Decision-making support for families considering home ventilation for children

Is this trial a fit for you?

A plain-English reading of the study's rules. Only the study team can confirm whether you qualify.

What this trial studies

This multicenter study aims to evaluate a decision-making support process for families and clinicians involved in chronic home ventilation decisions for pediatric patients. Families will be randomly assigned to either a usual care group or an intervention group that utilizes a dedicated website to facilitate discussions and decision-making. The study will involve interviews and surveys conducted at 1, 6, and 12 months post-enrollment to assess family preparedness and shared decision-making outcomes. The intervention is designed to enhance communication between families and healthcare providers, particularly focusing on Spanish-speaking participants.

Why it matters

Who can join: the full rules

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.

Where it's running

• Johns Hopkins All Childrens Hospital
  Tampa, Florida, United States Recruiting
• Children's Hospital New Orleans
  New Orleans, Louisiana, United States Recruiting
• Johns Hopkins University School of Medicine
  Baltimore, Maryland, United States Recruiting
• Seattle Childrens Hospital
  Seattle, Washington, United States Recruiting

Study contacts

• Principal investigator: Renee Boss, MD — Johns Hopkins School of Medicine
• Study coordinator: Renee D Boss, MD
• Email: rboss1@jhu.edu
• Phone: 4106146444

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How to take part

1. Review the eligibility criteria above with your treating physician.
2. Check the official listing on ClinicalTrials.gov for the latest contact details and recruitment status.
3. Contact the study coordinator or principal investigator to ask for pre-screening. Pre-screening is free and never obligates you to enroll.