Parental perception of FIRES outcomes, emotional states, and social media usage

OBJECTIVE: To investigate parental perception of FIRES outcomes, assess emotional states and related social media usage. METHODS: A survey‐based study of parents of children with FIRES participating in a FIRES‐specific Facebook group was performed. The survey collected information on medical aspects of their child's course in the acute, subacute, and chronic periods, emotional states, and social media usage. Child outcome was assessed utilizing the pediatric extended Glasgow outcome scale (GOS‐E). Parental emotional states were assessed utilizing the Depression, Anxiety and Stress Scale (DASS). Descriptive statistics were performed. Associations were described using the Spearman rank correlation. Open‐ended questions were included. Thematic analysis was performed. RESULTS: Twenty‐nine surveys were analyzed. All children were in the chronic phase at time of survey response, except for two who died. Mothers answered 22 surveys, and fathers answered seven. Median age at FIRES presentation was 5.6 years [IQR 4.2‐8.95], with a median number of 3 seizures per week [IQR 0‐10, range 0‐50], 4 daily anti‐seizure medicines [IQR 3‐5], and chronic GOS‐E of 6 [IQR 2‐8 range 2‐8]. Most parents reported none to mild levels of depression, anxiety, and stress. Higher seizure burden positively correlated with parental depression symptoms (r = .41 (95% CI 0.01, 0.70), P = .045). Most parents found social media helpful with coping and 96% desired FIRES research advertised. Twenty‐five parents shared their recommendations to fellow parents and the medical team in an open‐ended format. Themes included support, expertise, and medical advice. SIGNIFICANCE: Despite their children's significantly impaired functional outcome after FIRES and high rates of medically refractory epilepsy, the cohort demonstrated remarkable emotional resilience. They perceive social media as beneficial, are interested in social media‐advertised research, and share valuable advice. Social media may serve as an introductory platform to enhance the physician‐scientist‐parent/patient relationship.