Establishing the psychological impact of congenital upper limb differences on parents and families

The aim of this prospective study was to report the psychological experiences of parents caring for children with a congenital upper limb difference and to compare these to population norms. Contributing factors were explored, including access to support and coping strategies. Finally, parents with a congenital upper limb difference themselves were compared to those without. Data recorded included demographics, a validated wellbeing and family impact measure, a unique measure of emotions experienced and exploratory questions. Wellbeing and family impact scores were significantly lower than populations norms. Mothers experienced significantly more negative emotions than fathers. There was no significant different between parents with and without a congenital upper limb difference. Of the parents, 68% felt there should be improved access to psychological support. This demonstrates that parents of children with congenital upper limb differences have unique psychological experiences and needs. They may benefit from specialist psychological support and further research is needed.Level of evidence: III.