Impact of respite care on health-related quality of life in children with medical complexity: A parent proxy evaluation.

PURPOSE: 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.

DESIGN AND

METHODS

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.

RESULTS

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."

CONCLUSIONS

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.

PRACTICE IMPLICATIONS: 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).