624 - National survey results of care burden: focusing on 567 families whose children require advanced and complex medical care in domiciliary settings in Japan
Chairman Medical Incorporated Foundation Harutaka Kai Tokyo Medical and Dental University Tokyo, Japan
Background: The number of children discharged from the Neonatal Intensive Care Unit (NICU) with a ventilator has increased 17-fold over the past 14 years in Japan. This has resulted in an increase in the numbers of children requiring advanced and complex medical care in domiciliary settings. This novel Japanese study assessed the medical care provided at home and conducted a survey to determine the amount of support needed.
Objective: Two hypotheses are explored: A particularly heavy care burden is placed on the child’s mother; and that there is inadequate public support for the child’s needs.
Design/Methods: In the pilot study, we shot a video of medical care at home for the children. Up to 8 cameras were set and simultaneous shootings were performed from different angles. Based on the results, a self-reported questionnaire survey method was developed. The survey was sent out to 1,206 people and 567 people responded. The collected data was analyzed in terms of the amount of care given and the degree of risk.
Results: We revealed that there are two factors impacting on medical care burdens: the time required to complete the child’s care, and the risks from treatments and care, provided at home, which are particular to the child’s disabilities. With the medical care required for tube feeding, both the amount of care and the risk increased due to the improvement of body function. Conclusion(s): With the medical care required for tracheostomy and ventilator, the risk increased due to the improvement of body function.
Authors/Institutions: Hirotoshi Maeda, Medical Incorporated Foundation Harutaka Kai, Tokyo, , Japan; Izumi Iikura, Medical Incorporated Foundation Harutaka Kai, Tokyo, , Japan; Masahiro Ikari, Medical Incorporated Foundation Harutaka Kai, Tokyo, , Japan; Ikuko Tomomatsu, TOMO Lab LLC, Tokyo, , Japan
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