Children’s Awareness and Long-Term Quality of Life: A Mixed Methods Study of Pediatric Critical Care Unit (PCCU) Experiences | NYU Langone Health

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Patient & Participant Research Opportunities Children’s Awareness and Long-Term Quality of Life: A Mixed Methods Study of Pediatric Critical Care Unit (PCCU) Experiences

Children’s Awareness and Long-Term Quality of Life: A Mixed Methods Study of Pediatric Critical Care Unit (PCCU) Experiences

This study looks at reports of children’s memories or experiences at the time of unconsciousness during life-threatening illness, specifically for the purpose of determining children’s prevalence of perceived experiences of awareness and its qualitative themes. These memories may include visual or auditory perceptions, such as a perception of seeing relatives, seeing a bright light, or feelings of peace and happiness. Many adults have reported similar occurrences during unconsciousness at the time of life-threatening illness; however, studies that explore these reported phenomena are limited to adults. More information is needed to study these experiences in children.

Why This Pediatric Study May Be of Interest to You

The pediatric intensive care unit commonly sees children who are undergoing a life threatening, or critical illness which can result in loss of consciousness. For instance, one reason for loss of consciousness may be brought on by the heart temporarily stopping (cardiac arrest). There are an estimated 7,000 out-of-hospital cardiac arrests that occur among children annually in the U.S. Some children who are cardiac arrest survivors have reported transformative outcomes, such as a recollection of memories during unconsciousness, a life review, seeing a tunnel or a light, feelings of joy and peace, and a perception of seeing relatives.

Who May Participate in This Study

If you can answer “yes” to any of the following questions, you may be eligible to participate in this study:

  • Are you the parent of a child who survived a life-threatening illness that resulted in unconsciousness or cardiac arrest?
  • Is your child under the age of 18?
  • Did your child report a perception of memories or experiences during their time of unconsciousness due to a life threatening illness,for example a life review, feelings of peace, seeing a tunnel or light?
  • Under parental supervision, would you allow your child to be interviewed by a research team member regarding their experience and memories?

How This Study Will Take Place

This study involves two steps. First, you will be asked to complete a 10-minute pre-screening questionnaire to determine your child’s eligibility to enroll in the study. If your child is found eligible they will be asked to complete an interview followed by additional questionnaires regarding their experiences or memories. Interviews may take place in-person or by video conference under the supervision of a parent or guardian.

How Can I Participate In This Study

If you believe your child may qualify for this study, please access our screening questionnaire.

This study has been submitted to the Institutional Review Board at NYU Grossman School of Medicine (Study ID: s19-01897). If you have any questions regarding this study or would like to request more information, please email resuslab@nyulangone.org.