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.