Parental Stress, Pediatric Quality of Life, and Behavior at Baseline and One-year Follow-up: Results from the FEBSTAT Study

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R. C. Shinnar, S. Shinnar, D.C. Hesdorffer, K. O’Hara, T. Conklin, K.M. Comett, D. Miazga, S. Sun, the FEBSTAT Study Team. Epilepsy & Behavior, 69(2017):95-99.

Purpose

Febrile status epilepticus (FSE) is a medical emergency that is frightening for the child and parents. The aim of this portion of the FEBSTAT research study was to understand the immediate and long term effects of an event of febrile status epilepticus on parent stress and their views of their child’s physical and psychosocial wellbeing.

Description of Study

  • This study followed 199 children, age 1 month to 5 years, from different epilepsy centers over a period of time.
  • The study group was compared to a group from the Columbia Study of First Febrile Seizures. This group included children with simple febrile seizures and 15 with febrile status epilepticus. They ranged in age from 6 months to 5 years.
  • At one month and one year after episode of febrile status epilepticus, parents completed the Parenting Stress Index/short form (PSI/SF), the Pediatric Quality of Life Inventory (PedsQL), and the Child Behavior Checklist (CBCL). Children had baseline neuropsychological testing done at 1 month.

Summary of Study Findings

  • Parents of children who had a simple febrile seizure had more stress at baseline than those with febrile status epilepticus, but this difference was not present at one year.
  • Parental stress was significantly higher at baseline and at one year in parents whose children initially had problems with development compared to parents of children with normal prior development.
  • The highest parental stress scores were in the group of children who developed epilepsy within one year or had repeated episodes of FSE.
  • Problems with development initially was associated with decreasing quality of life for the children at one year compared to those with prior normal development.

What does this mean?

  • Simple febrile seizures and febrile status epilepticus are stressful for parents. In this study, an initial episode of febrile status epilepticus did not have significant negative effects on parental stress, quality of life, or behavior. However, parental stress was higher in parents of children who have abnormal development before an episode of FSE. In addition, parental stress rose in those whose children developed epilepsy or had repeated episodes of FSE.
  • It is important for care providers to identify other health or developmental problems that may contribute to stress and quality of life in these families.
  • Family support at the time of the event and intermittently throughout the first year may be helpful in reducing parental stress and promoting good quality of life.

Article published in Epilepsy & Behavior, April 2017.

Authored By:
Rebecca J. Schultz PhD, RN, CPNP
on
04/2017
Reviewed By:
Christianne Heck MD
on
Monday, April 17, 2017
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