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

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.

Keywords: Chronic illness; Decision aids; Patient-centered care; Self-determination; Shared decision-making; Triadic information exchange.

Fig. 1

Search flowchart child participation in shared decision-making

Fig. 2

Risk of bias summary: review authors’ judgment about each risk of bias item for each included study

Fig. 3

RoB overall scores. Risk of bias representing review authors’ judgments about each Rob item presented as percentages across all included studies

Fig. 4

Pre- and posttest differences as a result from decisional conflict scores

Fig. 5

Statistical significance of health outcomes after the use of decision aids in pediatric SDM. *1 TDM, treatment decision-making. *2 R&B, risks and benefits of treatment options.*3 AI, allergenic immunotherapy. *4 Combined child and parent scores.*5 Delayed time to exacerbation and decreased risk of exacerbation