Family Experiences Deciding For and Against Pediatric Home Ventilation

Title

Family Experiences Deciding For and Against Pediatric Home Ventilation

Creator

Boss RD; Henderson CM; Raisanen JC; Jabre NA; Shipman K; Wilfond BS

Publisher

Journal of Pediatrics

Date

2021

Subject

decision-making; children with medical complexity; parent perspective; home ventilation

Description

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.

Rights

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).

Citation List Month

April 2021 List

Collection

Citation

Boss RD; Henderson CM; Raisanen JC; Jabre NA; Shipman K; Wilfond BS, “Family Experiences Deciding For and Against Pediatric Home Ventilation,” Pediatric Palliative Care Library, accessed October 25, 2021, https://pedpalascnetlibrary.omeka.net/items/show/17499.

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