BREATHE STUDY

Overview:

The purpose of the BREATHE Study is to explore how to support caregivers once they are at home to safely care for their child with a tracheostomy or ventilator.

5-year study with a goal to enroll 300 caregivers across all 6 sites
The study aims to reduce caregiver burden after discharge to home, reduce hospital readmissions and increase pediatrician satisfaction with discharge communication.

Why is this study important?

The stress and constant demands of caregiving negatively affect caregivers. There are no existing guidelines to help hospitals create programs to support caregivers and children after discharge. This study will provide important evidence of how well different resources help caregivers taking care of children with tracheostomies or ventilators at home. The resources being tested have been created with parents and caregivers who have taken care of children with tracheostomies and ventilators.

Participating sites and investigators:

Massachusetts General Hospital is coordinating the study across all sites

Parent partner quotes:

A special component of the BREATHE study design is the involvement of parents, who have experience caring for their children with a tracheostomy and/or other complex needs. They have shared their experiences with the study team to help identify areas where caregivers need the most support when transitioning home with a trached child.

Below are a few quotes reflecting their motivations for their involvement in this research study and how new caregivers’ participation in the BREATHE study can have a positive impact by helping other families.