Dataset Information

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

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.

SUBMITTER: Mayland CR

PROVIDER: S-EPMC9446433 | biostudies-literature | 2022 Sep

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

Mayland Catriona R CR Sunderland Katy A KA Cooper Matthew M Taylor Paul P Powell Philip A PA Zeigler Lucy L Cox Vicki V Gilman Constance C Turner Nicola N Flemming Kate K Fraser Lorna K LK

Palliative medicine 20220801 8

<h4>Background</h4>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.<h4>Aim</h4>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 to ...[more]

PMID: 35915561

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Project description:BackgroundAppropriate and well-resourced medical internship training is important to ensure psychological health and well-being of doctors in training and also to recruit and retain these doctors. However, most reviews focused on clinical competency of medical interns instead of the non-clinical aspects of training. In this scoping review, we aim to review what tools exist to measure medical internship experience and summarize the major domains assessed.MethodThe authors searched MEDLINE, Embase, PsycINFO, ERIC, and the Cochrane Library for peer-reviewed studies that provided quantitative data on medical intern's (house officer, foundation year doctor, etc.) internship experience and published between 2000 and 2019. Three reviewers screened studies for eligibility with inclusion criteria. Data including tools used, key themes examined, and psychometric properties within the study population were charted, collated, and summarized. Tools that were used in multiple studies, and tools with internal validity or reliability assessed directed in their intern population were reported.ResultsThe authors identified 92 studies that were included in the analysis. The majority of studies were conducted in the US (n = 30, 32.6%) and the UK (n = 20, 21.7%), and only 14 studies (15.2%) were conducted in low- and middle-income countries. Major themes examined for internship experience included well-being, educational environment, and work condition and environment. For measuring well-being, standardized tools like the Maslach Burnout Inventory (for measuring burnout), Patient Health Questionnaire-9 (depression), General Health Questionnaire-12 or 30 (psychological distress) and Perceived Stress Scale (stress) were used multiple times. For educational environment and work condition and environment, there is a lack of widely used tools for interns that have undergone psychometric testing in this population other than the Postgraduate Hospital Educational Environment Measure, which has been used in four different countries.ConclusionsThere are a large number of tools designed for measuring medical internship experience. International comparability of results from future studies would benefit if tools that have been more widely used are employed in studies on medical interns with further testing of their psychometric properties in different contexts.

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Dataset Information

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

Background

Aim

Design

Data sources

Results

Conclusions

Publications

Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.

Similar Datasets

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