Enhancing Parent/Caregiver Engagement in the Pediatric Intensive Care Unit (PICU): A PICU Journal

Admission to the pediatric intensive care unit (PICU) is well-recognized to be extremely distressing and stressful for the patient and family. As medical research and technology have advanced more and more children in the PICU are surviving, however in turn incurring new and persistent impairments across physical, cognitive, emotional, and social domains of health. This phenomenon is often referred to as post-intensive care syndrome (PICS). These impairments not only impact the patient but parents have also been found to have poor emotional health outcomes following discharge from the PICU. Consistently, parents/caregivers of children admitted to the PICU report their primary concerns to be 1) the overwhelming physical environment of the PICU, 2) uncertainty about the child's survivorship and outcomes, 3) relationships and communication with staff, and 4) feeling helpless. Additionally, research has shown that caregiver-perceived stress during the child's hospitalization positively predicts post-traumatic stress three months after discharge for parents/caregivers (Nelson et al., 2019), which may translate into higher risk and duration of post-traumatic stress in their children. Therefore, providing an in-hospital outlet such as a "PICU Journal" for patients and families to express their subjective experiences may help bridge the gap between perception and reality as a means of buffering against post-traumatic responses. Conceptually, a semi-structured journal intervention may integrate the therapeutic aspects of journaling while also providing pertinent information and serving as an advocacy and communication tool. Prior research has demonstrated the use of a "PICU Journal" is feasible for implementation and has been well-received by families of children in the PICU (Herrup et al., 2019). Therefore, the aims of this mixed-method study are to 1) examine the relationship between this journaling intervention and the perceived stress, care engagement, symptoms of anxiety, and depression, and the development of PICS in parents of children hospitalized in the PICU, and 2) examine the relationship between parent participation in this intervention and the development of PICS-p in children, and 3) assess the feasibility of this intervention from key stakeholders.

Parent/Caregiver Inclusion Criteria: * The participant is a primary caregiver of a pediatric patient (ages 1 month to 21 years) admitted to the pediatric intensive care unit (PICU) at Monroe Carell Jr. Children's Hospital at Vanderbilt (MCJCHV) * The participant's child meets the criteria for Levels 1 or 2 of the Early Mobility Protocol at MCJCHV * The participant's child has been hospitalized in the PICU for between 24 and 72 hours at the time of informed consent. * The participant has not had prior experience with their child(ren) being admitted to the PICU. * The participant is proficient in reading and writing the English language. Parent/Caregiver Exclusion Criteria: * The participant is unwilling to provide consent. * The participant is unable to read and write in the English language. Child Inclusion Criteria: * The child participant is between the ages of 8 to 17 years. * The participant is proficient in reading and writing the English language. Child Exclusion Criteria: * The participant is unwilling to provide assent. * The participant is unable to read and write in the English language. Staff Inclusion Criteria: * The participant(s) interact with patients in the PICU at Monroe Carell Jr. Children's Hospital at Vanderbilt. * The participant is proficient in reading and writing the English language. Staff Exclusion Criteria \- The participant is unable to read and write in the English language.