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An insight into children's and adolescents' experience of seizures and epilepsy
F Galletti1, A Rinna, C Acquafondata
1Dipartimento di Scienze Neurologiche e Psichiatriche dell'Età Evolutiva, University of Rome La Sapienza, Roma, Italy.
Insights
Children with epilepsy often experience significant psychic involvement during seizures, even if parents don't recognize it. Their descriptions of seizures can be challenging, with discomfort not always correlating to seizure severity.
Area of Science:
- Pediatric Neurology
- Child Psychology
- Qualitative Research
Background:
- Epilepsy significantly impacts children and adolescents.
- Understanding the subjective experience of seizures is crucial for comprehensive care.
Purpose of the Study:
- To qualitatively explore the individual experiences of seizures and epilepsy in children and adolescents.
- To investigate how young patients perceive and describe their seizures and the condition of epilepsy.
Main Methods:
- A qualitative study involving 41 children and adolescents (aged 6-18) with idiopathic epilepsy.
- Semi-structured interviews were conducted in a hospital day unit.
- Participants aged 7+ described their seizure experiences.
Main Results:
- Children aged 7+ could describe partial seizures; recent seizures (6-12 months prior) were often forgotten.
- Psychic involvement was reported in 90.3% of cases, regardless of parental seizure classification.
- Difficulty articulating seizure experiences was common; discomfort did not consistently correlate with seizure severity.
- Patients expressed generic concerns about epilepsy, with adolescents sometimes linking it to existential concerns.
Conclusions:
- The subjective experience of seizures in children and adolescents is complex, often involving significant psychic components.
- Communication challenges in describing seizures highlight the need for tailored approaches in pediatric epilepsy care.
- The perceived impact of epilepsy may be more generalized than specific seizure events, particularly in adolescents.
Abstract:
A qualitative study was performed to investigate the individual experience of seizures and epilepsy in children and adolescents. Forty-one patients aged between 6 and 18 years old and affected with idiopathic epilepsy underwent one or more semi-structured interviews in a hospital day unit. Children aged 7 years or older could describe the experience of partial fits (in one case also of a presumably generalized fit). Seizures which occurred 6-12 months before had often been forgotten. Psychic involvement was reported in 90.3% cases, even when seizures had been classified as partial motor according to the parents' description. Social status and school achievement had no significant influence on the patient's ability to express his or her feelings, but some children had serious difficulty finding appropriate words to describe unfamiliar experiences; other patients used a simile, uncommon expressions or odd names to describe the fit. A poor relationship was found between seizure severity and patient's discomfort, and the image of the disease appeared independent of the experience of the seizures. As regards the epilepsy itself, patients seemed to suffer from generic problems rather than from specific concern about it, but some adolescents inserted their thoughts about the disease into reflections on their existential condition.