Disruptions in Social Functioning and Services Facilitating Adjustment for the Child and the Adult

Joan K. Austin

Hanneke M. de Boer

Patricia O. Shafer

Introduction

The impact of epilepsy on social functioning, or the ability to participate in a broad range of social activities and interpersonal relationships, can be quite varied. Although many people with epilepsy have few, if any, disruptions in social functioning, others have severe problems that prevent them from engaging in fully productive lives. The exact prevalence of social problems is difficult to establish because most studies have been carried out on clinic samples in which persons with more difficult-to-control epilepsy are served. Studies show that rates of social dysfunction are substantially higher in samples from clinics than in community samples.¹⁰⁴ Nevertheless, social problems are common in persons with epilepsy, and these problems need to be addressed by health care professionals.

In this chapter, we present an overview of the disruptions in social functioning that can be experienced by children and adults with epilepsy. We also describe factors associated with social problems and consider them within the context of tasks of normal psychosocial development. We conclude with guidelines for daily living, an overview of areas that need to be addressed in a comprehensive assessment, and the types of services that can facilitate social functioning in persons with epilepsy.

Disruptions in Social Functioning

Social Problems

Persons with epilepsy have a higher prevalence of social problems than those from the general population. A longitudinal study of adults with childhood epilepsy indicated that epilepsy had a negative impact on social functioning.⁹⁷ Problems most commonly reported in persons with epilepsy include anxiety, poor self-esteem, social isolation, and symptoms of depression.⁷^,¹⁹^,⁶⁰^,⁷⁴^,⁷⁹^,⁹⁰^,⁹²^,⁹³

Comparison studies show that children with epilepsy have poorer social functioning than children with other chronic physical conditions⁸⁹ such as asthma,⁷^,¹⁹ diabetes,⁷⁵ or learning disabilities.⁷⁴ In a recent study, adolescents with epilepsy showed greater social anxiety and interpersonal problems than adolescents without epilepsy.²⁰ Adults with epilepsy have also been found to have higher rates of social problems than the general population. Social problems include social isolation and problems with adaptation.²⁸^,³⁰^,⁴⁴^,⁵⁸ Problems in living with epilepsy related to social adjustment (e.g., driving and lack of employment opportunities) are also frequently reported in adults with epilepsy.⁵³^,⁶⁴ Long-distance travel can also be difficult for adults with epilepsy, especially for those with severe or frequent seizures. Social problems are important because they reduce quality of life and contribute to mental health problems such as depression, anxiety, and psychopathology in persons with epilepsy.⁵^,⁵⁷

Factors Associated With Social Problems

Empirical research carried out to identify factors associated with social dysfunction in persons with epilepsy identifies the following as risk factors:

Severe and frequent seizures
Presence of other chronic conditions or deficits
Cognitive impairment and academic underachievement
Negative attitudes toward epilepsy
Inadequate knowledge about epilepsy
Lack of a supportive family environment

Although social problems are more common in persons who have a chronic physical condition, youth with epilepsy have been found to have a poorer social functioning than youth with other chronic physical conditions.⁴^,¹⁹^,⁸⁸ Studies indicate that disruption in social functioning is greater for persons with severe epilepsy and other neurologic deficits or disabilities²⁹^,⁵⁶^,¹⁰⁰ than for those with epilepsy alone. Moreover, higher seizure frequency is generally found to be related to poorer social functioning.⁶^,¹⁷^,²⁰^,⁵⁹^,⁶⁰ Other seizure variables have not been found to be consistently associated with poorer social functioning. For example, Camfield et al.²⁵ did not find epilepsy-related variables (e.g., age at onset, seizure type, cause of seizures), neurologic deficits, and encephalographic data (e.g., focal slowing) to be strong predictors of social dysfunction in a sample of children and young adults with normal intelligence. Furthermore, even remission of epilepsy did not significantly predict social dysfunction. Only a learning disorder and >21 seizures before initiation of treatment were associated with at least one unfavorable social outcome in this population-based study.²⁵ In addition, poor cognitive functioning²⁶ and poor academic achievement¹⁰¹ have also been found to be positively related to social problems in children with epilepsy.

Although most research identifying high rates of social problems are carried out on samples of persons with chronic epilepsy, studies of persons with new-onset epilepsy also indicate that social difficulties occur very early with the disorder. For example, Chaplin et al.²⁹ found that >10% of adults with recently diagnosed epilepsy rated four problems related
to social functioning (fear of seizures, employment concerns, concerns about leisure, and decreased energy) as severe.

Negative attitudes toward having epilepsy have been found to be related to psychosocial problems in children with epilepsy.¹³ Sometimes, negative perceptions about epilepsy are caused by excessive fears about seizures.⁸⁰ Austin and colleagues⁸^,¹⁶ found that children with new-onset epilepsy and their parents had many unfounded fears about seizures and their treatment, and greater concerns and fears have been associated with more-negative attitudes about having seizures.¹¹ Lack of accurate knowledge about epilepsy has been found to be associated with greater social anxiety and lower self-esteem in adolescents.²⁰

The whole family is confronted with coping with the epilepsy. Studies exploring relationships between the family environment and social functioning in children indicate that family factors are related to social functioning in the child.⁸⁸ Austin et al.¹⁷ found family stress, extended family social support, and family mastery and control to be related to psychosocial functioning. Lothman et al.⁷² found praise in mother–child interactions to be related to child competence. What is not as well delineated is the nature of the relationship between the family environment and social functioning because most of the research is cross sectional. It is not known whether both the family and the child are reacting to the epilepsy, whether environment leads to social problems for the person with epilepsy, or whether the family is responding to the child’s problems.

Few studies have been conducted on family environments of adults with epilepsy to identify whether there are factors that are associated with social problems. Thompson and Upton¹⁰³ found that caring for an adult with intractable epilepsy is quite stressful for the family. Approximately two thirds of the primary caregivers were dissatisfied with limitations on their social activities and intimate relationships. Caregivers identified the need for respite and increased social support.

In summary, although more research is needed to identify all the factors that lead to problems with social dysfunction, research has identified broad categories of variables that place persons at risk for social problems. It appears that a chronic, difficult-to-control condition and the presence of other deficits or disabilities are risk factors for social problems. Moreover, knowledge about epilepsy, how persons feel about having seizures, and characteristics of the family environment are related to social functioning in persons with epilepsy.

Developmental Tasks and Social Problems

Disruptions in social functioning in children need to be considered within the context of normal psychosocial development because epilepsy can interfere with the accomplishments of age-appropriate tasks. Furthermore, because epilepsy affects the whole family, it is important to consider how family factors influence the psychosocial adjustment to epilepsy.

Early and Middle Childhood

In early childhood, children need an environment in which they are able to become increasingly independent. They have daily routines and learn to master toilet training and other self-care activities, communicate with others, and become socialized.²² For optimal psychosocial development, these children need an environment in which they can develop autonomy and initiative.⁵¹ If parents are overly protective and concerned about the possibility of a seizure, they may overrestrict the child’s activities and hinder the development of life skills. A recent study found increased levels of parental anxiety about their child’s epilepsy was associated with poorer socialization in the child.²⁷ In middle childhood, children become more independent of parents. There is empirical evidence that children with epilepsy can have problems with completion of some of these developmental steps. For example, children with epilepsy have been found to be more dependent than children with tonsillectomies.⁵²

Child social development has been found to be associated with parenting behaviors. Social maturity and social skills in children with epilepsy were found to be positively related to parental strictness. Lothman et al.⁷² studied parenting behaviors in mother–child interactions and found praise to be related to child competence and child positive affect. Conversely, intrusive and overcontrolling parenting behaviors were related to decreased child autonomy and child confidence. In a recent longitudinal study, parent support of the child’s autonomy predicted a better psychosocial adjustment.¹⁰

Adolescence

The primary developmental challenge of adolescence is identity formation.²² Ideally, adolescents should begin adulthood with a strong sense of self and physical competence. Failure to develop a strong sense of self as competent can lead to problems with poor self-esteem and feelings of being different from others. Another important developmental task for adolescents is becoming independent and separating from the family of origin. Peer-group membership plays an important role in the social development of adolescents and in their becoming independent of their family. A recent study,¹⁸ however, suggested that the social environment might not be supportive of the social development for the adolescent with epilepsy. In that study, adolescents in the general population were found to have a poor understanding of epilepsy. Almost three fourths believed that adolescents with epilepsy would be more likely to be bullied or “picked on” by others than other adolescents, and less than one third indicated that they would date an adolescent who had epilepsy.¹⁸

Young people with epilepsy can have problems meeting the developmental accomplishments of adolescence. The presence of a chronic condition such as epilepsy can interfere with the development of a strong sense of physical competence. Parental overprotection can deprive the child of experiencing the feelings of competence and, subsequently, affect later self-esteem.⁷⁶ The occurrence of seizures and the need to take medication can lead to a reduced sense of physical competence. The stigma associated with epilepsy can negatively impact how adolescents perceive themselves, socially and physically. A recent study indicated that adolescents with intractable epilepsy perceived that their having epilepsy set them apart from their peers.⁴⁷ Even adolescents with newly diagnosed epilepsy have been found to feel different from their peers and worry about being teased by them.⁸ The episodic loss of control caused by seizures also can make it more difficult to become independent and separate from families. The inability to drive a car at an age-appropriate time can be a major problem for adolescents with epilepsy because it limits opportunities for developing independence and participation in social activities.³³

A final way the presence of epilepsy might affect social functioning is poor academic performance. Success in school facilitates the development of initiative. School achievement also provides an opportunity for young people to receive recognition from others and to derive a sense of accomplishment. The school problems found in adolescents with epilepsy¹⁹^,⁷⁹ reduce opportunities for the development of a sense of pride and accomplishment at school and also place these children at risk for later vocational problems.

Adulthood

Studies of psychosocial function of adults with epilepsy have many methodologic problems. Studies regarding these issues
have mostly been clinic based, thus limiting generalization to the whole population of people with epilepsy. Recent research¹⁰² was carried out in the north of the Netherlands concerning the quality of life reported by 210 adults with epilepsy and an average IQ of 101; 75% had a high school education or more. Of this group, 69.5% reported no social problems, 25.1% mentioned problems with adaptation, 5.5% reported feeling isolated or suffering from other problems in this area, and 89.7% mentioned no financial problems. Various subscales on health, self-confidence, coping, loneliness, stigma, life fulfillment, and psychological problems did not show many problems. It appeared as if early-onset epilepsy leads to adaptation and does not much influence the quality of life. The outcome of this study differed from those of many others probably because this was performed among a group of people with epilepsy living in the community rather than a clinic-based sample.

Being employed is an important predictor of quality of life of people with epilepsy. The World Health Organization also mentions the importance of employment for social health and, therefore, improved quality of life. It is widely recognized that a large number of people with epilepsy experience particular difficulties in gaining access to employment and vocational training on equal terms with other sections of the population, and it is also acknowledged that this situation is likely to get relatively worse, not better. Most figures concerning employment rates of people with epilepsy indicate that they do not perform as well on the labor market as others do. Although both research figures and research groups vary, unemployment rates generally are higher for people with epilepsy than for the general population.

Early employment studies showed that the situation for people with epilepsy was discouraging. Jacoby⁶⁴ found that 50% of people with epilepsy were unemployed, and Scambler and Hopkins⁹¹ reported that 42% were unemployed. A research project set up among people with epilepsy in The Netherlands who were being treated at 10 special outpatient epilepsy clinics showed that compared to the general population, the study group tended to have a lower educational and a lower vocational level than the general Dutch population.¹⁰² Of the study group, 44% were employed and 49% were unemployed (7% were in school).³⁴^,⁸⁶ A more recent study by Jacoby showed that when seizures are well controlled and there are no other handicaps, people with epilepsy do not experience employment problems.⁶⁵

Young people with epilepsy especially are at a disadvantage when it comes to obtaining and retaining employment and may need special assistance and training to enable them to deal with difficulties they are likely to encounter. Even when the epilepsy is controlled, many find that their epilepsy is a barrier to employment.

Concerning marriage, Dutch research showed that 66.2% of patients were married and 14.8% were still living with parents.¹⁰² This figure may be influenced by age, or there may be a regional (cultural) effect. Data from Montreal³² showed that among study participants who developed seizures after the age of 20 years, 91.7% of women and 76.2% of men were married before the onset of seizures. These proportions were similar to those for the general population. However, if seizures occurred in the first decade, marriage were lower than expected for the general population. The rates were 32% for men and 58% for women. Ounsted and Lindsay⁸² found that among their sample of 100 young people diagnosed as having temporal lobe epilepsy, the prognosis for marriage was good for girls (92% of them married), whereas only 41% of the boys married, even though they were not heavily handicapped. Pierzchala and Grudzinska⁸³ reported that of a group of 243 patients with epilepsy, 50.6% of men were married, which is a lower rate than both women with epilepsy and the general population. Follow-up studies on people with epilepsy in the 1946 British birth cohort show very little difference concerning marriage between both uncomplicated and complicated cases and their controls at the age of 26 years.²³

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