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

  • Seigo Suzuki
    Affiliations
    Department of Family Nursing, Division of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan

    Department of Pediatric Nursing, Tokyo Medical University, 6-1-1 Shinjyuku, Shinjyuku-ku, Tokyo, 160-8402, Japan
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  • Kiyoko Kamibeppu
    Correspondence
    Corresponding author at: Department of Family Nursing, Division of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan.
    Affiliations
    Department of Family Nursing, Division of Health Sciences and Nursing, Graduate School of Medicine, The University of Tokyo, 7-3-1 Hongo, Bunkyo-ku, Tokyo 113-0033, Japan

    Master's & Doctoral Programs in Family Nursing, Graduate School of Health and Welfare Sciences, International University of Health and Welfare, 4-1-26 Akasaka, Minato-ku, Tokyo 107-8402, Japan
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      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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