Epilepsy & Behavior 45 (2015) 21–30

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Epilepsy & Behavior journal homepage: www.elsevier.com/locate/yebeh

Employability among people with uncontrolled seizures: An interpretative phenomenological approach☆ Monica Chen Mun Wo a, Kheng Seang Lim a,⁎, Wan Yuen Choo b, Chong Tin Tan a a b

Division of Neurology, Department of Medicine, Faculty of Medicine, University of Malaya, Malaysia Department of Social Preventive Medicine, Faculty of Medicine, University of Malaya, Malaysia

a r t i c l e

i n f o

Article history: Received 17 November 2014 Revised 11 February 2015 Accepted 13 February 2015 Available online xxxx Keywords: Employment Qualitative study Epilepsy Uncontrolled seizures Internal factors Positive factors

a b s t r a c t Purpose: This study aimed to explore positive and negative factors affecting the employability in patients with uncontrolled seizures. Method: Semistructured interviews with 21 patients with uncontrolled seizures were analyzed using interpretative phenomenological analysis. Result: Eleven (52.4%) of the participants interviewed were employed; 7 were holding full-time position with more than 4 years of working experience. The mean age was 34.6 years, 71.4% were female, 38% were married, 71.4% had at least 11 years of education, 38% had a driving license, 19% received government monetary aid, 66.7% had seizure onset before reaching 17 years of age, 66.7% experienced monthly seizures, and 76% were on polytherapy. A total of 6 main themes were found to be affecting the employability among people with uncontrolled seizures: (a) ability to work; (b) intention to work; (c) support and stigma at workplace; (d) family support, overdependence, and protection; (e) life event; and (f) government and welfare support. Subthemes under the main theme ability to work included education, cognitive and physical functions, ability to continue working after seizures, ability to travel to work, self-perceived ability to work, and ability to cope with stress. Many shared the same idea that employment is important, but their intention to work varied. The employed group tended to work for a future goal and self-satisfaction, and the unemployed group tended to have no or lack intention to work. Positive factors were noted in the following themes: ability to work; intention to work; support and stigma at workplace; and family support, overdependence, and protection. Conclusion: There were internal and external factors affecting the employability among people with uncontrolled seizures both positively and negatively. Positive internal factors such as ability and intention to work require further exploration. © 2015 Elsevier Inc. All rights reserved.

1. Introduction A significant number of people with epilepsy (30%–40%) experience uncontrolled seizures in spite of optimal treatment [1]. Employment was one of the psychosocial areas with significant challenges affecting their quality of life. People with uncontrolled seizures were shown to encounter greater difficulties in employment compared with those with controlled seizures [2,3]. Studies reported that the clinical diagnosis of epilepsy alone affects neither the job prospects of the individual nor the occupational functioning and his capacity to work [4]. Associated psychosocial problems have often been reported to be more disabling than seizures themselves

☆ The work is original and has not been published elsewhere or not under consideration by another journal and fulfilled the local medical ethical guidelines. ⁎ Corresponding author at: Neurology Laboratory, 6th Floor, Menara Selatan, University Malaya Medical Center, 50603 Kuala Lumpur, Malaysia. Tel.: +60 14 7214303; fax: +60 3 79492613. E-mail address: [email protected] (K.S. Lim).

http://dx.doi.org/10.1016/j.yebeh.2015.02.016 1525-5050/© 2015 Elsevier Inc. All rights reserved.

[5]. However, there is a complex relationship between seizure control and psychosocial challenges intermediated by various internal and external factors such as self-motivation, self-perceived stigma, attitudes of and support from friends and family, and attitudes and misperception of the employer and colleagues. Many studies demonstrated that employment in people with frequent seizures was predominantly affected by discrimination in the society [6–9]. However, others have shown that the internal factors, such as perception of self-worth [10], selfacceptance [11], self-perception of working ability [12], fear of seizures [13], neuroses, and personality problems [14], also play an important role in the employability of people with uncontrolled seizures. Studies in Asian populations reported an employment rate of 58%– 89% among patients with epilepsy [15–18], similar to those reported in the West [6,7,19–25]. However, factors affecting the employability in Asia are likely different from those affecting the employability in the West culturally, socially, and economically. Studies in Malaysia, Japan, and Korea showed that employment rates in people with epilepsy were significantly associated with marital status in contrast to studies in North America. Besides that, a study in South India reported that the

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ability to drive was not a predictor of employment status in people with epilepsy since the majority of people in that developing country depend on public transport rather than own a vehicle [26]. Most qualitative studies in epilepsy focused on the quality of life in people with epilepsy [7,27–30], in which employment-related themes were often discussed as an important factor affecting quality of life. This highlighted the need for an in-depth investigation into self-perceived importance of and challenges in employment among people with epilepsy. Understanding the multifaceted factors affecting employment among people with uncontrolled seizures is essential for designing an effective intervention. This study aimed to understand these factors associated with employability encountered by those with uncontrolled seizures in Malaysia using a qualitative approach.

Table 2 Interview guide. Tell me about your employment experience. Tell me the challenges you encountered in relation to finding and keeping a job. How do you overcome these challenges, and what support(s) do you have? Tell me your view about employment.

interviews were transcribed ad verbatim. All recordings in Malay or Chinese languages were translated into English by an independent translator. The translated versions were cross-checked by another researcher for clarification of translation and verification of the meanings of any culturally specific terminology.

2. Methods 2.3. Analysis 2.1. Participants A purposive sampling of people with uncontrolled seizures was performed until saturation of themes in both employed and unemployed groups was achieved, yielding a sample of twenty-one participants, who consented to semistructured interviews from March to December 2013 in a neurology outpatient clinic in University Malaya Medical Center (UMMC), Kuala Lumpur, Malaysia. There were twentysix potential participants, and 5 declined participation, giving a respondent rate of 80%. The inclusion criteria included those between 17 and 60 years of age, with confirmed epilepsy diagnosis from one year or more years back, and who had at least one seizure in the past 12 months. Students, housewives, retired persons, and those with learning disabilities or other comorbidities affecting employability were excluded from the study. The demographics and clinical characteristics of the participants are illustrated in Table 1. 2.2. Procedure Consenting participants took part in an audio-recorded interview using a semistructured questionnaire (see Table 2) in the local languages including Malay, English, and Chinese. All participants were encouraged to describe their life experience and concerns in relation to employment in detail and were probed further on important topics that were expressed. One of the family members was allowed to accompany the participant if necessary to ease unnecessary anxiety. The

All transcripts were analyzed in English using interpretative phenomenological analysis (IPA), an ideographic case study approach. It is phenomenological as it seeks an insider perspective on the lived experiences of individuals and interpretative in that it acknowledges the researcher's personal beliefs and standpoint and embraces the view that understanding requires interpretation [31]. It was reported to be useful in developing theories and models to inform policy [31]. Interpretative phenomenological analysis is iterative: coding at higher order levels is accompanied by a return to the original interview transcript to ensure that the coding and analysis accurately reflect the descriptions and explanations given by interviewees [32]. The analysis of this study referred closely to the principle of a four-stage process as described in Smith and Osborn [33], with the aid of NVIVO 8 software, to understand the content and complexity relationship between interviews as well as to have systematic arrangement and electronic storage of raw data. All interviews were first coded by the first author and reviewed by the second author. An interrater reliability analysis using the “coding comparison” feature in NVIVO 8 software was performed to determine consistency among raters. A percentage agreement of 99.4% and Cohen's kappa coefficient of 0.75 (p b .0.001), 95% CI (0.50, 0.85) were obtained. 1) The first transcript was selected for repetitive and interpretative reading. Annotations of interesting or significant conversations were highlighted and coded as free nodes.

Table 1 The demographic and clinical characteristics of the participants (n = 21). ID

Age (years)

Race

Gender

Seizure frequency per year

Duration of epilepsy (years)

Employment status

Occupation

1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21

21 30 35 27 22 47 29 45 40 39 31 43 32 38 28 29 39 34 37 33 47

Chinese Chinese Indian Indian Chinese Chinese Chinese Chinese Chinese Chinese Indian Chinese Indian Malay Chinese Chinese Indian Chinese Chinese Chinese Malay

F F M F M M F M F M F F F F M F F F F F F

6 90 2 24 4 114 4 12 54 3 102 12 1 12 48 4 4 5 3 4 12

18 2 26 12 1 43 22 40 25 5 21 37 22 22 2 9 29 15 28 19 10

E UE E E UE UE UE E E E UE UE E UE UE E UE E E UE E

Clinic nurse – DHL delivery Research officer – – – Human resource manager Family business Marketing – – Tuition teacher – – Clerk – Primary teacher Packaging factory – Floor plan designer

UE: unemployed; E: employed.

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2) Initial free nodes would be transformed into concise phrases to capture the quality essence of the data whereby psychological terminology may be invoked. Similar free nodes (themes) would emerge as the transformation process went through the whole transcript. However, no attempt of special attention for any paragraph was made where emerging themes reflect the richness of the particular passage. 3) Superordinate concepts emerged by interrogation of emerging themes to make connections between them, demonstrating hierarchical relationships. A table of superordinate themes for the first case was obtained, within which nested the subordinate themes with identifying information. 4) Subsequent transcript analysis on the other interviews using existing superordinate themes from the first case was performed for convergences and divergences of data. New themes emerged as one worked through other transcripts. Finally, master tables of superordinate themes were constructed, with captions for the strongest respondent's concerns on employment issues (see Table 3). In this study, we defined positive factors as factors that facilitate the employability of people with epilepsy or increase their motivation to seek employment. Negative factors, on the other hand, were factors or barriers that affect their employability or discourage their involvement in the working force. 2.4. Ethics This study was approved by a local ethics committee at University Malaya Medical Center (MREC no.: 1010.83). Informed consent from each patient was obtained. Participants were assured of their anonymity and confidentiality. 3. Results All participants were diagnosed to have focal dyscognitive seizures, 4 of whom had secondarily generalized seizures (3 unemployed participants and 1 employed participant). Of these, fifteen (71%) participants were female, with a mean age of 34.6 ± 7.5 years old. Seven (33.3%) were married, and 19 (90.4%) had completed secondary education. The mean seizure frequency was 24.8 ± 35.5 per year (range: 1–114

Table 3 Table of themes: factors of employability in patients with uncontrolled seizures. Nos.

Themes

1

Ability to work Education Cognitive and physical functions Ability to continue working after a seizures Clinical factors Seizure (event, appearance, frequency, onset, timing, recovery time, and postictal), medication Ability to travel to work Self-perceived ability to work Ability to cope with stress Intention to work (self-determination) Work for financial needs Work towards a future goal Work as part of a normal life Work for self-satisfaction Have no or lack intention to work Support and stigma at workplace Workplace stigma Support from employer Support from coworker Disclosure of epilepsy Family support, overdependence, and protection Life event Government and welfare support

2

3

4 5 6

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per year). Four participants were registered as persons with disabilities and received small disability monetary aids of about USD 80 monthly below the minimum wage of about USD 250 monthly from the government. Eleven (52.4%) of the participants were employed. Those who were employed were more likely to be married (52.4% vs. 12.5%, p = 0.02) and less likely to have monetary aids from the government (0% vs. 19%, p = 0.04) compared with the unemployed group, as shown in Table 4. The mean seizure frequency per year of the employed group was relatively lower (11.5 ± 15.61) than that of the unemployed group (39.4 ± 45.5). However, there were no significant correlations found between the employed group and the unemployed group by age, education level, ability to travel alone, employment prior to seizure onset, age at seizure onset, seizure frequency, polytherapy, and driving license ownership. A total of six main themes (Table 3) were identified including (a) ability to work; (b) intention to work; (c) support and stigma at workplace; (d) family support, overdependence, and protection; (e) life event, and (f) government and welfare support. Themes (a) and (b) were classified as internal factors, and themes (c) to (f) were classified as external factors. 3.1. Ability to work Ability to work appeared as one of the main themes determining employability, which included education, cognitive and physical functions, ability to continue working after a seizure, ability to travel to work, selfperceived ability to work, as well as ability to cope with stress. 3.1.1. Education Education is a fundamental requirement in most employment. Most of the participants (n = 15) had completed secondary school education. Only six (28.6%) participants further studied and attained tertiary education, of which three out of four were employed full-time for more than four years. The remaining two were unemployed mainly because of family restrictions as well as difficulties in obtaining preferred jobs. A promotion to managerial position was offered to a male participant upon completion of his diploma study, where he also indicated that further study would increase his professional level. Positive factor: “I need to have some theoretical understanding or academic understanding that will help me in my job…. That's why I took my certification and diploma in human resource management.” [(E8)] 3.1.2. Cognitive and physical function Work performance will be influenced by cognitive and physical functions, which may be affected by the underlying neurological disorders, frequent seizures, or side effects of antiepileptic medications. Reported cognitive and physical dysfunctions included slowness in productivity (UE11, UES5, UE7, and UE6), poor memory (UE7, E18, and E21), tiredness (E18), and headache (E13). Negative factors: “She [ex-manager] every time said:” you didn't do things fast, and accurate. “… my superior told me that my work performance is decreasing.” [(UE7)] “I work slower, not clever compare to others.” [(UE6)] “I understand [what are] our responsibilities at work but I just being forgetful.” [(E21)]

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Table 4 Comparison of demographic characteristics between the employed group and the unemployed group (n = 21). Total (n = 21)

Employed (n = 11)

Unemployed (n = 10)

p-Value

Age, mean ± SD

34.6 ± 7.5

35.1 ± 7.7

34.0 ± 7.6

NS

Gender Female, n (%) Male, n (%)

15 (71.4%) 6 (28.6%)

8 (73%) 3 (27%)

7 (70%) 3 (30%)

NS

Marital status Single, n (%) Married, n (%) Divorced, n (%)

13 (61.9%) 7 (33.3%) 1 (4.8%)

4 (36%) 6 (55%) 1 (9.1%)

9 (90%) 1 (10%) –

0.024

Education level Primary, n (%) Secondary, n (%) Tertiary, n (%) Postgraduate, n (%)

1 (4.8%) 13 (61.9%) 5 (23.8%) 2 (9.6%)

– 6 (54.5%) 5 (45.5%) –

1 (10%) 7 (70%) – 2 (20%)

NS

Traveling Travel alone, n (%) Travel with others, n (%) Driving license, n (%) Receiving monetary aid from government, n (%) Employed prior to seizure onset, n (%) Age at seizure onset, mean ± SD Seizure frequency/year, mean ± SD Having monthly seizures, n (%) Polytherapy, n (%)

13 (61.9%) 8 (38%) 4 (19%) 7 (33%) 15.1 ± 9.6 24.8 ± 35.5 14 (66.7%) 16 (76%)

6 (55%) 5 (45.5) 0 (0%) 4 (36.4%) 16.0 ± 11.0 11.45 ± 15.6 7 (63.6%) 7 (63.6%)

7 (70%) 3 (30%) 4 (40%) 3 (30%) 14.1 ± 8.3 39.4 ± 45.5 7 (70%) 9 (90%)

NS

“I feel tired easily. I feel my memory will get poor[er] after each seizure attack.” [(E18)]

3.1.3. Ability to continue working after a seizure A total of eighteen participants had prior experience in having seizures in the workplace, in which 10 (55%) of the participants remain employed at the time of interview. Eleven participants thought that epilepsy had impacts towards employment; while half of the employed group claimed otherwise. A majority (17/21) reported that they were able to continue working after having seizures with a short recovery duration, especially in the employed group (10/11). Medical leave was not routinely required after a seizure in most employed participants, except one. The decision to continue working after a seizure depended not only on the individual but also on the confidence level of the coworkers in dealing with their seizures. Positive factors: “Yes, though very seldom this [seizure] will happen or rather normally if I have fits, you know, I will recover. I won't go home and have M.C. [medical leave certificate]. I will continue my work.” [(E8)] “[After having a seizure at workplace] I would have just sit down for a few minutes and relax, then I take in one cup of water, then I will feel okay.” [(E3)] “Even if there was [a seizure], I would only take about half an hour to rest.” [(E21)] “I never took medical leave because of epilepsy.”

NS 0.04 NS NS NS NS NS

emotions and disrupted usual work flow, which might lead to unnecessary hospital admission. Negative factors: “[I experienced] very bad headache [after a seizure] and I will sleep a lot. I will need one full day to recover.” [(E13)] “The boss looked at you like this [seizure attack]… very troublesome he [colleague] said. First he said when I fall down [seizure], he needs to send me to UM [a local hospital]… wasted people time.” [(UE6)] 3.1.4. Ability to travel to work The ability to travel to work was one of the important factors in obtaining and maintaining employment, which will be affected by the proximity of the workplace and convenience of available public transportation. Five employed participants were highly dependent on family or friends to provide transportation to their workplace, which was reported to be a nuisance in an unemployed participant (UE17). Company relocation had also resulted in a change in employment in several cases (E3, UE6, and UE7). Negative factors: “I stayed at their [relative's] home and then worked at Toto [a working place close to the relative's house].” [(UE20)] “[I have to] wait for public transport [for] very long time…. So, I didn't continue that job.” [(UE7)] “Firstly, it [previous company] had relocated. Secondly, I have lost my car because of car accident.” [(UE6)]

[(UE17)] Postictal symptoms, such as headache and drowsiness, would result in a longer period of recovery. In addition, inadequate knowledge in management of a convulsive seizure posed an impact on coworkers'

“Even if they [employer] give you [me] a job, how are you [am I] going to travel every day? You [I] cannot depend on your brother [always].” [(UE17)]

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3.1.5. Self-perceived ability to work A majority of the participants perceived themselves to be capable of working like others except for two (UE11 and E13). Positive perception of one's own working ability despite epilepsy and not being ashamed of having seizures, i.e., with less self-perceived stigma, were characteristics of those who were employed. Positive factors: “I can do whatever they [the others] could… [In] things that I'm good at, I can be just as good as other or even better…. To me is that, there is nothing to be ashamed.” [(E8)]

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When participants were asked about their ways in coping with work-related stress, religion was found to be a common way to cope with work stress. “My inspiration [is] from my belief, from God. I get my strength from there [religious faith].” [(E8)] “I'm… go[ing] with my friends to temple. I can release my stress, whatever, any sadness or goodness also, I [will] inform to my spiritual father.” [(UE11)]

“I can work. [If] other people can do it, I can also do it.” [(UE12)] “I can do better than them [other colleague]. I just need somebody to support me, made me strong…. Like clerical work, not too much of work, that sort of work I can do.” [(UE14)] On the other hand, bearing self-perceived health limitation concerns and a fear of having seizures outside of home are likely factors which hindered those unemployed from getting a job. Negative factors: “I really want to work… but my body couldn't.” [(UE11)] “I'm always scared to come out from the house… [because I feel] I'm going to have my sick [seizure].” [(E13)] “Because I feel shy, I will knock out.” [(UE17)]

3.1.6. Ability to cope with stress The ability to cope with stress at the workplace was reported to have an impact on maintaining a job (UE11 and UE14). Emotional control, positive thinking, and never-give-up attitude were some of the positive attitudes reflected in working participants.

“[If] anything happen, [I will]… talk to my [God] father, my father will… comfort me…. Pray harder or meditate myself, talk something [positive].” [(UE17)] 3.2. Intention to work Many shared the same idea that employment is important and wanted to work, but their intention to work varied and can be categorized into five subthemes: work for financial need, work for a future goal, work as part of life, work for self-satisfaction, and have no or lack intention to work. The intention motivated a person to find or maintain a job. 3.2.1. Work for financial needs About half (n = 12) of the participants said that they wanted to work for income so that they could be financially independent and capable of supporting their family. “I want to earn money, because… I cannot depend only on my mother.” [(UE17)] “If my father is not here [passed away], I will have no one to depend on.” [(UE5)] “I wanted to have the ability to support myself.” [(UE7)]

Positive factors: “When I encounter a problem, I will not lose my temper.” [(E10)]

“Because I need money to pay my car and house loans.” [(E3)]

“I would have said “never mind” when I fail, I rise up again and cross over it.” [(E8)] However, those without employment often voiced their inability to deal with stress at work and would easily give up without having the determination to complete their work tasks. Negative factors: “I cannot get stress up so much on the work…. I do a little bit [of] work also feeling tired already.” [(UE11)]

3.2.2. Working towards a future goal Intention to work was driven by a definite goal in life in nine participants (6 employed and 3 unemployed), such as to start their own business (E3, UE11, and E13), to attain a comfortable life (E21), and to achieve a saving plan (UE15). “Yes, I wanted to own a business.” [(E3)] “I wanted to have a more comfy life.” [(E21)]

“… I felt very tension and… whenever I wanted to start something new, like [a] new work. I would have easily given up if I failed to complete the work”. [(UE14)]

“The most wanted thing, I want to open my own business. Do my own business.” [(E13)]

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“My dream is to have more saving.”

3.3. Support and stigma at workplace; a reflection on epilepsy disclosure [(UE15)]

3.2.3. Work as part of a normal life Employment was perceived as part of a normal life in three participants (UE2, E9, and UE20). In reverse, not having a job was perceived as deprivation from leading a normal life. “Back to normal working life, you know… back to normal working life, just go back… to a normal working life.” [(UE2)] 3.2.4. Work for self-satisfaction In addition to that, intention to work could also be intrinsic where an individual would find inherent pleasure and satisfaction in work, as well as meaning in life. Five participants (4 employed and 1 unemployed) perceived employment to be self-satisfying and enjoyable. One female participant with uncontrolled seizures (E4) who had working experience of more than five years showed great interest and passion in her present employment. One of the newly married participants (UE7) perceived that working could increase selfconfidence, which served as one of the main motivations for her to actively search for a job. “Because I like… I like the work that I'm doing now. The R&D field and the research field.” [(E4)]

“I always wanted to have a profession in human resources as I enjoy dealing with people, enjoy understanding people's behaviour as well enjoy motivating and encouraging people, you know.” [(E8)]

“I used to think because I like cars, because I like lorry, therefore I work in that field-repairing lorry, and would want to repair the lorry to its best.” [(E10)] “I look forward to be an inspiration to people surrounding me… to encourage people that it can be a normal person to build up a career; it can also be epileptic indeed.” [(E8)]

3.2.5. Have no or lack intention to work Some participants had no intention to work because of uncontrolled seizures and fear of failure in life. One participant (UE14) was demotivated by a previous negative working experience even though she perceived herself as having the ability to work like others. A lack of proactivity or an easy-to-give-up attitude in the process of searching for a job predominated in those who were unemployed. There was one participant who showed no passion in her current work and did not have any goals in life but remained in employment for a year “because my family asks me to work”. Negative factors: “I will stay at home, nothing to do. [No intention to work]” [(UE6)]

3.3.1. Workplace stigma There were seven participants who could recall incidents of being discriminated against at the workplace for being a person with epilepsy, including being rejected after epilepsy disclosure during an employment interview (UE6 and UE11), discouraged and discriminated against by colleagues (E8, UE17, and UE12), and dismissed from work after having seizures at the workplace (E13 and E1). Negative factors: “She [previous employer] is aware of my sickness and wanted me to quit.” [(E1)] “I have gone to countless time of interview…. [When] everyone heard that you have this kind of disease [epilepsy], [they would ask] you [to] wait for news.” [(UE6)] “[Colleague said] your brother, your sister, your family, they are okay [financially]. Why [do] you come and sit down here and knock out [seizure attack]? Why are you wasting your time?” [(UE17)] “It was a wonderful job and then it's all gone. [Had been dismissed after a seizure at workplace]” [(E13)]

“The staff looked down on me, as though I was an ET [alien].” [(UE12)] 3.3.2. Support from employer Supportive employers who were understanding and had sufficient knowledge about epilepsy had positive impact on the employability of people with uncontrolled seizures, providing an impression of being appreciated and valued at the workplace. Some employers focused on their ability to work rather than the epilepsy itself (E10 and UE15). A female participant (UE7) reported that her previous employer would not disclose her sickness to all colleagues out of respect for her privacy and to avoid the possibility of her being discriminated by other colleagues. Positive factor: “They [managers who knew that I have epilepsy] will tell me what I need to discuss with my client, whether or not the clients accept our proposal, it is my job to convince him.” [(E10)] 3.3.3. Support from coworkers Most participants perceived that their colleagues would not mind working with them and were supportive. There were instances of which a colleague would lend a hand during a seizure, as reported by a few participants. Feeling shocked when first witnessing a seizure was a common phenomenon among the colleagues, but they would familiarize themselves to such incidents in the future after gaining more understanding about epilepsy as described by participants. Positive factors: “They [colleagues] were quite supportive.” [(E16)]

“I do not want to work because when I worked, there's a lot of problem with friends and colleague…. I will easily give up when I failed to complete the work.” [(UE14)]

“Yea! Many times [when I had a seizure] in front of my colleagues, they know how to handle it.” [(E4)]

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“In my office, my colleague will help me. They will look after me because they knew about my epileptic condition. Therefore, they take extra care of me. When they see me having a seizure, they will assist me.” [(E9)] “They know already. [If a seizure occurred] They will come and help me. They will give me water. They let me lie down for a while. They will massage my leg.” [(UE11)] “Nothing much, they were scared, that's definite, but they treated me well.” [(UE20)] 3.3.4. Disclosure of epilepsy Struggle with epilepsy disclosure was revealed in half of the participants. Doubt and fear of being rejected and the worry of being discriminated lead to their unwillingness to disclose their diagnosis unless questioned or incidentally discovered, as expressed by half of the interviewed participants. Previous experience of failure to obtain a job after epilepsy disclosure would discourage those with epilepsy, making them feel even more reluctant to disclose their seizure condition in the future. “Because I'm afraid. I understand that we, as [a] epilepsy person, nobody would want to work with me.” [(UE14)]

“I never tell them [employer]… scared to tell them.” [(UE17)] “Cannot let people know I have this disease…. This is my weakness.” [(UE5)]

“He [ex-director] came to ask: “Do you know what is happening [after witnessing a seizure]?” Then I said: “No, [I] just got sickness, not feeling well.”” [(UE7)] “You know, first time, I informed [my seizure condition] to them, they didn't want to take [me] in for the job…That is why I worry so much [to disclose my epilepsy]…Surely they don't want to take [me]… I know.” [(UE11)] On the other hand, there were eleven participants who chose to disclose their epilepsy condition to their respective employers. Five of these (four employed and one unemployed) strongly perceived and valued the importance of being honest to their potential employer and willingness to disclose their condition during the employment interview. Positive factors: “It is better for me to tell now, [rather] than to tell them when things happen. Either you accept me or you don't accept me. Similarly, it goes for my personal life as well. I tell my wife I have epilepsy, either or not you can accept me.” [(E8)] “You must be honest to your employer, else it [seizures] might scared him off.” [(E9)]

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“I don't mind people knowing about my personal issues.” [(E10)] “I will not lie to them [employers], I don't think telling them [employers] is a shameful thing. I have this sickness, that's the truth. Should be honest to others, there is no need to lie to others.” [(UE20)] 3.4. Family support, overdependence, and protection Family support was perceived to be important in employment by people with uncontrolled seizures. The attitude and reaction of family members would affect their determination to work. Of the eleven employed participants, ten of them had full family support. Positive factors: “I'm brought up by my father. He always tell me: “You must learn to be strong”. I always remember this statement from him.” [(E8)] Two unemployed participants (UE7 and UE14) expressed an extremely strong need for family support in employment and also in life, which is suggestive of overdependence. Overdependence: “I need my parents support because… I [will easily] give up.” [(UE14)] “I need a lot of encouragement. My husband need to encourage, it means friends around me also need encourage [me].” [(UE7)] Moreover, there were occasions where parents had the tendency of being overly concerned about the safety of participants and perceived a high risk of them being injured at the workplace. This resulted in some (UE15, UE17, and UE11) being prohibited from working. An unemployed female participant felt that her mother was being overprotective and discouraged her from working outside (UE12). Family protection: “Because my mother doesn't want to let me [work]. She told me that: “You go out and then you fall down somewhere”…. They scared [that] anything will happen to me.” [(UE17)]

“They [family] are concern that accident will occur while I am working…. He [eldest brother] disagrees with me going out.” [(UE20)] 3.5. Life event Life events, such as economic recession, relocation, bankruptcy, accident, loss of supportive family members, and marriage, were common reasons for work termination especially in conjunction with having epilepsy. Life events resulted in a change in employment status: “First I had relocated. Second, I had lost my car because of accident… body health got problem [increase in seizure frequency]… until I have a very serious accident, I dare not drive already.” [(UE6)]

“My father passed away. The stress came. I cannot take it for few years [after the death of father]…. [Now] I want to find out a job also

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my mother, [mother said] “Okay, they give you job also, how you want to go there and come back to Kepong [home]?”… if he [father] still with me means, he will do something with me, corporate with me.” [(UE17)] On other occasions, job changes could be a positive transition, with participants seeing improved working conditions, new work challenges and higher career achievement, or an opportunity to get involved in family business. Positive factors: “I worked in the 4 digits department [lottery] because this is a family business. I help my father. I stopped working in the travelling industry until today.” [(E9)] “I did changed job before, because of salary issue.” [(E16)] “Higher salary and more convenient.” [(E1)]

in those who were employed. The importance of intention to work as a factor affecting employability needs to be studied in a larger population quantitatively. Certain life events, beside seizures, led to a change or termination in employment. Job changes due to economic recession, company relocation, or bankruptcy were common. Some of the participants changed or quit their employment because of personal reasons such as marriage; search for better work challenges and higher career achievement; or negative stressors such as failure to cope with stress, shame of having a seizure at the workplace, and family disagreement on employment. 4.2. Positive factors Our study revealed the significance of positive factors, which were mostly noted in people with employment despite uncontrolled seizures. These positive factors, including ability to work and internally derived intention to work and external support by family members, employers, and coworkers, were seemingly important towards employability in people with uncontrolled seizures. This is in contrast with previous studies, which emphasized mainly the impact of factors that negatively affect employability.

3.6. Government and welfare support

4.3. Practical factors affecting employability

The participants needed to be prompted for social support such as getting help from social welfare or government institutions in finding a job.

A majority (90%) of the participants perceived themselves to be able to work like others. However, this subjective perception of ability to work did not equal attainment of successful employment. In fact, only half of them who perceived themselves as such were in full-time employment. Having a realistic goal and equipping one's self with more abilities related to work, such as higher education level, ability to travel alone to work, and better stress-coping strategies, appeared to be the key components in successful employment, which was reflected under the theme ability to work. These subthemes can form the basis of objective employability assessment in someone with epilepsy.

Positive factors “… doctor helps me to apply the welfare… if you I got the welfare…. The welfare can give chance to do the something…. I already applied… applied the tailoring course, may be from there I can do something, can achieve my life [goal], may be can do the own business…. The government 100% will give a loan, no need to worry about the money”. [(UE11)] 3.7. Model of employability A model of employability for people with uncontrolled seizures was formulated based on the themes identified in this study, which aimed to help in employability study and assessment (Fig. 1). This model emphasizes the importance of positive factors and the influence of both internal and external factors on the employment of people with epilepsy. Positive factors were noted in the following themes: ability to work; intention to work; support and stigma at workplace; and family support, overdependence, and protection. The internal factors consisted of ability to work and intention to work while external factors included support and stigma at workplace; family support, overdependence, and protection; life events; as well as government and welfare support. Higher number of positive internal and external factors indicates higher employability, and vice versa. 4. Discussion 4.1. Employability of people with epilepsy is multifactorial Factors affecting employability in people with uncontrolled epilepsy are multidimensional. The six main themes identified in this study were (a) ability to work; (b) intention to work; (c) support and stigma at workplace; (d) family support, overdependence, and protection; (e) life event; and (f) government and welfare support. The subthemes under ability to work are determinants of productivity in persons with epilepsy. Intention to work included a broad category of intentions, of which working for a future goal and for self-satisfaction appeared more often

4.4. Intention to work, does it really matter? Our study showed that people with employment might have different intentions of working compared with those who were unemployed. Those employed mostly worked for self-satisfaction and future goals rather than for current need, especially among those unemployed. The correlation between the intention and the employment status was postulated to be related to the degree of self-determined motivation, in which those who worked for self-satisfaction are more likely to have self-determination and, thus, more likely to maintain employment. According to Deci and Ryan (p.220), human beings are active, growthoriented organisms who are naturally inclined towards integrating their psychic elements into a unified sense of self and integrating themselves into larger social structures [34]. Self-determination theory (SDT) elaborated on the nature of motivation affecting an individual's behavior [35]. Those with self-determined types of motivation were shown to have higher job satisfaction and organizational commitment [36]. Consistant with this theory, working for self-satisfaction and future goals is likely to be internally derived, with stronger self-determination, and thus greater employability, as shown in this study. Intention to work for current needs are likely externally provoked. Those who demonstrated having no or lack of intention to work were unemployed. The correlation between self-determination and employability in people with uncontrolled seizures requires further confirmation. 4.5. Significant others Support from employers and colleagues were perceived to be important positive factors, especially by those who were employed in our study. In contrast, stigmatization and poor employer knowledge about

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Fig. 1. Model of employability.

epilepsy resulted in unemployment or change in employment in onethird of the participants. This is consistent with previous studies which reported that the chances of being employed successfully were related to the employer's attitude towards the person with epilepsy, in which unnecessary restrictive and insensitive approaches shown by the employer out of excessive concerns and lack of knowledge about epilepsy were detrimental to the career development of the person with epilepsy [37–39]. Acceptance of people with epilepsy in the workplace could be related to familiarity of the coworkers with the condition. The majority commented that colleagues were able to accept working with a person having uncontrolled seizures, though it was a “shock” or “surprise” when they first witnessed a seizure. They would get used to it and learn how to help when a seizure occurred again. This finding of “familiarity decreases stigma” has also been observed among those with mental illness [40]. Family support was a key factor in employment, as described by most participants, especially those who were employed. Family overprotection in this study was mainly related to fear of work-related

injuries, thus negatively affecting the employability, as previously described [10,13]. In contrast to family overprotection, overdependence on family members was a new theme, which, to our knowledge, has not been described in previous literature of employment in people with epilepsy. A dependent personality is a common trait in patients with epilepsy [41], and people with this trait are known to have difficulty making decisions about important areas in life [42], e.g., employment. However, further study is needed to determine the impact of this personality trait on employment in epilepsy.

4.6. Limitations This study was limited to patients attending a tertiary center in Malaysia, and generalization of the results to populations outside Malaysia may be affected by culture and social–political factors. However, an attempt to recruit patients from different ethnic groups, as well as both employed and unemployed groups, was made to ensure diversity in themes.

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Employment difficulties in the search for a job prevailed in most interviews even though the possibility of courtesy bias, in which respondents might provide preferred or ideal answer cannot be fully eliminated. To minimize courtesy bias, rapport was established with each interviewed participants before the actual interviews. 4.7. Future implications This study indicated the importance of positive factors in being successfully employed as well as the importance of internal factors, especially the ability and intention to work. We are aware of to other empirical investigations directly testing how the intention to work affects employability in people with uncontrolled seizures. Thus, the importance of positive factors and internal factors needs to be assessed quantitatively with scales measuring ability to work and intention to work. Understanding these factors may help improve the employability of people with uncontrolled seizures. 5. Conclusion Employability of people with uncontrolled seizures is multifactorial. This study revealed the presence of positive factors in successful employment among people with uncontrolled seizures, with emphasis on internal factors, such as the ability and intention to work, in addition to the external factors, especially support at the workplace and by family members. Acknowledgment This study was sponsored by a High Impact Research Grant from the governmental research fund (Reference no: UM.C/HIR/MMOHE/ ED-08). Disclosure of conflicts of interest There are no known conflicts of interest associated with this publication, and there has been no significant financial support for this work that could have influenced its outcome. References [1] Brodie MJ. Diagnosing and predicting refractory epilepsy. Acta Neurol Scand Suppl 2005;181:36–9. [2] Lim KS, Wo SW, Wong MH, Tan CT. Impact of epilepsy on employment in Malaysia. Epilepsy Behav 2013;27:130–4. [3] Jacoby A, Gorry J, Baker GA. Employers' attitudes to employment of people with epilepsy: still the same old story? Epilepsia 2005;46:1978–87. [4] Gupta SP. Employability and work adjustment of epileptic patients. Indian J Psychiatry 1981;23:152–5. [5] McQueen AH, Swartz L. Reports of the experience of epilepsy in a rural South African village. Soc Sci Med 1995;40:859–65. [6] Chaplin JE, Wester A, Tomson T. Factors associated with the employment problems of people with established epilepsy. Seizure 1998;7:299–303. [7] Herodes M, Oun A, Haldre S, Kaasik AE. Epilepsy in Estonia: a quality-of-life study. Epilepsia 2001;42:1061–73. [8] Smith G, Ferguson PL, Saunders LL, Wagner JL, Wannamaker BB, Selassie AW. Psychosocial factors associated with stigma in adults with epilepsy. Epilepsy Behav 2009;16:484–90. [9] Komolafe MA, Sunmonu TA, Afolabi OT, Komolafe EO, Fabusiwa FO, Groce N, et al. The social and economic impacts of epilepsy on women in Nigeria. Epilepsy Behav 2012;24:97–101. [10] Clarke BM, Upton ARM, Castellanos C. Work beliefs and work status in epilepsy. Epilepsy Behav 2006;9:119–25.

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