Upper limb participation after brachial plexus birth injury from childhood to young adulthood: A qualitative study

There is emerging evidence from patient-reported questionnaires that participation restrictions related to employment, parenting, and leisure pursuits emerge in adulthood after a brachial plexus birth injury (BPBI). However, little is known about the lived experiences of young adults with BPBI and their participation during this transitional phase. This Interpretive Description qualitative study was informed by the self-determination theory to guide our perspective of how transformations in the areas of autonomy, competency, and relatedness may influence participation throughout the lifespan. Semi-structured interviews with nine young adults between 19 and 34 years of age with BPBI's were conducted, transcribed, and analyzed using thematic analysis to explore their lifelong participation. There were three main themes that arose during the analysis of these interviews: Navigating everyday life, Navigating uncertainties, and Navigating BPBI identity. Within navigating everyday life participants shared narratives of how opportunities in childhood helped them figure out how to adapt to their BPBI which led to habitual adaptations in adulthood; self-awareness and self-advocacy skills evolved over time. Common experiences of navigating uncertainties during major life transitions (e.g., parenting, post-secondary studies) was expressed as a conscious process of relearning and reintegrating the impacts of BPBI. During transition to adulthood, the lived experiences of the visibility and invisibility of disability emerged as a central aspect of BPBI identity. These narratives from the lifelong participation of adults with BPBI provide important insights to inform transitional care programming of children with BPBI within pediatric hand and upper limb clinical settings.