Seizure 1992; 1: 127-l 31

Employment among young people with epilepsy

DEIRDRE CARROLL

BRAINWAVE The Irish Epilepsy Association, Dublin, Ireland

Correspondence to Deirdre Carroll, Irish Epilepsy Association, 249 Crunilin Road, Dublin 12, Ireland

The study reports the findings of a follow-up review of 38 trainees who had completed social skills training
programmes run by BRAINWAVE The Irish Epilepsy Association and FAS, the state training and employ-
ment authority, during the period 1986 to 1990. The social skills programmes were aimed at young, unquali-
fied school leavers. A total of 101 young people completed the programmes, 45 of whom had epilepsy. Of those
with epilepsy, 38 were interviewed about their current employment position. On completion of the programmes
58% had found a job or gone on to further training. At the time of interview 39% were in work or training.
Fifty-eight per cent were still experiencing seizures (a seizure in the last 12 months). Fifty per cent of those
interviewed felt that they were being actively discriminated against because of their epilepsy. Fifty-eight per
cent had made contact with the National Rehabilitation Board, the state placement service for people with a
disability, but only 36% of these were in training or employment at the time of interview. Sixty-six per cent of
those interviewed had found the programmes helpful in terms of increasing their self-confidence and social
skills. The study points to the need for more specialized training and job placement programmes for young
people with epilepsy.
Key words: young people; employment; social skills; training; epilepsy.

INTRODUCTION trainees were assisted to develop their social

and communication skills and to sample basic
Many young people today are experiencing dif- skills in art, drama, home management, wood-
ficulty in finding suitable employment. How- work, decorating and leather-work. A total of
ever, the difficulties facing young people with 101 trainees completed the four training pro-
epilepsy are even more extensive and more grammes, 45 of whom had epilepsy.
unfair. For the young person with epilepsy, es- The placement rate for trainees on com-
pecially where that young person continues to pletion of the four programmes is shown in
have seizures, no matter how occasional, the Table 1. Although, the placement rate in jobs
prospect of finding a job is reduced even and training was higher for those without epi-
further. lepsy than for those with epilepsy (72% versus
It was with this group of young people in 60%) the overall rate was encouraging.
mind that BRAINWAVE The Irish Epilepsy
Association in conjunction with FAS, the state
training and employment authority, estab- Table 1: Placement of trainees on completion of the four
lished a pilot social skills familiarization pro- training programmes
gramme in 1986. Three other programmes No. of No. of trainees
followed. The programmes were unique in so Type of trainees with without Total no.
far as young people with epilepsy were trained placement epilepsy epilepsy trainees
with those who did not have epilepsy. All of the n (%) n (%) n (%)
trainees, however, would have experienced dif- Job full-time 13 (29) 24 (43) 37 (37)
ficulties at school and would have been Job part-time 2 (4) 1 (2) 3 (3)
assessed as lacking the interpersonal and vo- In training 12 (27) 15 (27) 27 (27)
No placement 19 (40) 14 (25) 32 (31)
cational skills necessary to be effective in the No information - - 2 (i, 2 (2)
job market.
Total 45 (100%) 56 (100%) 101 (100%)
During the 6 month training period the

1059-1311192/020127+05 $0800/O @ 1992 Baillkre Tindall

128 D. Carroll

The programmes were discontinued in 1990. because of their epilepsy’. There are no similar
In May 1991 it was decided to undertake a figures for Ireland, but it is unlikely that they
follow-up study of trainees who had completed would differ radically. While the ability to earn
the programmes. Although the original place- a living is important to all young people, for
ment rate was good it was felt to be important young people with epilepsy it assumes a special
to learn the longer term success and duration importance. For this reason it was of great
of placements. Owing to constraints on interest to find out what the former trainees
resources and time the study was confined to had been doing since they left the programmes.
those trainees with epilepsy. For some it would have been 5 years since they
completed the programme, for others only a
year. Table 2 compares the current employ-
METHOD ment position of the young people with the
employment position on completion of the pro-
Forty-five trainees had been referred to the gramme.
programme because of their epilepsy. Thirty-
eight of these were contacted. In 34 cases the Table 2: Current occupation of young person compared with
person him/herself was interviewed by the occupation on completion of training programme
author and in four cases information was Occupation on
obtained from parents. An interview schedule Current completion of
occupation training
was devised which covered areas such as: basic
Type of occupation n (%) n (%)
demographic data, job situation, job satisfac-
tion, and views on the training programmes. Job full-time 6 (16) 9 (24)
Job part-time 1 (3) 1 (3)
The majority of former trainees were inter- 8 (21) 12 (31)
In training
viewed in their own homes and were very co- Unemployed 23 (60) 16 (42)
operative. 38 (100)
Total 38 (100)

RESULTS The current employment position has deter-

Demographic information
Twenty-two (58%) of the former trainees were
male and 16 (42%) female. All but one lived in
the greater Dublin area. The majority (27,
71%) were single, five (13%) were engaged,
three (8%) were married and three (8%) were
unmarried mothers. The majority (27, 71%) of
former trainees were aged between 20 and 25
years old, with one as old as 30. The older par-
ticipants had for the most part been on the first
programme in 1986. All but five (13%) lived
with their parents. For some the family home
was of utmost importance in providing support.
It could be argued that too much family sup-
port can promote over-dependence, which was
certainly the case in some instances. However,
it could also be argued that in times of high
unemployment for young people few could
afford to undertake independent living.
Employment
In 1986 it was estimated that between 50000
and 100000 people in Britain were experienc-
ing difficulties in finding or maintaining a job
iorated somewhat with only six (16%) in full-
time employment and eight (21%) in training.
This is not totally unexpected given the high
level of unemployment for unqualified school
leavers. On completion of training pro-
grammes, there is great emphasis put on
placing the trainee in jobs or on further train-
ing programmes. The length of time that the
person spends in their newly found job or train-
ing is often neglected. Unqualified school
leavers who find jobs tend to be concentrated in
the marginal sectors and occupations where
labour turnover is high. Many of these, sub-
sequently, find themselves joining their unem-
ployed counterparts amongst the long term job-
less. It has been shown recently in a report on
the youth labour market in Ireland that there
are no significant long term effects of training
on the chances of being in work for unqualified
school leavers2.
Only one of those employed had a skilled
trade (painter). Those in work and training
were generally content with what they were
doing and had good relations with their
employers and fellow workers. Attendance and
work performance were also good confirming a
trend noticed in other research on people with
epilepsy in employment3. Of the 23 (61%) who
Employment among young people with epilepsy
were unemployed, only 10 (43%) were actively
seeking work.
Twenty-two (58%) of those interviewed had
been in contact with the Vocational Officers of
the National Rehabilitation Board, the place-
ment service for people with a disability. Only
eight (36%) of these, however, were in work or
training. When contacted, the officers were
aware of the difficulties facing this group and
were anxious to find suitable placements for
them. However, in at least three cases they
were having extreme difficulty in doing so.
Epilepsy and employment
All those who were interviewed had been
referred to the training programmes because of
their epilepsy. Epilepsy was seen as a contribu-
tory factor to their poor school performance
and lack of interpersonal skills. Not all of the
former trainees wished to talk about their epi-
lepsy and their feelings were respected.
Twenty-two (58%) were still experiencing
seizures and it was interesting to note that two
of those with intractable epilepsy (one tonic-
clonic and one complex partial) were amongst
the six in full time work. The young person’s
epilepsy was felt to be a major factor for
employers as the following examples show.
Tom, 28 years old, complex partial seizures
Tom is in full time, temporary employment as
a filing clerk/messenger. His position is
reviewed every 3 months. Tom has been told by
his superior that while his work rate is good,
there is some concern about sending him out on
messages owing to his epilepsy. He fears that
this may affect his prospects of securing per-
manent employment. This is worrying Tom
since he is engaged to be married..
John, 27 years old, tonic-clonic seizures
John recently applied for a place on a state
training scheme. This scheme involved the
renovation of the local community hall one
street away from John’s home. He fulfilled all
the qualifications required but was turned
down on medical grounds owing to his epilepsy.
John has had no seizures for over 18 months.
129
He remains at home and is upset and depressed
by this decision.
Frank, 30 years o/d, tonic-clonic seizures
Frank was placed in a training centre on com-
pletion of the programme. He has daily tonic-
clonic seizures. After 7 months on the training
programme, it was decided that it was too dan-
gerous for Frank to remain at the centre
because of the proximity of machinery. No
alternative was found for Frank. Horticulture
was suggested, but Frank has no interest
whatsoever in horticulture. He has been at
home ever since.
It is not surprising given these attitudes that
people with epilepsy do not want to disclose
information about their condition. People are
usually willing and indeed relieved to disclose
that they are sufferers, if they can be assured
that they will be treated fairly3. This was also
the case with many of those interviewed.
Social contacts
Many of the young people spent a large pro-
portion of their time at home and their families
were often the focus point of their social life.
Feelings of isolation and loneliness were
further encouraged for many by their being at
home all day. Psychological problems are
higher in people with epilepsy: the most
common being anxiety and depression. This
was evident in the cases of two of the young
people interviewed for whom anger and
depression were making personal and family
relations difficult.
It was of interest that one of the benefits the
former trainees felt that they had obtained
from the training course was in this whole area
of social contact, meeting people and increas-
ing their confidence. Eleven (19%) found that
the courses were too basic or that they did not
suit them personally, but it was encouraging to
see that the majority 25 (65%) found them
helpful in increasing self confidence, personal
and job skills. Enquiries about other trainees
were often made and the desire to meet up with
them expressed. One young woman mentioned
how much she liked the programme, not so
much for the content, but for the friendships
she made. A few had kept in contact with
130
people they had met on the programmes, but
these were the exceptions.
CONCLUSION AND DISCUSSION
The size and nature of the study make it diffi-
cult to draw firm conclusions on which future
policy decisions can be made. Further studies
of larger numbers of people both with epilepsy,
as well as comparable groups without epilepsy
are needed. Nonetheless, it is possible to
discuss the limitations of available services
which the study highlighted and to discuss the
implications of the findings for the develop-
ment of future services. The three main areas
of concern which emerged from the study were
(a) employment, (b) training and (c) counsel-
ling.
Employment
The high level of unemployment (61%) is wor-
rying. Surveys in Britain and the United
States also indicate high levels of unemploy-
ment for people with epilepsy, ranging from
25% to 42%‘. It is likely that high levels of
youth unemployment will continue in Ireland
for some time. This will demand a high level of
activity on labour market programmes cater-
ing for young people. It is expected that
government policy in the future will shift to-
wards groups facing particular difficulties in
the labour market, i.e. the long term unem-
ployed and unqualified/early school leavers. It
is hoped that measures will also target young
people with a disability such as epilepsy.
Those surveyed, who were in work, were
managing well and were keen to prove them-
selves in their jobs. They had a high level of
motivation and a good approach to people.
However, those who were unemployed had to
face, in addition to the usual difficulties facing
all unqualified job seekers, the problem of
employers’ attitudes towards epilepsy. The
attitudes of the employer as well as the atti-
tude of the person him/herself are of crucial
importance in the search for work, and must be
addressed4v5.
Training
Placement in training programmes was not
always a simple matter. Vocational officers
D. Carroll
were experiencing considerable difficulty in
three cases in finding suitable training pro-
grammes for young people with epilepsy. It
should be remembered that the ‘difficult to
place’ are a diverse group, not all of them have
frequent seizures, some have not sought
employment for years, others have a career of
unemployment. Vocational rehabilitation pro-
grammes would need to take this into account.
The small group with more problematic
seizure control were lacking social maturity
and would require more specialized training
facilities than were available. Some might
never be able to undertake open employment
and would need to be employed in a sheltered
capacity.
Counselling
The feelings of depression and frustration
expressed by some of those interviewed must
also give rise to concern. Anger, resentment
and loss of confidence were often present.
These make personal relationships extremely
difficult and can have the effect of accentuating
further the prejudices which people come
across amongst the public and employers. The
psychological consequences of epilepsy have
received greater attention in recent years6,7.
Such features can cause many difficulties when
it comes to finding work and should be a promi-
nent target in programmes preparing young
people for work. Not all young people with epi-
lepsy require such help but a minority do and
should be assisted to explore their feelings. The
ability to cope with a disability could prove a
more valuable skill than particular vocational
skills.
One important question to emerge must be
how effective were the original training pro-
grammes? Does the high level of unemploy-
ment indicate a lack of success? The initial
good placement rate was encouraging but de-
creased over time. This would seem to be a
feature of training programmes where there
are positive short term benefits but no signifi-
cant long term ones. However, it must also be
remembered that job placement is not the sole
objective. Developing confidence, social and job
skills are also basic objectives. The majority
(66%) of the young people interviewed felt that
the programmes had helped them learn such
skills and to come to terms with their epilepsy.
Those who expressed dissatisfaction with the
programme (20%) had, perhaps, too high
Employment among young people with epilepsy 131

expectations for such a short course or were 2. Breen, Richard. Education Employment and Training
in the Youth Labour Dublin, Economic and
Market.
inappropriately placed in the first place. Social Research Institute, 1991: pp. 61-70.
The survey findings would seem to point to 3. McLellan, D.L. Epilepsy and employment. Journal of
the need for a more comprehensive programme the Society of Occupational Medicine 1987; 37: 94-99.
of training and development for young people 4. John, Carol and McLellen, D.L. Employer’s attitude to
with epilepsy, many of whom are not being epilepsy. British Journal of Industrial Medicine 1988;
45:713-715.
catered for under the existing rehabilitation 5. Collings, John. A. Psychosocial well-being and epilepsy:
programmes. Specialist programmes have an empirical study. Epilepsia 1990; 31 (4): 418-426.
proved extremely effective in America during 6. Betts, T.A. Depression anxiety and epilepsy. In: Epi-
the last 10 years’. Successful as these pro- lepsy and Psychiatry (Eds E.H. Reynolds and M.R.
grammes may be, they are, however, costly to Trimble). Edinburgh, Churchill Livingstone, 1981: pp.
60-71.
run and would need to be adapted to the Irish 7. Dam, M. and Dam, A.M. Is there an epileptic person-
experience. ality? In: Aspects of Epilepsy and Psychiatry (Eds M.R.
Trimble and T.B. Bolwig). Chichester, John Wiley and
Sons Ltd, 1986: pp. 9-18.
REFERENCES 8. Hauser, W.A. and Hesdorffer, D.C. Epilepsy: Frequency
1. Floyd, M. A review of published studies on epilepsy and Causes and Consequences. Maryland, Epilepsy Founda-
employment In: Epilepsy and Employment (Ed. J. tion of America, 1990: pp. 273-296.
Oxley). London, Royal Society of Medicine, 1986.