{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,15]],"date-time":"2026-10-15T00:29:22Z","timestamp":1792024162355,"version":"4.4.0"},"reference-count":39,"publisher":"Wiley","issue":"7","license":[{"start":{"date-parts":[[2021,4,20]],"date-time":"2021-04-20T00:00:00Z","timestamp":1618876800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Pediatric Pulmonology"],"published-print":{"date-parts":[[2021,7]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background and Objectives<\/jats:title><jats:p>Shared decision making (SDM) before nonurgent tracheostomy in a child with chronic respiratory failure (CRF) is often recommended, but has proven challenging to implement in practice. We hypothesize that utilization of the microsystem model for analysis of the complex ecosystem in which SDM occurs will yield insights that enable formation of a reproducible, measurable SDM process.<\/jats:p><\/jats:sec><jats:sec><jats:title>Methods<\/jats:title><jats:p>Retrospective chart review of a case series of children with CRF in whom a SDM process was pursued. The process included a palliative care consult, a validated decision aid and 12 key questions designed to elucidate information integral to an informed decision. Investigators reviewed a single hospital admission for each child, focusing on the 3 core elements of a medical microsystem\u2014the patient, the providers, and information.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Twenty\u2010nine patients who met inclusion criteria ranged in age from 0 to 19.5 years (median 1.7) and remained in the hospital from 10 to 316 days (median 38). Patients were medically complex with multiple and varied respiratory diagnoses, multiple and varied comorbidities, and varying psychosocial environments. 14\/29 children received tracheostomies. Each child encountered a mean of 6.2 medical specialties, 1.9 surgical specialties and 8.5 nonphysician led services. Answers to 12 key questions were not documented systematically and often not found in the electronic medical record.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>A unique SDM microsystem is formed around each child but not optimally utilized. Explicit recognition of these microsystems would enable team formation and an SDM process comprised of measurable steps and communication patterns.<\/jats:p><\/jats:sec>","DOI":"10.1002\/ppul.25416","type":"journal-article","created":{"date-parts":[[2021,4,8]],"date-time":"2021-04-08T11:50:33Z","timestamp":1617882633000},"page":"2312-2321","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":8,"title":["Shared decision making for children with chronic respiratory failure\u2014It takes a village and a process"],"prefix":"10.1002","volume":"56","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-5921-6488","authenticated-orcid":false,"given":"Katharine","family":"Kevill","sequence":"first","affiliation":[{"name":"Division of Pediatric Pulmonary Medicine, Department of Pediatrics Renaissance School of Medicine at Stony Brook University  Stony Brook New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Grace","family":"Ker","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Stony Brook Children's Hospital, Renaissance School of Medicine Stony Brook University  Stony Brook New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rina","family":"Meyer","sequence":"additional","affiliation":[{"name":"Department of Pediatrics, Stony Brook Children's Hospital, Renaissance School of Medicine Stony Brook University  Stony Brook New York USA"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2021,4,20]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.4187\/respcare.05644"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2006-2471"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.20558"},{"key":"e_1_2_10_5_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.22868"},{"key":"e_1_2_10_6_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00134-012-2545-9"},{"key":"e_1_2_10_7_1","doi-asserted-by":"publisher","DOI":"10.1007\/s00431-011-1430-9"},{"issue":"1","key":"e_1_2_10_8_1","first-page":"42","article-title":"Long\u2010term respiratory support for children and adolescents in Austria: a national survey","volume":"228","author":"Weiss S","year":"2016","journal-title":"Klin Padiatr"},{"key":"e_1_2_10_9_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.21401"},{"key":"e_1_2_10_10_1","doi-asserted-by":"publisher","DOI":"10.1111\/j.1365-2524.2006.00639.x"},{"key":"e_1_2_10_11_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2010-2026"},{"key":"e_1_2_10_12_1","doi-asserted-by":"publisher","DOI":"10.1002\/ppul.24196"},{"key":"e_1_2_10_13_1","doi-asserted-by":"publisher","DOI":"10.1016\/j.jpeds.2018.11.046"},{"key":"e_1_2_10_14_1","doi-asserted-by":"publisher","DOI":"10.3390\/children4050041"},{"key":"e_1_2_10_15_1","doi-asserted-by":"publisher","DOI":"10.1164\/rccm.201602-0276ST"},{"key":"e_1_2_10_16_1","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201903-271OC"},{"key":"e_1_2_10_17_1","doi-asserted-by":"publisher","DOI":"10.1542\/hpeds.2016-0168"},{"key":"e_1_2_10_18_1","doi-asserted-by":"publisher","DOI":"10.1513\/AnnalsATS.201612-1002OC"},{"key":"e_1_2_10_19_1","doi-asserted-by":"publisher","DOI":"10.1097\/PCC.0000000000001341"},{"key":"e_1_2_10_20_1","doi-asserted-by":"publisher","DOI":"10.1542\/peds.2013-3608H"},{"key":"e_1_2_10_21_1","doi-asserted-by":"publisher","DOI":"10.1097\/CCM.0000000000001396"},{"key":"e_1_2_10_22_1","doi-asserted-by":"publisher","DOI":"10.1378\/chest.119.3.940"},{"key":"e_1_2_10_23_1","doi-asserted-by":"publisher","DOI":"10.1055\/s-2007-981655"},{"key":"e_1_2_10_24_1","first-page":"63","volume-title":"Crossing the Quality Chasm: A new Health System for the 21st Century","author":"Committee on Quality fo Health Care in America","year":"2001"},{"key":"e_1_2_10_25_1","unstructured":"SargutG McGrathRG. 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