The moral experiences of children with osteogenesis imperfecta

BACKGROUND: Serious ethical problems have been anecdotally identified in the care of children with osteogenesis imperfecta (OI), which may negatively impact their moral experiences, defined as their sense of fulfillment towards personal values and beliefs. RESEARCH AIMS: To explore children’s actual and desired participation in discussions, decisions, and actions in an OI hospital setting and their community using art-making to facilitate their self-expression. RESEARCH DESIGN: A focused ethnography was conducted using the moral experiences framework with data from key informant interviews; participant observations, semi-structured interviews, and practice-based research (art-making) with 10 children with OI; and local documents. PARTICIPANTS AND RESEARCH CONTEXT: The study was conducted at a pediatric, orthopedic hospital. ETHICAL CONSIDERATIONS: This study was approved by McGill University Institutional Review Board. FINDINGS/RESULTS: Children expressed desires to participate in their care, but sometimes lacked the necessary resources and encouragement from healthcare providers. Art-making facilitated children’s voice and participation in health-related discussions. CONCLUSIONS: Healthcare providers are recommended to consider the benefits of art-making and educational resources to reduce discrepancies between children’s actual and desired participation in care and promote positive moral experiences.