Developing a Parent-Focused Decision Aid to Promote Child-Inclusive Shared Decision-Making in Pediatric Oral Immunotherapy: Pragmatic Exploratory Feasibility Study

Sep 29, 2026

Upload by hdkawk

A pragmatic exploratory feasibility study developed and tested a culturally adapted, paper-based decision aid for Japanese parents making choices about pediatric oral immunotherapy for food allergy. Shared decision-making is valued yet underimplemented in Japan, and most decision aids target adults without explicitly incorporating children’s views. Iterative alpha testing produced a tool for parents, with parent questionnaires and child QoL measures, plus interviews. Results showed decreased decisional conflict and improved values clarity, alongside a reported shift toward family partnering.

LanguageEnglish

CategoryResearch & Report

FormatPDF

Pages16

Reading Time40 min

AccessFree to download

Abstract

Background

Objective

Methods

Results

Conclusions

Introduction

Background

Shared Decision-Making

JOURNAL OF PARTICIPATORY MEDICINE Hayama et al Original Paper Developing a Parent-Focused Decision Aid to Promote Child-Inclusive Shared Decision-Making in Pediatric Oral Immunotherapy: Pragmatic Exploratory Feasibility Study | Junko Hayama1 , PhD; Kanako Yamamoto2 , PhD; Kota Hirai3 , MD, PhD; Koichi Yamaguchi4 , MD, PhD; Hiroyuki Mochizuki4 , MD, PhD; Kazuhiro Nakayama2 , PhD | | --- | | 1Department of Nursing, School of Medicine, Tokai University, Isehara, Kanagawa, Japan 2Graduate School of Nursing Science, St. Luke’s International University, Tokyo, Japan 3Department of Pediatrics, St. Marianna University School of Medicine, Kanagawa, Japan 4Department of Pediatrics, Tokai University School of Medicine, Kanagawa, Japan
Corresponding Author:
Junko Hayama, PhD Department of Nursing
School of Medicine, Tokai University
143 Shimokasuya
Isehara, Kanagawa 259-1193 Japan
Phone: 81 463 90 2084
Email: [jhayama10@tokai.ac.jp](jhayama10@tokai.ac.jp)
Abstract | Background: Shared decision-making is increasingly valued worldwide in pediatric care; nonetheless, its application in Japanese clinical practice remains in its early stages, particularly in areas with substantial medical uncertainty, such as food allergy (FA) management. Although oral immunotherapy is a promising option for children with FA, its long-term effectiveness and safety remain under evaluation, providing families with limited evidence to navigate emotionally complex decisions. Despite this clinical uncertainty, decision aids (DAs) are beneficial for organizing information and supporting patients and families in making value-congruent choices. Involving children in these decisions is increasingly recognized as ethically and developmentally appropriate. DAs clarify treatment options and promote informed collaborative decisions. However, most DAs target adult users and do not explicitly encourage engagement with children’s views. Objective: This study aimed to develop a culturally adapted DA for Japanese parents by considering their children’spreferences and perspectives. Methods: A paper-based DA was developed through iterative alpha testing and finalized by a multidisciplinary team. In total, 9 parents of children eligible for oral immunotherapy participated in this study and received the DA. Although intended for parents, the DA was structured to prompt reflection on the children’s involvement in decision-making. Parents completed structured questionnaires before and 1 week after receiving the DA to assess uncertainty, anxiety, and the burden of FA management. A total of 4 children completed the quality-of-life (QoL) questionnaire. Subsequently, all 9 parents and 4 children participated in semistructured interviews. Parents discussed how they used the DA, their perceptions of its clarity, and their interest in involving their children in decision-making. The children shared their thoughts about participating indecision-making. Results: All 9 parents read the DA and completed the follow-up assessment (100% retention rate) . Among them, 4 children participated in pediatric QoL assessments and interviews. Parents’ Decisional Conflict Scale scores significantly decreased from 58.3 (SD 29.9) at baseline to 26.7 (SD 24.1) postintervention (t8=2.65; P= .03) . The values clarity subscale also significantly declined, from 73.1 (SD 30.6) to 25.9 (SD 26.2) (t8=4.50; P= .002) . No significant changes were observed in parental anxiety and QoL. Overall, 7 of the 9 parents explained the treatment options to their child, and 6 reported actively seeking their child’s feelings. The interview results suggested that the DA was associated with a shift in the family dynamic“from protecting to partnering.” [https://jopm.jmir.org/2026/1/e77782](https://jopm.jmir.org/2026/1/e77782) J Particip Med 2026 | vol. 18 | e77782 | p. 1 (page number not for citation purposes) JOURNAL OF PARTICIPATORY MEDICINE Hayama et al Conclusions: Culturally adapted D

FAQs

What was the purpose of developing the parent-focused decision aid in this study?

To create a culturally adapted decision aid for Japanese parents that considers their children’s preferences and perspectives and supports child-inclusive shared decision-making in pediatric oral immunotherapy.

How was the decision aid evaluated in participants?

A paper-based decision aid was developed through iterative alpha testing. Nine parents completed structured questionnaires before and one week after using it, and four children completed a quality-of-life questionnaire; all participants then took part in semistructured interviews.

What were the key outcomes reported after using the decision aid?

Parents’ decisional conflict scores significantly decreased, and the values clarity subscale also showed a significant decline. Anxiety and quality-of-life did not show significant changes, while many parents reported explaining options and seeking their child’s feelings.

Sep 29, 2026

Upload by hdkawk