Pediatric palliative care in children and young people with non-oncological diseases: a scoping review

Abstract

Background: Pediatric palliative care (CPP) is defined as active and holistic care of the child's body, mind and spirit, actively supporting the centrality and role of the family. They have as their primary objective the improvement of the quality of life of children and their families, supporting them in treatment choices. CPPs should be planned at the time of diagnosis, in order to be able to initiate the patient and family early on to a type of care that responds to the multiple needs that the situation entails, without precluding concomitant curative therapy. In fact, it has been shown that they are all the more effective the earlier they are integrated into the child's treatment plan. However, despite the international recognition of CPPs as an integral part of the right to health, implementation and effective access to such services remain limited in many contexts, including Italy. challenges to CPPs integration are multiple and include the complexity of clinical conditions, lack of training of healthcare professionals, regulatory and regional politicy issues, and socio-cultural barriers. Aim: The primary aim of this scoping review is to investigate the current landscape of PPCs for children and young people with life-limiting non-oncological conditions in Italy and worldwide in terms of benefits, eligibility, impact on the family and the barriers associated with treatment. Materials and method: A scoping review was performed between September 2023 and January 2024 following the PRISMA guidelines using the keywords “pediatric palliative care” AND “chronic disease/barrier/eligibility/parents. Results: Ten full-text articles met the inclusion criteria. The major studies were quantitative, cross sectional. The finding demonstrates that early inclusion of complex chronic non-oncological patients in palliative care programs leads to greater patient and family satisfaction, reducing emotional burden and improving communication and treatment planning. Parents experience stress and financial difficulties. Parent psychological distress was associated with parent-reported patient symptoms and financial difficulty. Major challenges include the lack of support networks and training in palliative care, along with legal and economic issues. Conclusions: While there is growing recognition of the importance of CPP, further efforts are needed to address challenges in accessing and integrating services, as well as meeting the needs of patients, families and healthcare professionals working in this field. Improving knowledge and awareness about CPP can help overcome barriers to accessing services and improve the quality of care provided to pediatric patients and their families.

Keywords

• chronic disease
• pediatric palliative care
• barrier
• eligibility
• parents
• pediatrics