Multicenter HomeVENT: Home Values and Experiences Navigation Track

Description

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.

Conditions

Pediatric ALL, Respiratory Insufficiency, Communication

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Study Overview

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Study Details

Study overview

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.

Multicenter HomeVENT: Home Values and Experiences Navigation Track

Multicenter HomeVENT: Home Values and Experiences Navigation Track

Condition
Pediatric ALL
Intervention / Treatment

-

Contacts and Locations

Tampa

Johns Hopkins All Childrens Hospital, Tampa, Florida, United States, 33701

New Orleans

Children's Hospital New Orleans, New Orleans, Louisiana, United States, 70118

Baltimore

Johns Hopkins University School of Medicine, Baltimore, Maryland, United States, 21287

Seattle

Seattle Childrens Hospital, Seattle, Washington, United States, 98145

Participation Criteria

Researchers look for people who fit a certain description, called eligibility criteria. Some examples of these criteria are a person's general health condition or prior treatments.

For general information about clinical research, read Learn About Studies.

Eligibility Criteria

  • 1. English- or Spanish-speaking
  • 2. Males and females; Age 18 and over.
  • 3. 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).
  • 4. Provision of signed and dated informed consent form (parent) or completion of oral consent (physician)
  • 5. Stated willingness to comply with all study procedures and availability for the duration of the study
  • 6. Access to necessary resources if choose to participate via internet or telephone
  • 1. Excluding children as they cannot be legal decision-makers
  • 2. Non-English or Non-Spanish speaking parents, as the intervention website/ videos are only available in those two languages.

Ages Eligible for Study

18 Years to

Sexes Eligible for Study

ALL

Accepts Healthy Volunteers

Yes

Collaborators and Investigators

Johns Hopkins University,

Renee Boss, MD, PRINCIPAL_INVESTIGATOR, Johns Hopkins School of Medicine

Study Record Dates

2030-12