The PCCNRP is specifically designed to identify, treat and study problems related to what is called Post Intensive Care Syndrome (PICS). We take a team-based multidisciplinary approach to address physical, cognitive, emotional, and social/family health by recognizing that each child and family are unique, each experience in the PICU is unique, and the recovery process for each child and family is unique and requires an integrated approach in care. 

From the beginning, the primary goal of PCCNRP has been to provide patients and families a personalized patient care experience following discharge from the PICU – ensuring patients and families do not “fall through the cracks” on the journey toward recovery. 

We recognize the need to continue to grow and improve our processes to ensure every child and family has an optimal recovery; this is why we are passionate about research. We use research to inform best practices in our clinical model and we use our clinical model to tell us what research is important to undertake and where there is a need.

Supporting Parent Emotional Coping and Trauma Resilience after PICU Hospitalization (SPECTRAH)

Critical illness and injury requiring treatment in the pediatric intensive care unit (PICU) is often traumatic and occurs without warning. Some parents/caregivers feel overwhelmed, helpless, and afraid. Even after coming home from the hospital, parents sometimes describe feeling immense uncertainty, fear, and exhaustion related to caring for their child.

As part of this study, upon leaving the hospital, we are offering parents of 2–6-year-old children anticipatory guidance about the changes they may see in their child and how they can support them. Information is included in a detailed packet families can bring home. Parents will also receive supportive weekly check-in calls with a provider in our clinic during their first month home from the hospital.

Families will return to the hospital for their standard PCCNRP follow-up clinic visit 4-6 weeks after hospital discharge. Data collected during that visit will be used to better understand the feasibility, acceptability, and effect of this intervention (compared to families who received care prior to the start of this intervention study).

Aim 1: Evaluate the effect of the supportive parenting intervention on parental post-traumatic stress symptoms.

We are using data from questionnaires parents complete at their child’s PCCNRP follow-up clinic visit to measure the effect of the intervention.

Aim 2: Evaluate the effect of our supportive parenting intervention on child recovery.

We will evaluate whether the parenting intervention improves child emotional and cognitive recovery using data from the PCCNRP follow-up clinic visit.

This study is actively recruiting, and you can contact the study team for information. 

This study is funded by the Talwalkar Mentorship Award.

Clinical Database

We code up to 1,519 discrete variables (for each patient) into a REDCap database. Over time, we can evaluate the data to quantify outcomes, identify risk factors, and highlight gaps in care so that we can continue to improve care for our patients and those across the world. 

• Information about the injury and/or illness (including what life was like for the patient and family before being hospitalized)
• Information about the course of treatment in the hospital
• Information about the course of treatment and intervention after the hospital
• Information from several direct neurocognitive assessments
• Information from several parent/caregiver completed assessments