{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,7,23]],"date-time":"2026-07-23T14:03:12Z","timestamp":1784815392690,"version":"3.55.0"},"reference-count":40,"publisher":"Wiley","issue":"5","license":[{"start":{"date-parts":[[2020,12,23]],"date-time":"2020-12-23T00:00:00Z","timestamp":1608681600000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100009633","name":"Eunice Kennedy Shriver National Institute of Child Health and Human Development","doi-asserted-by":"publisher","award":["K23 HD 082361"],"award-info":[{"award-number":["K23 HD 082361"]}],"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":[[2021,5]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Objectives<\/jats:title><jats:p>To provide accessible, uniform, comprehensive, and balanced information to families deciding whether to initiate long\u2010term ventilation (LTV) for their child, we sought to develop and validate a novel informational resource.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>The Ottawa Decision Support Framework was followed. Previous interviews with 44 lay and 15 professional stakeholders and published literature provided content for a booklet. Iterative versions were cognitive tested with six parents facing decisions and five pediatric intensivists. Ten parents facing decisions evaluated the booklet using the Preparation for Decision Making Scale and reported their decisional conflict, which was juxtaposed to the conflict of 21 parents who did not read it, using the Decisional Conflict Scale. Twelve home ventilation program directors evaluated the booklet's clinical sensibility and sensitivity, using a self\u2010designed six\u2010item questionnaire. Data presented using summary statistics.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>The illustrated booklet (6th\u2010grade reading level) has nine topical sections on chronic respiratory failure and invasive and noninvasive LTV, including the option to forgo LTV. Ten parents who read the booklet rated it as helping \u201cQuite a bit\u201d or more on all items of the Preparation for Decision Making Scale and had seemingly less decisional conflict than 21 parents who did not. Twelve directors rated it highly for clinical sensibility and sensitivity.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>The LTV booklet was rigorously developed and favorably evaluated. It offers a resource to improve patient\/family knowledge, supplement shared decision\u2010making, and reduce decisional conflict around LTV decisions. Future studies should validate it in other settings and further study its effectiveness.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.25221","type":"journal-article","created":{"date-parts":[[2020,12,11]],"date-time":"2020-12-11T13:09:32Z","timestamp":1607692172000},"page":"1198-1204","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":15,"title":["Development and validation of a novel informational booklet for pediatric long\u2010term ventilation decision support"],"prefix":"10.1002","volume":"56","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8648-248X","authenticated-orcid":false,"given":"Jeffrey D.","family":"Edwards","sequence":"first","affiliation":[{"name":"Division of Critical Care and Hospital Medicine, Department of Pediatrics Columbia University Valegos College of Physicians and Surgeons  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Howard B.","family":"Panitch","sequence":"additional","affiliation":[{"name":"Division of Pulmonary Medicine, Department of Pediatrics Perelman School of Medicine at the University of Pennsylvania  Philadelphia Pennsylvania USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Maureen","family":"George","sequence":"additional","affiliation":[{"name":"Columbia University School of Nursing  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Anne\u2010Marie","family":"Cirrilla","sequence":"additional","affiliation":[{"name":"Department of Care Coordination\/Social Work New York\u2010Presbyterian Morgan Stanley Children's Hospital  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Eli","family":"Grunstein","sequence":"additional","affiliation":[{"name":"Division of Pediatric Otolaryngology Columbia University Valegos College of Physicians and Surgeons  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Joanne","family":"Wolfe","sequence":"additional","affiliation":[{"name":"Department of Psychosocial Oncology and Palliative Care Dana\u2010Farber Cancer Institute  Boston Massachusetts USA"},{"name":"Department of Pediatrics Boston Children's Hospital  Boston Massachusetts USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Judith E.","family":"Nelson","sequence":"additional","affiliation":[{"name":"Critical Care Service, Memorial Sloan Kettering Cancer Center Weill Cornell Medical College  New York New York USA"},{"name":"Palliative Medicine Service, Memorial Sloan Kettering Cancer Center Weill Cornell Medical College  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel L.","family":"Miller","sequence":"additional","affiliation":[{"name":"Division of Clinical Immunology, Department of Medicine Icahn School of Medicine at Mount Sinai  New York New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2020,12,23]]},"reference":[{"key":"e_1_2_9_2_1","doi-asserted-by":"publisher","DOI":"10.1097\/PCC.0000000000000844"},{"key":"e_1_2_9_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2005-0789"},{"key":"e_1_2_9_4_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2016.05.009"},{"key":"e_1_2_9_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.23917"},{"key":"e_1_2_9_6_1","doi-asserted-by":"publisher","DOI":"10.1097\/PCC.0000000000002158"},{"key":"e_1_2_9_7_1","doi-asserted-by":"publisher","DOI":"10.1093\/pch\/16.7.395"},{"key":"e_1_2_9_8_1","doi-asserted-by":"publisher","DOI":"10.1378\/chest.11-1323"},{"key":"e_1_2_9_9_1","doi-asserted-by":"publisher","DOI":"10.1097\/PCC.0000000000001341"},{"key":"e_1_2_9_10_1","doi-asserted-by":"publisher","DOI":"10.1177\/0883073818822900"},{"key":"e_1_2_9_11_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1469-8749.2009.03582.x"},{"key":"e_1_2_9_12_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-3608H"},{"key":"e_1_2_9_13_1","doi-asserted-by":"publisher","DOI":"10.1097\/PCC.0000000000002046"},{"key":"e_1_2_9_14_1","unstructured":"The Ottawa Hospital Research Institute. 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