Long-term Sequelae of Pediatric Neurocritical Care: The Parent Perspective

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.

Parent and Physician Report of Discussions About Prognosis for Critically Ill Children*

“…Parents value clear communication from healthcare providers about their child's medical condition(s) (1)(2)(3). Communication with parents should include information about prognosis when appropriate.…”

Parental posttraumatic stress symptoms in the context of pediatric post-intensive care syndrome: Impact on the family and opportunities for intervention.

“…For example, whereas children are often amnestic of their time in the PICU and the preceding events, parents routinely describe recurrent and invasive memories. We previously conducted focus groups with parents of PICU survivors to understand their experiences of care, identify family-centered outcomes, and determine potential avenues of enhancing care (Williams et al, 2018). Parents emphasized the psychological sequelae of PICU survivorship, somewhat contrary to the historical emphasis on physical health outcomes of most critical care research.…”

“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

“…However, several studies of recovery following critical illness demonstrate the power and value of qualitative methodology. 2,[13][14][15][16][17][18][19][20] These narratives by survivors and their families illuminate the true impact of quantifiable morbidities on recovery, reintegration into society, and quality of life. For example, 14 parents of survivors of pediatric neurocritical illness described survivorship as a chronic illness, highlighting the significant physical, psychological, and social impacts.…”

“…To optimize recovery and address long-term consequences of brain injury, parents requested increased awareness, education, and access to additional therapies and mental health resources following hospitalization. 19 In another study, nine survivors of pediatric critical illness described significant disruption in their lives which forced them to redefine their identities in different social contexts.…”