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.
The health and well-being of young people remains a critical issue. For Indigenous girls and young women in Canada and South Africa, the situation is exacerbated by high rates of sexual violence. The article draws on examples of artworks and close readings of several images of resistance produced by Indigenous girls and young women participating in a six-year study that seeks to address sexual violence in the two countries. Exploring resistance is an understudied area in relation to young people and well-being. Building on our visual research and fieldwork, we posit that the idea of “picturing (as) resistance” through the various participatory visual and arts-based tools is a promising area of investigation in relation to wellbeing.
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