Seizure 1992;

1: 173-

176

University aspects*

students

LISA ANDERMANN

& FREDERICK

Department Neurological

with epilepsy:

a study of social

ANDERMANNt

of Neurology and Neurosurgery, institute and Hospital

Faculty of Medicine,

Correspondence to Lisa Andermann, Epilepsy Clinic, Montreal Montreal, Quebec, Canada H3A 284. Tel: (514) 398-l 976.

Neurological

McGill University

Institute

and the tMontreal

and Hospital,

3801

University

Street,

Improved control of epilepsy has permitted an increasing number of young persons with epilepsy to attend university. This study was designed to assess the impact of epilepsy on their education, employment, family and social life. We studied fifteen randomly selected full time university students, aged 20-28 years, who had a well documented history of partial or generalized epilepsy. One third still had seizures, over 90% were taking antiepileptic medication and all were followed by a neurologist. Interviews were conducted according to a standard open-ended questionnaire lasting 1.5 hours. After an initial adjustment period, most did not feel that epilepsy constituted a handicap to their education. They learned about epilepsy, did independent research and one quarter chose careers in the health sciences. Most reported occasional negative experiences, but were reluctant to interpret this as evidence of discrimination. All felt that they had had equal opportunities at school and at work. They were selective about imparting knowledge about their seizures to students, staff and employers, but did not hide their epilepsy. Subjects had high vocational aspirations and academic motivation reflecting good intelligence and previous educational achievements. Their positive attitude, enthusiasm and denial of difficulties were striking. This reflects improved seizure control as well as family and social support in this group of young people. Key words:

epilepsy; university students; social aspects.

INTRODUCTION

Many studies dealing with the problems encountered by schoolchildren with epilepsy and their families have been reported. These include the choice of special education versus the normal school system1-3 and cognitive function, intellectual ability and behaviour in epileptic children@. The influence of the family is described as being an important factor in the psychosocial adjustment of the young person with epilepsy7y8. In adults, a recent study examined psychological wellbeing and epilepsy9 and concluded that people’s perceptions of themselves and of their epilepsy were strongly related to their overall well-being. Attitudes in the workplace and the * Presented at the Annual Society, Boston, December 1059-l

31 l/92/0301

73+04

Meeting 1989.

of the American

$08.00/O

Epilepsy

employability of people with epilepsy have also been extensively studied”* ll. While these subjects have all been well documented, little information is available about the acceptance and adjustment of young people with epilepsy who decide to continue their studies at the university level. This study was designed to assess the impact of epilepsy on the education, employment, family and social life of university students.

PATIENTS AND METHODS

We studied 15 students attending university full time in Montreal, Quebec. They were aged 20-28 years and were randomly selected from the practice of a neurologist specializing in epilepsy (Table 1). All had a well documented history of partial or generalized epilepsy. 0

1992

Bailli&e

Tindall

Lisa Andermann

174 Table A.

1: Fifteen

university

Characteristics

students

of the patient

Sex: male 7 female 8 Age: mean 22.6 years range 20-28 years Age at onset of seizures:

mean range Age at onset of treatment: mean range Age at seizure control: mean range

B.

Types

of epilepsy

and

seizure

with epilepsy group

10 years l-20 years 10 years 5-20 years 17.8 years 9-22 years patterns

Primary generalized epilepsy Myoclonus Absence Absence status Generalized tonic-clonic Partial epilepsy, temporal Partial simple Partial complex Secondarily generalized Partial epilepsy, extra-temporal Partial simple Secondarily generalized Focal myoclonus C. Current

status

of the epilepsy

6 5 3 1 6 6 2 4 4 3 1 3 2 and

medication

Occasional or recurrent seizures Seizures controlled Seizures remitted, no medication Monotherapy Carbamazepine Valproic acid Polytherapy Valproic acid and clonazepam Valproic acid and clobazam Phenytoin, carbamazepine, lorazepam, clonazepam

5 9 1 8 3 1 1 1

Six patients had primary generalized epilepsy and, as can be expected in this age group, had both major and minor attacks. Myoclonus was common, reflecting the patients with Janz syndrome or myoclonic epilepsy of adolescence. Six patients had partial epilepsy originating in the temporal lobe and three had non-temporal partial seizures. The age at onset of seizures ranged from l20 years (mean of 10 years). Treatment for epilepsy began between 5 and 20 years of age. Seizures were controlled from between 9 and 22 years of age, with a mean of 17.8 years. Seizures were fully controlled in nine patients, occurred occasionally in five, and all but one were still taking antiepileptic medication. Medication consisted mainly of monotherapy with carbamazepine in patients with partial epilepsy, or with valproic acid in those with primary generalized epilepsy. Benzodiazepines were at times used as adjuvants. Personality disorders were not striking in

8 Frederick Andermann

these young people. Only one of the patients with generalized epilepsy had an obvious personality disorder. The patients were all of normal intelligence. Interviews were conducted according to an open ended questionnaire and lasted 1.5 hours. In addition, a shorter version of the questionnaire was given where subjects could answer some of the same questions on a scale of l-10. The interviews focused on four main areas of investigation: (i) the impact of epilepsy, including the reaction of the subjects and their families to diagnosis and their acceptance and adjustment over time; (ii) the subjects’ satisfaction with medical care and knowledge of epilepsy, including whether the neurologist’s explanations were considered adequate, whether any independent research was carried out by the subjects and their degree of understanding; (iii) the social aspects of epilepsy were discussed, i.e., whether epilepsy was thought to interfere with education, employment, family life and social relationships; (iv) the subjects’ awareness of prejudices in society, whether they had experienced discrimination at school, work, or in everyday life, and whether this has led any of them to hide their epilepsy.

RESULTS The impact of the diagnosis of epilepsy on the parents was, according to the subjects’ point of view, quite similar and consisted mainly of initial overprotection followed by acceptance and support. In one case, a mother was said to feel guilty because she herself had epilepsy, making acceptance more difficult. The only exceptions were found in some southern European and Asian families, where culturally determined secretive behaviour made life after diagnosis much harder for parents. They worried that news of their child’s condition would spread through the ethnic community and possibly interfere with their child’s chances for a good marriage. Siblings were said to respond with much less emotion than parents. The reactions of the patients to the diagnosis of epilepsy were similar, consisting of a period of initial anger, depression and fear which was then replaced by acceptance achieved through an improved understanding of their condition and better medical control. Most said that epilepsy was now just a fact of life and they seemed to be coping well overall.

University

students and epilepsy

There were mixed responses concerning the question of satisfaction with medical interpretation (Table 21. Most of the patients felt they had received a full or adequate explanation (13115, 87%), but over half felt that the interpretations given were not sufficiently extensive (8/15, 53%). This was complemented by independent research and study by the majority (10/15, 67%), who read books and journals, wrote term papers about epilepsy, took college courses in biochemistry and neuroanatomy and, in one case, made plans to pursue a career in neurology. The patients’ understanding of epilepsy varied, but seizures were most commonly described using the terms ‘loss of consciousness’ or ‘electrical storm in the brain’. Half the subjects felt that the discovery of their epilepsy had not interfered with their education in any way (8/15, 53%). If the diagnosis occurred in elementary school or early in high school, the teachers were usually made aware of the condition and were said to be understanding. However, elementary and high school classmates were not always as understanding and this caused problems for several of the subjects. By the time they were attending college, most of these conflicts had been resolved and the subjects had developed a close circle of friends who knew about their epilepsy. For nine of the subjects (60%), epilepsy did not constitute a problem with regard to either summer employment or career plans. However, several negative incidents were reported where epilepsy was thought to be the reason for their being refused a position. Disruption of family life was usually not a problem, except in the ethnic communities mentioned previously (4/15, 21%). Interference with social life was greatest in elementary and high school (6/15, 40%), but generally improved with the level of education and maturity of peers. Later problems concerned dating, the decision to reveal one’s epilepsy to a boyfriend/girlfriend and acceptance by the boyfriends/girlfriend’s families. Epilepsy, or the antiepileptic medication, imposed limitations on going out or studying late and on drinking at parties. Driving was also an important concern. Subjects were divided regarding openness about epilepsy, but most preferred not to volunteer information except to a close circle of friends.

175 Table 2: Fiieen university students with epilepsy A. Satisfaction with medical care and knowledge of epilepsy (n = 15) Medical interpretation was considered Complete Incomplete Unsatisfactory Independent research and study (reading, courses, research) B. Social aspects of epilepsy (n = 15) Interference with education Yes No Unsure Interference with summer employment Yes No Unsure Interference with career plans Yes No Unsure Disruption of family life Yes No’ Unsure Interference with social life Yes No Unsure C. Perceptions of epilepsy fn = 15) Awareness of prejudices in society Discrimination at school not perceived as a problem Discrimination at work not perceived as a problem Discrimination in everyday life not perceived as a problem

7 6 2 10

5 8 2 5 9 1 4 9 2 4 11 0 6 9 0 15 12 11 10

CONCLUSIONS The characteristics of the study group included good motivation, academic success, high vocational aspirations, a positive and optimistic attitude, enthusiasm and denial of difficulties. Based on the above, we recommend that the explanation of epilepsy by the neurologist should be an ongoing concern, updated according to age and maturity and should be complemented by students’ personal research. All the subjects were aware of prejudices in society about epilepsy and believed that further education of the public was needed to improve the situation. While the students did not feel that discrimination at school, work or in everyday life imposed limitations on their activities, some of their comments seemed to indicate otherwise. Whether this is simply a denial of difficulties or a reflection of true experience remains unknown. The consensus among the students was that unless they would be in a potentially danger-

Lisa Andermann

176

ous position, such as a lab, a kitchen or a camp waterfront, it sometimes may be best not to admit to having epilepsy. This is especially true if seizures are a rare occurrence and unlikely to happen in such a situation. Intelligence and seizure pattern permitting, people with epilepsy can function well at university. Prejudice in this environment is usually not a problem. Young people with epilepsy are less well accepted by employers and co-workers in menial jobs, as shown by their experience with summer employment. Thus, the need for higher education is greater for people with epilepsy compared with their non-epileptic siblings and peers. Higher education increases self-esteem, improves chances of success in the working environment and should be encouraged whenever possible. REFERENCES 1. Polnay, L. Selection of school for children with epilepsy. In: Paediatric Perspectives on Epilepsy (Eds R. Ross and E. Reynolds). Chichester, John Wiley and Sons, 1985: pp. 91-95. 2. Ross, E.M. and Tookey, P. Educational needs and epilepsy in childhood. In: Epilepsy, Behaviour and Cognitive Function (Eds M.R. Trimble and E.H. Reynolds). Chichester, John Wiley and Sons, 1988: pp. 8’7-96. 3. Rogan, P.J. Education and epilepsy. In: Epilepsy in Young People (Eds E. Ross, D. Chadwick and R. Craw-

4.

5.

6.

10.

& Frederick Andermann

ford). Chichester, John Wiley and Sons, 1987: pp. 2330. Trimble, M.R. and Thompson, P.J. Anticonvulsant drugs, cognitive function and behaviour. In: Paediatric Perspectives on Epilepsy (Eds E. Ross and E. Reynolds). Chichester, John Wiley and Sons, 1985: pp. 141-148. Verity, C.M. and Ross, E.M. Longitudinal studies of children’s epilepsy. In: Paediatric Perspectives on Epilepsy (Eds E. Ross and E. Reynolds). Chichester, John Wiley and Sons, 1985: pp. 133-140. Cull. C.A. Cognitive function and behaviour in children. In: Epilepsy, Behaviour and Cognitive Function (Eds M.R. Trimble and E.H. Reynolds). Chichester, John Wiley and Sons, 1988: pp. 97-111. Goldin, G.J. and Margolin, R.J. The psychosocial aspects of epilepsy. In: Epilepsy Rehabilitation (Ed. G.N. Wright). Boston, Little Brown and Company, 1975: pp. 66-80. Thornton, L. Personal relationships. In: Epilepsy in Young People (Eds E. Ross, D. Chadwick and R. Crawford). Chichester, John Wiley and Sons, 1987: pp. 3949. Collings, J.A. Psychological well-being and epilepsy: an empirical study. Epilepsia 1990; 31(4): 418-426. Clemmons, D.C. and Dodrill, C.B. Vocational outcomes of high school students with epilepsy and neuropsychological correlates with later vocational success. In: Advances Symposium

in Epileptology:

XVth

Epilepsy

International

(Eds R.J. Porter, R.H. Mattson, A.A. Ward and M. Dam). New York, Raven Press, 1984: pp. 611614. 11. Thorbecke, R. and Janz, D. Guidelines for assessing the occupational possibilities of persons with epilepsy. In: Advances in Epileptology: XVth Epilepsy Znternational Symposium (Eds R.J. Porter, R.H. Mattson, A.A. Ward and M. Dam). New York, Raven Press, 1984: pp. 571-575.