New Zealand Community Attitudes toward People with Epilepsy

New Zealand Community Attitudes toward People with Epilepsy

Michael D. Hills and Hamish C. MacKenzie

Department of Psychology, University of Waikato, Hamilton, New Zealand

Summary: Purpose: International surveys on knowledge andattitudes toward people with epilepsy suggest that public opin-ion is improving in many countries. This study aimed to dis-cover how New Zealand compared with other countries, andhow subgroups within the New Zealand population comparedwith each other, by conducting a survey of community knowl-edge and attitudes toward epilepsy.

Methods: Telephone interviews were conducted on a randomsample of 400 persons older than 17 years, drawn from a mid-sized provincial town and its hinterland.

Results: Ninety-five percent of respondents had heard orread about epilepsy; 73% knew someone with epilepsy; and67% had seen an epileptic seizure. Somewhat less knowledge-

able were young people, the less educated, lower socioeco-nomic status (SES), and those of Maori or non-Europeanethnicity. Attitudes toward people with epilepsy were favor-able, with only 5% objecting to their child marrying a personwho sometimes had seizures. Less-positive attitudes werefound among some older people.

Conclusions: Compared with those in other Western coun-tries, New Zealanders are well informed about epilepsy, andtheir attitudes toward it are mainly positive. Continuing publiceducation about epilepsy is still necessary, especially amongthe young, the non-European, and older people. Key Words:Epilepsy—Attitudes—Awareness—Knowledge—New Zealand.

When people think of epilepsy they think of seizures.Seizures are unpredictable, apparently inexplicable, un-controllable, and appear distressing to the sufferer.Hence seizures arouse fear. The social discriminationagainst persons with epilepsy due to the fear of seizuresand the lack of knowledge about epilepsy (1) can beexacerbated by perception of epileptic seizure behavioras socially deviant (2,3). Historical ascription of seizuresto insanity, witchcraft, or supernatural forces remains abasis for contemporary stigma (4). Although periodicinternational polls (5–9) have shown an improvement inpublic attitudes toward and knowledge about epilepsy,epilepsy is still a misunderstood and stigmatizing disor-der (6).

This study examined the knowledge and attitudes ofNew Zealanders toward epilepsy and people with epi-lepsy. Questions were drawn from a longitudinal study ofAmerican attitudes carried out by Caveness and Gallup(5) at 5-year intervals from 1949 to 1979. Over the pastdecades, Caveness and Gallup found a favorable shift inpublic opinions about epilepsy. By the end of 1979, 90–95% of American respondents had knowledge about epi-lepsy. When people familiar with epilepsy were asked if

they would object to their children playing with a personwho has seizures, the proportion of those not objectingincreased from 57% in 1949 to 87% in 1979. Over thesame period, the proportion of people who thought epi-lepsy was not a form of insanity increased from 59 to92%. Similarly, when asked if people with epilepsyshould be employed like other people, favorable answersincreased from 45 to 79%. Younger, urban, better-employed, and educated members of the population ex-pressed the most favorable opinions.

Results from later international studies based on theCaveness and Gallup survey (5) varied across countries.A study of public attitudes in Italy (7) has been comparedwith the United States (5) and a similar German survey(8). Germany recorded a relatively high percentage(20%) of people who thought epilepsy was a form ofinsanity, compared with Italy (8%) and the United States1979 (3%). In Italy, 27% of respondents had never heardor read about the disease called epilepsy, in contrast to14% in Germany, 8% (9) and 5% (5) in the United States,and 3% in Denmark. All these studies found socioeco-nomic status to be an important factor in predictingknowledge of epilepsy. In a Danish survey (6), theyoungest group (aged 15–24 years) and the oldest group(older than 60 years) were the least aware of epilepsy.Otherwise the negative attitude was correlated with ed-ucational level. Of people polled in LaMartina’s (9) U.S.survey, 12% said people with epilepsy should not have

Accepted July 29, 2002.Address correspondence and reprint requests to Dr. M. Hills at De-

partment of Psychology, University of Waikato, Private Bag 3105,Hamilton, New Zealand. E-mail: [email protected]

Epilepsia, 43(12):1583–1589, 2002Blackwell Publishing, Inc.© 2002 International League Against Epilepsy

1583

children; 18% would object to their son or daughter mar-rying such a person; and 44% said most people withepilepsy should not drive vehicles. Thus there may not bea clear cultural stereotype of a person with epilepsy, buta series of overlapping negative images (9).

Although located in the South Pacific, New Zealand isa Western country with a highly literate population andan Epilepsy Association that has been promulgating edu-cation about epilepsy for >40 years. A community surveyof this kind had not previously been performed in NewZealand. However, it was expected that the level ofknowledge about epilepsy and the profile of attitudestoward those who have epilepsy would be similar tothose found in other Western countries.

We therefore report a regional survey of knowledgeabout and attitudes toward epilepsy and those who haveepilepsy, using the questions from surveys conducted inseveral other countries. This should provide an opportu-nity to compare New Zealand attitudes with those foundin international studies, information on the relation be-tween attitude and social background, and a base forlongitudinal studies of attitude change as education pro-grams continue.

METHODS

RespondentsTelephone interviews were conducted with a sample

of 400, balanced for age and gender, taken from an adultsample (older than 17 years) drawn by using a table ofrandom numbers, from the telephone book of a mid-sizedprovincial town and its hinterland (Table 1).

The regional population covered by the telephonebook was 350,000, or ∼10% of the total New Zealandpopulation, including rural, small-town, and city resi-dents (11). Most (93%) regional homes had a telephone(12). Respondents were randomly selected by categoryfrom a larger sample to ensure that distribution by age,gender, and occupation did not differ significantly fromthe 1996 census of New Zealand’s 2.67 million popula-

tion aged 18 years or older. However, there were signifi-cantly more in the “Other” ethnicity (e.g., migrants fromAustralia, England, Ireland, China) and “High SchoolLeaving Certificate only” categories than expected. Con-sistent with the New Zealand census, ethnicity was de-termined by responses to the question: “To which ethnicgroup do you belong?”

MaterialsRespondents completed a short interview (∼6–8 min)

containing questions on awareness of epilepsy (items1–3), their attitudes and behavior toward people withepilepsy (items 4–6), and knowledge about people withepilepsy (items 7–9), and a demographic section (Table 2).

Responses were reported in frequencies and percent-ages, to facilitate a comparison with previous researchreports. A “Don’t know” response was permitted, but notincluded in Table 3 for space economy. Variations indistribution by sex, age, ethnicity, occupation, and edu-cation factors were tested for significance. The researchproposal and questionnaire were approved by the Uni-versity of Waikato Psychology Department Ethics Com-mittee.

ProceduresThree interviewers (H.C.M. plus one male and one

female graduate student in psychology, trained and su-pervised by H.C.M.) conducted the interviews. By usinga standard script, interviewers of each gender inter-viewed respondents of both genders to control for pos-sible same-sex versus opposite-sex effects. Evening andweekend interview times were found in questionnairetrials to (a) increase the likelihood of respondents beinghome, (b) reduce the annoyance of calling at meal times,and (c) obtain a more balanced gender distribution. Tele-phone interviewing was preferred as it is not only fasterand cheaper, but has been shown to reduce confoundingvariable effects such as interviewer gender and experi-ence (13), as well as reducing the likelihood of positive

TABLE 1. Demographics of participants compared with New Zealand (NZ)national census (1996) data

Obtained NZ Obtained NZ

Gender Age (yr)Male 45 48 18–29 25 25Female 55 52 30–39 26 22

Ethnicity 40–49 20 19New Zealand European 77 64 50–59 11 13Maori (Indigenous persons) 10 11 60+ 18 21Other 13 24 Education

Occupation Tertiary 41 39Manager/professional 17 14 High school leaving certificate 34 24Sales/clerical/technician 21 22 No high school leaving certificate 25 37Manual 24 23Nonlabor force 38 40

Figures in percentages of the total population aged 18+ yr.

M. D. HILLS AND H. C. MACKENZIE1584

Epilepsia, Vol. 43, No. 12, 2002

bias and socially desirable responses when comparedwith face-to-face interviewing (14–17). At the start ofeach telephone call, the interviewers introduced them-selves as members of a Waikato University researchteam conducting a survey on public attitudes and knowl-edge of epilepsy. After contact was made with an adult inthe house, respondents were asked if they would givetheir opinions in a short confidential interview. In thesmall number of cases in which the respondent consentedbut was unable to complete the interview at that time, afollow-up call was made at a more convenient time. Un-answered calls or busy signals were followed up with asmany as five repeated callbacks. No respondent was spo-ken to more than twice. At the end of the interview, therespondents were thanked, and any questions were re-ferred to the first author.

RESULTS

In total, 96% of respondents had heard about epilepsy,yet only 67% had actually seen a seizure (Table 3). How-ever, more than three fourths (76%) of respondents hadknown someone with epilepsy.

The majority of respondents (96%) said epilepsy wasnot a form of insanity, and they would have no objectionto their offspring marrying (91%) or associating (97%)with people who sometimes have seizures. Although28% of respondents were either unsure of employmentopportunities or thought this depended on the job type,69% said there should be equal employment opportuni-ties for people with epilepsy.

More women than men (�2(1) � 6.75, p < 0.01) would

object to their son or daughter marrying a person withepilepsy. More men than women (�2

(1) � 4.85, p < 0.05)thought persons with epilepsy should not be employed injobs like other people.

The youngest group (younger than 29) had a higherproportion who had not heard of epilepsy (�2

(3) � 6.19,p < 0.05), who had never known anyone with epilepsy(�2

(3) � 10.15, p < 0.01), and had never seen a seizure(�2

(3) � 16.92, p < 0.001). However, they also had thegreatest proportion who would not object to their childmarrying a person with epilepsy (�2

(3) � 11.89, p <

0.01) and thought people with epilepsy should be em-ployed in jobs like others (�2

(3) � 13.36, p < 0.01).Older people (older than 60) conversely had a largerpercentage who would object to their child marrying aperson with epilepsy (�2

(3) � 10.47, p < 0.01), and whobelieved that people with epilepsy should not be em-ployed like other people (�2

(3) � 26.03, p < 0.001).More respondents with tertiary education had known

someone with epilepsy (�2(2) � 12.03, p < 0.01) or had

seen someone having a seizure (�2(2) � 13.32, p < 0.01),

compared with those with less education. However, ofthose who said they had seen a seizure, the smallestproportion were those who had achieved a high schoolleaving certificate (�2

(2) � 30.35, p < 0.001).More professionally employed respondents had seen a

seizure (�2(3) � 9.63, p < 0.01) or knew someone who

had epilepsy (�2(3) � 11.60, p < 0.001), compared with

those from other occupational groups. A greater percent-age of New Zealanders of European descent had heard orread about epilepsy (�2

(2) � 9.44, p < 0.01) comparedwith those of “Other” and “Maori” ethnicity.

The largest group (39%) of respondents consideredbrain disease/disorder to be the predominant cause ofepilepsy, and 60% believed medication to be the mostcommon treatment available for epilepsy (Table 4).

However, approximately one in three respondents(32%) did not know the cause of epilepsy, and 40% didnot know the most common treatment used.

Comparison with other countriesThe results from six other studies (three in the United

States, and one in each of Denmark, Italy, and Germany)were compared with this New Zealand study (see Table 5).

Compared with other countries, significantly moreNew Zealanders had heard of epilepsy than had Italians(7), Germans (8), or Americans (9). A greater proportionof people in New Zealand knew a person with epilepsythan in any other of the six international studies cited.More people in New Zealand had seen a person having aseizure than in the United States (9), Denmark, Italy, orGermany. There were fewer objections to having theirchildren associating with or marrying a person whosometimes has seizures when compared with all othercountries.

Although fewer New Zealanders said people with epi-lepsy should be employed in jobs like other people thandid respondents from the United States (5), Italy (7), orGermany (8), fewer also said they should not. Of theremainder, 84% said it depended on the type of job,implying that people with epilepsy should be employed,but under appropriate conditions. Only 1% of New Zea-landers considered epilepsy to be a form of insanity,which was fewer than the percentage in the United States(5), Italy, or Germany.

TABLE 2. Questions about epilepsy

1. Have you heard or read about the disease called epilepsy (fits)?2. Have you ever known anyone who has epilepsy?3. Have you ever seen anyone having a seizure (fit)?4. Would you object to any of your children in school or at play

associating with people who sometimes had seizures (fits)?5. Would you object to having a son or daughter of yours marry a

person who sometimes had seizures (fits)?6. Do you think people with epilepsy should or shouldn’t be

employed in jobs like other people?7. Do you think epilepsy is a form of insanity?8. What do you think is the cause of epilepsy?9. What is the most common treatment available for epilepsy?

NEW ZEALAND ATTITUDES TO EPILEPSY 1585


Finally, responses to questions on the cause and treat-ment of epilepsy made by New Zealanders were com-pared with those from Denmark, the United States, andItaly (Table 4).

The proportion of New Zealanders who said that theydid not know the cause of epilepsy did not differ signifi-cantly from that in Denmark, but was significantlyfewer than from the United States (9) (�2

(1) � 33.51,

TABLE 4. Knowledge of cause and treatment of epilepsy across different countries (%)

ParameterNew

ZealandGermany

(1996)Denmark

(1992)U.S.A.(1987)

Italy(1985)

No. 400 2,491 1,038 1,002 1,043Do not know cause of epilepsy

% 32 30 27 49 16n 128 747 280 491 167

Know probable cause of epilepsy% 68 70 73 51 84n 272 1,744 758 511 876�2 3.59 33.51a 45.44a

Knowledge of causeBrain disease/disorder (%) 39 29 31 19 10n 157 722 322 190 104Nervous system disorder/disease (%) 8 33 — 12 28n 33 822 — 120 292Heredity (%) 7 25 37 11 11n 27 623 384 110 115Birth defects (%) 2 12 27 2 10n 9 299 280 20 104�2 152.49a 292.50a 42.71a 218.35a

Knowledge of treatmentMedication (%) 60 — — 82 —n 240 — — 822 —Other + Don’t know (%) 40 — — 18 —n 160 — — 180 —�2 75.57a

Multiple answers possible; “other” responses omitted.(—), question(s) not asked.a p < 0.0001.

TABLE 3. Responses to questions on familiarity and attitudes toward epilepsy (%)

Category n

Q1 Q2 Q3 Q4 Q5 Q6 Q7

Yes%

No%

Yes%

No%

Yes%

No%

Yes%

No%

Yes%

No%

Yes%

No%

Yes%

No%

GenderMale 180 96 4 67 33 73 27 2 97 2 94 63 4 1 96Female 220 95 5 67 33 74 26 2 95 8 88 74 1 1 97

Age (yr)18–29 98 90 10 62 38 50 50 2 96 2 97 78 2 0 9630–39 107 96 4 72 27 64 36 2 95 3 93 72 4 3 9540–49 81 99 1 74 26 75 25 1 99 0 94 63 5 0 9950–59 44 100 0 89 11 86 14 0 100 11 89 64 2 5 95>60 70 94 6 80 20 74 26 3 94 16 76 61 39 0 96

EducationTertiary 165 97 3 82 18 75 25 2 97 4 94 64 3 0 99High school leaving cert. 136 93 7 71 29 55 45 1 97 3 90 76 2 3 95No leaving cert. 99 95 5 63 37 70 30 3 95 10 87 67 4 1 94

OccupationProfessional 69 97 3 87 13 83 17 2 97 1 93 58 3 4 94Clerk/technician/sales 87 99 1 79 21 71 29 1 95 7 90 75 2 0 99Manual 97 96 4 65 34 64 36 1 97 3 94 64 6 1 96Nonlabor force 147 92 8 69 31 59 41 3 96 7 88 73 1 1 96

EthnicityNZ European 308 97 3 74 26 68 32 2 98 5 92 65 2 1 97Maori 40 90 10 73 27 65 35 5 95 5 93 70 5 0 95Other 52 87 13 71 29 65 35 0 88 8 83 71 8 4 92Total 400 95 5 73 27 67 33 2 97 5 91 69 3 1 96

Discrepancies between 100 and totals of shown pairs of figures represent “Don’t Know” responses.



p < 0.001) and more than those from Italy (�2(1) �

45.44, p < 0.001). However, the proportion who said,correctly, that it resulted from brain disease or disorderwas greater in New Zealand than in Germany (�2

(3) �152.49, p < 0.001), Denmark (�2

(3) � 292.50, p <0.001), the United States (9) (�2

(3) � 42.71, p < 0.001),or Italy (�2

(3) � 218.35, p < 0.001). More Respondentsin New Zealand, Germany, and Denmark cited brain dis-ease/disorder as a cause than in the United States (9) orItaly. In Italy the most common response was that epi-lepsy is a nervous disorder, although substantial minori-ties attributed epilepsy either to heredity or to birthdefects. (Note that Table 4 shows only comparable fre-quencies and percentages.) Compared with New Zea-

landers, a significantly greater proportion (�2(1) � 75.57,

p < 0.001) of those in the United States (9) study correctlythought that medication was the most common form ofepilepsy treatment.

DISCUSSION

Within New ZealandThis study aimed to assess New Zealanders’ knowl-

edge about epilepsy and their attitudes toward peoplewho have epilepsy. It also aimed to compare subgroupswithin the New Zealand population and overall NewZealand results with those from other countries. Al-though taken from only one region, the sample matched

TABLE 5. Comparison of New Zealand responses with those from other countries

ParameterGermany

(1996)

U.S.A.Chicago(1995)

Denmark(1992)

U.S.A(1987)

U.S.A.(1979)

Italy(1985)

NewZealand(1997)

Completed interviews (n) 2,491 292 1,038 1,002 1,539 1,043 400Awareness of epilepsy

Yes (%) 86 — 97 92 95 73 95n 2,142 — 1,007 922 1,462 761 380No (%) 14 — 3 8 5 27 5n 349 — 31 80 77 282 20�2 25.13a 3.42 3.84b 84.85a

Know a person with epilepsyYes (%) 41 59 60 56 63 61 73n 1,021 172 623 561 970 636 292No (%) 49 41 40 44 32 39 27n 1,221 120 415 441 492 407 108�2 102.39a 15.18a 21.02a 34.73a 6.36b 18.21a

Seen a person having a seizureYes (%) 38 56 50 — 59 52 67n 947 164 519 — 908 542 268No (%) 52 44 50 — 36 48 33n 1,295 128 519 — 554 501 132�2 83.78a 8.45c 33.68a 3.23 26.54a

Children associating with a person who has seizuresObjections (%) 15 — 7 — 6 11 2n 374 — 73 — 6 115 8No objections (%) 84 — 91 — 89 80 97n 2,092 — 945 — 1,370 834 388�2 50.98a 14.01a 9.85c 34.29a

Children marrying a person who has seizuresObjections (%) 21 — — — 18 — 5n 523 — — — 277 — 20No objections (%) 37 — — — 68 — 91n 922 — — — 1,047 — 364�2 139.54a 51.16a

Employment of persons with epilepsyShould (%) 89 — 89 — 79 70 69n 2,217 — 924 — 1,216 730 276Should not (%) 11 — 7 — 9 15 3n 274 — 73 — 139 156 12�2 13.06a 3.6 10.56c 32.02a

Epilepsy as a form of insanityYes (%) 20 — — — 3 8 1n 498 — — — 46 83 4No (%) 79 — — — 92 79 96n 1,968 — — — 1,416 824 384�2 84.94a 5.22b 28.59a

a p < 0.0001. (—), question(s) not asked.b p < 0.01.c p < 0.001.



the overall New Zealand population for age and gender,but included fewer less well educated, unemployedpeople, and more of migrant origin than was expected.Therefore findings can be taken as being moderately rep-resentative of the New Zealand population as a whole.

The majority of New Zealanders were aware of epi-lepsy and expressed positive attitudes toward peoplewith epilepsy. Although some women were concernedabout marriage of their offspring, and some men aboutemployment, the great majority in both cases were posi-tive. However, the few who were unaware tended to beyounger rather than older. Targeting information to theyounger population (aged between 17 and 30 years), whowere less likely to have knowledge and experience ofepilepsy, would be valuable. Because this group ex-pressed the most positive attitudes, they are likely to bethe more receptive audience to education efforts. Al-though more of the older respondents were aware ofepilepsy, a larger minority of them expressed less-positive attitudes toward people with epilepsy. Theirscepticism regarding marriage and employment ofpeople with epilepsy reflects overseas findings (6,8) andmay have been acquired when both public knowledgeand medical treatment of epilepsy were less available.

New Zealanders were very aware of epilepsy, and ahigh proportion of them had known a person with epi-lepsy or seen a seizure. This probably results from anumber of factors, such as a high education and literacylevel, as well as the intensive education campaign con-ducted since 1960 by the Epilepsy Association of NewZealand. It may also reflect the government policy ofdeinstitutionalization of people with disabilities followedin New Zealand over the past two decades. Moreover,there are no epilepsy institutions in New Zealand, andpeople with epilepsy live in the community. Conse-quently, contact with epilepsy by members of the generalpublic is relatively frequent. In future, education pro-grams could be targeted at those of a lower socioeco-nomic status, Maori citizens, and the disproportionatenumber of immigrants who were unaware of epilepsy.

More of those with tertiary education or in a profes-sional occupation were aware of epilepsy. However,these groups were less likely to believe that a person withepilepsy should be employed like others, saying that theirjob needs may differ from those of other employees.

International comparisonsA purpose of this article is to enable international

comparison, so questions and response categories weresimilar to those used in previous international surveys(1,5–9). The questions used are basic, measuring socialattitudes rather than inner prejudice, which may be con-cealed. It could be claimed that they encourage sociallydesirable responses, particularly in a face-to-face inter-view.

Most other surveys used personal interviews ratherthan the telephone survey used in our study and that ofLampman (1). Nonetheless, the questions were not emo-tive, and as the anonymity of a telephone call encouragescandidness of response, telephone interviews are lesslikely to elicit socially desirable responses than are face-to-face interviews (13,14,16). Moreover, socially desir-able responses by definition reflect at least the overtsocially acceptable attitude, and so are a worthwhilemeasure of social attitudes in themselves.

Compared with persons of other countries, New Zea-landers were very aware of epilepsy, and a high propor-tion of them reported having had contact with it.Whereas more Italians said they knew the cause of epi-lepsy, New Zealanders were more likely to be correct inidentifying it as a brain disease or disorder than wererespondents from other countries. However, a greaterproportion of Americans (9) knew that medication is themost common form of treatment. Respondents fromother countries were less well informed.

New Zealand attitudes also were positive, althougholder people reflected those in other countries by beingless so. Nonetheless, fewer New Zealanders overall ob-jected to having their children associate with or marry aperson with epilepsy than did those in any other country.People with epilepsy were not considered insane, andNew Zealanders thought they should be employed, pro-vided that work conditions were appropriate. Whetherthese attitudinal differences are the result of the publiceducation campaigns of the New Zealand Epilepsy As-sociation, history, culture, or simply the passage of timeis unclear and would be useful topics for further research.Moreover, further relevant responses were obtained to amore detailed and sophisticated questionnaire and will bereported on later.

CONCLUSIONS

Positive attitudes, knowledge, and understanding ofepilepsy and people who have it are well promoted andaccepted among the New Zealand population, comparedwith those of other Western countries. Attitude and edu-cation correlated positively. The Epilepsy Association ofNew Zealand should therefore continue their programsof education and their delivery through community careto ensure that public knowledge and attitudes remainsatisfactory. Moreover, further education on both thecause and the treatment of epilepsy is necessary with theyoung, the Maori, people not in the labor force, andmigrants, and attitude change is still necessary amongsome older people. Such efforts are essential to dispel themisinformation and fear that still exist around epilepsywithin some population groups. Finally, the effect ofpublic attitudes on the quality of life of people withepilepsy in New Zealand, as in other countries, is animportant area for further research.



Acknowledgment: This survey was supported by fundingfrom the Health Research Council of New Zealand and re-search grants from the New Zealand Neurological Foundationand the University of Waikato.

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New Zealand Community Attitudes toward People with Epilepsy