British Jowmal of MedicaI Pychology (1992). 65, 279-287 Q 1992 The British Psychological Society
Printed in Great Britain
Group therapy in the management of epilepsy Carola B. B. Mathers* Senior Registrar in Pgchotherapy, St George’s Hospital, Blackshaw Road, London SW170QT, UK
A pilot project using group therapy with patients from an epilepsy clinic is described. Observations of the group show that members were able to discuss their feelings about having epilepsy, and the difficulties the disorder caused in all areas of their lives, and to tolerate and learn from seizures which took place during group meetings. The greatest benefit was meeting others with epilepsy and sharing experiences in an environment that was not overprotective or overanxious, in contrast to their usual surroundings. The author suggests that groups of a similar nature could be a useful addition to the management of people with epilepsy.
Epilepsy is a complex disorder, with emotional and social effects. In past centuries, it was heavily stigmatized and still is, due partly to public ignorance. Consequently, sufferers may be afraid to admit they have epilepsy for fear of rejection and social isolation. This can lead to overdependence on families and an inability to become emotionally and financially independent. A disorder which breaks consciousness and leaves the sufferer out of control can have profound effects: the assumption of a sick role in which the patient passively accepts treatment, and infantilization by parents and/or spouse, so the person is discouraged from leading a normal life and fails to gain adult maturity. It is known that psychological states can affect seizure frequency; in a recent survey quoted by Fenwick (1991), 65 per cent of patients had seizures when tense or depressed, and about 40 per cent when angry or excited. Conversely, patients with epilepsy have a high incidence of psychological difficulties : Pond & Bidwell’s (1960) general practice survey showed that 29 per cent of epileptic patients had psychological problems. Several authors (Bear & Fedio, 1977; Mungas, 1982; Waxman 8c Geschwind, 1975), suggest temporal lobe epilepsy (referred to below as complex partial seizures) is responsible for most psychological disturbance among such patients, mainly resulting from personality disorder associated with complex partial seizures. Group therapy has been used with patients suffering from chronic illnesses thought to have psychological components, including diabetes mellitus (Tattersal et al., 1985) and epilepsy, and individual therapy with chronic obstructive airways disease (Rosser e t al., 1983). Bernard & Klein (1977) note that homogeneous groups are better able than heterogeneous groups to build trust and empathy quickly, as they already have much in common at the start. Appolone & Gibson (1980) describe
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Carola B. B. Mathers
group therapy as a successful way of helping epileptic patients relinquish their sick role, experience how others relate to them and take more independent action. Their groups met weekly over 12 sessions and were structured, emphasizing setting goals and achieving them using group confrontation and peer pressure. Lessman & Molnick (1 978) describe similar short-term groups included in clinic programmes, with similar beneficial effects, again emphasizing goal-directed behavioural change, as well as interpersonal learning. Tan & Bruni (1986) compared cognitive/ behavioural therapy, counselling and waiting-list groups and found little difference between them. They concluded that eight group sessions may not have been enough. This paper describes experiences of eight out-patients in a short-term exploratory psychotherapy group. It was intended as a pilot project to ascertain whether patients from an epilepsy clinic could usefully meet to explore experiences and anxieties related to having epilepsy, and the effect a group would have o n their epilepsy.
Setting up the group Selection It was intended to select patients randomly from an epilepsy clinic for patients with poorly controlled seizures run by a senior registrar in neurology. In practice, the senior registrar tended to refer patients she believed would benefit or had difficulty managing, rather than selecting at random. Patients suffered at least one seizure per week. Medication was unchanged for the group’s duration. Patients under 21 or over 50 were excluded, as were patients with substance misuse, forensic histories or psychotic disorders. The senior registrar told patients in advance of referral that a group was being formed aimed at giving them a chance to talk together about their epilepsy. They then had an initial interview with the group therapist (CBBM), in which they were offered the opportunity to take part in a project involving meeting together as a group for 10 weeks, to talk about what it was like to have epilepsy and how it affected their lives. The therapist conveyed her interest in the interplay between seizures and emotional states. The group met weekly for 1.5 hours in the hospital where the senior registrar held her epilepsy clinic. There was a three-week break for the therapist’s annual leave between weeks 7 and 8; we recognized a break in a brief group was not ideal but seemed preferable to delaying the group’s start, especially as the therapist was pregnant. JH supervised the therapist.
Patient characteristics The patients were all female, as only one suitable male patient was seen during the selection period. Out of nine selected, one dropped out before the start; four were married, two with children, age range was 2 2 4 7 years. Three were employed in office work of varying seniority, one worked as a temporary secretary, one in a launderette, one as a houewife and two were unemployed. Six patients had complex partial seizures with secondary generalization ; the other two had complex partial seizures only. Duration of epilepsy varied from 18 months to 45 years, aetiology from unknown (four) to identified causes, namely encephalitis (two), infantile febrile
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convulsions (one) and (possibly) vaccination (one). Seizure frequency varied from one a week to 20 a day, the more frequent seizures usually being less severe, that is, momentary absences which were often unnoticed. Despite coming from materially comfortable working-class backgrounds, most had histories of emotional deprivation as children and subsequent difficulties separating from parents ; the single women all lived at home and at least one of the married women had transferred dependence on to her husband who attended the initial interview and spoke for her. All had difficult relationships with parents at the time of the group. Three had suffered early losses of father through divorce, two had lost fathers within the last five years through death. The four single women had had no satisfactory heterosexual relationships. Of the married women, one had had two miscarriages and no live children, one was infertile, and a third had suffered the death of her infant son seven years previously. Case vignettes Ann. A 24-year-old unemployed single woman with generalized and partial seizures for six years following encephalitis. Her voice had become a whisper nine months previously ; no physical cause was found. Parents were elderly. She had a twin sister of whom she was envious for the greater freedom allowed her, even before the onset of epilepsy. Father had blackouts since a work-related accident aged 18, her age when she developed epilepsy. He recently suffered a spinal injury requiring heavy nursing care which only Ann could give; this took much of her time. She felt put upon but unconsciously gratified by her special relationship with father. She had memory loss after the encephalitis and parents did not allow her to go out alone in case she got lost. She had no sexual relationships. Like her twin, she had a male friend nearly father’s age. She presented as younger than her age, yet curiously ‘middle-aged’, immature without the liveliness of youth. The voice loss was understood both as a conversion symptom related to unconscious sexual fantasies towards father and daily physical closeness to him, and as an unconscious way of making herself less enviable than her twin, who was less privileged than she in relation to father. Fran. A 42-year-old married woman working with computers. Partial seizures for 28 years possibly caused by vaccination in infancy. Father died five years previously. She misses him. Mother has senile dementia and she finds this stressful, though doesn’t admit it. She married at 21, husband left her after 13 years as she was infertile. She married her boss three years ago and has stepchildren. She presented as a cheerful suburban woman who took life in her stride and was not concerned about having epilepsy but, behind this facade, appeared a person vulnerable to stress, which could precipitate seizures, and deeply ashamed by the stigma of epilepsy. Group content
They were initially highly anxious and required therapist activity to help them speak. Important themes emerged in the first session : the onset of epilepsy leading to social isolation ; family discord and tension centering around the epilepsy, with parents 11
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tending to overprotectiveness ; work difficulties unless the diagnosis was kept secret ; the need for secrecy in a society which sees people with epilepsy as frightening and different-handicapped, stupid and prone to violence. Could a woman with epilepsy be a mother? Would a child be affected? They were dissatisfied with drug therapy and disinclined to take drugs for the rest of their lives. Ann spoke in a barely audible voice of friends deserting her as soon as she developed epilepsy, and of dismissal from the voluntary organization in which she had worked. She was angry with her parents’ overprotectiveness, especially as they allowed her twin much more freedom. She was unable to make herself heard at home and this seemed connected with her voice. All had had difficulty with employers, some omitting their diagnosis on application forms, others disclosing it and feeling this lost them the job. Betty had understanding employers but felt she could not move to a better job, as she expected less understanding elsewhere. At the end of the session, Ann lingered to check when we were meeting again, despite having received clear instructions beforehand. In the second and third sessions, the open involvement was not sustained, with silences experienced as persecutory, and covert anger with me for not providing an agenda. Before the third session began, those present decided to get tea and coffee, asking me whether it was all right to do so as I came in. They had not brought one for me. I felt excluded, indeed they ignored me at the start of the fourth session. The tea and coffee ritual continued for the life of the group. My efforts to draw attention to difficulty beginning again after each week’s gap were resisted. The fourth session saw them working on feelings of deep shame in having epilepsy. They agreed they were here to talk about ‘it’ and how difficult that was. Helen said she’d never spoken to anyone about her epilepsy ;even her children didn’t know. They spoke of people expecting them to look o r behave oddly and of epileptics having been considered witches in the past, and likened it to mental illness. Fran had applied for a job at a mental hospital but withdrew when she found out what kind of hospital it was. Ann had a seizure. At the end of the third and fourth sessions, I became aware of unexpressed feelings of dependence on the group. In the fifth session, I reminded them we were half-way through the group; this led to several members talking anxiously of fits getting worse, and questions about my holiday, as if to tell me I could not possibly leave them. Their talk of being out of control when they had a seizure felt like a communication about their anger that they couldn’t control my comings and goings, but they became silent when I attempted to address this. Talk of control over their bodies and wish for an agenda continued into the sixth session. Dot said : ‘ You’ll be on holiday ’ meaning, but not saying, ‘ We won’t be with you’. Later, she spoke of her mother being too small to prop her up. Ann spoke of being unable to send her boyfriend packing when she didn’t want him around, and of wanting to continue living with her parents, again a comment on her and the group’s difficulty in separation. The group joined Esther in a manic flight away from painful areas but, towards the end of the session, she spoke of her mother attempting a reconciliation and wanting and not wanting this. Dot told us with real sadness that she hadn’t had a birthday card from her father that year. Only three members attended the session following the three-week break,
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although the final two were well attended. Betty’s holiday had been rainy, Dot had had severe fits which had frightened her, and Ann had had a difficult time with relatives, though her voice was better. They were disappointed the others hadn’t come. I felt warmer towards Dot who had previously irritated me. She talked for the first time of feeling bitter towards her difficult mother and of finding herself crying recently. With surprise, she acknowledged feeling sad. They all spoke of leaving home. I reminded them there were only two more meetings: Betty thought there was only one. Dot said, ‘you were pleased to see us, weren’t you’, as if for reassurance that I hadn’t forgotten them and perhaps anticipating the end. They seemed subdued the following session. Esther and Dot had had severe fits; Celia spoke of witnessing a 2-year-old having a febrile convulsion. It had been horrible to see a little child shaking but she put her head against the child’s face and held her. She felt her experience of epilepsy helped her in handling the child confidently. Dot left the session in distress but returned later, and spoke to me after the end about the crying spells which were increasing. She disagreed with my view that talking about her difficult relationship with mother had released something in her. She was n o longer distressed during the last session. They returned to the shame of having epilepsy, as if a recapitulation was needed before the end and Esther again spoke of moving house. During the last session, the atmosphere was muted and there were difficult silences. Dot asked when my baby was due; Ann lingered after the end and gave me baby clothes she had knitted, thanking me for her therapy. They voiced n o resentment about the group ending. They were glad they had come and would not have wanted a longer duration. Berry was pleased she could talk more freely about her epilepsy and felt she had accepted it more.
Seizures during the group Three patients (Celia, Fran and Ann) had a complex partial seizure in the sessions, though Ann’s looked more like hyperventilation than a seizure. In the second group they had been talking about their families’ reactions to seizures when I asked Celia a question. She said she had gone blank then continued talking. The group did not react and later I asked Celia if she had just had a seizure. She admitted she had and again the group ignored her. In the third group they were talking about what brought o n seizures when Fran turned to me and said she was having one of her ‘turns ’. After a few minutes, during which all were silent, she said it was over and apologized. They talked about their curiosity and embarrassment at witnessing the seizure, identifying with Fran’s discomfiture. They agreed it was better to be ignored than fussed over while having a seizure. They continued talking about what precipitated seizures. Ann started hyperventilating while Helen was talking about working in mental hospitals ; Helen carried on. After some time, I pointed out that we’d been ignoring Ann and she said that was fine by her. It emerged that she’d had an ‘attack’ every hour that day: her boyfriend had taken her out walking and then left her; she’d felt angry but he’d just laughed. During the fifth group Dot reported averting a seizure while Celia was describing a recent frightening seizure. 11-2
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All except Helen and Gill reported an increase in seizures during the group’s life, particularly towards the end: Fran’s was a shock as she rarely had seizures. The others were used to frequent seizures and it was not clear whether they were having more seizures than before, o r whether they focused more on them now they had a chance to talk.
The therapist’s pregnancy Indirect references to the therapist’s pregnancy were made, although some of these could have been references to the therapist as the group’s transference mother ; for example, they often talked of overprotective mothers who wouldn’t let them out of sight and of the problems in having a single (divorced) mother. More specific to pregnancy were references to siblings, especially Ann’s twin, and talk of tummy rumblings and eating too much. Someone said Esther’s tummy was speaking to her. Dot often said anxiously, ‘we might miss something out ’, if there was no agenda. When they finally spoke directly about my pregnancy, they had clearly been considering it for some time.
Methodological considerations The patients were not selected with a view to assessing suitability for group psychotherapy. This resulted in a group of people meeting who would not traditionally be considered able to use a group. Accordingly, I modified my technique, actively encouraging talk, particularly about their epilepsy, and minimizing transference interpretations. As noted above, the patients were not randomly selected except Ann, who happened to be in the clinic when another failed to attend. She made significant improvement, in that her voice was near normal volume at the end. True random selection would have produced a different group and one can speculate whether such a group would have been more or less ‘successful’. Readers may conclude that for maximum benefit members should be selected for their ability to make use of psychotherapy, though I would argue that the benefits of such a group should be open to all. Readers may wonder why data on seizure frequency were not collected, as I was interested to see whether the group would affect seizures. The patients were routinely asked to complete seizure diaries for the clinic, but during the meetings several repeatedly asserted they didn’t bother with their diaries for varying reasons : filling in diaries made them think about their seizures, which they believed would increase them ; it was discouraging to see fits were still frequent, despite medication and clinic attendances. As the seizure diaries were so inaccurate as to be misleading, it seemed preferable to exclude them from discussion. It would have been useful to collect data on pre- and post-group anxiety, depression and self-esteem as objective measures of change, and it is intended to proceed with this for future groups.
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Benefits and dflculties The single most important benefit was being in a group with others who had epilepsy. I was astonished these women had never before spoken to others with epilepsy, and only one had witnessed a seizure. They were able to feel at home, let their hair down and reflect on what it was like having epilepsy for the first time with people like themselves, without overanxious and inappropriate responses from others. I was impressed by their concern, support and genuine acceptance of each other. They could confront, learn and experiment in the group. They could talk about difficult areas, such as the shame they felt in having epilepsy and the humiliation of feeling a social outcast, though Ann’s seizure at this point suggested these areas might be too dangerous to contemplate even among themselves. They were eventually able to share feelings of being lonely and unwanted, and painful ambivalence towards parents. What were the difficulties ? There was covert hostility and envy towards the therapist for being healthy, not afflicted with epilepsy and therefore able to d o things they couldn’t, such as drive, have a respected job, be integrated in society. The therapist’s pregnancy was a difficult area, particularly as out of eight women, only two (Helen and Gill) had children, and two had had fertility problems. Helen and Gill, on the one hand, seemed less disabled by the epilepsy, as the children were their priority but, on the other hand, were less able to tolerate the shared introspection and left the group prematurely. Their departure may also have been connected with unspoken envy from the others for having had children. Ann’s gift of baby clothes seemed to perform several functions for the group: as a way of keeping in touch after the group’s end, as an unconscious attempt to repair any damage inflicted on the baby by the group’s envy, and, finally, as an expression of appreciation for help received. Group members regretted the absence of men, as they wanted to hear a man’s point of view, and acknowledged difficulties relating to men. Interestingly, men were not scapegoated, as might have been expected in a more traditional ‘neurotic’ group, perhaps because they already had an enemy in ‘normal ’ society. Group process and defences There was a pattern of closeness followed by withdrawal in the group’s development. Sessions in which they were open towards each other and working on painful issues were followed by sessions full of difficult silences, requests for an agenda, factual questions to me and complaints against doctors, hospitals, drugs. Seizures occurred in both the disclosing and ‘ bottled up’ groups. We could speculate that involvement and withdrawal, although universal psychic phenomena, might be particularly pertinent in the lives of people who were permanently threatened by sudden uncontrollable withdrawal through having a seizure. This may also be relevant to their difficulties tolerating gaps (silences, spaces between sessions and the holiday break) . Indeed, issues about separation and loss were evident, as would be expected given
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the women’s backgrounds. Ann, who often acted unconsciously as group spokeswoman, demonstrated anxiety about loss when she spoke to me after the first meeting and again after the final session. In the second and third sessions, they found it difficult to come together again after a good initial contact followed by a week’s break. I understood the tea and coffee ritual as a way of easing the re-attachment process, and of unconsciously expressing anger with me for dispersing them for a week. Perhaps it was also a communication that they had to feed each other, seeing me as too remote to feed them. Their covert hostility and tendency to withdraw affected me, in that it became difficult at times to feed them with interpretations, so their main source of nourishment had to be each other. Their anxiety on hearing we were half-way through and their covert attempts to prolong the contact again suggested difficulties over separation, as did the poor attendance after the holiday break. When they were anxious, they tended to talk about epilepsy in a defensive way, to avoid continuing anxiety. This reminds one of the psychological and emotional difficulties inherent in giving up a familiar chronic disorder. Seixures Seizures during the group were a helpful experience for members who could explore their reactions and find comfort in shared experience. They occurred at tense moments and Ann’s could have been an unconscious manipulation to change the subject, as she took the limelight later that session. The trend seemed to be of seizures within sessions early in the group’s life, whereas later seizures were reported as happening elsewhere. It is likely they experienced initial sessions as ‘stressful’ (Fenwick, 1991), (certainly tension, anger, depression and excitement were present), but later felt more secure - which may have mitigated the stress. They agreed strong feelings were likely to precipitate seizures, which led to denial and repression. It is difficult to comment about reported seizures, particularly as they were reluctant to talk about them in detail: their certainty that talking about epilepsy produced it was not shaken by the sessions, seven of which were seizure free. Increasing reporting of seizures occurred at times of stress, such as when considering the end and during the holiday break. Whether this reflected a true increase cannot be certain. Suggestions for management The group helped patients to accept they had epilepsy and consider the effect it had on their lives. It is likely that patients who have difficulties in these areas, such as denying they have epilepsy, could benefit from group therapy. Those who are socially isolated and overprotected within the family would find it useful. That the group met a need was demonstrated by their enthusiasm: out of nine selected, only one never came, in marked contrast to the American studies referred to (Appolone & Gibson, 1980; Lessman & Molnick, 1978), in which the pre-group drop-out was 25 per cent. In my view, the biggest need was to be with others like them, in a safe, tolerant, accepting environment. The fact of the group being closed and of fixed duration may have been important in contributing to the feeling of security. One could argue that a longer-term group
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would have allowed a more traditionally analytic approach, such as allowing events to unfold and making more use of transference phenomena. However, a long-term group would have been less acceptable to our patients, at least initially. I would suggest that a psychodynamically based group for patients with epilepsy could be a valuable contribution to their management. It would be interesting to compare therapeutic experiences of this group with one that was longer term.
Acknowledgements I am grateful to the patients who took part in the group and to Dr P. Crawford for providing them from her Epilepsy Clinic at Atkinson Morley’s Hospital. I wish to thank Dr J. Hook for his invaluable support and supervision, and Dr P. Hughes for her most helpful comments on the manuscript.
References Appolone, C. & Gibson, P. (1980). Group work with young adult epilepsy patients. Social Work in Health Care, 6 (2), 23-32. Bear, D. M. & Fedio, P. (1977). Quantitative analysis of interictal behaviour in temporal lobe epilepsy. Archives of Neurology, 34, 454-467. Bernard, S. H. & Klein, R. H. (1977). Some perspectives on time-limited group psychotherapy. Comprehensive Pychiatry, 18 (6), 579-584. Fenwick, P. B. C. (1991). Evocation and inhibition of seizures: Behavioural treatment. In D. Smith, D. Treiman & M. Trimble (Eds), Advances in Neurology, vol. 55. New York: Raven Press. Lessman, S. E. & Molnick, L. R. (1978). Group treatment of epileptics. Heulth and Social Work, 3, 105-1 21. Mungas, D. (1982). Interictal behaviour abnormality in temporal lobe epilepsy. Archives of Generul Pychiutry, 39, 108-1 11. Pond, D. A. & Bidwell, B. H. (1960). A survey of epilepsy in fourteen general practices. Epilepsia, 1, 285-299. Rosser, R., Denford, J., Heslop, A., Kinton, W., Machlin, D., Minty, K., Moynihan, C., Muir, B., Rein, L. & Guz, A. (1983). Breathlessness and psychiatric morbidity in chronic bronchitis and emphysema : A study of psychotherapeutic management. Psychological Medicine, 13, 93-1 10. Tan, S. Y. & Bruni, J. (1986). Cognitive-behaviour therapy with adult patients with epilepsy: A controlled outcome study. Epilepsia, 27 (3), 225-233. Tattersal, R. B., McCulloch, D. K. & Aveline, M. (1985). Group therapy in the treatment of diabetes. Diabetes Care, 8 (2), 18&188. Waxman, S. G. & Geschwind, N. (1975). The interictal behaviour syndrome of temporal lobe epilepsy. Archives of General Pychiatry, 32, [email protected]
Received 5 September 1991 ;revised version received 7 February 1992