Focus Groups & Research - Empowering Young Patients

Focus Groups & Research (WP4 – ActionAid Italia)

A structured participatory process (May 2025 – Feb 2026) including:

During Work Package 4 (Policy Making & Sustainability), Empowering Young Patients developed a structured process of listening, analysis, and co-creation aimed at exploring the conditions that facilitate or hinder the participation of minors in hospital settings. Activities included individual interviews with key stakeholders, thematic focus groups, and two participatory Community Labs, involving institutions, healthcare professionals, representatives from the education sector and the third sector, families, and healthcare teams.

WP4 activities took place between May 2025 and February 2026 and represented a central component of the project, contributing to the definition of operational recommendations and the co-creation of the Charter of Participation Rights for hospitalized children and adolescents.

Individual Interviews – Exploring Participation in Hospital Settings (May – November 2025)

The interview explored the role of shared reading as an educational and relational practice in care settings. Reading emerged not as a mere recreational activity, but as a tool for emotional connection capable of supporting children’s neuropsychological development, even during hospitalization. The project “La cura del libro” was described as a structured model, implemented in twelve Italian hospitals, involving the distribution of over 5,000 books and the development of operational guidelines co-created with healthcare professionals. A key element identified concerns staff motivation: training proves effective only when it fosters genuine commitment and a sense of educational responsibility.

The interview highlighted ABIO’s integrated approach to the humanization of pediatric care, structured around three main pillars: trained volunteering, humanization of spaces, and the protection of children’s rights in hospital settings. A significant disparity across Italian hospital contexts was emphasized: around 30% of minors are still admitted to adult wards, resulting in a lack of age-appropriate spaces and attention. The pandemic also had a negative impact on the continuity of associative activities, leading to the prolonged closure of many playrooms. A critical issue concerns governance: where there is no shared coordination among doctors, volunteers, and other professionals, interventions tend to be fragmented and less effective.

The interview explored the national organization of hospital schooling and home-based education, highlighting the central role of Regional School Offices in coordinating resources and teachers. It emerged that the service can be activated regardless of the duration of hospitalization, with highly personalized teaching approaches, often delivered directly at the patient’s bedside. No specific mandatory training is предусмотрed for hospital teachers; however, structured psychological support is recommended to address the emotional complexity of the context. Innovative hybrid learning models were also presented, enabling students to maintain a connection with their original school class.

The interview explored the national organization of hospital schooling and home-based education, highlighting the central role of Regional School Offices in coordinating resources and teaching staff. It emerged that the service can be activated regardless of the length of hospitalization, with highly personalized teaching methods, often delivered at the patient’s bedside. No specific mandatory training is предусмотрed for hospital teachers; however, structured psychological support is recommended to address the emotional complexity of the context. Innovative hybrid learning experiments were also presented, enabling students to maintain a connection with their original class.

The interview focused on the minor patient’s right to information and the tensions that may arise with caregivers. It highlighted how overly infantilizing environments can hinder the development of autonomy in adolescents. Work with parents and siblings was described as an integral part of the therapeutic care process. The interview also emphasized that having a psychologist consistently integrated into the care team is still an exception within the Italian context. The off-therapy phase requires early and well-coordinated support, particularly in collaboration with the school system.

Community Lab

First in person Community Lab – 21 october 2025, Rome

The workshop applied Laura Lundy’s model of participation to the three phases of the care pathway. It revealed a progressive reduction in listening to the child from diagnosis to the reintegration phase, with involvement often mediated exclusively by adults. Hospital schooling and the third sector were identified as key infrastructures for ensuring continuity and agency, while the transition to adolescence appears to lack a shared framework.

Second in person Community Lab – 25 february 2025, Policlinico Gemelli Rome

The Community Lab used the analysis of a “typical day” in the patient’s life as a participatory tool to interpret the ward environment. Good practices and necessary standards were identified to ensure the right to participation. The group co-identified 14 key points for the Charter of Rights, including: the integration of a psychologist within the care team, structural cultural mediation, educational continuity, therapeutic flexibility, and continuous staff training.