Conference Program

The right of children and adolescents to actively participate in processes that concern them is enshrined in the UN Convention on the Rights of the Child, yet in hospital settings it remains among the least practised. Research conducted in Italy shows that the right of minors to express opinions and preferences regarding clinical decisions that affect them still represents one of the least developed areas in hospital practice, compared to rights related to protection and family presence, which record significantly higher levels of implementation (Bisogni et al., 2015). At the international level, the literature highlights how the involvement of minors tends to remain symbolic: children are consulted but rarely manage to meaningfully influence decision-making processes, partly due to the tendency of adults to protect them from difficult choices (Teela et al., 2023). At the same time, meaningful participation of children in decisions that concern them produces concrete and documented benefits: it reduces anxiety, increases cooperation with clinical procedures and improves treatment adherence (Council of Europe, 2024).

To address this gap, ActionAid Italia — within the European project Empowering Young Patients (EYP, CERV programme, 2025–2026) — is coordinating the co-design of a Charter for the Right to Participation of Hospitalised Children. The tool aims to translate principles and operational recommendations into a shared document, built through a multi-level participatory process: Communities of Practice with interprofessional practitioners, a validation questionnaire on the draft submitted to 150 professionals and stakeholders, and a final laboratory that will involve the direct participation of hospitalised children and peers with previous experience of hospitalisation or involved in the project's educational activities. The Charter will then be presented to Italian and European institutional decision-makers.

The analytical framework adopted is Laura Lundy's model (2007), which articulates participation through four interdependent dimensions: Space (safe places and times for expression), Voice (the effective possibility of expressing opinions and needs), Audience (adults willing and able to listen) and Influence (the possibility that listening produces real effects on decisions). This model guided the analysis of the three main phases of the care pathway — diagnosis, hospitalisation and off-therapy — across different developmental age groups. The empirical work was developed in dialogue with practitioners from the Paediatric Oncology ward of the Policlinico Gemelli in Rome, whose contribution has informed both the analytical phase and the definition of the Charter's priorities.

The results show that participatory practices exist and produce positive effects, but remain tied to individual sensitivity rather than a systemic approach. The setting — language, spatial arrangements, coherence among professionals — emerges as an active variable in care, capable of supporting or hindering listening. Participation is recognised as an ethical value, but not yet as a structured organisational competence. These are the knots that the Charter aims to untangle, offering a shared language and common tools to all actors within the hospital system.