Beyond limitations: a qualitative inquiry into the lived experiences of adults with congenital radioulnar synostosis.

Abstract

This study explored the lived experiences of individuals with congenital radioulnar synostosis (CRUS), focusing on how the condition effects their daily occupations from diagnosis through adulthood. A phenomenological approach with thematic analysis was used. Eleven individuals diagnosed with CRUS, adults, participated in semi-structured Zoom interviews. They shared personal accounts about physical limitations, adaptations, and interactions with the healthcare system. Three central themes emerged: (1) I can't move that way-capturing the physical limitations imposed by CRUS; (2) This is my normal-reflecting the ways participants adapt and normalize their condition in everyday life; and (3) I know more than my doctor-highlighting their deep personal understanding of CRUS and challenges with medical professionals. Participants often became their own advocates due to limited professional knowledge about the condition. CRUS presents complex challenges that require tailored, client-centered care. Occupational therapy practitioners should integrate anatomical knowledge and adaptive strategies to support functional goals. A holistic, interdisciplinary approach and improved communication between patients and providers can enhance outcomes. Advocacy and awareness efforts are essential to empower individuals and promote more effective, empathetic care.