Ethics support personnel's perceptions of patient and parent participation in clinical ethics support services in pediatric oncology

BackgroundThere is an ongoing discourse about patient and parent participation (PPP) in Clinical Ethics Support Services (CESS), and this paper focuses specifically on case-based CESS. Participation in CESS is increasing slowly in many contexts due to practical and moral complexity. To gain deeper understanding of PPP in CESS, we need to delve into stakeholders' perspectives and the landscape in which they operate. The aim of the study was to explore perceptions regarding feasibility and moral appropriateness of PPP in CESS in pediatric oncology.MethodsNordic healthcare personnel (n = 26) working as ethics support personnel in pediatric oncology (and/or pediatrics in general) participated in focus group interviews (n = 6). Data was analyzed with qualitative inductive content analysis.ResultsDespite engagement in CESS, most ethics support personnel had no former experience of PPP in CESS. The ethics support personnel expressed potential benefits with PPP in CESS, but these were overshadowed by fear of causing participant harm. The potential benefits and harms included to deepen understanding and trust, to catalyze confrontation and to create dilemmas of decision-making participation. Reported strategies to mitigate potential negative consequences and reduce risk of causing harm were at organizational, relational and individual levels.ConclusionsDespite seeing positive reasons for PPP in CESS, the ethics support personnel were mainly concerned about the potential participant harm and wanted to protect the child and the parent. This could be interpreted as a form of disguised paternalism. The perceived appropriateness of PPP in CESS in pediatric oncology seems to depend on the situation. Furthermore, in cases where it can be considered, there is no universal way of doing it. An important enabler may be to customize PPP in CESS on a case-by-case basis and to apply the identified strategies to reduce potential risk of causing harm. This study contributes to increased knowledge about PPP in CESS from the perspectives of ethics support personnel in pediatric oncology and informs us about what is needed to carefully foster PPP in CESS, both practically and morally.