Faculty Collaboration Database

Parental perception of FIRES outcomes, emotional states, and social media usage. Epilepsia Open 2021 Sep;6(3):539-547

Date

06/08/2021

Pubmed ID

34098587

Pubmed Central ID

PMC8408589

DOI

10.1002/epi4.12513

Scopus ID

2-s2.0-85108264040 (requires institutional sign-in at Scopus site)   3 Citations

Abstract

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.

Author List

Farias-Moeller R, Wood A, Sawdy R, Koop J, Olson K, van Baalen A

Authors

Raquel Farias-Moeller MD Associate Professor in the Neurology department at Medical College of Wisconsin
Jennifer I. Koop Olsta PhD Professor in the Neurology department at Medical College of Wisconsin

MESH terms used to index this publication - Major topics in bold

Adaptation, Psychological
Child
Child, Preschool
Female
Humans
Mothers
Parents
Perception
Social Media