Mayland, C.R., Sunderland, K.A., Cooper, M. et al. (8 more authors) (2022) Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools. Palliative Medicine, 36 (8). pp. 1186-1206. ISSN 0269-2163
Abstract
Background: The circumstances and care provided at the end of a child’s life have a profound impact on family members. Although assessing experiences and outcomes during this time is challenging, healthcare professionals have a responsibility to ensure high quality of care is provided.
Aim: To identify available tools which measure the quality of dying, death and end-of-life care for children and young people; describe the content, and data on validity and reliability of existing tools.
Design: Scoping review was conducted following the Arksey and O’Malley methodological framework.
Data sources: Four electronic databases (MEDLINE, EMBASE, CINAHL and PsycINFO) and grey literature were searched for studies published in English (January 2000–June 2021). A review of reference lists and citation searching was also undertaken. Tools needed to include a focus on the ‘dying’ phase of illness (defined as the last month of life).
Results: From 2078 articles, a total of 18 studies, reporting on 11 tools were identified. All tools were completed by primary caregivers or healthcare professionals as ‘proxy’ assessments; all except one was undertaken after death. Question items about quality of life and preparation for death were found in all tools; items relating to cultural aspects of care, grief and financial costs were less common. Only 6/11 had undergone psychometric testing within a paediatric palliative care setting.
Conclusions: Future research should include ways to adapt, refine and improve existing tools. Assessing their wider application in different clinical and cultural settings and conducting further psychometric assessment represent areas of focus.
Metadata
Item Type: | Article |
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Authors/Creators: |
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Copyright, Publisher and Additional Information: | © The Author(s) 2022. This is an open access article under the terms of the Creative Commons Attribution License (CC-BY 4.0), which permits unrestricted use, distribution and reproduction in any medium, provided the original work is properly cited. |
Keywords: | Child, adolescent, palliative care, quality of death, quality of dying, terminal care, tools, review |
Dates: |
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Institution: | The University of Leeds |
Academic Units: | The University of Leeds > Faculty of Medicine and Health (Leeds) > School of Medicine (Leeds) > Leeds Institute of Health Sciences (Leeds) > Academic Unit of Primary Care (Leeds) |
Depositing User: | Symplectic Publications |
Date Deposited: | 29 Jan 2025 12:01 |
Last Modified: | 29 Jan 2025 16:01 |
Published Version: | http://sage.cnpereading.com/paragraph/article/?doi... |
Status: | Published |
Publisher: | SAGE Publications |
Identification Number: | 10.1177/02692163221105599 |
Related URLs: | |
Open Archives Initiative ID (OAI ID): | oai:eprints.whiterose.ac.uk:222520 |