Presentation Information
[P-22-05]Co-Production of a “22q Notebook” in Japan for individuals with 22q11.2 deletion syndrome
*Yusuke Takahashi1, Akiko Kanehara1, Etsuko Fukaya1,2, Miho Tanaka1, Tomoko Ogawa2, Kouta Sasaki1,2, Yosuke Kumakura1, Sho Yagishita3, Kiyoto Kasai1,2 (1.Department of Neuropsychiatry, The University of Tokyo Hospital(Japan), 2.Department of Child psychiatry, The University of Tokyo Hospital(Japan), 3.Department of Structural Physiology, Center for Disease Biology and Integrative Medicine, Graduate School of Medicine, The University of Tokyo(Japan))
Keywords:
22q11.2 deletion syndrome,Co-Production,Shared Decision Making,Compartmentalization
22q11.2 deletion syndrome is the most prevalent chromosome microdeletion syndrome. It combines congenital heart disease, cleft palate, immune deficiency and other multisystem anomalies, and patients frequently have intellectual disability. From childhood into adolescence many individuals develop anxiety disorders or schizophrenia-spectrum psychosis.
Because the care across medicine, education and social welfare is compartmentalized, agencies often fail to share information properly. Families are forced to repeat painful histories, suffer from excessive emotional labour, and may acquire secondary trauma that discourages future help-seeking.
To improve the recovery process, we are building a portable record that compiles key, highly individualised information and supports shared decision-making among patients, relatives and professionals. Adapting Japan’s Maternal and Child Health Handbook, we redesign its content and layout to include diverse disabilities across the life course.
This implementation study is grounded in co-production. Since planning, we have collaborated with the family association, adopting their ideas to highlight personal strengths and detailed transition sections. A trauma-informed attitude that prioritizes the psychological safety of patients and families underpins every stage of the making process.
This presentation will show the trauma-informed co-production process. Moreover, aiming for wider application, we will describe the steps needed to achieve person-centered, lifespan care with complex disabilities.
Because the care across medicine, education and social welfare is compartmentalized, agencies often fail to share information properly. Families are forced to repeat painful histories, suffer from excessive emotional labour, and may acquire secondary trauma that discourages future help-seeking.
To improve the recovery process, we are building a portable record that compiles key, highly individualised information and supports shared decision-making among patients, relatives and professionals. Adapting Japan’s Maternal and Child Health Handbook, we redesign its content and layout to include diverse disabilities across the life course.
This implementation study is grounded in co-production. Since planning, we have collaborated with the family association, adopting their ideas to highlight personal strengths and detailed transition sections. A trauma-informed attitude that prioritizes the psychological safety of patients and families underpins every stage of the making process.
This presentation will show the trauma-informed co-production process. Moreover, aiming for wider application, we will describe the steps needed to achieve person-centered, lifespan care with complex disabilities.