The Unmet Needs of Parents in Pediatric Palliative Care: A Qualitative Systematic Review.

Abstract

Background: The goal of pediatric palliative care is to improve the quality of life of children with life-limiting or life-threatening disease and their families through a holistic care approach. Although the current evidence suggests that the existing palliative care services are not meeting the needs of these families, especially the parents, these studies are heterogeneous with inconsistent results. The aim of this study was to systematically synthesize and critically evaluate the available evidence on unmet needs of parents in pediatric palliative care. Methods: A qualitative systematic review was conducted, informed by the Preferred Reporting Items for Systematic reviews and Meta-Analyses 2020 statement. Five electronic databases: MEDLINE, Scopus, Web of Science, CINAHL, and PsychINFO were searched. Included studies were appraised using the Critical Appraisal Skills Programme (CASP) checklist and then analyzed using a framework analysis. Results: Thirteen studies were included. Five major themes emerged: (1) pediatric palliative care services delivery and care coordination, (2) emotional, psychological, and spiritual support, (3) end-of-life care and bereavement support, (4) practical and daily living support, and (5) communication and information. Parents reported unmet needs in multiple dimensions and wished for more support in caring for their children. Conclusion: Given that all of the unmet needs align with already established pediatric palliative care standards, this review highlights the need for revised health care policies and practices that will lead to better implementation of these standards in practice.