Embed Size (px)
Citation preview
www.elsevier.com/locate/yebeh
Epilepsy & Behavior 11 (2007) 13–19
Knowledge of and attitudes expressed toward epilepsy by carersof people with epilepsy: A UK perspective
L. McEwan a, J. Taylor a, M. Casswell a, R. Entwistle a, K. Jacoby b, J. Gorry b, A. Jacoby b,G.A. Baker a,*
a Division of Neurosciences, University of Liverpool, Liverpool, UKb Division of Public Health, University of Liverpool, Liverpool, UK
Received 6 November 2006; revised 8 February 2007; accepted 11 February 2007Available online 1 June 2007
Abstract
Objective. The aim of this study was to investigate the knowledge and attitudes possessed by carers of people with epilepsy.Methods. A postal survey of 2000 carers recruited from the membership list of a UK epilepsy charity was conducted using a standard
set of questions. The questions covered their knowledge of epilepsy (e.g., estimating prevalence and identifying causes of epilepsy) andtheir attitudes (e.g., about the characteristics of people with epilepsy).
Results. Overall, 651 carers responded. Only 29% of carers were male, with the majority between 40 and 60 years of age. The majorityof respondents (76%) overestimated the prevalence of epilepsy. Twenty-five percent believed that epilepsy was caused by stress. Themajority of respondents believed that people with epilepsy were treated differently by others. Only a small percentage believed that peoplewith epilepsy should be barred from such professions as teaching and nursing.
Conclusions. Carers of people with epilepsy generally possessed high levels of knowledge about most aspects of epilepsy, and theirattitudes toward those with epilepsy were benign. There were, however, particular groups who were more likely to hold more positiveattitudes, and these included younger and better-educated individuals. Limitations of this study include that the sample was self-selectedand that only a third of the people to whom the questionnaire was mailed responded.� 2007 Elsevier Inc. All rights reserved.
Keywords: Carers; Attitudes and beliefs; Knowledge; Adjustment epilepsy
1. Introduction
It is well known from research outside the field of epi-lepsy that caring for a person with a chronic illness maybe emotionally demanding. For example, high levels ofemotional distress have been reported in a study of caregiv-ers of people with dementia and people with learning dis-abilities [1,2]. However, understanding of the impact ofepilepsy on family members and other informal carershas so far attracted remarkably little research [3]. What
1525-5050/$ - see front matter � 2007 Elsevier Inc. All rights reserved.
doi:10.1016/j.yebeh.2007.02.019
* Corresponding author. Address: Clinical Centre for Research andEducation, Division of Neurosciences, University of Liverpool, LowerLane, Fazakerley, Liverpool L9 7LJ, UK. Fax: +44 151 529 5503.
E-mail address: [email protected] (G.A. Baker).
previous research has shown is that: mothers of childrenwith epilepsy may be at greater risk of psychopathologythan women without children with the condition; divorcerates are elevated in parents of children with epilepsy;and siblings of children with epilepsy are also at heightenedrisk of psychological distress [4]. It has also been reportedthat families/caregivers of adults with epilepsy complain oflow levels of practical and emotional support, with signifi-cant implications both for the family member/carer and forthe person with epilepsy, particularly when the individualwith epilepsy has frequent and severe seizures [5,6]. Thisfinding supports earlier ones that caregivers are at greaterrisk of depression than those who are not caregivers [7]and that carers of people with epilepsy have poorer adjust-ment and poorer quality of life than the general population
14 L. McEwan et al. / Epilepsy & Behavior 11 (2007) 13–19
[8,9]. Research into the process of carer adjustment hasrevealed that particular ‘‘emotion-focused’’ coping stylessuch as denial and wishful thinking may result in pooradaptation, whereas more pragmatic problem-solvingapproaches can lead to more positive adjustment [10].More recently, a study investigating emotional expressionin carers reported that carers found it difficult to adjustto the difficulties created by a seizure disorder. The authorsof the study suggested that interventions that encourage aproblem-solving approach and better education of carersabout seizure disorders are likely to be beneficial [11].
A number of recent UK government-funded surveyshave highlighted the need for people with epilepsy and theirfamilies to receive counseling and better information. Ken-dall and colleagues, in response to such initiatives [12],interviewed carers and identified a number of importantfactors that prevented successful searching for and receiv-ing of information. These included the need for individual-ized information, a preference for face-to-face contact overwritten material, the confidence to seek information fromvarious sources, and the failure of epilepsy support organi-zations to publicize their role in supporting carers, as wellas those with epilepsy [12]. Additionally, it has been shownthat the quality of the relationship between an individualwith epilepsy and his or her family can have a significantimpact on how that individual adjusts to his or her healthand on the level of emotion expressed in the family [13].
Given that family members and other carers play a sig-nificant role in the lives of people with epilepsy and givenwhat is known about the potential impacts of caring, itseems important to gain an understanding of carers’ levelof knowledge about the condition. We have conducted aseries of studies to investigate the attitudes, knowledge,and beliefs of various groups of individuals with whompeople with epilepsy interact [14,15]. In this article, wereport on our findings in relation to family members andother informal carers of people with epilepsy and makecomparisons between their expressed attitudes and thoseof the other groups we have studied.
2. Study design and methods
This study represents the third arm of a three-arm investigation exam-ining public attitudes toward epilepsy. In the first arm, members of theUK General Public were surveyed using face-to-face interviews [14]; inthe second arm and this arm, questionnaires were mailed to samples ofemployers [15] and relatives and/or friends of people with epilepsy, respec-tively. The sampling frame for this third arm was the computerized mem-bership list of a large national epilepsy charity, Epilepsy Action (EA). Tocomply with the terms of use of the membership database, questionnaireswere sent out anonymously on our behalf by EA staff, and it was not pos-sible to identify individuals who did not respond. Consequently, we werenot able to send reminders.
An accompanying letter sent out with the questionnaire explained thepurpose of the survey as being to explore knowledge about epilepsy inthe general public in order to develop appropriate public education pro-grams about the condition. The letter also explained that we were inter-ested in understanding how the views of people who know someone withepilepsy differ from the views of members of the general public who donot know anyone with the condition. Recipients were asked to complete
the questionnaire if they considered themselves to be the principal carerof someone with epilepsy. Alternatively, if the recipients themselves suf-fered from epilepsy, they were asked to pass the questionnaire on to aperson they identified as their main carer. A prepaid envelope was pro-vided for return of the questionnaire to EA. The survey was mailed tojust over 2000 members of EA. The study was conducted over a 3-monthperiod in 2004.
To develop the question set, two of the authors (G.B., A.J.) workedwith survey experts at the UK office of National Statistics (ONS) todevelop 16 precoded and 2 open-ended questions relating to knowledgeof epilepsy (e.g., estimating prevalence and identifying causes of epilepsy)and attitudes (e.g., about the characteristics of people with epilepsy).Where possible, we replicated questions from earlier studies of public atti-tudes elsewhere in Europe and on the North American continent [14].However, previously used questions that were judged culturally inappro-priate or outdated conceptually or linguistically were amended or novelquestions were developed.
In addition to answering questions relating to knowledge of and atti-tudes toward epilepsy, respondents were asked to provide basic sociode-mographic details, including age (in 10-year age bands), gender,educational level, and relationship to the person with epilepsy. Educa-tional level was categorized as: no formal education qualifications; basicschool leavers qualification (General Certificate of Secondary Education,or GCSE); higher-level school leavers qualification (AS/A); postschoolnondegree level qualification (Higher National Certificate/HigherNational Diploma, or HNC/HND); university-level education (degree orhigher degree). Relationship to the reference person with epilepsy wasdefined as: spouse/partner, parent, child, or other.
The statistical analysis was conducted using the independent t test, v2
test, and analysis of variance with the significance level set at 0.05. Thesoftware used to analyze the data was SPSS Version 13.
3. Results
Questionnaires were returned by 653 individuals (a littleunder a third of those approached). The responses of twoindividuals were excluded because they reported that theyhad epilepsy themselves. The final analysis is thereforebased on 651 respondents. Results and percentages werecalculated excluding the small numbers who missed somequestions or did not answer questions completely. Ratesof nonresponse across the 16 precoded questions were lessthan 1%, with a single exception (Question 7, ‘Which, ifany, of the following jobs do you think people with epi-lepsy should not be employed in?’), for which the ratewas 5%.
The characteristics of the respondents are summarizedin Table 1. Only 29% of respondents were male; 89%reported that they were relatives of someone with epilepsy,and the remaining 11% were close friends. The respondentsranged from 15 to 90 years of age, with the majoritybetween 41 and 60. Only 17% reported having left schoolwith no formal qualifications; 27% had a university degreeor other higher qualification.
Unsurprisingly, as all of the respondents were carers forsomeone with epilepsy, 93% had previously seen someonehave a seizure. When asked to estimate how many peopleper 1000 have epilepsy, 24% of carers estimated it correctlyas fewer than 10 per 1000. The majority incorrectly esti-mated the prevalence as being higher, between 20 and 49per 1000, with 23% grossly overestimating it as being morethan 100 per 1000 (see Fig. 1).
Table 1Demographics of sample
Males 28.6%Mean age 49.82 ± 13.12Age
15–20 1.7%21–30 5.6%31–40 15.8%41–50 28.9%51–60 28.9%61–70 11.5%70+ 7.6%
EducationNone 17.2%Other 11.4%GCSE 24.1%AS/A levels 12.2%HNC/HND 7.7%Degree/higher degree 27.4%
L. McEwan et al. / Epilepsy & Behavior 11 (2007) 13–19 15
When asked about the causes of epilepsy, 85% of carersbelieved it resulted from an accident such as an injury tothe head; 80.3% attributed it to a disorder of the brain,and 64% characterized it as a problem that arose beforeor at birth. However, similarly to the general public, a sub-stantial percentage, in this case more than a quarter,thought it arose as a result of stress or pressure (see Fig. 2).
Carers were asked to describe what they expected to seeduring the course of a seizure. The majority expected to seeconvulsions and shaking (see Table 2); however, 82% ofcarers also thought that an epileptic seizure might takethe form of a blank spell, and 53% described repeatedmovements as characteristic of seizures. Epilepsy wasdescribed as a ‘‘physical problem’’ by 46%, as a ‘‘mentalproblem’’ by 12%, and as ‘‘both a physical and a mentalproblem’’ by 25%. Ten percent described it as neither,and 7% were unsure.
With respect to attitudes toward epilepsy, a percentageof carer respondents much higher (81%) than that of thegeneral public thought that people with epilepsy are treateddifferently by society. Carers were asked from which jobs
20-4910-195-9 < 5
Prev
20
15
10
5
0
Q2. Out of 1000 members of the general pub
No
of
resp
on
den
ts
Fig. 1. Estimated prevalence of epilepsy (b
people with epilepsy should be barred: a large percentagethought that they should not be employed as long-distancelorry drivers or firefighters; the majority also believedsomeone with epilepsy should not be employed in thearmed forces; and 33% believed they should not be policeofficers. Small percentages reported people with epilepsyshould be barred from nursing, teaching, and factory work.Only 13% thought restrictions should not apply to any ofthese occupations (see Table 3).
Similar to the general public, carers were asked to ratehow much concern a colleague’s health condition wouldcause if they had to work with him or her. The concernwas rated using a 7-point Likert scale, where 0 denotedno concern and 6 great concern. Mean ratings of concernwere calculated, with stress/depression causing the mostconcern, followed by a heart attack, and then epilepsy.
Ninety-five percent of carers agreed with the statementthat ‘‘people with epilepsy are as intelligent as everyoneelse’’; 97% believed that children with epilepsy should beallowed to play with other children; 93% agreed that ‘‘aperson with epilepsy can be as successful as other peoplein their chosen career’’; and 86% thought ‘‘a person withepilepsy can lead a normal life’’. Despite these highlypositive findings, 21% reported that people with epilepsyhave more personality problems than other people (seeTable 4).
Answers to these statements were converted to create anoverall attitude toward epilepsy score ranging from a min-imum of 7 to a maximum of 35. A high score on this mea-sure indicated a more positive attitude toward epilepsy.Carers had a mean score of 28.29 ± 3.22. Subgroup analy-ses were performed on this attitude score to investigate theinfluence of carer characteristics such as age, sex, level ofeducation, and relationship to the person with epilepsy.Although there was no effect of age, sex, or relationshipon attitude score, a significant difference was notedbetween those with a degree (M = 28.69) and those withno formal educational qualifications (M = 27.48), the for-mer having a significantly more positive attitude.
>500 200-499100-19950-99
alence
lic, how many do you think would have epilepsy?
ased on answers of 642 respondents).
Q10. Which of the following do you think are the main causes of epilepsy?
0
10
20
30
40
50
60
70
80
90
Acc
iden
ts e
.g. h
ead
inju
ry Dis
orde
r of
bra
in
Pro
blem
aris
ing
befo
re/a
t bir
th
illne
ss/d
isea
se
Pro
blem
with
N
ervo
us S
yste
m
Alc
ohol
/dru
g ab
use
Res
ult o
f ano
ther
Str
ess/
pres
sure
Old
age
Men
tal i
llnes
s
Infe
ctio
n
Non
e
Causes of epilepsy
% s
ayin
g
Fig. 2. Causes of epilepsy (based on 650 respondents, excluding the person who did not answer the question).
Table 2Signs of seizures according to survey respondents
Sign of seizure % Respondents (N = 650)
Convulsions/shaking 96.8Blank spell 82.2Loss of consciousness 81.5Person drops to the ground 79.8Repeated movements 53.1Rapid blinking 38.9Choking 22.5Vomiting 14.9Fainting 14.9Other 24
Table 3Occupations from which people with epilepsy should be barred accordingto survey respondents
Occupation % Respondents (N = 618)
Lorry driver 82.4Firefighter 72.3Armed forces 55.3Police officer 32.7Factory worker 22.2Nurse 12.5Teacher 6.1Shop assistant 1.9Solicitor 1.6
None 12.9
16 L. McEwan et al. / Epilepsy & Behavior 11 (2007) 13–19
4. Discussion
This study investigated levels of knowledge and atti-tudes expressed toward epilepsy among family membersand carers of people with epilepsy. We are unaware ofany previous studies systematically investigating knowl-edge of and attitudes expressed toward epilepsy in thisgroup. We are therefore unable to compare our findings
except with those reported in our parallel study carriedout among members of the UK general public. As previousresearch has shown that contact is an important stigma-reducing strategy [16], we predicted that familiarity withepilepsy would be an important determinant of knowledgelevels and expression of positive attitudes toward epilepsy.Although it seems that in comparison to the general popu-lation [14], carers and family members do have greaterknowledge about epilepsy, both groups express largely sim-ilar attitudes.
Overall, family members and carers appeared to be wellinformed about this chronic neurological condition, includ-ing its potential causes, the way in which seizures manifest,and the fact that it is a physical rather than a mental prob-lem. Unsurprisingly, they are less well informed about theprevalence of epilepsy, with the vast majority overestimat-ing it.
Attitudes toward epilepsy in this UK sample of familymembers were largely favorable. The majority agreed (tovarying extents) with the statements that: people with epi-lepsy are as intelligent as everyone else; children with epi-lepsy should be allowed to play with other children;persons with epilepsy can be as successful as other peoplein their chosen career; and people with epilepsy can leada normal life. These findings are consistent with theexpressed attitudes of the UK general public. One less posi-tive and somewhat surprising finding was that, as in thegeneral population, a relatively large proportion (one-fifth)agreed that people with epilepsy have more personalityproblems than others. However, it is interesting to notethat in the earlier study by Gouvier et al. [17] from whichthe statement was derived, a similar percentage of respon-dents concurred. The reasons for this finding are uncertain:we speculate that it may reflect carers’ particular view ofthe person they know as not the person he or she wasbefore developing epilepsy, or their deeper understanding
Table 4Attitudes expressed toward people with epilepsy
Attitude Strongly agree Agree Neither Disagree Strongly disagree
As intelligent as others 80.5 14.1 4.3 0.8 0.3More personality problems 4.7 16 19.8 25.9 33.6Frightening to see seizure 31.2 56.8 8.9 2.3 0.8Children with epilepsy allowed to play with others 85.8 11.2 0.5 0.3 2.2Treat epilepsy with drugs 47.5 38 9.4 4.2 0.9Successful as others in career 68.8 23.9 4.2 2.3 0.8Normal life 55.6 30.7 7.3 5.6 0.9
L. McEwan et al. / Epilepsy & Behavior 11 (2007) 13–19 17
that those developing a chronic condition such as epilepsyare at risk of developing psychological problems. Furtherqualitative work is needed to explore carers’ affirmationsof this statement and elicit their reasons for doing so.Another less positive finding was that despite the fact thatalmost all respondents reported having seen a seizure, themajority still reported it was a frightening experience. Per-haps reflecting their greater knowledge and experience ofthe potential for stigma and discrimination, a much higherproportion of carers than members of the general publicfelt that people with epilepsy are treated differently by soci-ety [14], despite the evidence of generally more favorablepublic attitudes in the United Kingdom since the street sur-veys carried out in the 1980s [18,19].
The majority of family members and carers concurredwith the view that people with epilepsy should not beallowed to work in occupations from which they are cur-rently barred by UK legislation. Just over half of carersthought that people with epilepsy should not be employedin the armed forces, another career currently unavailable topeople with epilepsy. One-third thought that people withepilepsy should be barred from working as a police officer,and one-fifth that they should not be employed as factoryworkers. In contrast, only small percentages said peoplewith epilepsy should be barred from careers such as teach-ing and nursing—both occupations in which, currently inthe United Kingdom, people with epilepsy are subject toindividual assessment of their suitability. In contrast, inthe general public survey [14], this opinion was held byapproximately a quarter of informants.
When asked to rate how much concern a work col-league’s health condition would cause them, family mem-bers and carers said the condition causing the greatestconcern was stress/depression. This was consistent withour finding in the general public survey and may, in part,have been a response to the specification in the questionof stress/depression as involving a lengthy work absenceand recognition of the consequent workload implicationsfor other work colleagues. Alternatively, family membersmay have recognized that between seizures, the majorityof people with epilepsy can function normally and are ascapable as others of carrying out their daily occupations.Again, determination of the rationale behind theseresponses requires further in-depth investigation.
We found no significant differences with respect to age,sex, or relationship in attitudes toward people with
epilepsy. One nonsignificant trend, however, was thatyounger people (those in the 21–30 age band) had morepositive attitudes toward epilepsy than older people(70+), suggesting a possible intergenerational shift in atti-tude. As in previous studies, educational level was foundto be a determinant of positive attitudes.
This study has a number of limitations. First, the samplewas self-selected from family members and carers identifiedthrough the membership list of an epilepsy patient supportorganization. We have no way of knowing how carersbelonging to EA differ from other carers of people with epi-lepsy, though it is possible that they are individuals forwhom caring is more problematic or burdensome, andwho may therefore hold somewhat negative views aboutepilepsy. Equally, membership may reflect their greatercommitment to the role of carer, and as a result theymay hold more benign attitudes. The nature of our investi-gation does not permit examination of the direction of anysuch potential biases. Second, less than a third of respon-dents were men, though this may simply reflect the gen-dered nature of ‘‘caring’’. Third, only a little over a thirdof those approached returned a questionnaire; and becausethe questionnaires were sent anonymously, it was not pos-sible to identify and compare the characteristics ofresponders with those of nonresponders. In fact, theresponse rate, though low, was good in comparison withrates for other recent surveys conducted by EpilepsyAction, suggesting the importance and relevance of thetopic to its membership. Fourth, the explanatory powerof this investigation was limited by its quantitative nature:the use of structured questions does not allow detailedexploration of the responses provided. Fifth is the possibil-ity of social acquiescence in the responses obtained: infor-mants may have answered the questions in ways theyperceived as socially desirable. Finally, we recognize thepotential for ambiguity in the wording of two questions,namely, the question asking whether epilepsy was a physi-cal or mental health problem; and the question, alreadycommented on above, asking whether people with epilepsyhave more personality problems. In future surveys incorpo-rating the question set, it would be important to conductfurther validation exercises to address these ambiguities.
What implications can be drawn from these and otherfindings? First, people with epilepsy and their family mem-bers/carers have a continuing need for adequate knowl-edge. However, acquiring this knowledge is fraught with
18 L. McEwan et al. / Epilepsy & Behavior 11 (2007) 13–19
difficulties, not the least being endowing people with epi-lepsy and their family members/carers with the confidenceto request and search out such information. In this respectthere is an important role for those who provide clinicalservices and for epilepsy support charities to ensure theprovision of easy-to-read, accurate information. Possessionof a strong knowledge base can play a significant role inaddressing the felt stigma of epilepsy [20]. Second, theremust be more effective campaigns to educate the generalpublic about the nature of epilepsy. Intervention research,however, has highlighted the fact that knowledge alone isinsufficient to change people’s attitudes and behavior andexposure to an individual with the condition is also impor-tant. In light of this, it is disappointing that there are fewinfluential individuals with the condition willing to act asambassadors for epilepsy. Third, professionals working inthe field should take the opportunity, when provided, tochallenge where necessary the negative attitudes and misbe-liefs held by family members and carers. Doing so will helpto ensure that they do not exert a major impact on theirown and the cared-for individual’s day-to-day functioning.
Acknowledgments
We thank all the members of Epilepsy Action who tookpart in this survey: we are grateful to them for taking thetime and energy to complete the questionnaire. Thanksalso go to the staff of Epilepsy Action who administeredthe mail-out exercise on our behalf. Sanofi Synthlelaboprovided an educational grant to support this work.
Appendix A
1. First of all, could you tell us if you, or a member ofyour family or a close friend, has ever had epilepsy?
- Yes, self- Yes, a family member- Yes, a close friend- No2. Out of 1000 members of the general public, howmany do you think would have epilepsy?
- <5- 5–9- 10–19- 20–49- 50–99- 100–199- 200–499- P5003. Have you ever seen anyone having an epilepticseizure?
- Yes- No- Not sure4. Which of the following would you notice about some-one who was having an epileptic seizure? Please ringall that apply.
- Loss of consciousness- Convulsions/shaking- A blank spell- Repeated movements (such as plucking at clothes)- Person drops to the ground- Rapid blinking- Choking- Vomiting- Fainting- Other (please write in box below)
5. Do you think that epilepsy is a physical problem, amental problem, or both a physical and a mentalproblem?
- A physical problem- A mental problem- Both a physical and a mental problem- Neither- Not sure6. Do you think that people with epilepsy are treateddifferently from others by society?
- Yes- No7. Which, if any, of the following jobs do you think peo-ple with epilepsy should not be employed in? Pleasering all that apply.
- Teacher- Nurse- Police officer- Solicitor- Shop assistant- Long-distance lorry driver- Firefighter- Factory worker- Armed forces- None of these8. Suppose a new colleague came to work with you withone of the conditions listed below. For each conditionlisted, we would like to know how much concern itwould cause you. So for example, if a wheelchair userwould cause you great concern, please ring number 6.If it would cause you no concern, ring 0, if it wouldcause you moderate concern, ring 3; and so on.
- A person who had a heart attack a year ago- A person over the age of 50- A person whose face has been disfigured by burns- A wheelchair user- A person with epilepsy who has had two seizures inthe last year- A person who has been off sick with stress/depres-sion for 3 months in the last year9. How strongly do you agree or disagree with the fol-lowing statements? Please ring the number that comesthe closest to how you feel. So, if you agree stronglywith the statement, ring 1; if you agree, ring 2; and soon.
- People with epilepsy are as intelligent as everyoneelse.
L. McEwan et al. / Epilepsy & Behavior 11 (2007) 13–19 19
- People with epilepsy have more personality prob-lems than other people.- It is frightening for others to see someone having anepileptic seizure.- Children with epilepsy should be allowed to playwith other children.- Doctors can successfully treat epilepsy with drugs inmost cases.- A person with epilepsy can be as successful as otherpeople in their chosen career.- A person with epilepsy can lead a normal life.
10. Which of the following do you think are the main
causes of epilepsy? Please ring all that apply.
- Accidents, such as an injury to the head- A disorder of the brain- A problem with the nervous system- Mental illness- Stress or pressure- A problem arising before or at birth- Result of another illness or disease- Old age- Alcohol or drug abuse- An infection caught from other people- None of theseReferences
[1] Sheldon F. Supporting the supporters: working relatives of patientswith dementia. Age Aging 1982;11:84–188.
[2] Whittock JE. Dementia and mental handicap: emotional distress incarers. Br J Clin Psychol 1988;27:167–72.
[3] Beech L. Knowledge of epilepsy among relatives of the epilepsysufferer. Seizure 1992;1:133–5.
[4] Hoare P, Kerley S. Psychosocial adjustment of children with epilepsyand their families. Dev Med Child Neurol 1991;33:201–15.
[5] Austin JK, McBride AB, Davis HW. Parental attitude and adjust-ment to childhood epilepsy. Nurs Res 1984;33:92–6.
[6] Thompson P, Upton D. The impact of chronic epilepsy on the family.Seizure 1992;1:43–8.
[7] Anderson E, Barton R. Epilepsy a family burden? Clin PsycholForum 1990;3:157–63.
[8] Lee MMK, Lee TMC, Ng PKK, Hung ATFK, Au AML, WongVCN. Psychosocial well being of carers of people with epilepsy inHong Kong. Epilepsy Behav 2002;3:147–57.
[9] Ju SH, Chang PF, Chen YJ, et al. Parental attitude and adjustmentto childhood epilepsy. Zhongua Min Guo Xiao Er Ke Xue Huiza Zhi1990;31:103–9.
[10] Vaughn C, Leff J. The measurement of expressed emotion in thefamilies of psychiatric patients. Br J Soc Clin Psychol1976;15:157–65.
[11] Brown SW, Jadresic E. Expressed emotion in the families of youngpeople with epilepsy. Seizure 2000;9:255–8.
[12] Kendall S, Thompson D, Couldridge L. The information needsof carers of adults diagnosed with epilepsy. Seizure 2004;13:499–508.
[13] Stanhope N, Goldstein LH, Kuipers E. Expressed emotion in therelatives of people with epileptic or non-epileptic seizures. Epilepsia2003;44:1094–102.
[14] Jacoby A, Gorry J, Gamble C, Baker GA. Public knowledge, privategrief: a study of public attitudes to epilepsy in the United Kingdomand implications for stigma. Epilepsia 2004;45:1405–15.
[15] Jacoby A, Gorry J, Baker GA. Employers’ attitudes to employmentof people with epilepsy: still the same old story? Epilepsia2005;46:1978–87.
[16] Corrigan PW, River LP, Lundin RK, et al. Three strategies forchanging attributions about severe mental illness. Schizophrenia Bull2001;27:187–95.
[17] Gouvier WD, Brown LM, Prestholdt PH, et al. A survey of commonmisconceptions of epilepsy. Rehabil Psychol 1995;40:51–9.
[18] Jordon S, Knight E, Vokins A. Interpreting lay opinions on epilepsy.Unpublished clinical project, University of London UK. Cited inScambler G. Epilepsy. London: Tavistock; 1989.
[19] Harrison RM, West P. Images of grand mal. New Society1977;40:762–8.
[20] Scambler G, Hopkins A. Becoming epileptic: coming to terms withstigma. Sociol Health Illn 1986;8:26–43.
