What are the barriers to the early integration of paediatric palliative care? A systematised review

Abstract

Background: Children with serious illnesses, such as cancers or congenital anomalies, require special care that alleviates the disease burden. Paediatric palliative care (PPC) is comprehensive, interdisciplinary care for patients and their families that begins once a life-threatening disease has been diagnosed. PPC’s early integration with curative treatments has been proven to relieve suffering and enhance both patients’ and families’ quality of life. Nonetheless, few paediatric patients access and receive these services.

Aim: To identify and synthesise the barriers to PPC’s early integration.

Methods: This systematised review is based on PRISMA guidelines. The Medline, Embase, PsychInfo and CINAHL databases were searched using controlled and non-controlled keywords and a variety of research strategies. This search was limited to peer-reviewed studies published in English between 2018 and 2023. Based on the inclusion criteria, Covidence software was used to screen, extract and assess the retrieved studies, which were evaluated using the CASP and MMAT checklists. Findings were synthesised using narrative synthesis with inductive thematic analysis.

Results: Eight studies of medium to high quality met the inclusion criteria. Three main themes were identified: limited resources, the lack of a standardised referral process and fears associated with palliative care.

Conclusion: Reflecting the insufficient attention the speciality receives, several modifiable barriers impede paediatric patients from accessing the early benefits of palliative care services. PPC requires financial support, community awareness and a clear referral process. Policymakers play an important role in supporting PPC, and researchers must work to explore policymakers’ perspectives on these barriers and find facilitators.