Post-Intensive Care Syndrome in Pediatric Neurovascular Patients: A Qualitative Study of Parent Experiences

BACKGROUND: Post-intensive care syndrome-pediatric (PICS-p) describes long-term physical, cognitive, emotional, and social health impacts seen in pediatric ICU survivors. These symptoms can extend to family members (PICS-f) and have long-term impacts. PICS-p in neurosurgery patients has not been characterized. This pilot project used qualitative methodology to describe PICS in pediatric neurovascular patients and their families. MATERIALS AND METHODS: Using our single institution's pediatric neurosurgery database, patients who had surgery following an acute neurovascular condition from 2022 to 2023 were identified. Parents/legal guardians of patients were eligible for this qualitative study. Semi-structured interviews explored patients' experiences in the ICU, PICS symptoms among patients and families, and quality of life following discharge from the ICU. Thematic analysis of transcripts was conducted. RESULTS: Six parents of neurovascular surgery patients were interviewed. The mean age at surgery was 14 (range 11-18) years old. The mean length of ICU stay was 10.8 (range 1-28) days; 50% (N=3) of parents reported symptoms of confusion or diagnosed delirium in their child while in the ICU, 83.3% (N=5) of parents reported PICS symptoms in their child, and 50% (N=3) reported PICS symptoms within their family. The mean follow-up was 17.2 months (range 10.3-25.2). Thematic analysis revealed four themes related to parents' experience in the ICU, the short- and long-term impact of PICS symptoms, and how families adapted to life after hospitalization. CONCLUSIONS: Patients and families continued to experience symptoms of PICS over a year after discharge from the ICU, which has a significant impact on quality of life. Awareness of PICS is essential. Future studies are warranted.