A pediatric intensive care journal to support caregivers’ coping and communication: A quality improvement study

Research Objectives: To examine caregivers’ use of a pediatric intensive care unit (PICU) journal, assess perceived benefits, and identify journal optimization.

Design: Quality Improvement Study

Setting: A 36-bed tertiary care PICU in a children’s hospital

Participants: All families of children with an anticipated PICU stay of >72 hours were provided the journal. Caregivers were invited to participate if they were >18 years old and read and write fluent English.

Interventions: A PICU journal designed to support caregivers during their child’s illness through: 1. self-expression prompts; 2. monitoring their child’s progress; 3. familiarization with the PICU environment; 4. facilitating communication; and 5. preparation for post-hospital recovery.

Main Outcome Measures: A study-made survey to quantitatively and qualitatively assess caregivers’ reported journal use and experiences, including their perceived benefits and suggested optimization. Descriptive statistics and qualitative narrative analysis were conducted.

Results: We distributed journals to 135 caregivers from September 2021-August 2022 and 68 (50%) provided feedback. Of those, 36 (53%) reported journal use. Five of the caregivers who did not use the journal reported using a personal journal. Caregivers who used the PICU journal agreed-to-strongly agreed that the journal helped them communicate with the medical team (93%), manage feelings of anxiety (89%), and understand PICU care (70%). Monitoring their child’s progress was ranked as the most helpful component of the journal. Themes identified through narrative analysis pertained to improving journal implementation (e.g., timing of delivery, support with use) and customizability (e.g., size, ability to add more pages).

Conclusions: PICU journals hold potential for supporting caregivers during their child’s critical illness. However, the ability to customize the journal for individual needs and availability of a journal ‘champion’ to support implementation are important barriers to address to optimize effective use.

Author(s) Disclosures: This work was supported in part by the NIH (K23HD106011) and UPMC CHP Foundation.