School of Nursing, Ibaraki Christian University, Hitachi, Japan.
Ibaraki Children's Hospital, Mito, Japan.
Pediatr Int. 2022 Jan;64(1):e15006. doi: 10.1111/ped.15006.
The aim of this study was to explore and clarify the healthcare service utilization of children dependent on medical technology (CMT), and the parental health-related quality of life (HRQOL).
Participants recruited the primary caregivers of children with medical complexity (CMC), identified using an existing registry of raising CMC aged 1-20 years and receiving reimbursements for their home-based medical care at a children's hospital. We used an exploratory cross-sectional study design and sent questionnaires to 286 parents. To clarify the characteristics of CMT and families, we compared two groups on demographics of children's and families', service utilization and parental HRQOL. The participants were categorized into the CMT and children with chronic conditions (CCC) groups, based on whether they required ventilator, suctioning, or tube feeding; had tracheostomy, or gastrostomy; or had central line or clean intermittent catheterization.
Of the 95 children selected, 31 were CMT. The participants' characteristics, service utilization, and the parents' HRQOL were compared between the two groups. Compared to CCC, CMT were more likely to be younger, more unstable, more demanding of their caregiver's time, caused greater reductions in their caregiver's sleep time, caused heavier caregiver burden, had higher rates of unexpected hospital admissions and emergency visits, required greater care coordination, and exhibited a higher health service utilization. Parents of CMT were found to have poor mental and physical health in HRQOL.
Improving the outcomes of parents caring for CMT requires high quality healthcare services, especially respite care for the parents, and care coordination.
本研究旨在探讨和阐明对医疗技术依赖儿童（CMT）的医疗服务利用情况，以及其父母的健康相关生活质量（HRQOL）。
研究对象招募了患有医疗复杂性（CMC）的儿童的主要照顾者，这些儿童是通过一家儿童医院为其家庭医疗护理提供报销的现有复杂儿童养育者登记处确定的。我们使用了探索性的横断面研究设计，并向 286 名父母发送了调查问卷。为了阐明 CMT 和家庭的特征，我们比较了两组儿童和家庭的人口统计学特征、服务利用情况和父母的 HRQOL。根据儿童是否需要呼吸机、吸痰或管饲、是否有气管造口术、胃造口术、中心静脉置管或间歇性清洁导尿，将参与者分为 CMT 和患有慢性疾病（CCC）组。
在选定的 95 名儿童中，有 31 名是 CMT。比较了两组的参与者特征、服务利用情况和父母的 HRQOL。与 CCC 相比，CMT 更有可能年龄较小、更不稳定、对照顾者的时间要求更高、导致照顾者睡眠时间减少更多、导致照顾者负担更重、意外住院和急诊就诊率更高、需要更多的护理协调、并且健康服务利用率更高。CMT 的父母在 HRQOL 中表现出较差的心理健康和身体健康。
为了改善照顾 CMT 的父母的结果，需要高质量的医疗保健服务，特别是为父母提供暂息护理和护理协调。
