1. Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation.
- Author
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Suzuki, Seigo and Kamibeppu, Kiyoko
- Abstract
This study examined the impact of respite care received by children with medical complexity (CMC) on their health-related quality of life (HRQOL). We hypothesized that out-of-home respite care would increase both opportunities to engage in activities and participation with non-family members and help with acquiring autonomy and social skills. This cross-sectional study of CMC aged between 8 and 18 years living at home used a web-based questionnaire survey that parents living with the target CMC answered for proxy evaluation of CMC's HRQOL (KIDSCREEN-27). We asked 3142 parents to participate in the study through 237 special-needs schools throughout Japan. Path analysis was used to estimate the variation in each aspect of HRQOL with respite care time of in-home care services, day care services, short-stay services, and school time. We analyzed the responses from 618 parents of CMC. The results showed that respite care by day care services and special-needs schools increased "physical well-being," "psychological well-being," and "peers and social support," which are components of the HRQOL. Furthermore, respite care at schools had an impact on "school environment." Respite care provided by special-needs schools and day care services has implications not only in terms of relief for caregivers but also in improving the HRQOL of CMC. Nurses can provide respite care that does not require parental accompaniment at school or day care facilities, which can lead to CMC's involvement in fostering autonomy and social skills. (249/250 words). [ABSTRACT FROM AUTHOR]
- Published
- 2022
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