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

TL;DR

This study explores the long-term health and quality of life impacts on children and families after pediatric neurovascular ICU stays.

Contribution

It is the first qualitative study to characterize post-intensive care syndrome in pediatric neurovascular patients and their families.

Findings

Parents reported PICS symptoms in children and families up to 17 months after ICU discharge.

Themes included ICU experiences, long-term impacts, and family adaptation to post-hospital life.

Over half of the parents observed confusion or delirium in their children during ICU stays.

Abstract

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.