Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation
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 i...
| Main Authors: | , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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Elsevier
2023-12-01
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| Series: | PEC Innovation |
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| Online Access: | http://www.sciencedirect.com/science/article/pii/S2772628223000535 |
| _version_ | 1797798517144551424 |
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| author | Renee D. Boss Holly H. Vo Nicholas A. Jabre Jennifer Shepard Amanda Mercer Anne McDermott Chisa L. Lanier Yuanyuan Ding Benjamin S. Wilfond Carrie M. Henderson |
| author_facet | Renee D. Boss Holly H. Vo Nicholas A. Jabre Jennifer Shepard Amanda Mercer Anne McDermott Chisa L. Lanier Yuanyuan Ding Benjamin S. Wilfond Carrie M. Henderson |
| author_sort | Renee D. Boss |
| collection | DOAJ |
| description | 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. |
| first_indexed | 2024-03-13T04:04:55Z |
| format | Article |
| id | doaj.art-18551fbc2b554ddf89572a3e019d9237 |
| institution | Directory Open Access Journal |
| issn | 2772-6282 |
| language | English |
| last_indexed | 2024-03-13T04:04:55Z |
| publishDate | 2023-12-01 |
| publisher | Elsevier |
| record_format | Article |
| series | PEC Innovation |
| spelling | doaj.art-18551fbc2b554ddf89572a3e019d92372023-06-21T07:01:50ZengElsevierPEC Innovation2772-62822023-12-012100173Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilationRenee D. Boss0Holly H. Vo1Nicholas A. Jabre2Jennifer Shepard3Amanda Mercer4Anne McDermott5Chisa L. Lanier6Yuanyuan Ding7Benjamin S. Wilfond8Carrie M. Henderson9Pediatrics, Johns Hopkins School of Medicine, 200 N. Wolfe Street, Baltimore 21287, USA; Johns Hopkins Berman Institute of Bioethics, 1809 Ashland Avenue, Baltimore 21287, USA; Corresponding author at: Division of Neonatology, Department of Pediatrics, Johns Hopkins University School of Medicine, 1809 Ashland Avenue, Baltimore, MD 21287, USA.Pediatric Pulmonary, University of Washington School of Medicine, 1900 Ninth Avenue, Seattle 98101, USAPediatric Pulmonary, Johns Hopkins All Children's Hospital, 501 Sixth Avenue, St. Petersburg 33701, USAPediatrics, Johns Hopkins School of Medicine, 200 N. Wolfe Street, Baltimore 21287, USAPediatric Pulmonary, University of Washington School of Medicine, 1900 Ninth Avenue, Seattle 98101, USAPediatric Pulmonary, University of Washington School of Medicine, 1900 Ninth Avenue, Seattle 98101, USAPediatric Intensive Care, University of Mississippi Medical Center, 2500 N. State Street, Jackson 39216, USAPediatrics, Johns Hopkins School of Medicine, 200 N. Wolfe Street, Baltimore 21287, USAPediatric Pulmonary, University of Washington School of Medicine, 1900 Ninth Avenue, Seattle 98101, USA; Treuman Katz Center for Pediatric Bioethics, Seattle Children's Research Institute, 1900 Ninth Ave, Seattle 98101, USAPediatric Intensive Care, University of Mississippi Medical Center, 2500 N. State Street, Jackson 39216, USA; Center for Bioethics and Medical Humanities, 2500 N. State Street, Jackson 39216, USAObjective: 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.http://www.sciencedirect.com/science/article/pii/S2772628223000535Home ventilationChildren with medical complexityDecision-making |
| spellingShingle | Renee D. Boss Holly H. Vo Nicholas A. Jabre Jennifer Shepard Amanda Mercer Anne McDermott Chisa L. Lanier Yuanyuan Ding Benjamin S. Wilfond Carrie M. Henderson Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation PEC Innovation Home ventilation Children with medical complexity Decision-making |
| title | Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation |
| title_full | Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation |
| title_fullStr | Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation |
| title_full_unstemmed | Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation |
| title_short | Home values and experiences navigation track (HomeVENT): Supporting decisions about pediatric home ventilation |
| title_sort | home values and experiences navigation track homevent supporting decisions about pediatric home ventilation |
| topic | Home ventilation Children with medical complexity Decision-making |
| url | http://www.sciencedirect.com/science/article/pii/S2772628223000535 |
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