Children's Understanding of Brachial Plexus Birth Injury
M Goldsand, MSc OT (C)1, Kathleen Lai, MSc OT (C)1, Kristen M Davidge, MD, MSc2 and Emily S Ho, PhD, MEd, OT. Reg (Ont)2, (1)University of Toronto, Toronto, ON, Canada, (2)The Hospital for Sick Children, Toronto, ON, Canada
Children's Understanding of Brachial Plexus Birth Injury
Introduction
Facilitating children's understanding of their medical condition can improve health outcomes and psychosocial well-being. Since families tend to target more than one source of health information, a child's understanding of their health is developed corporately. Information provided by their health care team is supplemented with conversations with caregivers, their social network, and online health information which can help or hinder their ability to understand medical information. Misunderstandings regarding the nature of the brachial plexus birth injury and its sequelae can arise from one or a combination of these sources. To evaluate and inform current family-centered information delivery approaches, this qualitative study was conducted to explore children's understanding of their brachial plexus birth injury.
Materials & Methods
An interpretivist qualitative approach was used to conduct in-depth interviews of children with brachial plexus birth injuries and their caregivers both individually and collectively. The audio-recorded interviews were transcribed, coded inductively, and thematically analyzed.
Results
Eight children between 6 to 18 years (5M,3F) and 10 caregivers (7 mothers, 2 fathers, 1 grandmother) were interviewed. Four children (50%) had total plexus injuries. Families of diverse racial background and education were purposively sampled. Three main themes emerged from the interviews: 1) Lived Experience versus Medical Knowledge, 2) Readiness to Learn, and 3) Looking Forward. Children primarily understood their injury through experiences of functional and psychosocial concerns related to the movement, pain, and appearance of the limb. They did not readily connect the medical information about their condition as relevant to their lived experiences. Children's ability to learn about diagnostic and prognostic information was influenced by developmental age, emotional readiness, background knowledge, and parental perceptions and attitudes. Lastly, children needed greater education and support in understanding their prognosis and its implications upon their future life goals.
Conclusions
Using current information delivery methods, these findings indicate that medical information was poorly understood by children with brachial plexus birth injuries because the connection to their lived experiences was not readily appreciated. As children understood their medical condition through functional and psychosocial concerns, framing diagnostic and prognostic information around these concerns may be a useful strategy to improve their health literacy.
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