Multicenter HomeVENT: Home Values and Experiences Navigation Track

Launched by JOHNS HOPKINS UNIVERSITY · Oct 19, 2023

Keywords

ClinConnect Summary

The Multicenter HomeVENT study is designed to help families and doctors make important decisions about home ventilation for children with respiratory issues. This study is exploring a new approach to support families as they navigate these choices, with the goal of making them feel more prepared and involved in the decision-making process. Participants will be divided into two groups: one will receive standard care, while the other will use a special website that guides them through questions and information about home ventilation. Families will share their experiences through interviews and surveys at different times over the next year.

To participate, you need to be an English or Spanish-speaking adult (18 years or older) who is the parent or primary caregiver of a child facing a decision about home ventilation. You can also be a physician involved in that child’s care. If you join the study, you’ll need to agree to all study procedures and have access to the internet or phone to engage with the study materials. This study is important because it aims to improve communications between families and healthcare providers during a very challenging time.

Gender

ALL

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.