Abstracts

Rationale: Functional seizures are prevalent in pediatrics and are a common cause of hospitalizations. Effective and credible communication of a diagnosis of functional seizures is paramount to optimize therapeutic outcomes by promoting diagnosis acceptance and connection to therapies. This study’s purpose was to understand the diagnosis communication experiences and preferences of youth diagnosed with functional seizures, and their parents/caregivers, using qualitative methodology.

Methods: We conducted semi-structured interviews with youth with a diagnosis of functional seizures and their parents separately, recruited from a tertiary-care children’s hospital. We confirmed the diagnosis of functional seizures with the youth’s treating providers. All interviews were audio-recorded and professionally transcribed. Two coders performed thematic analysis and determined themes.


Results: Thirteen youth [12-18 years of age] and thirteen parents completed interviews separately. Themes included: (1) Both parents and youths reported substantial fear about their symptoms, diagnosis, prognosis, and treatment options. (2) Good communication skills highlighted included providing reassurance, listening, and allowing time for questions, with different preferences between youth and parents in the mode of communication. (3) Poor communication for both youth and parents included use of medical jargon, brevity of communication, especially with the youth, minimization of youth’s symptoms, lack of apparent compassion, and lack of written materials to supplement discussions. (4) Perspectives on the role of mental health in functional seizures were heterogenous, yet concrete treatment plans were desired including access to behavioral therapy. (5) Youths and parents wanted practical guidance including plans for school and how to respond to functional seizures in all settings.

Conclusions: Youth with functional seizures and their parents provided concrete recommendations for optimal diagnosis communication, including specific positive and negative examples. Study findings will inform the future development of an educational intervention to improve pediatric neurologists’ communication of a diagnosis of functional seizures to adolescent youths and parents/caregivers. Findings may further aid health care professionals, parents, and education systems in creating and implementing a supportive environment for pediatric youths with functional seizures.

Funding: This work was funded by the Department of Pediatrics, University of Pittsburgh. Dr. Kerr’s research time is funded, in part, by the American Academy of Neurology, American Epilepsy Society, Epilepsy Foundation, and American Brain Foundation. Dr. Harris’s research time is funded by the National Palliative Care Research Center. Dr. Kirkpatrick’s research time is funded, in part, by the Child Neurologist Career Development Program and Child Neurology Foundation.