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

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.

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.

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.

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.

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.