Pediatric Chronic Mechanical Ventilation Decision-Making Tool

Helping families make informed decisions for their child and family by hearing the lived-experiences of others who chose for and against pediatric chronic mechanical ventilation

The experts in making decisions for and against chronic medical technology for children are, of course, parents themselves. Parents facing these decisions often do want to hear other families’ experiences and experienced parents often wish to share their stories. Families should also have access to a full scope of stories from families who chose both for and against technologies, a balance that is difficult to standardize. Yet incorporating families’ voices into counseling is difficult to accomplish.

Objectives

• Construct a repository of family reflections on their prior decisions for or against tracheostomy/ chronic mechanical ventilation for their child.
• Develop an interactive decision support tool (www.Family-Reflections.com ) that is meant to supplement clinician counseling about pediatric chronic mechanical ventilation

Methodology & Progress

We interviewed families (approximately half that chose for home mechanical ventilation and half that chose against) from across 3 states about their decision-making processes and lives after making decisions. We then worked with a professional agency, Booster Shot Media, to craft a decision-making tool based on family reflections. The tool was embedded in the website: www.Family-Reflections.com.

Core Team