Multicenter HomeVENT: Home Values and Experiences Navigation Track
About this study
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.
- Condition
- Pediatric ALL, Respiratory Insufficiency, Communication
- Tested
- HomeVENT decision support tool
- Sponsor
- Johns Hopkins University
Who can join
- Age
- 18 years and older
- Sex
- All sexes
- Healthy volunteers
- Accepted
Inclusion 9
- Minimum age: 18 years
- Study condition: Pediatric ALL, Respiratory Insufficiency, Communication
- 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).
- or Physician of a child whose parents are enrolled in the study; physician must be engaged in the home ventilation decision.
- Provision of signed and dated informed consent form (parent) or completion of oral consent (physician)
- Stated willingness to comply with all study procedures and availability for the duration of the study
- Access to necessary resources if choose to participate via internet or telephone
Exclusion 2
- 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.
Where
4 sites, 4 recruiting
Johns Hopkins University School of Medicine
Baltimore, Maryland, United States
Children's Hospital New Orleans
New Orleans, Louisiana, United States
Seattle Childrens Hospital
Seattle, Washington, United States
Johns Hopkins All Childrens Hospital
Tampa, Florida, United States
Contact
-
Renee D Boss, MD
4106146444 rboss1@jhu.edu
-
Fiona Jardine, RN
410-955-5232 fjardin1@jhu.edu
Potential match only. Final eligibility is determined by the study team.