ArticleJournal of pediatric intensive care2018
Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective.
Article in Journal of pediatric intensive care, 2018. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 21 papers.
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Who cites it
21 citing papers in PubMed.
- Post-Intensive Care Syndrome in Pediatric Neurovascular Patients: A Qualitative Study of Parent Experiences.Cureus · 2025Article
- Eight PICU Follow-Up Programs in the United States Established From 2013 to 2022: Report From the Pediatric Outcomes Studies After PICU (POST-PICU) Investigators.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2025Article
- Parental emotional, social and transitional health in the first 6 months after childhood critical illness: A longitudinal qualitative study.Journal of advanced nursing · 2025Article
- Pediatric Post-Intensive Care Syndrome and Current Therapeutic Options.Critical care clinics · 2025Review
- Long-term multidisciplinary follow-up programs in pediatric cardiac arrest survivors.Resuscitation plus · 2024Article
- "I Didn't Realize How Hard It Was Going to Be Just Transitioning Back into Life": A Qualitative Exploration of Outcomes for Survivors of Pediatric Septic Shock.Journal of pediatric intensive care · 2024Article
- Post-PICU sleep efficiency and quality of life in infants and toddlers with acquired brain injury.Journal of clinical sleep medicine : JCSM : official publication of the American Academy of Sleep Medicine · 2024Article
- The Impact of Sleep Disturbances on Health-Related Quality of Life in Children With Acquired Brain Injury After Critical Care.Pediatric neurology · 2023Article
- Variability Across Caregiver and Performance-Based Measures of Executive Functioning in an Acute Pediatric Neurocritical Care Population.Neurotrauma reports · 2023Article
- Effectiveness of Training Programs for Reducing Adverse Psychological Outcomes in Parents of Children with Acquired Brain Injury: A Systematic Review and Meta-Analysis.Neurology and therapy · 2022Article
- Is Pediatric Intensive Care Trauma-Informed? A Review of Principles and Evidence.Children (Basel, Switzerland) · 2022Review
- Post-Intensive Care Syndrome in a Cohort of School-Aged Children and Adolescent ICU Survivors: The Importance of Follow-up in the Acute Recovery Phase.Journal of pediatric intensive care · 2022Article
- Continuing Care For Critically Ill Children Beyond Hospital Discharge: Current State of Follow-up.Hospital pediatrics · 2022Article
- Article
- Parental Posttraumatic Stress Symptoms in the Context of Pediatric Post Intensive Care Syndrome: Impact on the Family and Opportunities for Intervention.Clinical practice in pediatric psychology · 2021Article
- Emotional Aspects of Pediatric Post-Intensive Care Syndrome Following Traumatic Brain Injury.Journal of child & adolescent trauma · 2021Article
- Parental Mental Health Care After Their Child's Pediatric Intensive Care Hospitalization.Pediatric critical care medicine : a journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies · 2020Observational
- Post-Intensive-Care Syndrome for the Pediatric Neurologist.Pediatric neurology · 2020Review
- Pediatric Traumatic Brain Injury in the United States: Rural-Urban Disparities and Considerations.Brain sciences · 2020Review
- Hospital Mortality and Functional Outcomes in Pediatric Neurocritical Care.Hospital pediatrics · 2019Observational
Corrections and comments
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Authors and funding
7 authors.
Funding
Abstract
Critical neurologic disease and injury affect thousands of children annually with survivors suffering high rates of chronic morbidities related directly to the illness and to critical care hospitalization. Postintensive care syndrome (PICS) in patients and families encompasses a variety of morbidities including physical, cognitive, emotional, and psychological impairments following critical care. We conducted a focus group study with parents of children surviving pediatric neurocritical care (PNCC) for traumatic brain injury, stroke, meningitis, or encephalitis to determine outcomes important to patients and families, identify barriers to care, and identify potential interventions to improve outcomes. Sixteen parents participated in four groups across Oregon. Three global themes were identified: (1) PNCC is an intense emotional experience for the whole family; (2) PNCC survivorship is a chronic illness; and (3) PNCC has a significant psychological and social impact. Survivors and their families suffer physical, emotional, psychological, cognitive, and social impairments for many years after discharge. Parents in this study highlighted the emotional and psychological distress in survivors and families after PNCC, in contrast to most PNCC research focusing on physical outcomes. Several barriers to care were identified with potential implications on survivor outcomes, including limited pediatric resources in rural settings, perceived lack of awareness of PICS among medical providers, and the substantial financial burden on families. Parents desire improved education surrounding PICS morbidities for families and medical providers, improved communication with primary care providers after discharge, access to educational materials for patients and families, direction to mental health providers, and family support groups to assist them in dealing with morbidities and accessing appropriate resources. Clinicians and researchers should consider the parent perspectives reported here when caring for and evaluating outcomes for children requiring PNCC.
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