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Multicenter HomeVENT: Home Values and Experiences Navigation Track

Who can join

As published by the study on ClinicalTrials.gov. "Not stated" means the study hasn't said — ask the study team.

Age
18 Years and older
Sex
All sexes
Healthy volunteers
Accepted
Compensation
Not stated

Other requirements are listed under Eligibility below. Only the study team can confirm whether you can join.

What to expect

No one can promise a trial will help you personally — that is what the research is trying to find out.

What participation involves

  • Procedures mentioned: Interviews

Only what the study's summary and detailed description on ClinicalTrials.gov say. Time periods may describe the whole study or a part of it — ask the study team what applies to you.

Show the study's own words
  • "Intervention families will view the study website with study staff and will answer questions related to website content in an interview that could last up to 2 hours."
  • "All families will be interviewed at 1, 6 and 12 months after enrollment (each interview lasts 15-30 minutes)."
  • "Each family will designate 1-2 physician involved in the decision about home ventilation; each physician will be interviewed at 1 month interviews last \~15 minutes)."
Compensation
Not stated
  • Study-related exams and procedures are typically provided at no cost. This is how many trials work in general — confirm the details for this study with the study team.
  • Participants are monitored closely by the research team throughout the study.
  • Some participants may receive access to an investigational treatment, which is still being studied.
  • Your participation helps researchers learn whether this approach could help future patients.

About this study

In plain language

This study tests a way to help families and doctors make decisions about a child using a breathing machine at home long term. It is for adult caregivers facing this decision and doctors involved in the decision. Half of families will get usual care, and half will review a study website with study staff and answer questions about it.

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.

Compensation is read from the study's own description and may be missing — always confirm with the study team.

Eligibility

Who can join

  • Speak English or Spanish.
  • Be age 18 or older.
  • Be a child's main caregiver facing a decision about home breathing support within 30 days, or be a doctor involved in this decision whose patient's parents are in the study.
  • Caregivers must sign and date a form agreeing to join the study. Doctors must give spoken agreement.
  • Be willing to follow all study steps and be available for the full study.
  • Have the needed resources if joining by internet or phone.

Who can't join

  • Children cannot join because they cannot legally make these decisions.
  • Parents who do not speak English or Spanish cannot join because the study website and videos are only in these languages.

Simplified for readability. The official criteria below are what the study team uses.

Official eligibility criteria

Inclusion 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). or Physician of a child whose parents are enrolled in the study; physician must be engaged in the home ventilation decision. 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 Exclusion Criteria: 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.

Study sites (4)

FL

LA

MD

WA