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Keywords:

  • Epilepsy;
  • Employment;
  • Attitudes;
  • Stigma;
  • Discrimination

Abstract

  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES

Summary: Purpose: One area of life quality known to be compromised by having epilepsy is employment, and one factor contributing to the employment problems of people with epilepsy (PWE) is employer attitudes. Much research on this topic is now outdated and given the changing legal, medical, and social contexts in which PWE live, we therefore reexamined employer attitudes in the united Kingdom.

Method: A mail survey of a random sample of U.K. companies selected to be representative of the 14 U.K. economic regions and proportional to the number of employees.

Findings: The overall response rate was 41% (n = 204). Twenty-six percent of respondents reported having experience of employing PWE. Sixteen percent considered that there were no jobs in their company suitable for PWE; 21% thought employing PWE would be “a major issue.” Employers were uniformly of the view that PWE, even when in remission, should disclose their condition to a prospective employer. Seizure severity, frequency, and controllability were all considered important features of epilepsy in the context of employment. Epilepsy created high concern to around half of employers, including the likelihood of it being linked to a work-related accident. Employers were willing to make accommodations for PWE, in particular job sharing, temporary reassignment of duties, and flexible working hours. Attitudes to employment of PWE were influenced by company size and type and previous experience of doing so.

Conclusions: We conclude that it is still the same old story for employers' attitudes toward PWE, though happily for PWE, with some room for optimism.


BACKGROUND

  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES

 One area of life quality known to be compromised by having epilepsy is employment. People with epilepsy (PWE) have been shown to be up to twice as likely as people without it to be at risk of unemployment (1–3); and as being also subject to underemployment, relative to the level of their skills and qualifications (1,2,4,5); with related impacts for their financial status (3,6) and psychological well-being (7). Factors contributing to the likelihood of under- and unemployment in PWE are both internal and external (8). In the former category, a range of clinical factors have been demonstrated as predictive of employment status, including seizure frequency and type (5,9–12), age of onset of epilepsy and duration (5), and the adverse cognitive effects of antiepileptic drugs (13,14); the effects of these clinical factors may be further compounded by internal psychological factors, for example, reduced self-esteem and achievement expectations. External mechanisms, in the form of enacted stigma and discrimination, which may be either formal or informal, overt or covert, intentional or unintentional (15), also contribute to the compromised employment position of PWE; and their effects may be felt particularly hard in areas or times of high unemployment (2,11). For many PWE, employment is the major quality of life issue facing them (3,16,17).

In an article entitled “The Employable Epileptic,” appearing in the Canadian Occupational Health Bulletin in 1967 (18), the real root of the problem of employability of PWE was proposed as “lack of knowledge about the nature of epilepsy and the effect of recent medical advances” among employers, coupled with “fear.” Thirty-five years on, this message was reiterated in a recent academic journal editorial (19), where its author again maintained that the major reason for the employment difficulties of PWE was “the barriers of attitude and fear.” That the message bears repetition is supported by evidence from the United States that the level of unemployment for PWE living there has held firm over a 20-year period running between these two publications (20). This is despite marked advances in the clinical management of epilepsy and the introduction of legislation for social inclusion of people living with disabilities, which extends to those with epilepsy. Begley et al. (20) showed that 85% of the annual cost of epilepsy in the United States was attributable to lost and reduced earnings and home production losses. Likewise in the United Kingdom, under- and unemployment has been shown to contribute very significantly to the economic burdens associated with epilepsy (2,21). The extent to which the employment problems of PWE are attributable to what Espir (22) described as “medieval misconceptions” on the part of employers and coworkers, compared to biomedical factors, is therefore still of considerable relevance.

Surveys of the attitudes of others toward PWE generally demonstrate a clear improvement over time, with increasingly positive views expressed and an apparent reduction in epilepsy-related stigma (23). This holds true both for surveys of general populations (24–29) and for surveys of specific subgroups (30,31), including coworkers and employers. With regard to the latter group specifically, the series of mail surveys conducted by Hicks and Hicks (30,32,33) at 10 yearly intervals from 1956 to 1986, is generally cited as providing evidence of significant change in attitudes of major employers in the United States. For example, between 1956 and 1986, the percentages of employers reporting that there were jobs in their organization fillable by PWE rose from 79% to 100% and that they knowingly employed PWE rose from 21% to 95%. This relatively positive picture is challenged, however, by other work in the U.S. and U.K. contemporaneous with the final study in the Hicks and Hicks series. Gade and Toutges (34) surveyed attitudes among 112 rural community employers in the United States, of whom only two-thirds had jobs in their establishments that they considered PWE could do and only 45% had knowingly hired PWE. In a survey in the United Kingdom (8,35), 58% of employers interviewed in one U.K. city reported having jobs suitable for PWE but this compared to an estimated 80% of jobs suitable for people with a range of other conditions of ill health, including chronic bronchitis, heart disease, and diabetes. In this U.K. survey, important misconceptions held by employers—which undoubtedly helped to account for this discrepancy—were, for example, that a single seizure equates to having epilepsy, that relatively few PWE will achieve good seizure control, that even PWE holding a valid driving licence should not be allowed to work with heavy machinery, and that insurance companies will increase insurance policy rates if PWE are employed. In all three studies, safety concerns in relation to PWE were paramount, acting as “a latent deterrent” (34) to their employment.

Documentation of the frequency and extent of misconceptions and negative attitudes about epilepsy has led to public educational efforts, including directed at employers. The most cited in this latter category is the work of Sands and Zalkind (36) who examined the effects of a high saturation campaign (involving the mass media, community organizations, and special mailings) among employers in one U.S. city, using an experimental design. Regrettably, the authors found no differences between pre- and postcampaign employer attitudes in the intervention group. Further confirmation of what they describe as “the reality of employer resistance” is provided by Gade and Toutges (34), in whose study only 7% of employers indicated that access to new information about epilepsy would foster more favorable attitudes. Since these studies were done, however, epilepsy activists have developed an increasingly political profile (37) and the position of people with the condition, along with that of others with disabilities, has been addressed formally in a number of countries through the legislative process. In the United States, the Americans with Disabilities Act (ADA) 1990 and in Australia the Disability Discrimination Act (DDA) 1992 are now in place. Likewise, in the United Kingdom, their equivalent, the 1995 DDA aims to provide protection from discrimination across a number of spheres, including employment, though Delaney (38) has argued that with regard to PWE, there are some major gaps in its provisions.

Briefly, the U.K. DDA 1995, like its U.S. and Australian counterparts, makes it unlawful for an employer to discriminate against a person with a disability on the grounds of their disability, unless it can be justified; and obliges employers to make reasonable adjustments where a person with a disability is put at significant disadvantage compared to someone with no disability. The main employment provisions of the U.K. Act are laid out in a Code of Practice which covers: what constitutes employment discrimination versus justified treatment; the employers' duty of “reasonable adjustment”; and issues of job recruitment and selection, workplace induction procedures, training, promotion and transfer, occupational pension schemes and insurance, staff retention and termination, and victimization and harassment. The principle of reasonable adjustment applies both to the physical features of work premises and to any work arrangements which would cause “substantial disadvantage”; and so could include, for example, allocation of some of a disabled person's duties to others, alteration of their place of work or working hours, allowing absence during working hours for rehabilitation, assessment or treatment, or acquiring or modifying workplace equipment. With regard to recruitment and selection processes, the Code of Practice clarifies that job specifications should not contain “unnecessary or marginal requirements” or blanket exclusions and that any health requirements must be fully justified. Employers can, under the Code of Practice, include a question on job application forms asking whether the applicant is disabled and can legitimately seek information about the effects of the disability, for example, in order to decide what workplace adjustments might need to be made. They can also ask a disabled person to have a medical examination, though not without justification if other nondisabled candidates are not required to have one. Initially, the provisions of the U.K. DDA did not apply to small businesses, defined as ones with fewer than 20 employees but, from 2004, extended to cover all businesses (accounting for an additional 1.1 million employers and 7 million jobs). The employment provisions of the Act do not apply to jobs with “unusually demanding all-round requirements for fitness and stamina,” including the armed forces, the police, prison, and the fire-fighting services. Under the Act, epilepsy is considered a disability, even when seizures are fully controlled by medication.

In the United States, Roessler and Sumner (39) investigated employers' attitudes to employees with chronic illnesses, including epilepsy, in response to the ADA 1990 and reported that the act had influenced businesses in several ways favorable to accommodating people with disability; and that, furthermore, employers apparently viewed such employees as both valuable and well qualified. Somewhat worryingly for PWE, epilepsy was one of the conditions with which the employers surveyed reported least familiarity. In light of the age of much U.K.-based research on this topic and the changing legal, medical, and social contexts, it seemed worthwhile also to reexamine employer attitudes to epilepsy in the United Kingdom. The opportunity to do so presented itself when over a 1-year period 2001–2002, we conducted a study of public attitudes to epilepsy in the United Kingdom. The main element of our work was a survey of members of the general public, incorporated into the U.K. National Omnibus Survey (29). However, we also conducted parallel surveys with carers of PWE, identified through a U.K.-wide patient support organization1 (Baker et al., unpublished data), and with employers across the United Kingdom. In this article, we report findings from our employers' survey.

METHODS

  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES

We conducted a postal survey of a random sample of 560 U.K. companies. Companies were identified using a marketing database which, at the time of data collection in 2002, held records for almost 2 million companies operating in the United Kingdom. Companies were selected to be representative of the 14 U.K. economic regions,2 and proportional to the number of employees (Table 1). This sampling strategy was used because at the time the research was undertaken small businesses, as previously defined, were exempt from the employment provisions of the U.K. DDA. Employee counts were available for 1,179,752 companies on the database, which therefore formed the sampling frame for our selection.

Table 1. Companies selected by employee size
No. of employeesNo. of companies sampled per regionNo. of regions sampled fromTotal sample for each employee band
1–192014280
20–49 514 70
50–99 514 70
100–499 514 70
500 and over 514 70
Total sample size 560

Following a review of the relevant literature, a question set was developed and refined in consultation with disability experts from the U.K. Office of National Statistics and Epilepsy Action, the largest patient organization for PWE in the United Kingdom, and piloted in a random sample of 84 employers. Although the response to the pilot was low (40%, following a single mailed reminder), returned questionnaires were generally well completed and no obvious problems emerged with regard to questionnaire form and content. In order to maximize responses at the main data collection stage, we decided to use two mailed reminders (at 3 and 5 weeks after the initial mail-out), followed by a further telephone contact 3 weeks after the second mailed reminder. Since the same questionnaire was used at pilot and main data collection stages, the data were amalgamated for purposes of the analysis presented below.

FINDINGS

  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES

The overall response rate to our survey was 41% (n = 204).3 Just under half (46%) of responses came from small companies (<20 employees4), responses were fairly evenly distributed across the 14 economic regions. Fifty-nine percent of the individuals who completed the questionnaire on their company's behalf described themselves as company director or chief executive, 18% as human resources/personnel manager or staff member, and 23% as occupying other positions within the company (e.g., financial director and personal assistant). Based on their descriptions of the nature of company activity, we classified the companies concerned as manufacturing (39%), retail (23%), and public service (38%).

In response to a series of questions about company recruitment procedures in relation to health and disability issues, 43% reported that the health and functional requirements of a job were specified as part of any job description, 52% that job application forms included questions relating to health and disability, 43% that health declaration forms were inspected only after a potential candidate was short-listed for interview, 37% that health declaration forms were inspected only by those qualified to do so, and 31% that medical examination of a candidate would take place only following a conditional job offer.5,6 Twenty-six percent (53/204) of respondents in this survey reported having had experience of knowingly employing PWE in their company. With regard to the number of positions within the company that could be filled by a person with epilepsy, 16% considered none could be, over half (56%) that under a third could be, and 13% that all could be. Just over a quarter of respondents (27%) were of the view that a prospective employee's epilepsy would “not be an issue at all” when being considered for a position for which they were otherwise qualified, 52% thought it would be “something of an issue,” and 21% thought it would be “a major issue.” The 146 respondents describing epilepsy as something of/a major issue were asked to comment on why this would be the case. Their responses were analyzed thematically and are presented in Table 3.

Table 3. Reasons why a potential employee's epilepsy would be “something of” or “a major” issue
ThemeExample quotes
Safety issues (cited by 62%)“We would need to carry out a risk assessment: some jobs involve lone working, some jobs require driving large plant and equipment, some jobs require working at heights, some require working close to molten metal and other dangerous substances.” (HR Manager, steel manufacturer, PWE “something of an issue”)“When using scissors and cutting hair, I would be concerned for the safety of the client and the employee.” (Owner, hairdressing business, PWE “something of an issue”)“Exposure to moving machinery, fork lift trucks and electrical equipment.” (HR Director, telecoms equipment manufacture, PWE “a major issue”)
Clinical aspects of epilepsy (cited by 11%)“It would be necessary to explore how well controlled the epilepsy is, and the applicant's doctor's view of their suitability for employment.” (Assistant director, local authority, PWE “something of an issue”)“It depends on the type of seizure.” (Company secretary, electrical installations firm, PWE “something of an issue”)
Lack of knowledge/experience (cited by 8%)“We have no experience of employing a person with epilepsy.” (Owner, car repair company, PWE “something of an issue”)
Potential effects on business (cited by 8%)“We handle many professional photographers' negatives, which if damaged, cannot be replaced.” (Managing director, digital and photographic imaging company, PWE “a major issue”)“We are in the hotel trade and in constant touch with the public.” (Hotel manager, PWE “a major issue”)“If an employee had a seizure during a sale, it would cause some disruption and our stock might be at risk while they were attended to.” (Owner, jewelers/watch repairers, PWE “a major risk”)

Unsurprisingly, given these comments, 99% of respondents were of the view that a person with active epilepsy (defined as currently having seizures, even if only occasionally) should disclose their condition to a prospective employer. Rather more surprisingly, 76% were of the view that a person with epilepsy should also disclose their condition even when they had been seizure free for 2 years. Employers' views about the timing of such disclosure are shown in Table 2; they showed a clear preference for PWE to reveal their condition earlier rather than later in the recruitment process, regardless of their epilepsy status.

Table 2. Stage of recruitment at which PWE should disclose
Stage of recruitment processEpilepsy is active (%)Epilepsy is in remission (%)
  1. Analysis is based on 192 responses to the question about active epilepsy and 158 responses to the question about epilepsy in remission.

On initial application form4142
At interview4542
Following a conditional job offer1115
After accepting the job 3 1

Employers were asked to rate the importance of a number of clinical aspects of epilepsy in judging the suitability or otherwise of a potential employee. All aspects were endorsed as extremely or very important by high percentages of respondents (Fig. 1), the most often thus endorsed being seizure severity, frequency, and controllability, together with whether or not the PWE had any warning of impending seizures.

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Figure 1. Importance of clinical features of epilepsy for employment.

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As for the parallel survey of the U.K. general public (29), employers were asked to consider a series of six different conditions, including one neutral one (age over 50 years) and epilepsy, which might apply to a potential employee. They were asked to rate on a 6-point Likert scale (no concern though to great concern): first, the level of concern employing such a person would generate for them; second, the likelihood of work absenteeism in the affected person; and third, the likelihood of the affected person experiencing a work-related accident. Epilepsy emerged as causing a high level of concern to just under half (44%) of employers, ranking third in this respect, after stress/depression and being a wheelchair user (Fig. 2). Epilepsy was ranked as the third most likely condition, after stress/depression and heart attack, to lead to work absenteeism; and as the second most likely, after stress/depression, to be linked to a work-related accident (Fig. 2).

image

Figure 2. Employer's concerns about employing persons with health conditions.

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Some sources of concern about employing PWE were (percentages endorsing given in brackets) that it could make other employees uncomfortable if they witnessed a seizure (73%), increase employer liability insurance costs (42%), disrupt work flow (38%), reduce other employees' concentration levels (22%), undermine company efficiency (14%), and cause other employees to refuse job assignments (12%).

Unsurprisingly, in light of the above findings, only 2% of respondents believed that PWE had “no more difficulty” than others in securing employment. A further 13% thought PWE had slightly more, 36% somewhat more, 36% considerably more, and 13% vastly more difficulty. When asked what accommodations their company would be prepared to make for an employee with epilepsy, 78% responded that they would consider job sharing, 76% a temporary reassignment of duties to other colleagues in order to accommodate a sickness absence, 72% flexible working hours, 59% additional rest breaks, 54% physical modifications, 45% provision of transport to attend meetings or see clients, 29% home working, and 22% provision of transport to get to work.7

Since under U.K. legislation current at the time of the survey, small businesses were exempted from the provisions of the DDA, we predicted that company size would be an important influence on employers' expressed attitudes and actions with regard to employment of PWE. Unsurprisingly, a higher proportion of jobs in larger businesses were regarded as suitable for PWE than in small ones (9% and 23%, respectively, reported none of the positions in their company as suitable; 37% and 32%, respectively, reported at least half of positions as suitable; χ2= 15.86, df = 6, p < 0.05), and a higher proportion of larger business employers reported having previously employed PWE (44% cf. 9%, χ2= 25.69, df = 1, p < 0.01). With regard to recruitment procedures, employers in small businesses were less likely than larger ones to include questions about health and disability on job application forms (57% cf. 74%, χ2= 4.16, df = 1, p < 0.05), have qualified staff interpret health declaration forms (33% cf. 70%, χ2= 14.47, df = 1, p < 0.01), and carry out a medical examination after a conditional job offer (29% cf. 66%, χ2= 13.37, df = 1, p < 0.01). There was no statistically significant difference by company size in the likelihood of health and functional requirements being specified in the job description (65% cf. 57%); nor of health declaration forms being inspected prior to candidate short-listing (45% cf. 42%). With regard to the issue of disclosure, the percentages in each group taking the view that both persons with active epilepsy and persons with epilepsy in remission should disclose their condition to potential employers were similar, and the preference in both groups was for early disclosure. However, whereas there was no significant difference by company size in views about the appropriate stage of disclosure where people with active epilepsy were concerned, larger companies were more likely to take the view that disclosure only after receiving a conditional job offer would be appropriate for PWE in remission (27% cf. 7%, χ2= 10.53, df = 3, p < 0.05).

Company size did not influence the likelihood of respondents expressing high concern about employing PWE, nor their views about the likelihood of PWE experiencing higher rates of absenteeism or accidents (see Figs. 3–5). In contrast, employers from small businesses were more likely to express concern about employing a wheelchair user (64% cf. 32% expressed high concern about doing so, z =−4.60, p < 0.01) and to take the view that wheelchair users were more likely to have a work-related accident (19% cf. 9%, z =−2.43, p < 0.05). There were no differences by company size for any of the other conditions cited.

image

Figure 3. Percents reporting “high concern” over employing persons with health conditions, by company size.

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image

Figure 4. Percents reporting high likelihood of condition-related absenteeism in persons with health conditions, by company size.

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Figure 5. Percents reporting high likelihood of work-related accidents in persons with health conditions, by company size.

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With regard to possible workplace accommodations, employers in small businesses were more likely to report themselves willing to provide transport to/from work (31% cf. 16%, χ2= 4.71, df = 1, p < 0.05), and, conversely, were less likely to report willingness to provide transport during working hours (32% cf. 54%, χ2= 5.88, df = 1, p < 0.05). There were no other statistically significant differences for workplace accommodations.

Company type influenced: the proportion of jobs reported as suitable for PWE (with public service employers reporting a greater proportion of jobs as suitable, compared to those in the retail and manufacturing sectors; χ2= 21.32, df = 12, p < 0.05); some aspects of the recruitment process (employers in the retail industry less likely than those in the manufacturing and public service sectors to have qualified staff interpret health declaration forms, χ2= 6.40, df = 2, p < 0.05; and less likely to carry out medical exams after a conditional job offer, χ2= 13.62, df = 2, p < 0.01); apparent willingness to make workplace accommodations for PWE (public service sector employers more likely to allow flexible working hours, χ2= 8.99, df = 2, p < 0.05); and likelihood of expressing high concern over employing PWE (employers in manufacturing businesses more likely to express high concern over epilepsy, χ2= 6.44, df = 2, p < 0.05).

Finally, previous experience of employing PWE was related to health declaration forms being examined only by those qualified to so (more likely where previous experience, χ2= 5.40, df = 1, p < 0.05); medical examinations being carried out only after a job offer (more likely where previous experience, χ2= 9.49, df = 1, p < 0.01); the proportion of jobs deemed suitable for PWE (greater proportion where previous experience; χ2= 17.84, df = 6, p < 0.01); willingness to make workplace accommodations (more likely where previous experience: physical modifications, χ2= 5.50, df = 1, p < 0.05; flexible working hours, χ2= 5.71, df = 1, p < 0.05; temporary reassignment of duties to other colleagues, χ2= 3.81, df = 1, p < 0.05); belief that insurance costs could increase (less likely to agree where previous experience; χ2= 10.58, df = 1, p < 0.01); and belief that PWE would have higher levels of work absenteeism (less likely to agree where previous experience; z =−2.45, p < 0.05).

DISCUSSION

  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES

Gloag (40) identified three separate aspects of epilepsy as potential contributors to the employment disadvantage of PWE: the hazards posed by some jobs, either to PWE themselves or to others; the behavioral and mental abnormalities sometimes associated with epilepsy; and the anxiety and prejudice epilepsy generates among employers and coworkers. Potential hazards of having epilepsy are, in the main, dealt with by statute: in the United Kingdom, PWE are barred completely by law from entering certain jobs and careers; and their right of entry to others is strictly controlled by health regulations (41). Associated behavioral and mental abnormalities in epilepsy are clearly a matter for concern; but a considerable body of research has shown the work capacity and performance of PWE uncomplicated by such problems—the vast majority of PWE—is similar to that of the nonepileptic population (42–48). This means that for many PWE, employer and coworker attitudes may be the most critical determinant of their employment status and progression. Reviewing the then available literature, Gloag (40) concluded that the approach of employers was “often unnecessarily restrictive and insensitive,” and it appears that there is still some support for her argument.

Compared to previous studies, the percentage of employers in our survey having knowingly employed PWE was low, only 26%. If knowing employment of PWE represents a measure of enlightenment, PWE may be right in being anxious about revealing their condition. Rather more optimistically, the great majority of employers (84%, a larger proportion than in earlier surveys) reported that there were jobs in their companies suitable for PWE. The caveat here is that despite encouragements from the epilepsy organizations that the vast majority of jobs are suitable for PWE (49,50), the proportion of jobs judged as suitable appeared to be low. In keeping with both these findings, only a quarter of respondents thought that epilepsy in a prospective employer would not be an issue, and almost as many thought it would be a major one. As in previous research, employers' fears about safety continued to represent “a latent deterrent” to employability, this being the most often cited reason why employing PWE would be an issue. Together with stress/depression, epilepsy was the condition most commonly linked to the likelihood of work-related accidents. It appears that “medieval misconceptions” about this particular aspect of epilepsy have still to be fully discharged. In the meantime, evidence from the U.K. Health and Safety Executive (51) suggests that employers continue to demonstrate ignorance about the real safety risks of different disabilities and conditions of ill health, including epilepsy, and to use health and safety requirements as an excuse for denying employment opportunities to those thus affected.

Another misconception among our employers was the possibility of increased insurance costs, raised by 42% of those responding (a figure almost identical to that reported by John and McLellan (35) in 1988). Yet Carter (52) notes that in the United Kingdom, “most insurance companies cover any disabled worker … on the same terms as the able-bodied, provided the employer has taken the disability into account when allocating work”; and the U.K. Employment Service endorses this (38). Thus it appears that the issue of insurance represents an unjustified source of difficulty for PWE in this context, just as it does in the context of personal insurability (53).

Epilepsy is a hidden disability, meaning that it is virtually impossible to know exactly how many PWE whose seizures are well controlled are successfully holding down jobs without ever having revealed their condition to employers or coworkers. Disclosure is a potentially risky course of action (54) and questions about whether or not to disclose are among the most common employment-related concerns of PWE (55). The U.K. DDA encourages disclosure, but from the point of view of PWE, any preemployment questions are threatening (56). Advice from the epilepsy support organizations is that PWE should approach the issue of disclosure carefully and thoughtfully (41,57), the decision resting ultimately with the individual, depending on the particular set of circumstances. Bishop and Allen (55) report that none of the Epilepsy Foundation affiliates they surveyed advised PWE to declare their condition either on application or at initial interview, and more than half recommended disclosure only after being hired. In contrast, respondents in our survey took the view that any prospective employee with active epilepsy should disclose their condition, preferably very early in the recruitment process; and the vast majority took the same position with regard to prospective employees with well-controlled seizures. Thus, there is a clear mismatch between the position of employers, who may see nondisclosure as a breach of trust (38,58) and PWE, many of who opt not to disclose out of fear of enacted stigma (12,59,60). While this may represent the line of least resistance for PWE, it does, as has been pointed out (61), have the disadvantage that those with whom they interact in the workplace may continue to base their beliefs about epilepsy and negative attitudes on either erroneous or no real experience, relying instead on persistent, outdated stereotypes. It may also have the effect of further isolating PWE (38) and leaving them subject to what Link et al. (62) have described as the “self-fulfilling prophecy” of stigma.

Previous research has highlighted that in the matter of employment discrimination, prospective employees with disabilities are preferred where their disability is seen as not one to which personal blame is attached, and is physical rather than mental, invisible rather than visible, and nonneurological rather than neurological (63). Epilepsy occupies a equivocal position in relation to all but the last of these criteria, which may have some bearing on our findings in this and its companion survey of the U.K. general public (29). In that, epilepsy in a coworker was ranked second only to stress or depression, in terms of the degree of concern it would generate compared to other health conditions. A similar scenario emerged for employers: epilepsy was rated third, with stress/depression causing the greatest level of concern, followed by wheelchair use (the latter most likely because of the need for employers to make potentially expensive physical adaptations to their premises). Our findings tend to support those of others (35,54,64,65) about the generally negative perceptions of epilepsy and the anxiety it generates in a work context, relative to other chronic health conditions. Interestingly, however, in the studies by Doyle (65) and Harden et al. (54) more anxiety was manifested around, respectively, employment of and interactions with an employee with epilepsy than one with a mental health problem; whereas in our own, the converse was true. This difference may be an artifact of question wording: for example, in our employer survey, as in our survey of the general public, the question wording specifies stress/depression as involving a work absence of 3 months on the previous year; whereas in Harden's survey, the depression vignette describes a person not working last year and briefly hospitalized, but now much better and on treatment; but the basis for this difference in ranking remains speculative at this stage. Nonetheless, Harden's findings that significant worries about epilepsy among potential coworkers relate to the possibility that PWE might display sudden unpredictable behavior and that they would be uncomfortable about providing first aid in the event of a seizure are paralleled by the concern of almost three quarters of our respondents that other employees would be uncomfortable about witnessing a seizure.

One of the important aspects of current disability discrimination legislation is the principle of “reasonable adjustments” (see, e.g., Section 5(2), U.K. DDA, 1995). Delaney and Moody (56) note that following introduction of the U.K. DDA, failure to make reasonable adjustments was the second most common motivation for appeals to U.K. Employment Tribunals. They also note that there is evidence that U.K. employers are becoming more aware of the requirement upon them to do so: for example, in their own investigation, 42% of employers approached indicated willingness to comply—though few had actually consulted PWE about reasonable adjustments that could be made. In our survey also, employers generally expressed a high degree of willingness to take the principle of “reasonable adjustments” on board, including almost two-thirds willing to schedule additional rest breaks for PWE during the working day. The least often endorsed adjustment (by only 22%) was provision of transport to/from work, a serious limitation given the driving restrictions in force for PWE (66). Roessler and Sumner (39) report that in their study in the United States, employers, though supportive of the principle of workplace accommodations for people with disabilities, did set limits related to their perceived costs and level of disruptiveness. These are issues likely to be highly relevant to U.K. employers also, in terms of their commitment to operating within the spirit of the DDA. Reassuringly, the U.K. Disability Rights Commission found that of companies employing people with disabilities and surveyed in 2002, two-thirds reported incurring no extra costs as a result of making reasonable adjustments, while of those that did the costs were under £1000 in two-fifths of cases (http://www.drc-gb.org). More proactive advertising to employers may be necessary of schemes such as the U.K. Employment Service “Access to Work” scheme (67), under which a grant is available of 100% of the associated costs of transportation provision for people with disabilities.

One caveat to this, however, comes from Harlan and Robert (68), who highlight that employers' reluctance to make accommodations may be motivated not simply by cost, but also by the need to maintain control of the work process. Making reasonable adjustments may be construed as “undoing organizational culture” since it involves changes in the “norms of productivity, as well as physical barriers.” These authors identified an array of “resistance strategies” implemented by U.S. employers, aimed at protecting the status quo and withstanding the changes required by the disability legislation. The extent to which their analysis is applicable to the situation among U.K. employers such as those responding to our survey is certainly worthy of more detailed investigation.

Previous research has highlighted the possible effects on attitude toward PWE of company characteristics. For example, Gade and Toutges (34) found no relationship by type of business, but size of business was important. Our exploration of the influence of company size and type on expressed attitudes to employability of PWE produced few statistically significant findings and those that were present were unsurprising, generally supporting earlier work: for example, larger companies were more likely to have employed PWE and to have positions suitable for them; larger companies tended to adopt less potentially discriminatory approaches to recruitment; employers in the retail industry were less likely to follow good practice with regard to recruitment; public services employers were more likely to embrace worker-friendly schemes such as flexible working hours; manufacturers were more likely to express high concern about employing PWE than were the other two groups (data not presented). Overall, however, the influence of company size and type was less than might have been expected; in particular, it appeared to have no real bearing on willingness to make reasonable adjustments. In contrast to Roessler and Sumner (39), but echoing findings from our U.K. general public survey, we also found a role for familiarity with epilepsy—personal experience of employing PWE did appear to have a beneficial effect.

Finally, it is heartening, in the light of the less positive findings from our survey, that Gade and Toutges (34) report that, overall, employers they approached rated work performance of PWE as equal to other workers for productivity, cooperation, popularity, advancement potential, emotional stability, absenteeism, and accident rates. Likewise, employer respondents in the survey by Roessler and Sumner (39) generally described their employees with disabilities in a positive light. These authors make a number of suggestions still applicable in 2005 about the role of rehabilitation counselors in educating employers and supporting PWE, both to increase their employability and to deal with stigma and discrimination when encountered. Programs such as the Dutch “Horizon” program (69) have proved highly effective in bringing employers and would-be employees with epilepsy together, through negotiated short-term work experience placements. With such active engagement, employers can learn the value of PWE and often, as a consequence, opt to retain them. In the United Kingdom, the Employment Medical Advisory Service has a team of trained health professionals who can discuss medical aspects of certain jobs with both employee and employer and reassure both parties about the practicalities of employment.

Strengths and limitations of the research

Our study represents one of the largest in the reported literature. It involved a random sample of U.K. businesses, selected to be representative of the U.K. situation both in terms of economic region and company size. Our sampling strategy thus took account of the legislation of the time, which made an important distinction between larger and small businesses in terms of eligibility for the provisions of the DDA.

Previous surveys of employer attitudes to employment have generally been prey to low response rates and ours is no exception. Response rates to the surveys by Hicks and Hicks fell from 63% in 1966 to 41% in 1986 (30). The survey by Gade and Totges (34) achieved a response of 47%; that by Roessler and Sumner (39) one of only 21%; our own, one of 40%. Response rates to mail surveys have fallen over time, but rates less than 50% are generally considered unacceptable (70); in the present context specifically, Hauser and Hesdorffer (1) suggest a response rate of 75% would be satisfactory. The low-achieved response rate, despite two postal and one telephone reminder, is therefore a limitation of our work and must be borne in mind when the findings are being considered. It may also, of course, reflect lack of interest in the topic on the part of employers. A further limitation is that we had no control over who, within the organizations approached, actually completed the questionnaire—and whether the answers they gave were a genuine representation of the organizational view. As for all surveys of attitude and opinion, the possibility must be acknowledged of social acquiescence in the responses obtained: employers, like members of the general public, may have answered in ways they perceived as socially desirable, or, perhaps more pertinent, as politically correct given current U.K. legislation on disability. The final limitation is that we, like others, are unable to shed light on the size of the problem and the numbers of PWE for whom employers' expressed attitudes translate into positive or negative employment discrimination practices.

CONCLUSIONS AND IMPLICATIONS FOR PRACTICE

  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES

Recent surveys of PWE confirm that, despite the changed medical and legal realities of their condition, many still live with the expectation of discrimination and enacted stigma. In face of evidence such as presented by our and other research into the attitudes of others, some PWE may take issue with Delaney's conclusion (38) that epilepsy is now “a morally neutral” condition. They may also take the view that in relation to their employability, they still sit between the proverbial “rock and a hard place,” since legislation aimed at their protection encourages them to come clean about their condition and so risk encountering enacted stigma. That there is a need for continuing education of employers is self-evident (54,60); in this respect, they are no different from PWE themselves or their informal carers (71). But education alone is not enough: the problem of bridging the gap between knowledge and attitudes and behavior also needs to be addressed though exposure of persons without disabilities to those with them (63). Programs that bring employers actively into contact with PWE are likely to have more impact than educational initiatives undertaken in the abstract. So finally, in answer to our opening question—is it still the same old story for employers' attitudes toward PWE—we would conclude that our study suggests a qualified yes, though happily for PWE, with some room for optimism.

Footnotes
  • 1

    Epilepsy Action, formerly British Epilepsy Association.

  • 2

    The 14 economic regions were Channel Islands, East Anglia, East Midlands, Greater Manchester, Northern Ireland, North, North West, Scotland, South East 1, South East 2, South West, Wales, West Midlands, Yorkshire, and Humberside.

  • 3

    During the telephone contact phase, a number of companies were identified as single-person businesses without any employees and so were eliminated as ineligible; as were a small number of companies where the address held on record proved to be incorrect. This reduced the sample size to 498 companies, upon which the quoted response rates are based.

  • 4

    The breakdown of percentages responding was as follows: 46% from companies of <20 employees; 14% each from companies with 20–49 and 50–99 employees; 11% from companies with 100–499 employees; and 15% from companies employing 500 or more.

  • 5

    Readers are asked to note that throughout the paper, the base numbers on which percentages quoted are calculated exclude those respondents who omitted to answer particular questions.

  • 6

    Under the terms of the UK DDA 1995 (see “background” section), employers can stipulate essential health requirements of a job, include a question on job application forms asking whether the applicant is disabled and seek information about the effects of the disability; they can also insist on a disabled person having a medical examination, and can take account of medical evidence to justify an adverse employment decision.

  • 7

    Large numbers of respondents replied “does not apply” to the items about workplace accommodations, range of n = 37 for item relating to temporary reassignment of duties to n = 90 for the item relating to the possibility of home working.

Acknowledgments

  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES

Acknowledgments:  Our sincere thanks go to all those employers who took the time and trouble to complete and return the questionnaire. Our thanks also to Amanda Wilmot and Howard Meltzer at the U.K. Office of National Statistics and Monica Cooper and Shelley Wagstaff at Epilepsy Action, all of whom made extremely helpful suggestions about the content and wording of the questionnaire; Alexander Jacoby, for providing invaluable assistance with telephone contact of employers; and Carrol Gamble, for acting as statistical consultant to the project. The study was funded by Sanofi Synthelabo, to whom we are indebted. The U.K. Public Attitudes to Epilepsy Study formed the basis for Jo Gorry's work toward an MPhil degree, which she was awarded in 2003.

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  1. Top of page
  2. Abstract
  3. BACKGROUND
  4. METHODS
  5. FINDINGS
  6. DISCUSSION
  7. CONCLUSIONS AND IMPLICATIONS FOR PRACTICE
  8. Acknowledgments
  9. REFERENCES
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