Family Connections

  • End date
    Jun 27, 2023
  • participants needed
  • sponsor
    Johns Hopkins All Children's Hospital
Updated on 4 October 2022
Accepts healthy volunteers


This study seeks to evaluate a Structured Family Deliberation that will serve as the primary intervention in a multicenter controlled trial involving families considering tracheostomy and home ventilation for the child. In this study, the investigators will evaluate the feasibility, usefulness, face validity, and preliminary impact of this approach on preparedness for decision making among participants.


The investigators will recruit 10 intervention families and 5 control families who are currently admitted to the neonatal or pediatric intensive unit and whose physician anticipates a decision about home ventilation within the next 30 days. Intervention families will receive the Structured Family Deliberation, which includes a guided review of a web-based decisional aid. Control families will receive a link to the website for independent review. All families will be assessed at 1 month with a survey assessing preparedness for decision-making, parental stress and coping, and a qualitative interview.

Condition Chronic Respiratory Failure
Treatment Structured Family Deliberation
Clinical Study IdentifierNCT05379439
SponsorJohns Hopkins All Children's Hospital
Last Modified on4 October 2022


Yes No Not Sure

Inclusion Criteria

Parents/legal guardians of children admitted to the neonatal or pediatric intensive care unit and whose physician anticipates a decision about home ventilation within the next month

Exclusion Criteria

Parents will be excluded if
their child is in foster care or state guardianship
they are unable to understand the purpose of the study
they cannot reasonably participate in study demands
are not fluent in English (the web-based decisional aid is not yet available in other languages)
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Additional screening procedures may be conducted by the study team before you can be confirmed eligible to participate.

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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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