Feasibility Trial of a Parent Peer-Co-Led Caregiver Group for Pediatric Early Onset Schizophrenia Spectrum Disorders

Schizophrenia spectrum disorders (SSD) are a group of disorders defined by the presence of delusions, hallucinations, disorganized thinking, grossly disorganized or abnormal motor behavior, and/or negative symptoms, and typically present between late teens and mid-30s. While treatment approaches for adults with SSD are well-established, evidence-based psychosocial interventions for pediatric early-onset SSD (EOSSD; onset \<18 years) remain limited. Current recommendations emphasize psychotropic interventions, with little empirical support for psychosocial treatments, underscoring the urgent need for clinical research in this population. Although extensive research supports psychosocial interventions for first episode psychosis (FEP), studies specific to pediatric EOSSD are scarce. Existing research has evaluated cognitive remediation, cognitive behavioral therapy (CBT), and family interventions \[5\] for EOSSD. In one study comparing CBT to treatment-as-usual (TAU), no significant differences emerged on PANSS scores; follow-up completion was low, and only 3 of 11 participants achieved a good response (\>50% reduction in PANSS total score) \[6\]. A recent review by Kelleher et al. \[2\] concluded that such poor outcomes suggest there is limited effectiveness of CBT for EOSSD in real-world care, highlighting the need for alternative treatment approaches. In addition to the limited evidence on individual psychosocial approaches, even though including caregivers/families in treatment is an integral component in gold-standard care in FEP treatment, to our knowledge only one other study has explored the effects of a caregiver/family-focused intervention for pediatric EOSSD. In this one study, participants who were in the structured family intervention had significantly fewer visits to the emergency department (13% vs 50%) and saw greater symptom improvement. The use of parent peers (also termed parent partners or parent-to-parent programs) is an emerging strategy for delivering psychoeducation and support to parents of youth with behavioral health challenges (e.g. autism, inpatient hospitalization) with promising evidence. A review of 25 parent-to-parent interventions for caregivers of youth with autism found that parents were effective in delivering the intervention and reported benefits to include developing a sense of belonging and alleviating social isolation, which are frequently reported as areas of need by our caregivers of youth with EOSSD. In sum, while psychosocial interventions are well-studied in adult SSDs, pediatric EOSSD remains an under-researched area with poor treatment outcomes. The few existing studies show that caregiver and peer involvement may be particularly impactful. To address these gaps, the current study will evaluate the feasibility and acceptability of a psychoeducation group for caregivers of youth ≤18 years with EOSSD (schizophrenia, schizoaffective disorder), co-led, and co-designed by a licensed psychologist and a caregiver with lived experience.