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

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Title: Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.
Authors: Mayland, Catriona R, Sunderland, Katy A, Cooper, Matthew, Taylor, Paul, Powell, Philip A, Zeigler, Lucy, Cox, Vicki, Gilman, Constance, Turner, Nicola, Flemming, Kate, Fraser, Lorna K
Source: Palliative Medicine. Sep2022, Vol. 36 Issue 8, p1186-1206. 21p.
Subjects: Psychology information storage & retrieval systems, CINAHL database, Terminal care, Research evaluation, Medical information storage & retrieval systems, Research methodology evaluation, Systematic reviews, Psychometrics, Death, MEDLINE
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. [ABSTRACT FROM AUTHOR]
Copyright of Palliative Medicine is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)
Database: Psychology and Behavioral Sciences Collection
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  Data: Measuring quality of dying, death and end-of-life care for children and young people: A scoping review of available tools.
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  Data: <searchLink fieldCode="AR" term="%22Mayland%2C+Catriona+R%22">Mayland, Catriona R</searchLink><br /><searchLink fieldCode="AR" term="%22Sunderland%2C+Katy+A%22">Sunderland, Katy A</searchLink><br /><searchLink fieldCode="AR" term="%22Cooper%2C+Matthew%22">Cooper, Matthew</searchLink><br /><searchLink fieldCode="AR" term="%22Taylor%2C+Paul%22">Taylor, Paul</searchLink><br /><searchLink fieldCode="AR" term="%22Powell%2C+Philip+A%22">Powell, Philip A</searchLink><br /><searchLink fieldCode="AR" term="%22Zeigler%2C+Lucy%22">Zeigler, Lucy</searchLink><br /><searchLink fieldCode="AR" term="%22Cox%2C+Vicki%22">Cox, Vicki</searchLink><br /><searchLink fieldCode="AR" term="%22Gilman%2C+Constance%22">Gilman, Constance</searchLink><br /><searchLink fieldCode="AR" term="%22Turner%2C+Nicola%22">Turner, Nicola</searchLink><br /><searchLink fieldCode="AR" term="%22Flemming%2C+Kate%22">Flemming, Kate</searchLink><br /><searchLink fieldCode="AR" term="%22Fraser%2C+Lorna+K%22">Fraser, Lorna K</searchLink>
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  Data: 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. [ABSTRACT FROM AUTHOR]
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  Data: <i>Copyright of Palliative Medicine is the property of Sage Publications Inc. and its content may not be copied or emailed to multiple sites without the copyright holder's express written permission. Additionally, content may not be used with any artificial intelligence tools or machine learning technologies. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract.</i> (Copyright applies to all Abstracts.)
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