A Qualitative Study of Parents' Experiences in the Pediatric Intensive Care Unit: Riding a Roller Coaster

Purpose: Post-traumatic stress disorder rates in parents following PICU admission ranged between 12.2% and 42%. Despite the numbers affected and the magnitude of parents' distress, little is known about parents' experience in the PICU that could be a source of their stress. This study sought to describe parents' experience of the PICU during their child's stay, including their perceived stressors. Design and methods: Single occasion interviews with 15 parents of children with complex medical conditions admitted for 48 or more hours to a tertiary PICU in the USA. Interviews were inductively coded using methods adapted from Grounded Theory. Results: Riding a Roller Coaster was the core construct that explained parents' experiences. Analyses revealed four domains: Being in a New Stressful World, My Brain Is Burning All the Time, Going through a Hurricane of Emotions, and Being in a Safe Place with Great People. Conclusion: Despite outstanding medical services, parents were traumatized by seeing their child in a life-threatening situation and were buffeted by a tidal wave of emotions. Parents lived in a constant state of uncertainty, helplessness and fear, not knowing if their child would survive or have devastating outcomes or permanent disabilities. Practice implications: Supporting parents during their emotional roller coaster ride requires targeted services throughout the child's illness trajectory, including ways to interpret what is happening in the PICU, helping parents self-regulate their stress, and offering services around parents' fears, concerns, and strategies to manage their uncertainty and feelings of helplessness. (C) 2019 Elsevier Inc. All rights reserved.