Problems and Possibilities of Technology-Dependent Children with Long-term Home Ventilation: 10 Years of Implementation of Home Medical Care in Japan

Abstract Purpose Since the establishment of Japan’s publicly-supported pediatric home medical care (PHMC) system in 2012, the number of technology-dependent children (TDC) who are supported by PHMC, particularly with respiratory devices, keeps increasing. We aimed to study the problems of the care-burden of families who use this system in relation to TDC’s mobility and recovery process, with a focus on respiratory supports. Methods Questionnaire survey data were collected from 1,162 caregivers of TDC from 2018 to 2020. In each medical procedure, the correlation of TDC’s motor function level with care burden (Care Time (CT) & Self-rated Care Burden (SCB)) was analyzed by using correlation analysis. In 15 households caregivers’ activities were monitored to elucidate the problems of the care objectively. The follow-up study was conducted on a subpopulation whose medical records were accessible. Results Analysis of 418 cases showed that care-burden increased with improvements in the children’s motor ability in tracheostomy, or remained the same in other procedures. A follow-up study in 262 cases showed that these TDC with high mobility aged 1–8 had a high potential to be weaned from medical devices. Conclusion TDC who gain motor ability during the course of PHMC has more potential to be released from their respiratory devices and for better daily life. However, when they become mobile, social support is cut off despite the increase in care-burden for mobile TDC. It is important to maintain social support for TDC on the recovering mobile stage.