{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,1]],"date-time":"2026-07-01T10:31:51Z","timestamp":1782901911598,"version":"3.54.5"},"reference-count":23,"publisher":"Springer Science and Business Media LLC","issue":"1","license":[{"start":{"date-parts":[[2023,10,16]],"date-time":"2023-10-16T00:00:00Z","timestamp":1697414400000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2023,10,16]],"date-time":"2023-10-16T00:00:00Z","timestamp":1697414400000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"funder":[{"name":"The Japanese Ministry of Health, Welfare, and Labor, Health and Labor Sciences Research Grants","award":["201817017A and 201918009A"],"award-info":[{"award-number":["201817017A and 201918009A"]}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Eur J Pediatr"],"abstract":"<jats:title>Abstract<\/jats:title>\n                  <jats:p>Since the establishment of Japan\u2019s publicly supported pediatric home medical care (PHMC) system in 2012, the number of technology-dependent children (TDC) who are supported by PHMC has been increasing. We expected care to become easier as TDC mobility increased. However, many family caregivers complained of the opposite, that the burden of care increased as TDC\u2019s mobility increased. Therefore, we aimed to study the problems of the care burden of families in relation to the improvement of mobility of TDC with a focus on respiratory support. We conducted a survey among caregivers of TDC in two parts: a first survey was done between 2018 and 2020, and a follow-up survey in 2023. In each medical procedure, the correlation of TDC\u2019s motor function level with care burden was analyzed by using correlation analysis. In 15 households, caregivers\u2019 activities were monitored to elucidate the problems of the care objectively. The second survey was conducted in February 2023 in TDC whose medical records were available. Analysis of 418 cases showed that care-burden increased with improvements in the children\u2019s motor ability in tracheostomy, or remained the same in other procedures. A follow-up study in 262\/418 cases of this group showed that part of these TDC with high mobility aged 1\u20138, after passing through the mobile phase with increased burden of care, had a high potential to be weaned from medical devices.<\/jats:p>\n                  <jats:p>\n                    \u00a0\n                    <jats:italic>Conclusion<\/jats:italic>\n                    : For TDC who acquire motor skills during PHMC, the burden of care for caregivers either increases or remains the same. It is important to maintain social support for TDC on the recovering mobile stage.\n                    <jats:table-wrap>\n                      <jats:table>\n                        <jats:tbody>\n                          <jats:tr>\n                            <jats:td colspan=\"2\">\n                              <jats:bold>What is Known:<\/jats:bold>\n                              <jats:italic>\u2022 There was no clear information on the care burden when TDC become mobile.<\/jats:italic>\n                            <\/jats:td>\n                          <\/jats:tr>\n                          <jats:tr>\n                            <jats:td colspan=\"2\">\n                              <jats:bold>What is New:<\/jats:bold>\n                              <jats:italic>\u2022 We did a qualitative study to show that the care burden increases when TDC become mobile.<\/jats:italic>\n                              <jats:italic>\u2022 In addition, mobike TDC showed a high potential for recovery.<\/jats:italic>\n                            <\/jats:td>\n                          <\/jats:tr>\n                        <\/jats:tbody>\n                      <\/jats:table>\n                    <\/jats:table-wrap>\n                  <\/jats:p>","DOI":"10.1007\/s00431-023-05249-w","type":"journal-article","created":{"date-parts":[[2023,10,16]],"date-time":"2023-10-16T10:02:06Z","timestamp":1697450526000},"page":"135-147","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["The care burden for technology-dependent children with long-term home ventilation increases along with the improvement of their motor functions"],"prefix":"10.1007","volume":"183","author":[{"given":"Hirotoshi","family":"Maeda","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Ikuko","family":"Tomomatsu","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Izumi","family":"Iikura","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Masahiro","family":"Ikari","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Youichi","family":"Kondo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Miyuki","family":"Yamamoto","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Masanori","family":"Tamura","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2023,10,16]]},"reference":[{"issue":"3","key":"5249_CR1","doi-asserted-by":"publisher","first-page":"529","DOI":"10.1542\/peds.2010-0910","volume":"127","author":"E Cohen","year":"2011","unstructured":"Cohen E, Kuo DZ, Agrawal R, Berry JG, Bhagat SK, Simon TD, Srivastava R (2011) Children with medical complexity: an emerging population for clinical and research initiatives. 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