Family-Reflections.com: Creating a parent-to-parent web-based tool regarding pediatric home ventilation

Area of Science:

• Pediatric critical care
• Family-centered care
• Health communication

Background:

• The decision for pediatric mechanical ventilation via tracheostomy (home ventilation) is complex.
• Parents seek peer support but connecting them with experienced families is challenging.
• Existing resources often lack comprehensive, family-centered perspectives.

Purpose of the Study:

• To develop and evaluate a web-based tool facilitating parent-to-parent communication for pediatric home ventilation decisions.
• To provide balanced, family-centric information often missing from clinical counseling.

Main Methods:

• Interviews with parents who decided for or against home ventilation guided website development.
• A web-based tool was created featuring composite family stories and themes.
• Viewer feedback was collected via an embedded survey.

Main Results:

• The tool addresses key themes: treatment options, medical team communication, home life impact, relationships, child's experience, and short life expectancy.
• 90% of reviewing families felt the tool would have aided their decision-making.
• The tool helped families clarify priorities and feel more at peace with their decisions.

Conclusions:

• A novel parent-to-parent web tool can enhance access to balanced information for pediatric home ventilation decisions.
• The tool offers valuable, family-centric insights beyond clinician guidance.
• This resource supports informed, family-centered decision-making in a complex medical context.