Looking into the life of technology-dependent children and their caregivers in Korea: lifting the burden of too many responsibilities

Abstract

Background The 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. Methods This 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. Results A 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). Conclusions Caregivers 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.

A parent first: Exploring the support needs of parents caring for a child with medical complexity in Australia

“…Given this level of heterogeneity, it is not surprising that families raising these children face issues that are multifaceted. A large body of research over a considerable time frame and in multiple contexts demonstrates the impact on parents, and the frequency of unmet parental support needs (Choi et al, 2020;Shudy et al, 2006). Increasing attention has been paid to the specific burdens parents experience, such as financial and social hardships (Thomson et al, 2016), the time demands (McCann et al, 2012) and sleep disturbance (Angelhoff et al, 2015).…”

Proficiency evaluation of simulation education on the entire tracheal suctioning process using a motion capture system and a catheter control sensing device

“…The number of children (0-19 years old) requiring technology-dependent, specific home-based healthcare techniques, such as tracheal suctioning, tracheostomy, and percutaneous endoscopic gastrostomy, has doubled from 8,438 in 2007 to 19,712 in 2017 in Japan despite vast improvements in the survival rates of premature infants (Ministry of Health, Labour and Welfare, 2020). An analogous trend was also observed internationally (Breneol et al, 2019;Choi et al, 2020). The demand for registered community nurses is increasing to provide technical advice to family caregivers in addition to the employment of hygienic, accurate, and comfortable healthcare techniques (Nageswaran et al, 2017;Sobotka et al, 2019;Choi et al, 2020;Colley et al, 2020a;Whalen et al, 2020).…”

“…An analogous trend was also observed internationally (Breneol et al, 2019;Choi et al, 2020). The demand for registered community nurses is increasing to provide technical advice to family caregivers in addition to the employment of hygienic, accurate, and comfortable healthcare techniques (Nageswaran et al, 2017;Sobotka et al, 2019;Choi et al, 2020;Colley et al, 2020a;Whalen et al, 2020).…”

Healthcare service use and medical outcomes of tracheostomy-dependent children: a nationwide study

“…A survey reported that caregivers of medical technology-dependent children in Korea had substantial problems taking care of their sick children and managing medical devices at home. 22 Studies have urged the establishment of a well-equipped environment and a partnership between hospitals and community care systems for successful tracheostomy management after discharge. 23 24 To provide proper care after discharge, a referral system and home healthcare services must be developed throughout the country.…”