Chronically ill children's participation and health outcomes in shared decision-making: a scoping review.

Content Provider	Europe PMC
Author	Wijngaarde, R. O. Hein, I. Daams, J. Van Goudoever, J. B. Ubbink, D. T.
Abstract	Based on the United Nations Conventions on the Rights of the Child (CRC), it is a child’s right to participate in all matters concerning its wellbeing. Little is known about chronically and/or critically ill children’s participation in pediatric shared decision-making (SDM). We explored medical literature to see if and how these children participate in pediatric SDM. We searched relevant medical databases published between January 2008 and January 2020 for studies targeting children aged 4–18 years old, suffering from a chronic and/or critical disease. We found 9 relevant studies. SDM interventions mostly used were decision aids (n=8), questionnaires for caretakers/parents and children (n=4), and a SDM toolkit (n=2). Perceived involvement in SDM and knowledge increased amongst children, adolescents, and caretakers following these interventions. Decisional conflict measured using the 0–100 point DCS scale (higher scores indicate more decisional conflict) was reduced by 15.9 points in one study (p<0.01) and 17.8 points in another (95%CI: 13.3–22.9). Lower scores were associated with higher satisfaction with the decision aid by children, caretakers, and clinicians.Conclusion: Stakeholders should advocate initiatives to facilitate a child’s participation preferences regarding pediatric SDM since decision support tools help chronically ill children to be more involved in SDM as they increase the children’s knowledge and satisfaction and reduce decisional conflicts.What is Known:• Decision aids can help improve participation, knowledge, satisfaction, and health outcomes.• Quality and consistency of the information exchange impact quality and outcome of SDM.What is New:• Depending on a child’s age, evolving capacities, and communication and participation preferences, more evidence is needed on which tools are suitable for chronically ill children to ensure their preferred participation in pediatric SDM.• Pediatricians adopt healthcare SDM tools and techniques that do not always take into account that a child’s right to participate in pediatric SDM including the tendency to use interventions that are not specifically designed for pediatrics.
ISSN	03406199
Journal	European Journal of Pediatrics
Volume Number	180
PubMed Central reference number	PMC8285312
Issue Number	8
PubMed reference number	33821341
e-ISSN	14321076
DOI	10.1007/s00431-021-04055-6
Language	English
Publisher	Springer Berlin Heidelberg
Publisher Date	2021-04-05
Publisher Place	Berlin/Heidelberg
Access Restriction	Open
Rights License	Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made. The images or other third party material in this article are included in the article's Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article's Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by/4.0/. © The Author(s) 2021
Subject Keyword	Shared decision-making Decision aids Self-determination Patient-centered care Triadic information exchange Chronic illness
Content Type	Text
Resource Type	Article
Subject	Pediatrics, Perinatology and Child Health