Psychosocial Aspects of Epilepsy in Oman: Attitude of Health Personnel

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1 Epilepsia, 42(11): , 2001 Blackwell Science, Inc. International League Against Epilepsy Psychosocial Aspects of Epilepsy in Oman: Attitude of Health Personnel *Samir Al-Adawi, Salem Al-Ismaily, *Rodger Martin, *Aziz Al-Naamani, Kassim Al-Riyamy, Masoud Al-Maskari, and *Ala Aldin Al-Hussaini *Department of Behavioral Sciences & Psychiatry, College of Medicine, Sultan Qaboos University, Muscat, Sultanate of Oman; Department of Management, University of St. Andrews, St. Andrews, Scotland; Department of Pharmacy, Sultan Qaboos University Hospital, Muscat, Sultanate of Oman; and Department of Medicine, College of Medicine, Sultan Qaboos University, Muscat, Sultanate of Oman Summary: Purpose: To assess with a questionnaire the awareness and attitudes of the doctors in Oman toward epilepsy. Attitudes of society toward epilepsy have a wide-ranging influence, affecting issues as diverse as compliance with treatment and doctor patient communication. Recent studies in both developing and developed countries suggest that within the medical profession, there is a lack of knowledge and negative attitudes toward people with epilepsy (PWE). There are no equivalent studies for Oman or the Arab world. Methods: The questionnaire included queries on the backgrounds of the physicians, including their training and qualifications, the main sources of their knowledge of epilepsy, as well as their perceptions of the attributes and care requirements of PWE. Results: Sixty-two percent (n 121) of those questioned, who were medical personnel working in different regions of Oman, responded. The results suggest that, despite coming from diverse cultural backgrounds and nationalities, the practicing doctors in Oman gained knowledge of epilepsy much earlier than did their counterparts in developed countries. The majority of the respondents thought that PWE have more propensities toward dysfunctional personality and behavioral characteristics than do normal people. On questions relating to public image, our respondents opined that, although the general public is negative toward PWE, the realities regarding PWE should be publicized because PWE are capable of having a normal family life and being an integral part of society. Conclusions: In spite of having an earlier exposure to seizures and sympathetic acceptance of PWE, negative views still persist on matters related to cognitive and behavior domains. It is concluded that a developing country such as Oman must inculcate more realistic perceptions and attitudes among their doctors toward PWE. Key Words: Epilepsy Crosscultural Attitude Psychosocial Medical personnel Developing country Oman. Historical and cross-cultural studies on people with epilepsy (PWE) have reported active discrimination, high rates of psychosocial problems and poor compliance with treatment (1 4). More recently Kokkonen et al. (5) reported that the social course of epilepsy is largely associated with neurologic and cognitive impairments other than epilepsy and that the social experience of epilepsy causes considerable problems for patients and their relatives in many parts of the world (6 11). It has been suggested that social attitudes are more devastating than the disorder itself, and other family members suffer because an immediate family member has epilepsy (12,13). Nationwide opinion polls on the knowledge of Revision accepted December Address correspondence and reprint requests to Dr. S. Al-Adawi at Department of Behavioral Sciences & Psychiatry, College of Medicine, Sultan Qaboos University, P.O. Box 35, Al-Khoudh 123, Muscat, Sultanate of Oman. adawi@squ.edu.om and public attitudes toward epilepsy have been undertaken in several countries (14 16). Caveness and Gallup s (17) longitudinal studies and others (10,12) have shown increased awareness and social acceptance of epilepsy, but negative attitudes still persist in many countries (8,10). Surprisingly, many of the stereotyped attitudes about epilepsy that have been identified in the general community also were found in the medical profession (18 22). Medical education has been reevaluated in light of the prevailing attitude in some developed countries (23,24). Only a few studies have reported the medical profession s awareness and attitude toward PWE in developing countries (19), and there are no equivalent data for Oman or the Arab world. We investigated general and specific knowledge regarding PWE among practicing doctors in Oman, an Arab Gulf country. Oman offers an interesting study area because comprehensive health services have only re- 1476

2 PSYCHOSOCIAL ASPECTS IN OMAN 1477 cently been introduced; its diverse society has experienced minimal acculturation, and many of its customs (e.g., consanguinity) and geographic features (mountainous) may exacerbate the incidence of epilepsy (25). The Oman health care system is staffed by physicians from many parts of the world and offers an opportunity to audit the effect of worldwide campaigning to eradicate negative stereotypes toward PWE and furthermore to understand cross-cultural attitudes among health personnel in a developing country. MATERIALS AND METHODS The questionnaire was adapted from Davies and Scambler (20) and Beran and Read (18) and modified to accommodate some sociocultural aspects of Oman (e.g., the perceived role of the traditional healer in the management of epileptic disorder). The adapted questionnaire contained items on the backgrounds of the physicians, including training and qualifications, the main sources of their knowledge of epilepsy, perceived attributes of PWE, attitudes toward PWE, and care of PWE. The questionnaires were distributed to doctors working in different parts of Oman during a conference on Primary Health Care held at Sultan Qaboos University, Muscat, Oman. Those attending the conference took responsibility for distributing the questionnaires to doctors working in primary health care as family and community doctors in their respective regions of Oman and returning them. RESULTS Demographic variables The results of demographic information are shown in Table 1. One hundred twenty-one doctors participated in the study, 62% of questionnaires distributed. Of the doctors, 41 (34%) were women and 80 (66%) men. Their mean ages for the whole sample were ± 9.98 years TABLE 1. Sample demographic characteristics Mean (SD) Age Total (9.98) Female (7.03) Male (10.89) Subject (n, %) Female 41 (34%) Male 80 (66%) Nationality (n, %) Indian 50 (41%) Omani 35 (29%) Sri Lankan 18 (15%) Egyptian 7 (6%) Pakistani 5 (4%) Filipino 4 (3%) Jordanian 2 (2%) TABLE 2. Source of knowledge When did you first witness an epileptic seizure? At what point did you learn most about epilepsy? Prestudent days Medical school Junior hospital post Senior hospital post Never seen a seizure Cannot remember (range, years); for women, ± 7.03 years, and for men, ± years; with men being slightly older than women. Fifty (41%) were Indian nationals, 35 (29%) were Omanis, 18 (15%) were Sri Lankans, seven (6%) were Egyptians, five (4%) were Pakistanis, four (3%) were Filipinos, and two (2%) were Jordanians. There was no relation between nationalities, age, gender, and overall scores of the assessments (to be become apparent later). Of these, 40% had acquired an additional qualification in India, and 25%, in the United Kingdom. From data supplied by the Ministry of Health, this study group is a representative sample of the doctors practicing in Oman (26). Sources of knowledge of epilepsy The results concerning our respondents sources of knowledge are depicted in Table 2. The doctors were asked when they had first witnessed an epileptic seizure, at what stage they had gained most of their knowledge of epilepsy, and whether they had encountered any person with epilepsy during their practice in Oman. In response to the first question, 62.8% said they saw their initial seizure in their prestudent days, 17.4% while at medical school, 9.9% in junior, and 5.8% in senior hospital posts. The remaining 4.2% did not specify. On the second point about where they had learned most about epilepsy, 5.8% replied in their prestudent days, 61.2% while in medical school, 20.7% in junior hospital posts, 6.6% in senior hospital posts, and 5.8% were unable to specify. Perceived attributes of people with epilepsy The doctors were asked to judge whether a list of 15 attributes were more or less common among PWE than among other normal persons. The respondents were told to answer with reference to people with wellcontrolled epilepsy. The results are presented in Table 3. Three aspects of these results must be highlighted. First, on eight of the 15 attributes, the majority of our subjects responded that PWE have more tendencies toward accidents at work, emotional problems, absenteeism, behavioral problems, mood swings, irritability, aggression, and a tendency to violence. Second, three attributes (ability to concentrate, ability to assume responsibility, and pro-

3 1478 S. AL-ADAWI ET AL. TABLE 3. Attributes of people with epilepsy Attributes Less More No difference Accident at work Emotional problems Absenteeism (school or work) Behavioral problems Mood swings Irritability Aggression Tendency to violence Ability to concentrate Ambition Ability to assume responsibility Productivity (school or work) Intelligence Ability to accept discipline Ability to relate to others ductivity) were thought to be less pronounced among PWE. Third, on the remaining four attributes (ambition, intelligence, ability to accept discipline, and ability to relate to others), our subjects perceived the PWE as having these attributes or problems as much as normal people. On the basis of the attributes listed, 38% considered PWE to have these personality and behavioral characteristic much more than normal people, 33% much less than normal people, whereas 28% felt there were no differences. Attitudes toward people with epilepsy Respondents also were invited to express a measure of agreement or disagreement with 16 statements about PWE, ranging broadly over such areas as lay knowledge and attitudes, family relationships, and employment prospects. The respondents were told to answer with reference to people with well-controlled epilepsy, implying seizure-free PWE. Public images The results are presented in Table 4. First, 69.4% replied that PWE contribute as much to society as do other people, 13.2% were neutral, and 17.4% disagreed. Second, 75.2% felt that most people do not understand epilepsy, whereas 12.7% disagreed; 45.5% agreed and 32.2% disagreed with the notion that the general community is afraid of PWE. Third, 44.6% agreed and 35.5% disagreed that PWE are treated as a minority. In spite of these varied opinions on public image, there was strong support (68.9%) that there should be more publicity about epilepsy, and only 16% disagreed. Family relationships The results are presented in Table 5; 63.6% of the doctors disagreed with the statement that PWE do not form close relationships easily, whereas 19.8% felt they did; 73.6% thought that PWE should be free to marry, but surprisingly, 16.5% felt they should not, and 75.2% felt PWE should be free to have children, and 13.2% disagreed. On the critical statement that PWE do not have a normal family life, 57% disagreed, 23.1% remained neutral, and 19.8 % agreed. Finally, 55.4% agreed that other family members suffer when an immediate family member has epilepsy, 21.5% were neutral, and 23.1% disagreed. Employment The results are presented in Table 6: 49.6 and 42.1% of the respondents saw no reason why PWE should avoid work that is either physically or cognitively demanding; 35.5% disagreed with physically demanding work, and 43%, with mentally demanding. Of the respondents, 55.5% agreed and 14% disagreed that many employers, who claimed not to discriminate against PWE, in fact do. On jobs, 57% agreed that job opportunities for those with epilepsy are limited, whereas 29.8% disagreed. Consistent with this view, 79.3% were of the opinion that PWE should not disclose their epilepsy to their prospective employers, and only 5% disagreed. Conversely, nearly 83.5% thought that PWE should declare their epilepsy to the driving licensing authorities. Care of people with epilepsy On a question about people with well-controlled epilepsy, 42.9% disagreed, and 38.7% agreed that PWE suffer more from the diagnosis than from the seizures; 63.8% of our respondents thought that PWE would not benefit from professional counseling to help them adjust to their condition. Asking them who should provide therapy for PWE, 80% said the neurologist, 60% said the psychiatrist or family/community, and none suggested involvement of traditional practitioners (Table 7). DISCUSSION Our results showed that, despite their diverse cultural backgrounds, the majority of doctors in Oman had ini- TABLE 4. Attitudes toward people with epilepsy: public image People with epilepsy contribute as much to society as other people Most people do not understand epilepsy Most people are afraid of being with people who have epilepsy People with epilepsy are treated as a minority group There should be more publicity about epilepsy

4 PSYCHOSOCIAL ASPECTS IN OMAN 1479 TABLE 5. Attitudes toward people with epilepsy: family relationships People with epilepsy cannot easily make close friendships People with epilepsy should not marry People with epilepsy should not have children People with epilepsy do not have a normal family life Other family members suffer because an immediate family member has epilepsy tially encountered a person with epilepsy before their medical training and had acquired most of their exposure to seizure disorders during medical school. This contrasts with an earlier study by Beran and Read (18), who found, in their sample of general practitioners, that earliest exposure occurred after qualification. However, it might be compatible with the finding that there are higher incidences of epilepsy and lower provision of treatment in developing countries, where our respondents mainly originated (27,28). This could mean that doctors in Oman were likely to have encountered cases of epilepsy much more frequently in day-to-day life, compared with those in developed countries. Does such higher incidence of contact increase mutual understanding as postulated by the contact hypothesis (29)? On perceived attributes of PWE, the doctors were asked to judge whether 15 attributes were more or less common among people with well-controlled epilepsy than among other normal persons. The respondents were requested to give their answers with reference to people with well-controlled epilepsy. On the basis of the attributes listed, the majority thought of PWE as having many more problematic personality traits and behavioral characteristics than normal people. It is of interest that similar trends have been noted in other studies, in which doctors judged PWE much more negatively compared with a normal population (20). It is to be noted that the personality and behavior attributes mentioned in our questionnaire are found in the healthy population and are not unique to PWE (30). The present study also explored three attitudinal aspects of PWE including public image, family relationship, and employment. On public image, our sample thought that those with epilepsy should not be treated as a minority group. This less-discriminating attitude contrasts with the Davies and Scambler (20) study of general practitioners who thought that the PWE are treated as a minority. On other attributes related to public images, the majority of our sample thought that the general population misunderstands PWE and naturally thought that there is a need to publicize the true nature of epilepsy. Although the majority thought that other family members suffer because an immediate family member has epilepsy and there is discrimination against PWE, there was a consensus that PWE can form close relationships, marry, procreate, fulfill normal family life, and contribute to the work force, even in those jobs requiring physical and mental strain. Conversely, although controversy prevails on whether there should be secrecy or openness concerning the diagnosis of epilepsy (31), the majority were of the opinion that PWE should not disclose their disability to their prospective employers. Similar observations were noted in Nigeria among medical personnel (19) and among the general population in Sri Lanka (32). Finally, the majority thought that PWE should declare their epilepsy to the driving licensing authorities. In general, the attitudes of doctors in Oman in the present study were less stereotyped and negative. Thus our finding is seemingly inconsistent with the findings of previous researchers (18 22,33). It is possible that the positive views of doctors in Oman toward PWE were influenced by the decade of medical education stipulated to eradicate the negative attitude prevailing among health personnel toward PWE (21,24,34); alternatively, this positive attitude may be an integral part of social cultural factors, as the chronic course of illness in traditional communities is accommodated with sympathetic acceptance and assisted in a culturally prescribed way (35). Future studies must examine how chronic illness is conceptualized in Omani society and how doctors perceive such conceptualizations. TABLE 6. Attitudes toward people with epilepsy: employment People with epilepsy should avoid physically strenuous work People with epilepsy should avoid mentally stressful work Many employers who claim not to discriminate against people with epilepsy, in fact, do Job opportunities are very restricted for people with epilepsy People with epilepsy should declare their epilepsy to prospective employers People with epilepsy should declare their epilepsy to driving authorities

5 1480 S. AL-ADAWI ET AL. TABLE 7. Care of people with epilepsy % % Many people with epilepsy suffer more from the diagnosis than they do from seizures Many people with epilepsy would benefit from professional counseling to help them adjust to their condition The neurologist is the single most important therapist in the treatment of a person with epilepsy The psychiatrist is the single most important therapist in the treatment of a person with epilepsy The family/community doctor is the single most important therapist in the treatment of a person with epilepsy The traditional healer is equally capable in the treatment of a person with epilepsy % Previous studies have reported that the psychosocial course of epilepsy can cause more distress than seizures themselves (15,16,36). In Oman, the attitude of health personnel showed no consensus on the idea that PWE suffer from their diagnosis. In developing countries like Oman, psychosocial services are rarely available, and there is a high level of dissatisfaction even in developed countries where psychosocial interventions are accessible (37,38). Interestingly, medical personnel in Oman thought that PWE would not benefit from counseling. Finally, although treatment of epilepsy is the prerogative of traditional healers in many parts of the world (39), our respondents thought that traditional healing plays no role in treating seizures. This view, of course, contradicts ongoing campaigns to train traditional healers to recognize and refer cases of epilepsy to modern health care professionals (40). Some limitations of this study should be highlighted. First, considerations of the importance of bias owing to the nonrespondent group, as 38% did not respond to our questionnaire. Second, our respondents might have answered differently in face-to-face interviews than in selfadministered questionnaires. Although personal interviews would have been preferable, the fact that healthcare centers in Oman are vastly dispersed, with some places quite inaccessible by normal transport, made it logistically impossible to conduct interviews in the present design. Finally, the question remains whether these attitude differences (however realistic and justifiable) would translate into any form of discrimination against PWE in clinical practice or in real life (41,42). These findings indicate that our respondents have had an earlier exposure to seizures and are generally sympathetic to PWE. There are, however, some negative attitude pertaining to cognitive and behavior domains. As Allport (43) informs us, attitudes determine for each individual what he will see and hear, what he will think and what he will do (pp ). However, it is well established that attitudes are not permanent; rather, they are constantly evolving. To bring epilepsy out of shadow (44), time and effort should therefore be invested to educate doctors in Oman to develop more realistic attitudes toward PWE, to appreciate that the person with seizures has as much potential as anyone else, and to see that in most cases, our attitudes cause more problems than the seizure itself (45,46). As has often been suggested (24), physicians are among the makers of opinion in their respective societies and tend to influence the decisions made by the public and by the government. They should therefore be those first targeted by any campaign aimed at eradicating negative perceptions of PWE. As the Omani expression goes, If you want to kill a snake, you have to hit it on its head. Acknowledgment: We are grateful to all doctors who returned completed questionnaires. Our thanks go to Dr. Dirk Deleu and Mr. Sajjeev Antony for providing helpful comments on earlier versions of this manuscript and to Miss Claudia Cooper for technical assistance. 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