Characteristics of child development in the context of serious illness: a scoping review

Abstract Background Despite evidence on the benefits for including children in their own (palliative) care, studies show that children are not sufficiently involved nor are their preferences sufficiently elicited in a developmentally appropriate manner. The aim of this scoping review is to provide a...

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Main Authors: Anne van Driessche, Leonie La Rondelle, Paul A. Boelen, Julie Brunetta, Marijke C. Kars, Mariken Spuij, Sanne L. Nijhof, Jurrianne C. Fahner
Format: Article
Language:English
Published: BMC 2025-05-01
Series:BMC Palliative Care
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Online Access:https://doi.org/10.1186/s12904-025-01751-0
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author Anne van Driessche
Leonie La Rondelle
Paul A. Boelen
Julie Brunetta
Marijke C. Kars
Mariken Spuij
Sanne L. Nijhof
Jurrianne C. Fahner
author_facet Anne van Driessche
Leonie La Rondelle
Paul A. Boelen
Julie Brunetta
Marijke C. Kars
Mariken Spuij
Sanne L. Nijhof
Jurrianne C. Fahner
author_sort Anne van Driessche
collection DOAJ
description Abstract Background Despite evidence on the benefits for including children in their own (palliative) care, studies show that children are not sufficiently involved nor are their preferences sufficiently elicited in a developmentally appropriate manner. The aim of this scoping review is to provide an overview of characteristics of child development in the context of serious illness. Methods A scoping review was performed using methods from Arksey and O’Malley and the Joanna Briggs Institute. A structured literature search was conducted in four databases: Medline, Embase, Psychinfo and CINAHL. Articles were included until October 2022. Thematic analysis was performed to present domains and key factors influencing child development. Results We selected 24 out of 11,246 articles. We found different characteristics describing the ongoing development of seriously ill children in early to middle childhood, early adolescence, and middle to late adolescence. Key themes were: psychological/emotional aspects, general cognitive aspects, social aspects, coping strategy, conceptualization of illness, conceptualization of death, and communication about their illness. Several accelerators of ongoing development were found (e.g. cortical maturation, prior medical experience, social experience with adults) and several decelerators (e.g. stress, hospital admission, avoidance of illness-related communication in the family). Conclusion Our review highlights essential aspects to consider when discussing illness and healthcare preferences with children at various developmental stages. However, our findings also underscore a significant gap in understanding the factors that impact the development of children with a serious illness. It is recommended to monitor development throughout the illness trajectory to gather more evidence and utilize this information to support the child’s engagement in their own healthcare in a developmentally appropriate way.
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spelling doaj-art-eb0938e3a9054280a2add2cd5c8d47092025-08-20T03:09:21ZengBMCBMC Palliative Care1472-684X2025-05-0124111310.1186/s12904-025-01751-0Characteristics of child development in the context of serious illness: a scoping reviewAnne van Driessche0Leonie La Rondelle1Paul A. Boelen2Julie Brunetta3Marijke C. Kars4Mariken Spuij5Sanne L. Nijhof6Jurrianne C. Fahner7End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) & Ghent UniversityCenter of Expertise in Palliative Care Utrecht, Julius Center of Health and Primary Care, University Medical Center Utrecht, Utrecht UniversityDepartment of Clinical Psychology, Faculty of Social and Behavioral Sciences, Utrecht UniversityJulius Center of Health and Primary Care, University Medical Center Utrecht, Utrecht UniversityCenter of Expertise in Palliative Care Utrecht, Julius Center of Health and Primary Care, University Medical Center Utrecht, Utrecht UniversityChild and Adolescent Studies, Utrecht UniversityDepartment of Pediatrics, Wilhelmina Children’s Hospital, University Medical Center, Utrecht UniversityDepartment of Pediatrics, Wilhelmina Children’s Hospital, University Medical Center, Utrecht UniversityAbstract Background Despite evidence on the benefits for including children in their own (palliative) care, studies show that children are not sufficiently involved nor are their preferences sufficiently elicited in a developmentally appropriate manner. The aim of this scoping review is to provide an overview of characteristics of child development in the context of serious illness. Methods A scoping review was performed using methods from Arksey and O’Malley and the Joanna Briggs Institute. A structured literature search was conducted in four databases: Medline, Embase, Psychinfo and CINAHL. Articles were included until October 2022. Thematic analysis was performed to present domains and key factors influencing child development. Results We selected 24 out of 11,246 articles. We found different characteristics describing the ongoing development of seriously ill children in early to middle childhood, early adolescence, and middle to late adolescence. Key themes were: psychological/emotional aspects, general cognitive aspects, social aspects, coping strategy, conceptualization of illness, conceptualization of death, and communication about their illness. Several accelerators of ongoing development were found (e.g. cortical maturation, prior medical experience, social experience with adults) and several decelerators (e.g. stress, hospital admission, avoidance of illness-related communication in the family). Conclusion Our review highlights essential aspects to consider when discussing illness and healthcare preferences with children at various developmental stages. However, our findings also underscore a significant gap in understanding the factors that impact the development of children with a serious illness. It is recommended to monitor development throughout the illness trajectory to gather more evidence and utilize this information to support the child’s engagement in their own healthcare in a developmentally appropriate way.https://doi.org/10.1186/s12904-025-01751-0Serious illnessChild developmentCognitive aspectsPediatric advance care planningInvolvementDecision-making
spellingShingle Anne van Driessche
Leonie La Rondelle
Paul A. Boelen
Julie Brunetta
Marijke C. Kars
Mariken Spuij
Sanne L. Nijhof
Jurrianne C. Fahner
Characteristics of child development in the context of serious illness: a scoping review
BMC Palliative Care
Serious illness
Child development
Cognitive aspects
Pediatric advance care planning
Involvement
Decision-making
title Characteristics of child development in the context of serious illness: a scoping review
title_full Characteristics of child development in the context of serious illness: a scoping review
title_fullStr Characteristics of child development in the context of serious illness: a scoping review
title_full_unstemmed Characteristics of child development in the context of serious illness: a scoping review
title_short Characteristics of child development in the context of serious illness: a scoping review
title_sort characteristics of child development in the context of serious illness a scoping review
topic Serious illness
Child development
Cognitive aspects
Pediatric advance care planning
Involvement
Decision-making
url https://doi.org/10.1186/s12904-025-01751-0
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