About this trial
This is a multicenter study to test a decision-making support process for families and clinicians facing decisions about chronic home ventilation for a child. The investigators hypothesize that the intervention will increase family preparedness for decision-making and will improve clinician-family shared-decision making. Half of families will be assigned to "usual care" arm and half to the "intervention" arm. Intervention families will view the study website with study staff and will answer questions related to website content. All families will be interviewed and surveyed at 1, 6 and 12 months after enrollment. Each family will designate 1-2 physician involved in the decision about home ventilation; each physician will be interviewed and surveyed at 1 month.
Eligibility criteria
Qualifiers
English- or Spanish-speaking
Males and females; Age 18 and over.
Parent of a child facing a decision about home ventilation within 30 days. A "parent" will be defined as any self-identified primary caregiver (parents, grandparents, etc).
Provision of signed and dated informed consent form (parent) or completion of oral consent (physician)
Disqualifiers
Excluding children as they cannot be legal decision-makers
Non-English or Non-Spanish speaking parents, as the intervention website/ videos are only available in those two languages.
Trial design
Treatments tested in this trial
- HomeVENT decision support tool
Treatment groups
Sponsors and collaborators
Johns Hopkins University
Lead sponsor
Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD)
Collaborator