Rawnaq Almahadeen

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.

Objective: The prevalence of children needing palliative or end-of-life care is increasing. However, no comprehensive tool exists to assess the experiences of such care. We describe the development and testing of VOICES-Children (VOICES-C): the first questionnaire to assess care experiences of palliative and end-of-life services for children aged 0 to 18 years in the last 3 months of life. Methods: VOICES-Children was developed in 3 phases: (1) a literature review of care quality domains, parent interviews, healthcare professional (HCP) focus-groups/interviews, data integration, and prototype development; (2) prototype testing through HCP and parent interviews; and (3) completion of VOICES-C. In phase 1, 24 parents were interviewed, 38 HCPs (critical care nurses, physicians, palliative care staff, and specialist palliative care service staff) participated in focus groups, and 3 took part in an interview. Participants were recruited from 2 neonatal intensive care units, 2 pediatric intensive care units, 1 cardiac intensive care unit, and a children's specialist palliative care service. In phase 2, 10 HCPs and 14 parents were interviewed. Results: Data integration identified 19 meta-themes, including the importance of space, and the timing and amount of information. Testing demonstrated that VOICES-C captured parent experiences effectively. The final questionnaire comprised 83 questions about home care, the pediatric setting, and experiences of the last 2 days of life. Conclusions: VOICES-Children uses literature, experience data, and parental insights to produce a robust questionnaire of pediatric end-of-life care experience, administered postbereavement, that can be applied across healthcare settings. By assessing quality, services can be improved and inequities in delivery reduced.