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.
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AI-rewrites the medical criteria so a patient or caregiver can understand them. Always confirm with the trial site.
Parent/Caregiver reported stress level
Timeframe: At study enrollment (T1), within 48 hours of child's discharge from hospital (T2)
Parent/Caregiver care engagement level
Timeframe: At study enrollment (T1), within 48 hours of child's discharge from hospital (T2)
Parent/Caregiver reported depression and anxiety symptoms
Timeframe: within 48 hours of child's discharge from hospital (T2), at 3 months post-discharge (T3)
Parent/caregiver reported impact of events
Timeframe: at 3 months post-discharge (T3)
Parent/Caregiver use of and satisfaction with PICU journal
Timeframe: within 48 hours of child's discharge from hospital (T2), at 3 months post-discharge (T3)
Child reported impact of events
Timeframe: at 3 months post-discharge (T3)
Parent/caregiver Experiences Interview
Timeframe: at 3 months post-discharge (T3)
PICU Staff perceptions of PICU journal intervention
Timeframe: Through study completion, an expected average of 2 years