Caregiver understanding in brachial plexus birth injury: A qualitative study

Objective An estimated one to three per 1,000 neonates experience brachial plexus birth injuries (BPBIs), which can result in lifelong physical disabilities. Caregiver health literacy is an important consideration for providers due to a multitude of factors, including etiology/diagnosis complexity, treatment intensity, and prognosis ambiguity. This study aimed to qualitatively explore caregiver understanding of BPBI information delivery. Methods Semi-structured interviews were conducted with 19 caregivers of young children with BPBIs in this multi-center study conducted in Canada and the U.S. Interviews were thematically coded via directed content analysis, and self-reported demographics were collected. Results Six categories emerged from the data, including naming the condition, understanding how and when injury happened, awareness of etiology, multiple modes of information delivery, desire for prognostics, and confusion around treatments. Conclusions Caregivers generally understood the etiology and factors surrounding the onset of their child’s BPBI, but confusion remained around treatment and prognosis. This study highlights potential gaps and areas for improvement in BPBI information delivery, thereby providing important guidance for providers on improving the treatment experience for caregivers of children with BPBIs.