Lived Experiences of Delirium in Critically Ill Children: A Qualitative Study

Abstract The aim of this study was to understand the lived experiences of delirium in critically ill children. We conducted phenomenological qualitative interviews with critically ill pediatric survivors aged 0 to 18 years who had experienced delirium, along with their family caregivers and health care providers, from pediatric intensive care units in two tertiary care children's hospitals in Canada. Cases were identified if they had a Cornell Assessment of Pediatric Delirium (CAPD) score of ≥ 9 for at least 48 hours. Thirteen interviews were conducted, representing 10 index patients with delirium (age range: 7 weeks to 17 years). Participants shared experiences that were divided into themes of delirium symptoms, the impact of delirium, and their experience with the care of delirium. Within each theme, subthemes were identified. Symptoms of delirium included hallucinations, fluctuating symptoms, and lack of eye contact. Children were often described as “not himself/herself.” Delirium had long-lasting impact on patients; memories remained prominent even after the hospital stay. Family members and health care providers often felt helpless and ill-prepared to manage delirium. The delirium experience had significant impact on loved ones, causing persistent and vicarious suffering after the critical illness course. Family members and health care providers prioritized nonpharmacological strategies, family presence, and education as key strategies for delirium management. The lived experience of delirium in both infants and older children is physically, psychologically, and emotionally distressing. Given the traumatic long-term consequences, there is an urgent need to target delirium education, management, and prevention to improve long-term outcomes in PICU survivors and their families. Trial Registration number:  NCT04168515.