Bereaved Parents' Perspectives on Quality Pediatric End-of-Life Care: A Scoping Review.

BACKGROUND

Pediatric end-of-life care profoundly impacts families, yet existing reviews on bereaved parents' experiences lack methodological rigor and comprehensive synthesis. Identifying key quality indicators from parents' perspectives is essential for improving care.

OBJECTIVES

This scoping review synthesizes evidence on bereaved parents' views of high-quality pediatric end-of-life care, identifying critical domains and developing a thematic framework.

METHODS

We conducted a scoping review adhering to PRISMA-ScR guidelines. Searches in MEDLINE, CINAHL, PsycINFO, PsycArticles, and AMED included studies without date restrictions. Two reviewers independently screened studies, extracted data, and conducted inductive thematic analysis.

RESULTS

From 4962 records, 20 studies (1997-2015) met inclusion criteria, comprising 16 qualitative and 4 quantitative studies. Three themes emerged: (1) Interpersonal Interaction (compassionate communication, shared decision-making); (2) Interdisciplinary Care (symptom management, emotional, spiritual, and sibling support); and (3) Practical Support (care accessibility, skilled staff, financial/logistical assistance).

CONCLUSIONS

Bereaved parents advocate for a holistic, family-centred approach integrating empathetic communication, clinical expertise, and systemic support. These findings inform quality improvement initiatives and policy development in pediatric palliative care.