{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,5,5]],"date-time":"2026-05-05T02:40:30Z","timestamp":1777948830247,"version":"3.51.4"},"reference-count":33,"publisher":"Wiley","issue":"2","license":[{"start":{"date-parts":[[2026,2,9]],"date-time":"2026-02-09T00:00:00Z","timestamp":1770595200000},"content-version":"vor","delay-in-days":8,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"},{"start":{"date-parts":[[2026,2,1]],"date-time":"2026-02-01T00:00:00Z","timestamp":1769904000000},"content-version":"tdm","delay-in-days":0,"URL":"http:\/\/doi.wiley.com\/10.1002\/tdm_license_1.1"}],"funder":[{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["K23 HD097276"],"award-info":[{"award-number":["K23 HD097276"]}],"id":[{"id":"10.13039\/100009633","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2026,2]]},"abstract":"<jats:title>ABSTRACT<\/jats:title>\n                  <jats:sec>\n                    <jats:title>Objective<\/jats:title>\n                    <jats:p>To assess parents of children requiring invasive mechanical ventilation's (IMV) perceptions of their children's developmental delays and disabilities.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>\n                      Parents of children &lt;3 years of age who required IMV after neonatal disease were interviewed as a consecutive series from a state\u2010wide agency (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200920) and a ventilator clinic (\n                      <jats:italic>n<\/jats:italic>\n                      \u2009=\u200915). Interview topics included parents\u2019: (1) perception of their child's current developmental functioning, (2) understanding of their child's disability risks, and (3) prior conversations with providers about developmental milestones and disability risks. Interviews were coded using a modified template approach and discussed to consensus. Main and sub\u2010themes were determined iteratively with all investigators.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>Thirty\u2010five parents were interviewed. Themes were categorized under two topics: (1) Parents\u2019 recall of conversations with providers; (2) Parents\u2019 perspectives on developmental delays. Topic 1 themes: (1) Despite wanting information on developmental outcomes, parents report unclear expectations for delay and disability based on limited conversations; (2) Parents reported a lack of access to neurodevelopmental expertise, most often directing questions to therapists or other parents. Topic 2 themes: (1) Parents can identify specific developmental milestones and delays; (2) Parents have an idea of overall disability, sometimes attributed to specific diagnoses or medical complexity; (3) Parents are hopeful for their child's future development.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusion<\/jats:title>\n                    <jats:p>Parents of children requiring IMV value honesty about disability and recall few prior conversations. Most parents can identify developmental delays\u00a0yet expect catch\u2010up. Ultimately, improving communication between providers and parents about disability risk is critical to support children requiring IMV.<\/jats:p>\n                  <\/jats:sec>","DOI":"10.1002\/ppul.71481","type":"journal-article","created":{"date-parts":[[2026,2,9]],"date-time":"2026-02-09T12:05:31Z","timestamp":1770638731000},"update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":0,"title":["Parents' Perceptions of Delays and Disabilities in Their Children Requiring Invasive Mechanical Ventilation"],"prefix":"10.1002","volume":"61","author":[{"given":"Amanda","family":"Calipo","sequence":"first","affiliation":[{"name":"The University of Chicago Pritzker School of Medicine  Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Emma L.","family":"Green","sequence":"additional","affiliation":[{"name":"Section of Developmental &amp; Behavioral Pediatrics, Department of Pediatrics The University of Chicago  Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Iris","family":"Huang","sequence":"additional","affiliation":[{"name":"The University of Chicago Pritzker School of Medicine  Chicago Illinois USA"},{"name":"Department of Pediatrics University of California San Francisco  San Francisco California USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sarah A.","family":"Sobotka","sequence":"additional","affiliation":[{"name":"Section of Developmental &amp; Behavioral Pediatrics, Department of Pediatrics The University of Chicago  Chicago Illinois USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2026,2,9]]},"reference":[{"key":"e_1_2_12_2_1","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.201602-0276ST"},{"key":"e_1_2_12_3_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.20867"},{"key":"e_1_2_12_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2022.06.009"},{"key":"e_1_2_12_5_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pedn.2024.07.002"},{"key":"e_1_2_12_6_1","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201910-780OC"},{"key":"e_1_2_12_7_1","doi-asserted-by":"publisher","DOI":"10.1111\/birt.12301"},{"key":"e_1_2_12_8_1","doi-asserted-by":"publisher","DOI":"10.1159\/000496494"},{"key":"e_1_2_12_9_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.ajog.2016.11.1009"},{"key":"e_1_2_12_10_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.pediatrneurol.2017.11.002"},{"key":"e_1_2_12_11_1","doi-asserted-by":"publisher","DOI":"10.1038\/pr.2017.82"},{"key":"e_1_2_12_12_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2019.12.028"},{"key":"e_1_2_12_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2019.11.016"},{"key":"e_1_2_12_14_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.earlhumdev.2020.105275"},{"key":"e_1_2_12_15_1","doi-asserted-by":"publisher","DOI":"10.1186\/s12887-019-1400-3"},{"key":"e_1_2_12_16_1","doi-asserted-by":"publisher","DOI":"10.1038\/jp.2016.108"},{"key":"e_1_2_12_17_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2013.12.014"},{"key":"e_1_2_12_18_1","doi-asserted-by":"publisher","DOI":"10.1177\/0194599816628486"},{"key":"e_1_2_12_19_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41372-021-01144-0"},{"key":"e_1_2_12_20_1","doi-asserted-by":"publisher","DOI":"10.1038\/s41372-019-0540-5"},{"key":"e_1_2_12_21_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.26265"},{"key":"e_1_2_12_22_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.26921"},{"key":"e_1_2_12_23_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jbi.2008.08.010"},{"key":"e_1_2_12_24_1","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMp1802313"},{"key":"e_1_2_12_25_1","doi-asserted-by":"publisher","DOI":"10.1080\/14780887.2014.955224"},{"key":"e_1_2_12_26_1","first-page":"406","article-title":"Using Codes and Code Manuals: A Template Organizing Style of Interpretation","author":"Miller W. 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