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Parent perspectives on facilitating decision-making around pediatric home ventilation
Nicholas A Jabre1,2, Jessica C Raisanen1, Kelly J Shipman3
1Johns Hopkins Berman Institute of Bioethics, Baltimore, Maryland, USA.
Pediatric Pulmonology
|November 5, 2021
Summary
Parents need clinician support when deciding on pediatric home ventilation. Effective communication, team management, and respecting family choices are key to high-quality decision-making for invasive breathing support.
Area of Science:
- Pediatric critical care
- Health services research
- Patient decision-making
Background:
- Pediatric home ventilation decisions are complex for parents.
- Understanding parental needs can improve clinician counseling.
- Supporting diverse family values and goals is crucial.
Purpose of the Study:
- To identify how clinicians can meet the decision-making needs of parents considering home ventilation.
- To analyze experiences of families who chose for or against home ventilation.
Main Methods:
- Semi-structured interviews with 38 parents (20 for, 18 against home ventilation) across three US academic centers.
- Focus on parent-clinician communication during decision-making.
- Qualitative analysis to identify themes.
Main Results:
- Five key themes emerged for facilitating high-quality decision-making:
- Demonstrating dedication to families.
- Effectively managing the medical team.
- Introducing home ventilation with intention.
- Facilitating meaningful conversations about treatment options.
- Supporting and respecting family decisions.
Conclusions:
- High-quality decision-making for pediatric home ventilation requires individual clinician actions and effective healthcare system operations.
- Strong parent-clinician relationships and collaborative alliances are vital.
- Appropriate delivery of information supports families considering invasive breathing supports.
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