Developing a Parent-Focused Decision Aid to Promote Child-Inclusive Shared Decision-Making in Pediatric Oral...

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.

This study aimed to develop a culturally adapted DA for Japanese parents by considering their children's preferences and perspectives.

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 in decision-making.

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."

Culturally adapted DAs appear practical and acceptable to Japanese families when making pediatric FA treatment choices. Facilitating parent-child dialogue may promote more inclusive decision-making. Nevertheless, further research with larger samples and longer follow-up periods is warranted to confirm these findings and refine the tool.