Chairman Medical Incorporated Foundation Harutaka Kai Tokyo Medical and Dental University Tokyo, Japan
Background: The development of medical technology has raised an issue to reconsider the newly disabled children in a home care setting in Japan. While such children demand advanced medical care in their everyday lives, some of them do not have intellectual disability and have level of bodily function. Caregivers, especially mothers, tend to take more responsibility for providing care due to the child’s particular condition. Caregivers are always aware of the subject, take great care to avoid risk, and deal with the risk shortly after it happens. However, there are no criteria in place for the assessment of care burden for children who require advanced medical care, despite being highly functional.
Objective: This study aims to develop a methodology to assess the care burden.
Design/Methods: (1) ‘24-hour time study’ (quantitative approach) To understand the standard of medical care, mainly provided by mothers at home, we conducted 24-hour time study. First, we filmed seven children in six families who needed medical care at home. Based on the results, we developed a self-reported questionnaire aimed for conducting a large scale 24-hour time study. We succeeded in conducting the time study with 1,206 families.
(2) Integration of qualitative and quantitative approaches We interviewed family caregivers and obtained additional data through filming to supplement the questionnaires.
Results: Using quantitative and qualitative approaches, the details of care and care burdens associated with the children were clarified for the first time. Conclusion(s): The findings in each survey provide supplemental explanations of the care burden each other.
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
.jpg "Hirotoshi Maeda, MD photo")