Conference Program

Article 24 of the United Nations Convention on the Rights of the Child (CRC), adopted by the United Nations General Assembly on 20 November 1989, recognises the right of all children and adolescents to enjoy the highest attainable standard of health and to benefit from medical and rehabilitation services, so that no child is deprived of the right to access such services. Paediatric palliative care (PPC) is an integral part of children’s right to healthcare; it represents the evolution of the healthcare system towards an increasingly bio-psycho-social approach, characterised by interdisciplinary and highly relationship-based work within the social and healthcare sector, which includes the pedagogical and educational dimension. CCP offer all children with chronic and incurable conditions requiring highly complex care the right to experience the various stages of psychological, emotional, communicative, relational, spiritual and social development, tailoring ongoing care to the different needs associated with their growth (Maruzza Foundation). L’OMS definisce le cure palliative pediatriche come l’attiva presa in carico globale di corpo, mente e spirito del bambino e comprende il supporto attivo alla famiglia (OMS 1998). L’obiettivo è migliorare la qualità della vita del piccolo paziente e della sua famiglia e il domicilio rappresenta, nella stragrande maggioranza dei casi, il luogo scelto ed ideale di assistenza e cure. Le cure palliative pediatriche sono un ambito della Medicina ormai affermato e riconosciuto (Legge 38/10), in continuo sviluppo come testimoniato dal progressivo incremento numerico degli hospice e dei servizi di cure palliative domiciliari. Thanks to scientific advances in recent years, the number of children with life-threatening or life-limiting conditions has been steadily increasing in Italy and throughout the Western world. We wish to present the scientific findings of a study on paediatric palliative care at home in the city of Bari (Italy), a pilot project launched in 2022 by the ‘Ad Curam’ Social Cooperative which, in partnership with the Local Health Authorities, has established a specialist team providing paediatric palliative care at home throughout the Puglia region. The work is carried out by a multidisciplinary team comprising a palliative care specialist, an anaesthetist, nurses, psychologists, a priest and an educationalist. The concept of care (Mortari, 2026) and of caring (Calaprice, 2020) is expressed in socio-health, psycho-educational and spiritual terms, based on a highly integrated, synergistic and complementary approach by the entire team. This methodology is the cornerstone of a continuous approach to healthcare, psycho-educational and spiritual support, which optimises the management of complex family dynamics characterised by feelings of anger, helplessness and guilt, and, in many cases, depression arising from the perception of loss, separation and the possibility of death. In this process, the scope of care and emotional support extends not only to the child and the family but also to the entire team through multidisciplinary supervision.The emotional impact and high levels of stress affect the entire team, either implicitly or explicitly; they need support and the opportunity to express and share any limitations, fears and needs they may have.