Healthcare for children depend on medical technology and parental quality of life in Japan

BACKGROUND: 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). METHODS: 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. RESULTS: 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. CONCLUSIONS: Improving the outcomes of parents caring for CMT requires high quality healthcare services, especially respite care for the parents, and care coordination.