Understanding psychological adjustment and coping with congenital upper limb difference in adulthood: a qualitative study

Abstract

PURPOSE: Research indicates that adults living with an acquired limb difference face a range of physical, social, and psychological challenges; however, there is comparatively less research regarding adults born with a limb difference. This study aimed to explore how adults with a congenital upper limb difference experience, psychologically adjust to, and cope with the practical, social, and emotional challenges associated with living with their limb difference. MATERIALS AND METHODS: Semi-structured, one-to-one interviews were conducted with eight adults with congenital upper limb difference living in the UK. Interview transcripts were analysed using interpretative phenomenological analysis. RESULTS: Three themes were developed: (1) a sense of determination; (2) feeling different from others and (3) the journey of emotions. Together, conveying that participants developed a childhood-rooted determination to "get on with it," creatively managing physical challenges. Although they often felt visibly different and vulnerable to judgement, participants grew towards acceptance and resilience through reflection, support and positive relationships. CONCLUSIONS: Psychological support, integrated into rehabilitation teams, should be offered to people with congenital upper-limb difference at key transition points such as young adulthood. Encouragement and inclusive attitudes from families, schools and services in childhood positively influence confidence and identity into adulthood. Tailored peer support with others who have congenital upper-limb difference also provide benefits including belonging.

The authors' abstract, as published at the source. Disability and Rehabilitation, 2026 · DOI ↗