Patient and Family Experiences and Support Needs in Pediatric Oral Immunotherapy Decision Making: A Multi-Stakeholder Qualitative Study in Japan

Oral immunotherapy (OIT) is an emerging treatment for pediatric food allergies; however, decision support strategies in Japan remain underdeveloped and culturally nuanced. This qualitative descriptive study explored the OIT decision-making experiences and support needs of children, their parents, and healthcare professionals. Fourteen participants were recruited from 2 tertiary medical centers in Tokyo and Kanagawa. Individual semi-structured interviews were conducted and thematically analyzed. Three core themes emerged: navigating complex choices by balancing safety, burden, and values; centering on the child's voice through participation, emotional awareness, and autonomy; and bridging gaps in informational, emotional, and peer support to enable shared decision making (SDM). A conceptual model grounded in the Ottawa Decision Support Framework and the Japanese cultural context illustrates how stakeholder-specific needs interact to shape the quality of decisions. This study highlights the rarely examined intersection of pediatric autonomy, clinical uncertainty, and sociocultural context. These findings underscore the need for culturally responsive and child-inclusive SDM strategies and tailored decision aids to support families navigating pediatric OIT.