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

Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) is characterized by the abrupt onset of neuropsychiatric symptoms, including obsessive-compulsive disorder and/or restricted food intake, in response to infection or other triggers. This mixed methods systematic review synthesized evidence on the lived experience and psychosocial impacts of caring for a child with PANS. Seventeen publications of moderate to high quality met eligibility criteria. Four synthesized findings emerged from the qualitative meta-aggregation: (i) broad psychosocial impacts on caregivers and families; (ii) shock and ongoing uncertainty arising from the sudden, severe onset and unpredictable symptom flares; (iii) pervasive systemic barriers to timely diagnosis, treatment, and educational support; and (iv) caregivers' proactive responses to the challenges of navigating PANS. Narrative synthesis of quantitative findings highlighted increased caregiver burden, and elevated psychological distress and relationship dissatisfaction. Disease activity, diagnostic and treatment delays, and disruption to schooling and employment were associated with greater impact. Implications for improving clinical recognition and supporting caregiver and family wellbeing are discussed.