JMIR Publications

ABSTRACT

Background:

Pediatric intensive care unit (PICU) associated delirium decreases post-discharge quality of life with worse outcomes in those with delayed identification. As screening rates are not uniformly conducted within PICUs, caregivers may assist with early detection, for which they need education, as pediatric delirium awareness among caregivers remains limited.

Objective:

To develop an educational tool for caregivers to identify potential delirium symptoms during their child’s PICU stay, educate them on how to best support their child with delirium, and guide them to relevant family resources.

Methods:

Virtual focus groups were conducted at a tertiary pediatric hospital with expected tool end-users (PICU healthcare professionals and caregivers of children with an expected PICU length of stay of over 48 hours) to identify potential educational information for inclusion in a family resource guide and identify strategies for effective implementation. Data were analyzed thematically to generate requirements to inform prototype development; participants then provided critical feedback on the initial prototype, which guided the final design.

Results:

Twenty-four participants (18 healthcare professionals and 6 caregivers) attended seven focus groups. Participants identified five informational sections for inclusion: 1) delirium definition, 2) key features of delirium (signs and symptoms), 3) post-discharge outcomes associated with delirium, 4) tips to inform family-centered care, and 5) education/supportive resources. Participants identified seven design requirements: information should 1) be presented in an order that resembles the structure of the clinical discussion around delirium; 2) increase accessibility, recall, and preparedness by providing multiple formats; 3) aim to reduce stress by implementing positive framing; 4) minimize cognitive load to ensure adequate information processing; 5) provide supplemental electronic resources via QR codes; 6) emphasize collaboration between caregivers and the healthcare team; and 7) use prompting questions to act as a call to action for caregivers.

Conclusions:

Key design requirements derived from end-user feedback were established and guided the development of a novel pediatric delirium education tool. Implementing this tool into regular practice has the potential to reduce distress and assist in the early recognition and treatment of delirium in the PICU domain. Future evaluation of its clinical utility is necessary. Clinical Trial: N/A