The Lived Experience and Psychosocial Impact of Caring for a Child with Pediatric Acute-Onset Neuropsychiatric Syndrome (PANS): A Mixed Methods Systematic Review

SUMMARY

This mixed-methods systematic review synthesizes the available evidence on the lived experiences and psychosocial impact of caring for children with Pediatric Acute-onset Neuropsychiatric Syndrome (PANS), including studies involving PANDAS. Drawing from 17 moderate- to high-quality publications representing both qualitative and quantitative research, the authors provide comprehensive evaluations of how the PANS/PANDAS affects caregivers and families beyond the child’s neuropsychiatric symptoms. Four overarching themes emerged:

1. profound psychosocial burden experienced by families
2. shock and uncertainty associated with the abrupt onset and unpredictable course of PANS
3. persistent barriers to obtaining healthcare and educational support
4. proactive strategies caregivers adopt to advocate for their children and navigate healthcare

Across the 17 publications that met criteria for inclusion in the review, caregivers consistently described major disruptions to family life, including emotional distress, strained relationships, financial hardship, and significant changes to employment and daily routines. Many parents reported feeling isolated and overwhelmed as they attempted to manage severe neuropsychiatric symptoms while simultaneously seeking knowledgeable healthcare providers and appropriate school support. Quantitative findings reinforced these experiences, demonstrating elevated caregiver burden, high levels of stress and psychological distress, and reduced relationship satisfaction compared with population norms. Caregiver burden was greatest during symptom flares but often remained elevated even during periods of improvement. Greater disease severity, delayed diagnosis, prolonged access to specialized care, and school disruption were all associated with worse psychosocial outcomes for families.

The review highlights that the impact of PANS extends well beyond the impacted child, influencing the emotional, social, occupational, and financial wellbeing of the entire family. The authors conclude that improving clinician awareness, reducing diagnostic delays, expanding multidisciplinary care, and providing appropriate psychosocial support for caregivers are critical components of comprehensive PANS management.

LINK TO PAPER: https://doi.org/10.1007/s10578-026-02042-2