We seek to understand families' experiences around prolonged mechanical ventilation decisions to develop an effective decisional support for families.
Family members often experience high stress when their family member is critically ill. This is particularly true when involved in making medical decisions such as around longer-term use of mechanical ventilation (a breathing machine). Despite this, no effective decisional support and limited resources are available for these family members. This research enrolls family members who are faced with decisions around their family members remaining on the breathing machine, including whether to proceed with a tracheostomy. The researchers want to understand their experiences and develop effective decision support and resources. After hearing from family members, the next step will be to develop a supportive decision tool for family members based on their experiences. To do so, our research team will also be looking for family members to join our team to design the supportive tool.
Family members of people who received a tracheostomy within the last 6 months will participate in one survey and two one-hour interviews. The first interview occurs at least two weeks after tracheostomy, and the second will occur weeks to months later. Family members of people who did not receive a tracheostomy within the last two years will participate in one survey and one one-hour interview. The interviews will be audio-recorded in person, by phone, or videoconference per family member preference. We will also collect the patient’s medical history and information to understand better who they are and the medical aspects of their care.
We are looking for family members/friends who are 18 and older and involved in the patient’s care including decision-making around longer-term use of mechanical ventilation (a breathing machine) for their critically ill adult family/friend. This study will not be enrolling decision makers for patients who received an emergency tracheostomy or those who have received lung transplants.
Funded: T32 and ICRE award
Want to ask a question or share an idea with this researcher? Go ahead and ask!
Your question may end up on this page! The researcher will review all questions and decide whether to post the answer publicly. Your question will not be attributed to you.
Do you or does someone you know have a story related to this study? Your story can help this researcher know what to study.
We'd love to hear it.
We're sorry. Team building for this study is now complete and it is no longer engaging additional people.
Wondering what it's like to be a patient partner in a clinical study? Here are some links to resources.
Copyright 2019 | PaTH Network
