Chronically ill children\u2019s participation and health outcomes in shared decision-making: a scoping review

R O Wijngaarde,J B Van Goudoever,D T Ubbink,I Hein,J Daams

doi:10.1007/s00431-021-04055-6

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.

Highlights

Based on the United Conventions on the Rights of the Child, it is a child’s human right to participate in all matters concerning its wellbeing
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 Shared decision-making (SDM)
The children suffered from chronic disorders such as neuromuscular scoliosis, diabetes, asthma, juvenile inflammatory arthritis (JIA), obesity, and depression

Summary

Introduction

Based on the United Conventions on the Rights of the Child, it is a child’s human right to participate in all matters concerning its wellbeing. Shared decision-making (SDM) is a multi-step process that involves relationship-building between clinician and patient with the aim of sharing information, such as the patient values, recommended treatment options, and the risks and benefits of these options. After deliberation with the clinician, patients can express their preferred (non)treatment choice based on clinicians’ advice, available evidence, and their own personal views and beliefs [1–4]. Sometimes SDM interventions in the pediatric field do not target children [10]. If they do, available studies show a lack of knowledge on how to optimize communication with the child and how to optimize child participation in decision-making according to his or her own preferences [11–13]

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