1
40
3
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Dublin Core
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Title
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August 2023 List
Text
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Citation List Month
August List 2023
URL Address
<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1016/j.pecinn.2023.100173</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
Publisher
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PEC Innovation
Date
A point or period of time associated with an event in the lifecycle of the resource
2023
Subject
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child; article; cohort analysis; female; human; male; quality of life; palliative therapy; Ventilators, Mechanical; tracheostomy; content analysis; pilot study; respiratory failure; adolescent; decision making; intensive care unit; semi structured interview; pediatric patient; length of stay; counseling; artificial ventilation; home ventilation; Question Prompt List
Creator
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Boss RD; Vo HH; Jabre NA; Shepard J; Mercer A; McDermott A; Lanier CL; Ding Y; Wilfond BS; Henderson CM
Description
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Objective: To pilot feasibility and acceptability of HomeVENT, a systematic approach to family-clinician decision-making about pediatric home ventilation. Methods: Parents and clinicians of children facing home ventilation decisions were enrolled at 3 centers using a pre/post cohort design. Family interventions included: 1) a website describing the experiences of families who previously chose for and against home ventilation 2) a Question Prompt List (QPL); 3) in-depth interviews exploring home life and values. Clinician HomeVENT intervention included a structured team meeting reviewing treatment options in light of the family's home life and values. All participants were interviewed one month after the decision. Results: We enrolled 30 families and 34 clinicians. Most Usual Care (14/15) but fewer Intervention (10/15) families elected for home ventilation. Families reported the website helped them consider different treatment options, the QPL promoted discussion within the family and with the team, and the interview helped them realize how home ventilation might change their daily life. Clinicians reported the team meeting helped clarify prognosis and prioritize treatment options. Conclusions: The HomeVENT pilot was feasible and acceptable. Innovation: This systematic approach to pediatric home ventilation decisions prioritizes family values and is a novel method to increase the rigor of shared decision-making in a rushed clinical environment.
Identifier
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<a href="http://doi.org/10.1016/j.pecinn.2023.100173" target="_blank" rel="noreferrer noopener">10.1016/j.pecinn.2023.100173</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2023
Adolescent
Article
Artificial Ventilation
August List 2025
Boss RD
Child
Cohort Analysis
Content Analysis
Counseling
Decision Making
Ding Y
Female
Henderson CM
home ventilation
Human
Intensive Care Unit
Jabre NA
Lanier CL
Length Of Stay
Male
McDermott A
Mercer A
Palliative Therapy
PEC Innovation
pediatric patient
Pilot Study
Quality Of Life
Question Prompt List
respiratory failure
Semi Structured Interview
Shepard J
Tracheostomy
Ventilators, Mechanical
Vo HH
Wilfond BS
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Special Edition #1 2022 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
Special Edition #1 2022 List
URL Address
<a href="http://doi.org/10.1016/j.jpeds.2020.10.014" target="_blank" rel="noreferrer noopener">http://doi.org/10.1016/j.jpeds.2020.10.014</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Family Experiences Deciding For and Against Pediatric Home Ventilation
Publisher
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Journal of Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Subject
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decision-making; children with medical complexity; parent perspective; home ventilation
Creator
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Boss RD; Henderson CM; Raisanen JC; Jabre NA; Shipman K; Wilfond BS
Description
An account of the resource
Objective: To understand what considerations drive family decisions for, and against, pediatric home ventilation. Study design: Qualitative interviews with parents of children who faced a decision about home ventilation in the previous 5 years at 3 geographically dispersed institutions. Result(s): In total, 38 families (42 parents) were interviewed; 20 families opted for pediatric home ventilation, and 18 families opted against. Approximately one-quarter of children had isolated chronic lung disease; the remainder had medical complexity that was expected to remain static or decline. Parent perspectives about home ventilation generally reflected whether the child was early, or later, in their disease trajectory. Early on, parents often interpreted prognostic uncertainty as hope and saw home ventilation as a tool permitting time for improvement. For families of children later in their disease course, often already with home technology and home nursing, home ventilation held less possibility for meaningful improvement. Nearly all families experienced the decision as very emotionally distressing. Reflecting back, most families described feeling satisfied with whatever decision they made. Conclusion(s): The 2 principal groups of families in our cohort-those with children whose respiratory insufficiency might improve, and those with children facing chronic decline-warrant targeted counseling approaches about initiating home ventilation. The distressing nature of this decision should be anticipated and family supports reinforced. Copyright © 2020 Elsevier Inc.
Identifier
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<a href="http://doi.org/10.1016/j.jpeds.2020.10.014" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2020.10.014</a>
Rights
Information about rights held in and over the resource
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2021
2022 Special Edition 1 - Parent Perspectives
Boss RD
Children With Medical Complexity
Decision-making
Henderson CM
home ventilation
Jabre NA
Journal of Pediatrics
parent perspective
Raisanen JC
Shipman K
Wilfond BS
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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January 2021 List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
January 2021 List
URL Address
<a href="http://doi.org/10.3389/fped.2020.584334" target="_blank" rel="noreferrer noopener">http://doi.org/10.3389/fped.2020.584334</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
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Long-Term Non-invasive Ventilation in Children: Current Use, Indications, and Contraindications
Publisher
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Frontiers in Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Subject
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chronic respiratory failure; Covid-19; neuromuscular disorders; non-invasive ventilation; home ventilation; mouthpiece ventilation
Creator
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Praud JP
Description
An account of the resource
This review focuses on the delivery of non-invasive ventilation-i.e., intermittent positive-pressure ventilation-in children lasting more than 3 months. Several recent reviews have brought to light a dramatic escalation in the use of long-term non-invasive ventilation in children over the last 30 years. This is due both to the growing number of children receiving care for complex and severe diseases necessitating respiratory support and to the availability of LT-NIV equipment that can be used at home. While significant gaps in availability persist for smaller children and especially infants, home LT-NIV for children with chronic respiratory insufficiency has improved their quality of life and decreased the overall cost of care. While long-term NIV is usually delivered during sleep, it can also be delivered 24 h a day in selected patients. Close collaboration between the hospital complex-care team, the home LT-NIV program, and family caregivers is of the utmost importance for successful home LT-NIV. Long-term NIV is indicated for respiratory disorders responsible for chronic alveolar hypoventilation, with the aim to increase life expectancy and maximize quality of life. LT-NIV is considered for conditions that affect respiratory-muscle performance (alterations in central respiratory drive or neuromuscular function) and/or impose an excessive respiratory load (airway obstruction, lung disease, or chest-wall anomalies). Relative contraindications for LT-NIV include the inability of the local medical infrastructure to support home LT-NIV and poor motivation or inability of the patient/caregivers to cooperate or understand recommendations. Anatomic abnormalities that interfere with interface fitting, inability to protect the lower airways due to excessive airway secretions and/or severely impaired swallowing, or failure of LT-NIV to support respiration can lead to considering invasive ventilation via tracheostomy. Of note, providing home LT-NIV during the COVID 19 pandemic has become more challenging. This is due both to the disruption of medical systems and the fear of contaminating care providers and family with aerosols generated by a patient positive for SARS-CoV-2 during NIV. Delay in initiating LT-NIV, decreased frequency of home visits by the home ventilation program, and decreased availability of polysomnography and oximetry/transcutaneous PCO(2) monitoring are observed. Teleconsultations and telemonitoring are being developed to mitigate these challenges.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.3389/fped.2020.584334" target="_blank" rel="noreferrer noopener">10.3389/fped.2020.584334</a>
Rights
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Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
2020
chronic respiratory failure
COVID-19
Frontiers in Pediatrics
home ventilation
January 2021 List
mouthpiece ventilation
Neuromuscular Disorders
Non-invasive ventilation
Praud JP