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How Parents Respond to Their Child's First Seizure
 

An interview with Tammy L. Still, RN

By Rita Watson, MPH

When a child has a first seizure, parents and onlookers often witness a frightening experience that triggers many concerns and questions. “We found that many parents were fearful of brain damage and even death. Parents and families need consistent levels of information,” said Tammy L. Still, RN, who, with a team at Alberta Children’s Hospital in Canada, conducted a study to explore the responses of families after what appeared to be a first seizure event. The findings were reported at the recent American Epilepsy Society meeting. Tammy Still told epilepsy.com during an interview, “What is key here is devising an action plan. We felt we needed a fact sheet to separate out the myths. The questions we asked helped us determine how to proceed.”

Methods and Results
From a prospective cohort of 127 consecutive children with a probable first seizure admitted to Alberta Children’s Hospital during a 14 month period beginning January 1, 2004, there were 104 families who agreed to participate in the study. According to the meeting report “families were interviewed prior to the visit with the epileptologist and were asked open-ended questions….” Their responses were recorded onto a database. The information documented included answers to the following questions:

  • How parents felt at the time of the first seizure.
  • Where they went for information.
  • The kind of resources they used.
  • Their perceptions regarding the impact of the first seizure on the relationship with their child.

The report noted: Of those interviewed, “74% of children were diagnosed with epileptic events, 24% with non-epileptic events and in 2% the events were unclassifiable.”

Words used by parents to describe their feelings were similar in both the epileptic and non-epileptic families. They said they were: “scared”, “terrified”, “panicked”, “helpless”, feeling “useless”, “confused”, “very upset”, “horrible”, “anxious”, “shocked”, “worried”, “frightened”, “stressed”, and “freaked out”.

In terms of follow-up information it was noted that 23% of parents relied solely on oral or written information provided by health care providers (emergency physicians, family physicians, pediatricians, paramedics, and nurses); 11% relied on information from the Internet; 4% used library and text books; 8% asked family and friends; and 21% used a combination of sources. Additionally 67 parents (64%) reported that the relationship with their child had changed. Approximately one-third of the parents did not seek any follow-up information.

Conclusion
Although the report stated that “the first seizure is an emotional event,” it emphasized that “a significant proportion of families did not seek further information regarding their child's event. The most common single source of information for families is health care providers. Over two thirds of families reported providing closer supervision of their children and restriction of activities.”

According to Tammy Still, “What we see is a need for consistent levels of information. We need to determine: What information are families getting? What information are they taking home? What did they want to get in terms of information? How can we help address the myths about epilepsy?”

She added, “Our goal was to explore the family’s response with regard to a child’s first seizure. We feel that by devising a myth verses fact sheet and then talking with the family three months after the initial event, we will be able to better assess the family dynamic.”

Edited: 01/30/07

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The study, Parents Response to Their Child's First Seizure: How Can We Help? was conducted by Tammy L. Still, Jodie R. Niosi, Neetu K. Singh, Nancy Thornton, Elaine C. Wirrell, and Lorie D. Hamiwka, all at Alberta Children’s Hospital, Calgary, AB, Canada.

Reviewed and revised January 2007 by Steven C. Schachter, MD, epilepsy.com Editorial Board.