Pediatric Epilepsy and Parental Sleep Quality Academic Article uri icon

abstract

  • Epilepsy is one of the most common chronic clinical problems in the pediatric population, and appears in approximately 0.5% children. As in other chronic pediatric diseases, epilepsy has an appreciable negative impact on the quality of life in the family in general, and the parents in particular.1,2 Furthermore, epilepsy has unique characteristics that contribute to a prolonged adaptive difficulty of the parent. This includes unpredictable stressful events, social stigma of the child and family, extended treatment regimen subject to frequent changes, and cognitive disturbances accompanying the disease and treatment. Previous research has shown that even in comparison with other chronic pediatric diseases, parents of children with epilepsy suffer from higher rates of stress, anxiety, and depression, which manifest in significant impairment in social, familial, and personal parental functioning.3,4 BRIEF SUMMARY Current Knowledge/Study Rationale: Pediatric epilepsy leads to prolonged adaptive parental difficulties which in turn affect the quality of life in the child, eventually leading to a vicious cycle. Little data is available regarding the impact of pediatric epilepsy on parental sleep quality. Study Impact: The study provides new data on the nature of sleep disturbances in parents of epileptic children. There is a need to consider the involvement of a sleep specialist in order to address a suspected sleep disturbance. Despite the fact that there has been research investigating the effects on the lives of the parents in chronic pediatric disease in general and pediatric epilepsy in particular, there is insufficient data on the effects on the sleep quality of the parents, even though this impairment is liable to be accompanied by negative repercussions. Insomnia, which may be a symptom, a sign, or a primary disturbance, is currently defined only as a symptom, in the presence of ≥ 1 of 4 characteristics: difficulty in falling asleep, involuntary early awakening, difficulty in remaining continually asleep, and unrefreshing sleep. As a syndrome, sleep difficulties must occur in association with a complaint of impaired daytime functioning (e.g., diminished vocational functioning) and in the presence of adequate opportunity to sleep. For the purpose of this project we decided to use the ICSD-2 general criteria for insomnia that do not specify a frequency and duration for the insomnia symptoms.5 Studies of the pathophysiology of this disturbance have described physiological as well as psychological effects.6 Disturbances of sleep duration and associated daytime drowsiness have numerous clinical ramifications. Most commonly studied is the negative effect on essential cognitive functions, both lower and higher, such as attention, concentration, alertness, reaction time, risk taking, short-term memory, decision making, and judgment.7 The significance of these findings is in their impact on the quality of life of the individual, and in their heavy toll on society, expressed in economic standing from decreased productivity of those suffering from sleep disturbances, but mainly due to the increase in errors and accidents, including many fatal ones.8 In addition, sleep disturbances have direct strong negative effects on morbidity and mortality.9,10 Qualitative studies that show distinctive sleep patterns in families of pediatric epilepsy patients suggest increased occurrence of this impairment. These studies show that the appearance of a seizure, even febrile seizure, disrupts the family routine, expressing itself in the fact that in many families, parents begin to sleep in the child's room and/or check his/her condition numerous times during the night.11 Moreover, sleep of epileptic children is frequently disturbed, which may contribute to parental sleeping problems. Epileptic children often experience sleep fragmentation and excessive daytime sleepiness as a result of seizures, comorbid sleep disorders (sleep disordered breathing, obstructive sleep apnea, upper airway resistance syndrome, periodic leg movement of sleep), and antiepileptic drugs.12 As a result, the caregivers of these children are likely to experience concomitant sleep problems when trying to answer their children's needs during the night. Beyond the repercussions of sleep disturbances of the parents of pediatric epilepsy patients on the parent himself, one must account for the implications for the child. It has been shown that treatment of chronic pediatric disease that included dealing with its repercussions on the rest of the family is highly correlated with best treatment results.13 Familial factors have been found to play an important role in the development and severity of psychopathology of the pediatric epilepsy patient.14 Since normal sleep serves as a sort of buffer, neutralizing daily stresses, and as pediatric epilepsy is connected with high parental stress, sleep disturbances are liable to cause uncontrollable stress and lowered accommodation abilities, possibly leading to lowered adaptation abilities of the child and failed treatment of the disease. A previous uncontrolled study based on a group of 50 mothers of pediatric epilepsy patients without a comparison group, showed a negative effect on duration and continuity of sleep.15 The goal of our study was to test the effects of pediatric epilepsy on the quality of sleep of both mothers and fathers by controlling for potential confounders such as number of children and comparison to parents of nonepileptic children. Further goals of the study were to compare the effect of the exposure of the fathers with that of the mothers, and to identify which of the characteristics of sleep were most affected in order to achieve optimal coping methods.

publication date

  • January 1, 2011