It can be safely assumed that parents desire children who are healthy and otherwise conform to societal ideals. Consequently, when parents are confronted with having a child with any potentially chronic physical condition, they often have a strong negative response. Seeing their child have a seizure has been reported by parents to be a most frightening and confusing experience. Parents often react to a first seizure with a range of strong emotions including shock, fear, sadness, anger, and guilt. It is not unusual for parents to fear that their child is dying during a seizure (15).

Interviews with parents of children with newly diagnosed epilepsy, by Ward and Bower (16), revealed that parents had fear related to the characteristics of the seizures, including noise, interruptions in breathing, loss of consciousness, twisting and jerking, and eye movements such as staring. In a study with a similar sample, Austin et al. (17) found the concerns and fears of parents whose children recently had a first seizure to be focused in two areas: (i) the effect of seizures and their treatment and (ii) managing their child’s epilepsy (17). Parents were highly concerned about the cause of
the seizure and the future course of the condition. Early concerns focused on the effects of the seizure on their child’s brain, mental health, activities, and future vocation. Parents’ management concerns fell into four areas: (i) seizures, (ii) responses of others, (iii) lifestyle, and (iv) mental health (17). In the area of seizures, they were unsure how to handle their child’s future seizures, including when to take the child to the hospital and when to call the physician. They were also worried about the potential negative side effects of the antiepilepsy medication on their child. They did not know which of the side effects to report to the physician. Interestingly, although these children had just had their first seizure, their parents were already concerned about the stigma associated with epilepsy, including how to handle the potential negative responses to their child by others. Parents were also worried about how to disclose their child’s epilepsy in such a way that others would not treat their child differently. If the children were school-aged, their parents were especially concerned about their peers teasing them because of the seizures. In the area of lifestyle changes, parents were concerned about keeping their children safe without overprotecting them or interfering with their normal development. Finally, some parents were aware of the association between epilepsy and mental illness and were worried about how to prevent their child from developing problems.

When children are old enough to understand what is happening, they also find the onset of seizures to be frightening. School-aged children had many concerns about seizures, antiepilepsy medication, and responses of others (18). Children were worried about the cause of their seizure, and some attempted to identify possible causes. Many questions focused on the nature of seizures, including what causes the jerking and shaking during a seizure. Other children were concerned about their prognosis and whether their condition would get worse. Some children experienced anxiety associated with the context of the first seizure. For example, children who had their first seizure in bed often were afraid to be alone in bed; likewise, those who had their first seizure at school were fearful of returning to school. Finally, some children were concerned that seizures might hurt them. For example, a number of children were concerned about dying, and a few were concerned about becoming mentally ill or not being able to develop normally. Treatment-related concerns of children, which focused on the tests (electroencephalogram, blood tests, and imaging), included worry about what the tests were for and what the results would be. Children were worried when they saw severely disabled children in physicians’ waiting rooms; children with epilepsy thought that they might become like them because they were seeing the same doctor (18). Children were also concerned about the possibility that their peers would make fun of them or tease them about having seizures.

As time passes and families realize that their child has a chronic seizure condition, they realize they must deal with the ramifications of living with this condition, especially with the fact that it is strongly associated with mental health and academic achievement problems. There can be an uneasiness related to having a child with a chronic condition such as epilepsy because it is always there at some level. Even in periods of good seizure control, the possibility of a period of seizure hangs over the family’s head. The uncertainty about when the next seizure will occur is a major psychosocial stressor for these children and their families. Although, over time, parents and children gain experience in dealing with seizures, they are confronted with new and continuing issues related to epilepsy. As the children grow up, they are able to comprehend more about the ramifications of living with seizures and become aware of age-related difficulties in living with epilepsy, such as driving restrictions. Although epilepsy is not generally thought of as having physical effects beyond the seizures, in a study of children and adolescents with intractable epilepsy (19), children
reported experiencing excessive fatigue, emotional distress, and social isolation.

Families of these children are confronted with incorporating the epilepsy into their daily lives and helping the child make a satisfactory adjustment. Knafl (20) points out that families of children with chronic conditions have many tasks, including making sense of the condition, mastering treatments, creating a normal life for the child, adapting the family’s routine to the condition, and negotiating with school and health care professionals. Families of children with epilepsy need to become competent in managing their children’s seizure condition and in teaching them to take over responsibility for their own treatment when they are old enough. Over time, the family is confronted with continuing inconveniences, including regular trips to the doctor and pharmacy, and their associated costs.

In addition, epilepsy presents unique challenges for the child and family related to stigma (21,22). Parents and children have concerns about disclosure of the epilepsy, including who, when, and what to tell persons about the epilepsy so that negative effects can be minimized. Perceptions of stigma being related to epilepsy have been associated with more mental health problems, especially low self-esteem (23). The high rates of mental health problems in children with epilepsy increase the likelihood that families will be confronted with some mental health-related problems over the course of chronic epilepsy. The most common problems identified in a recent review of the literature were attention problems, somatic complaints, social problems, thought problems, anxiety/depression, and withdrawal problems (24).

The need to address mental health problems also increases stress for the whole family. The high rates of academic achievement problems mean that many children with epilepsy will experience these problems. Families have found dealing with the school system to be problematic, especially when their children have serious learning problems (25). The more frequent the seizures and the more severe the achievement problems, the more urgent the need to have a plan for dealing with seizures and learning problems at school. Each year, parents are faced with the problem of informing the child’s teacher about their child’s seizures and developing a strategy with the teacher for handling seizures at school. In addition to dealing with the school system about their child’s learning problems and helping the child with homework issues, parents also worry about the long-term effect of their child’s poor school performance. Will the child be able to handle college work or vocational training? Finally, youth with epilepsy who also have problems with school achievement are even more at risk of mental health problems (26).

Infants need a safe and nurturing environment, and attachment to a stable adult to learn trust (27), which is the major developmental task of infancy. The onset of seizures in infancy can be especially stressful and parents often feel inadequate because of the additional demands on them, such as medical appointments, change in daily routines, administering medications, and worrying about side effects in such a young child (15). If parents are so burdened by their own inability to cope with the epilepsy that they are unable to respond adequately to the infant’s needs, the infant might not learn to trust. In early childhood, children need a family environment where they are able to become increasingly independent. They have daily routines, become socialized, master toilet training and other self-care activities, and learn to communicate with others (28). For optimal psychosocial development, these children need an environment where they can develop autonomy and initiative (29).

In middle childhood, the developmental tasks include becoming more independent
from parents and more attached to peers. Active involvement in a peer group is critically important to the psychosocial development of the child. It is also important for children in this developmental stage to experience success in school to facilitate the development of industry. Achievement in school can provide an opportunity for the child to receive recognition from others and to experience a sense of accomplishment. Parenting children with epilepsy in a manner that supports the accomplishment of these tasks can be challenging for the parents. Maternal anxiety has been found to be associated with poorer psychosocial adaptation in children (30).

Epilepsy can interfere with the accomplishment of these tasks. Children with epilepsy recognize that they have a condition most other children do not have, which can lead to feelings of being different (31). The social problems often found in children with epilepsy can reduce the opportunities for peer group activities. Poor performance at school not only can contribute to feelings of being different but also can lead to teasing by peers (31).