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Group Psychotherapy for Parents of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome

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Abstract

Parents of children with diagnoses of Pediatric Acute-onset Neuropsychiatric Syndrome (PANS) and Pediatric Autoimmune Neuropsychiatric Disorder Associated with Streptococcal Infections (PANDAS) may experience significant psychological distress related to their child’s severe and relapsing illness and challenges with the traumatic nature of its treatment. No manualized or studied psychological interventions specifically for parents of youth with PANS have existed prior to this study. In this pilot study, we assessed the feasibility, satisfaction, and treatment fidelity of a brief 9-session group therapy intervention for parents based on principles of trauma-focused cognitive behavior therapy (CBT). We hypothesized that, if initially elevated, symptoms of depression, anxiety, and trauma would decrease and participants’ utilization of positive coping mechanisms would increase post-intervention. We adapted an existing evidence-based group intervention developed for parents of children with premature infants to target sources of stress and coping in parents of children with PANS. Ten parents participated in the study. The 9-session intervention used a combination of techniques that included cognitive restructuring, coping skills, self-care, and a trauma narrative to address psychological stress, trust, grief, and unwanted emotions. Outcome measures included parental symptoms of anxiety, depression, and posttraumatic stress disorder (PTSD), as well as rating of parental satisfaction with the intervention. The treatment was feasible and deliverable with high fidelity. The intervention was rated as useful and satisfactory by parents (overall average usefulness of 4.54 and satisfaction of 4.71 out of 5.0). Elevated symptoms of PTSD and depression decreased with large effect sizes (Cohen’s d = 1.42 and Cohen’s d = 1.38, respectively). Participating parents demonstrated significantly more active coping and acceptance behaviors and stances. A brief 9-session group therapy intervention based on principles of trauma-focused CBT was found to be effective in reducing symptoms of psychological distress in parents of children with PANS.

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This manuscript is original, not previously published, and is not under concurrent consideration elsewhere. All data and materials as well as software application and code support the claims presented in this manuscript and comply with field standards.

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Study code will be made available to researchers with IRB approval, upon request for transparency and study replication in accordance with professional and field standards.

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Hannah Ellerkamp, Margo Thienemann, and Richard Shaw contributed to conceptualization; Hannah Ellerkamp, Margo Thienemann, Jason Tinero, LaTrice L. Dowtin, and Tonyanna Caren Borkovi contributed to methodology; Hannah Ellerkamp and Margo Thienemann contributed to formal analysis and investigation; Hannah Ellerkamp contributed to writing—original draft preparation; Hannah Ellerkamp, Margo Thienemann, Richard Shaw, Jason Tinero, LaTrice L. Dowtin, Jennifer Frankovich, and Tonyanna Caren Borkovi contributed to writing—review and editing; LaTrice L. Dowtin and Richard Shaw contributed to funding acquisition; Hannah Ellerkamp, Jason Tinero, Tonyanna Caren Borkovi, and LaTrice L. Dowtin contributed to resources ; Margo Thienemann contributed to supervision. All authors read and approved the final manuscript.

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Correspondence to Margo Thienemann.

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The authors have not disclosed any competing interest.

Ethical Approval

This study was approved by the Stanford University Institutional Review Board (IRB-48567).

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All participants of this study received written and verbal information regarding their ability to consent and withdraw consent from the study at any time. Participant data used for this manuscript solely includes participants who consented to their participation in this research.

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Ellerkamp, H., Thienemann, M., Tinero, J. et al. Group Psychotherapy for Parents of Youth with Pediatric Acute-Onset Neuropsychiatric Syndrome. J Clin Psychol Med Settings 30, 660–672 (2023). https://doi.org/10.1007/s10880-022-09926-0

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  • DOI: https://doi.org/10.1007/s10880-022-09926-0

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