The meaning of dying and death for children, their carers, and families: a scoping review

Title

The meaning of dying and death for children, their carers, and families: a scoping review

Creator

Lamb CM; Ramer K; Amodu O; Groenenboom K

Publisher

BMC Palliative Care

Date

2023

Subject

child; Canada; terminal care; human; palliative therapy; caregiver; palliative nursing

Description

Background: The meaning of dying and death are underexplored concepts for Canadian children. Subsequently, it is unclear how children and stakeholders make meaning of children's holistic health needs at the end of life. Methods: A scoping review of the international scholarly literature was conducted. Thirteen data sources were searched to search the scholarly literature without date limits until January 2022. Studies were included on the basis of population: children (aged 0-19 years), families and caregivers; setting (in Canada and end-of-life or dying phases of living) and concepts of interest (dying and death). Results: Of the 7377 studies identified, 12 were included for data extraction and content thematic analysis. The themes and subthemes include: 1) valuing the whole person; 2) living while dying; 3) authentic death talk; 4) a supportive approach (with lack and presence of support as subthemes); and, 5) a personalist approach. Conclusions: There is a pressing need for research into the meaning of dying and death for children, their carers and families in Canada. Lack of holistic care, authentic death talk, specialized pediatric palliative care providers, a personalist approach and communities of support present major gaps in care for Canadian children. Research is urgently needed to address these knowledge gaps to generate policy and support practice for dying children in Canada.

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

February List 2024

Collection

Citation

Lamb CM; Ramer K; Amodu O; Groenenboom K, “The meaning of dying and death for children, their carers, and families: a scoping review,” Pediatric Palliative Care Library, accessed May 18, 2024, https://pedpalascnetlibrary.omeka.net/items/show/19489.