Abstract
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).
Keywords
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Article info
Publication history
Published online: July 25, 2022
Accepted:
July 8,
2022
Received in revised form:
May 16,
2022
Received:
December 23,
2021
Identification
Copyright
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