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Family Experiences Deciding For and Against Pediatric Home Ventilation
Renee D Boss1, Carrie M Henderson2, Jessica C Raisanen3
1Johns Hopkins School of Medicine, Baltimore, MD; Johns Hopkins Berman Institute of Bioethics, Baltimore, MD.
Insights
Family decisions on pediatric home ventilation depend on the child's disease trajectory. Early disease offers hope and time for improvement with ventilation, while later stages may not benefit, highlighting the need for tailored support.
Area of Science:
- Pediatric critical care
- Family decision-making
- Home healthcare
Background:
- Pediatric home ventilation is a complex decision for families.
- Understanding parental considerations is crucial for effective support.
Purpose of the Study:
- To explore the factors influencing parental decisions regarding pediatric home ventilation.
- To identify key considerations for families choosing for or against home ventilation.
Main Methods:
- Qualitative interviews were conducted with 42 parents from 38 families.
- Families had faced a home ventilation decision within the past 5 years.
- Participants were from geographically diverse institutions.
Main Results:
- Parental perspectives varied based on the child's disease trajectory (early vs. late stage).
- Early disease often led to viewing ventilation as a way to gain time for improvement.
- Late-stage disease, with existing technology, offered less perceived benefit from ventilation.
- The decision-making process was emotionally distressing for nearly all families.
- Most families reported satisfaction with their final decision.
Conclusions:
- Families with children whose respiratory insufficiency might improve require different counseling than those facing chronic decline.
- Anticipating the emotional distress of this decision is essential.
- Reinforcing family support systems is critical during this process.
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.
Results:
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.
Conclusions:
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.
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