The role of patients and parents in Clinical Ethics Support Services (CESS) remains a subject of ongoing debate, particularly within case-based approaches. Although such participation is gradually expanding, practical challenges and ethical considerations continue to limit its implementation. Gaining a nuanced understanding of patient and parent involvement requires examining the viewpoints of those directly engaged in these services and the contexts in which they operate. This study investigates how stakeholders perceive both the practicality and moral justification of including patients and parents in pediatric oncology CESS. Twenty-six healthcare professionals from Nordic countries, working as ethics support staff in pediatric oncology or general pediatrics, participated in six focus group sessions. The discussions were examined through an inductive qualitative content analysis approach. Although involved in Clinical Ethics Support Services (CESS), most ethics support personnel had little to no prior experience with patient and parent participation (PPP) in these services. While they recognized possible advantages of PPP, such as enhancing understanding and trust, these were often outweighed by concerns about inadvertently causing harm. Identified benefits and risks included fostering deeper insight, encouraging open confrontation, and generating ethical dilemmas related to decision-making participation. Participants described strategies to minimize potential negative outcomes and protect against harm, implemented at organizational, relational, and individual levels.
Although ethics support personnel recognized potential benefits of patient and parent participation (PPP) in Clinical Ethics Support Services (CESS), their primary concern was avoiding harm to both children and parents, which may reflect a form of implicit paternalism. The perceived appropriateness of PPP in pediatric oncology CESS appeared to be context-dependent, with no standardized approach applicable in all cases. Tailoring participation on a case-by-case basis, alongside implementing strategies to minimize potential risks, emerged as a key facilitator. This study enhances understanding of PPP in CESS from the perspectives of ethics support personnel in pediatric oncology and provides guidance for fostering participation in ways that are both ethically and practically responsible.
