally malformed hands found that appearance is perceived poorly in hands with three or fewer fingers, several abnormally developed parts, cleft hand or any other clearly visible deformity (Nietosvaara et al, 2021). Surgery may improve the appearance of congenitally different hands and bring them closer to normal, but it also creates visible scars that may impact appearance negatively.…”

Pre‐natal and post‐natal diagnosis of congenital upper limb differences: The first 3 years of the Australian Hand Difference Register

“…The standardised approach to collecting data ensures its high quality and usefulness. It has been important to have regular engagement with AHDR registrants through newsletters providing aggregated data and requests for additional participation in research 23 . For the successful running and sustainability of such a register, consumer input into research ideas and feedback on results obtained is important.…”