Poetics of brittle bone disease: using found poetry to explore childhood bioethics

Abstract

ABSTRACT The gold standard for medical decision-making in pediatrics involves determining the “best interests” of the child and making the decisions accordingly. Accurately assessing the ethical concerns of children can assist care providers, such as parents, clinicians, and other healthcare professionals, in making care and discharge planning relevant to and reflective of what children need to flourish. However, the process of understanding children’s ethical concerns requires care providers to elicit their voices and address their hidden needs and desires into clinical care plans: a practice not commonly operationalized in hospitals. Found poetry was used to consolidate a three-year focused ethnography conducted at a large North American pediatric orthopedic hospital by rearranging interview transcripts into the poetic form. The ethnography demonstrated that children with Osteogenesis Imperfecta (OI or brittle bone disease) have developed complex strategies to navigate medical decision making processes and their communities despite prevailing societal notions of children’s fragility. The poems crystallize children’s rich and nuanced ethical concerns as well as the factors that support or thwart their moral agency within the hospital’s socioecological context. Found poetry thus can allow healthcare practitioners greater ethical insight into children’s needs and facilitate professional reflexivity.