Decisions around Long-term Ventilation for Children. Perspectives of Directors of Pediatric Home Ventilation Programs

Annals of the American Thoracic Society
Jeffrey D EdwardsRachel L Miller

Abstract

The decision of whether to initiate or forgo long-term ventilation (LTV) for children with life-limiting conditions can be complex and impactful. Providers are responsible for helping families to understand the consequences of their options and guiding them through shared decision-making, but little has been published on how to do this. To assess how directors of pediatric home ventilation programs facilitate shared decision-making with families facing decisions of whether to initiate or forgo LTV for their children with life-limiting conditions. In addition, to assess directors' perspectives on these families' decisional needs. Purposeful recruiting of directors/codirectors of pediatric home ventilation programs at children's hospitals was used. We performed semistructured interviews using an open-ended interview guide developed de novo to assess their approach to informed, shared decision-making around LTV and their perspectives on these decisions. Qualitative data analysis was conducted using a thematic approach based on framework analysis in which thematic saturation was achieved. A sample of 15 experienced physician directors across North America was interviewed. All (15/15) inform families of the potential benefits and bu...Continue Reading

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Citations

Nov 21, 2017·Pediatric Pulmonology·Jeffrey D EdwardsPatricia W Stone
Aug 23, 2019·Annals of the American Thoracic Society·Jeffrey D EdwardsMarilyn C Morris
Jul 2, 2020·Annals of the American Thoracic Society·Christopher D Baker
Aug 11, 2020·Pediatric Pulmonology·Alison H MilesLaura M Sterni
Sep 24, 2020·Journal of Child Health Care : for Professionals Working with Children in the Hospital and Community·Denise AlexanderMaria Brenner
May 16, 2019·Current Opinion in Pediatrics·Christopher D Baker
Sep 30, 2017·Annals of the American Thoracic Society·Ira M Cheifetz
Mar 6, 2021·Pediatric Pulmonology·Christopher D Baker
Apr 22, 2021·Journal of Paediatrics and Child Health·Mayukh RahmanJohn Massie
Jul 21, 2021·Journal of Medical Ethics·Denise AlexanderMaria Brenner
Jul 27, 2021·Pediatric Pulmonology·Carrie M HendersonRenee D Boss
Dec 11, 2020·Respiration; International Review of Thoracic Diseases·Bernd SchönhoferWolfram Windisch
Nov 6, 2021·Pediatric Pulmonology·Nicholas A JabreBenjamin S Wilfond

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