Abstract
BackgroundThe number of technology-dependent children (TDC) is increasing in South Korea, but available healthcare services after their discharge are poor. This study aimed to examine how TDC and caregivers live at home and identify their difficulties and needs regarding home care with few services to support them.MethodsThis cross-sectional study was conducted in a tertiary hospital for children in South Korea. A self-reported questionnaire was completed by primary caregivers of TDC who were younger than 19 years and had been dependent on medical devices for more than 3 months. Technologies included home mechanical ventilation, oxygen supplementation, suction equipment, enteral feeding tube, and home total parenteral nutrition. Patterns of healthcare use and home care of TDC and caregivers’ perception toward child were assessed.ResultsA total of 74 primary caregivers of TDC completed a self-reported questionnaire. About 60% children were aged under 5 years. There were 31.1% children who required both respiratory and nutritional support. On average, caregivers took care of a child for 14.4 (±6.1) hours, slept for 5.6 (±1.6) hours, and spent 2.4 h per day on personal activities. Children used hospital services for 41.3 (±45.6) days in 6 months, and most (78.1%) were transported through private car/ambulance. Participants (75.6%) reported taking more than an hour to get to the hospital. More than 80% of caregivers responded that child care is physically very burdensome. The only statistically significant relationships was between economic status and financial burden (p = 0.026).ConclusionsCaregivers of TDC reported having significant time pressure regarding childcare-related tasks, insufficient time for personal activities, and inefficient hospital use because of inadequate medical services to support them in South Korea. Thus, it is necessary to support caregivers and develop a home care model based on current medical environment.
Highlights
The number of technology-dependent children (TDC) is increasing in South Korea, but available healthcare services after their discharge are poor
According to the national data in 2016, the prevalence of children with home mechanical ventilation (HMV) in South Korea is estimated at 4.4 per 100,000 for those aged under 19 years, which is similar to other countries [7]
Healthcare services for home care of TDC are poor in South Korea— there are no primary care physicians (PCPs) in the healthcare system [8], and no community- or homebased medical service for TDC and their families
Summary
The number of technology-dependent children (TDC) is increasing in South Korea, but available healthcare services after their discharge are poor. With the advances in pediatric critical care and technology, number of children who require some form of technological assistance to compensate for impairment in vital function is increasing [1, 2]. These technology-dependent children (TDC) require an extensive range of healthcare services including preventive, specialty, emergent, and acute care services [1]. There is an activity assistance service for the disabled, this service only provides non-medical support and is only available for those older than 6 years of age
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