BackgroundSerious 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 aimsTo 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 designA 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 contextThe study was conducted at a pediatric, orthopedic hospital.Ethical considerationsThis study was approved by McGill University Institutional Review Board.Findings/resultsChildren 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.ConclusionsHealthcare 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. (shrink)

Most theories of parenthood assume, at least implicitly, that a child will grow up to be an independent, autonomous adult. However, some children with cognitive limitations or psychiatric illness are unable to do so. For this reason, these accounts do not accommodate the circumstances and responsibilities of parents of such adult children. Our article attempts to correct this deficiency. In particular, we describe some of the common characteristics and experiences of this population of parents and children, examine the unique aspects (...) of their relationships, review several philosophical accounts of parental obligations, consider how these accounts might be extrapolated to semiautonomous adult children, and provide suggestions about parental obligations to promote autonomy and independence in adult children with cognitive limitations or psychiatric illness. In extending accounts of parental responsibilities to the case of semiautonomous adults, we find that the parental role includes the duty to continue to provide care—indefinitely if necessary—while cultivating autonomy and independence. (shrink)