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. Yet incorporating the voices of “expert” families into counseling of “novice” families is difficult to accomplish. Novice families should have access to a full scope of stories from families who chose both for and against technologies, a balance that is difficult to standardize.

Objectives

    • Construct a repository of family reflections on their prior decisions for or against tracheostomy and/or chronic pediatric mechanical ventilation.
    • Develop an interactive decision support tool (i.e. the “What it Means for Our Family” website) to portray a range of family experiences with decisions regarding pediatric chronic mechanical ventilation

Methodology & Progress

We interviewed 38 families (approximately half that chose for home mechanical ventilation and half that chose against) about their unique decision-making processes and lives after making decisions. After collecting and transcribing data about family experiences with decision-making, we worked with a professional agency, Booster Shot Media, to craft a decision-making tool based on family reflections. The tool was then reviewed by a subset of participants and colleagues for feedback.

Presentations
“What It Means for Our Family” – Video Decision Supports for Parents Considering Chronic Pediatric Mechanical Ventilation

Boss, R.D., Rothenberg, K., Raisanen, J.C. (2018). Berman Institute Research Retreat. Baltimore, MD. (Presented by R.D. Boss).

Making Decisions with Parents About Chronic Mechanical Ventilation for their Children: Are we helping or harming the dialogue?

Jabre, N., Wilfond, B., Sterni, L., Boss, R. (2019). The American Society of Bioethics and Humanities 21st Annual Conference. Pittsburgh, PA. (Presented by N. Jabre).

Exploring Parental Decision-making Regarding Long-term Ventilation for Children With and Without Severe Neurological Impairement

Munjapara, V., Bogetz, J., Wilfond, B., Henderson, C., Raisanen, J.C., Jabre, N., Shipman, K., Boss, R.D. (2020). State of the Science in Hospice and Palliative Care Meeting, American Academy of Hospice and Palliative Medicine (AAHPM). San Diego, CA. (Presenter, V. Munjapara).

Publications

Coming Soon!

Decision-Making Tool

Coming Soon!

Core Team

Renee D. Boss, MD, MHS

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Carrie M. Henderson, MD

University of Mississippi Medical Center

Nicholas Jabre, MD

Johns Hopkins School of Medicine, Johns Hopkins Berman Institute of Bioethics

Jessica C. Raisanen, MSPH

Johns Hopkins Berman Institute of Bioethics

Kelly J. Shipman, MS

Seattle Children’s Hospital and Research Institute

Benjamin S. Wilfond, MD

Seattle Children’s Hospital and Research Institute, University of Washington School of Medicine