Shared decision making in youth with brachial plexus birth injuries and their families: A qualitative study

Abstract

ObjectiveThe objective of this study is to elucidate the decision-making experiences of youth with brachial plexus birth injuries who face preference-sensitive decisions regarding treatment options for a persistent elbow contracture. MethodsTranscripts, research-created drawings, and field notes from in-depth interviews with 5 young adults and 14 youth-parent dyads, and 15 participant observation sessions of families and clinicians in the clinic setting were deductively and inductively coded and thematically analyzed. ResultsYouth’s shared decision making was influenced by relational processes with their clinicians and parents. Youth’s trust in their clinicians’ recommendations for pursuing treatment and pressure from their parents to pursue or continue rehabilitation treatment affected how their voices were expressed and heard. Parental emotional adjustment to the birth injury played a role in parental perceptions of what was deemed their youth’s best interest in the shared decision. ConclusionsThe decision-making experiences of youth with brachial plexus birth injury illustrate the complexity of paediatric preference-sensitive decisions and the significance of social and emotional factors on these shared decisions. Practice implicationsOpportunity for youth to express their voice without external pressure during shared decision making is needed to make well-informed decisions based on their own values. Interventions such as decision coaching and decision support tools may help youth and parents to formally identify and discuss these relational processes.