How Children's participation ought to be practiced: A preliminary ethical framework to optimise the participation of children with osteogenesis imperfecta in health care

Background A three-phase ethnography was conducted at a paediatric orthopaedic hospital exploring the actual and desired participation of children with Osteogenesis Imperfecta in discussions, decisions and actions in the hospital and community. Phase I and Phase II revealed how childhood ethics are understood and practiced in the hospital using artmaking to engage children in discussions about their health-related experiences. Children expressed frustration, anger and disappointment when their desired level of participation in care was not actualized due to forgone opportunities for engagement by clinicians or lack of child-oriented health resources. Objectives The objective of this study (Phase III) was to specify how childhood ethics ought to be understood and practiced in the hospital by (1) convening hospital stakeholders in a collaborative setting to disseminate findings, identify ethical concerns and generate action steps; and (2) develop a preliminary ethical framework to optimise the participation of children with OI in health care. Design Focused ethnography reported using the SRQR checklist. Methods A focus group was conducted with 14 interdisciplinary hospital stakeholders. Data were analysed using qualitative, thematic analysis to understand primary ethical concerns and accompanying action steps. The findings were consolidated into a preliminary ethical framework and worksheet for clinicians. Results Four main factors impeding children's voices and desired participation were identified: legal and contextual factors; variations in clinicians' skills, practice and knowledge; difficulties incorporating alternative engagement methods into practice; and need for interprofessional collaboration. Five action steps were identified: Recognise, Elicit, Interpret, Act and Optimise. Relevance to clinical practice The focus group and creation of clinician resources were important steps towards addressing the ethical concerns of children with OI, such as marginalisation or exclusion in their OI care. This study better prepares us to disseminate our findings on a larger scale and create ethical frameworks and resources to improve how vulnerable children's voices are heard, understood and acted upon in healthcare settings.