The care burden for technology-dependent children with long-term home ventilation increases along with the improvement of their motor functions

Abstract

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 has been increasing. We expected care to become easier as TDC mobility increased. However, many family caregivers complained of the opposite, that the burden of care increased as TDC’s mobility increased. Therefore, we aimed to study the problems of the care burden of families in relation to the improvement of mobility of TDC with a focus on respiratory support. We conducted a survey among caregivers of TDC in two parts: a first survey was done between 2018 and 2020, and a follow-up survey in 2023. In each medical procedure, the correlation of TDC’s motor function level with care burden was analyzed by using correlation analysis. In 15 households, caregivers’ activities were monitored to elucidate the problems of the care objectively. The second survey was conducted in February 2023 in TDC whose medical records were available. 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 262/418 cases of this group showed that part of these TDC with high mobility aged 1–8, after passing through the mobile phase with increased burden of care, had a high potential to be weaned from medical devices. Conclusion: For TDC who acquire motor skills during PHMC, the burden of care for caregivers either increases or remains the same. It is important to maintain social support for TDC on the recovering mobile stage.What is Known:• There was no clear information on the care burden when TDC become mobile.What is New:• We did a qualitative study to show that the care burden increases when TDC become mobile.• In addition, mobike TDC showed a high potential for recovery.