Stigma Impact on Moroccan Families of Patients With

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1 Original Research Stigma Impact on Moroccan Families of Patients With Schizophrenia Nadia Kadri, MD 1, Fatiha Manoudi, MD 2, Soumia Berrada, MD 3, Driss Moussaoui, MD 4 Objectives: First, to explore whether in Morocco, a non-western country, family members of patients with schizophrenia suffer from stigma and, if they do, which areas of their lives are most affected; and second, to explore family members knowledge about the illness and their attitudes toward the patients. Methods: The study was conducted among 100 family members accompanying patients with schizophrenia. We used a heteroquestionnaire that inquired about family members and patients sociodemographic data, family members knowledge of the patients illness, their attitudes and behaviours toward the patient, and their perception of stigma. Results: Family members mean age was years, SD 12.83; 69% were women; 38% had no education; and 77% had no professional activity. Most families (76%) reported having no knowledge about the illness. However, the illness was considered to be incurable (39%), severe (37%), chronic (80%), and handicapping (48%) and was believed to be caused by drug use (25%), stressing life events (such as conflict or bereavement; 46%), sorcery (25%), organic disturbance (30%), or heredity (23%). We found that most of the families suffer from stigma and discrimination. A total of 86.7% reported they have hard lives because of the illness, and 72% reported psychological suffering caused by sleep and relationship disturbances and a poor quality of life. Conclusions: In this study, we found that Moroccan families of patients with schizophrenia suffer from stigma. We found the same results in European, In North American, and in some Arab and Islam countries. Despite the belief that traditional societies are more supportive of the weak and the sick, stigma is a major burden in addition to that of the illness. (Can J Psychiatry 2004;49: ) Information on author affiliations appears at the end of the article. Clinical Implications We started a work group designed to explain schizophrenia to the patients and their families. We used different media to provide correct information about schizophrenia and to clarify the link between dangerousness, patients, and crime. The researchers worked with associations to develop intermediary steps between the families and the hospital, which decreased the burden on each of them. Limitations The sample is not representative of all Moroccan families of schizophrenia patients. We only studied patients in public hospitals. Key Words: stigma, families, schizophrenia patients, Morocco, Arabic country, epidemiologic study Can J Psychiatry, Vol 49, No 9, September

2 The Canadian Journal of Psychiatry Original Research Schizophrenia is a chronic mental illness. It begins mainly in adolescence or young adulthood and significantly disturbs the educational, social, and professional life of the patient. Its prevalence rates are estimated to vary from 2.5 to 5.3 per Annual incidence rates are estimated to vary from 0.2 to 0.6 per 1000 and are estimated to vary between 0.5% and 1% among the general population (1). Schizophrenia needs biological and psychosocial treatment. Schizophrenia, and mental illness in general, continues to be one of the most stigmatized of all illnesses. Psychiatric patients report that stigma may have devastating psychological and emotional effects. One definition of stigma is the social devaluation of a person because of a personal attribute, which leads to an experience of shame, disgrace, and social isolation (2). Various studies conducted in Western countries found that schizophrenia is linked to a high level of stigma (3,4). This study was conducted with the World Psychiatric Association (WPA) program against stigma and the discrimination of persons with schizophrenia. First, we explored whether family members of schizophrenia patients in Morocco suffer from stigma and, if they do, which areas of their lives are most affected. Second, we explored family members knowledge about the illness and their attitudes toward the patients. Subjects and Methods The study was conducted at the Ibn Rushd University Psychiatric Center of Casablanca, the most populated and industrialized city in the country; at the Berrchid Hospital, the oldest psychiatric hospital in the country; and at 2 outpatient clinics in Casablanca. Participants included 100 family members, each of whom accompanied and represented a schizophrenia patient. We established a heteroquestionnaire, which inquired about the family members and patients sociodemographic data, the family members knowledge about the illness, their attitudes and behaviours toward the patient, and their perception of stigma. The questionnaire comprised 55 questions and was formatted as follows: 15 questions inquired about the socioeconomic status of the patient and family and about the patient s lifestyle, 8 questions inquired about the family s knowledge of the illness and the causes and treatment of the illness, 6 questions inquired about the family members perception of the patient, 8 questions concerned the family members behaviour toward the patient, and 18 questions concerned how people behaved toward the family members and inquired about the members own quality of life in relation to the burden of the illness. 626 After obtaining oral consent for participating in the study, psychiatry postgraduates in their fifth year of education assisted families in completing the questionnaires. Before participating in the study, the students received specific training about the illness and about the use of the questionnaire. Finally, assistance was provided in the case of illiteracy. We performed data analysis on a PC computer, using Epi info 6.04, French version (5). The statistical analysis relied on the descriptive techniques of statistics. Results Family members mean age was years, SD 12.83; 69% were women; 50% were mothers; 18.4% were brothers; 9.4 % were fathers; 9.2% were sisters; 2% were wives; 38% had no education; and 77% had no professional activity. Patients mean age was years, SD 10.52; 90% were male; 80% had no professional activity; and 77% were single. The mean duration of illness was 10 years, SD 7.53, range 10 months to 30 years. Knowledge Most families (76%) reported having no knowledge about the patient s illness. Eighty-nine percent had never heard the word fossam, which is the classical Arabic word for schizophrenia. In the Moroccan colloquial Arabic, there is no specific word for this illness. Despite this ignorance, the illness was considered to be incurable (39%), severe (37%), chronic (80%), or handicapping (48%) and was thought to be caused by drug use (25%), stressful life events (such as conflict or bereavement; 46%), sorcery (25%), organic disturbance (30%), or heredity (23%). Only 11% of family members reported that the illness is consistent with a normal life. Most of the members (80.6%) think the illness causes severe suffering for the patient. Finally, 64.8% said the patient is able to work if he or she is given an easy and stable task. We stress that 11% of family members think the only way to help the patient is to lock them up. Attitude Most of the families (63.9%) do not give the patients difficult or important tasks because of lack of trust (34%) or because they consider the patient to be handicapped (14%). Families reported treating the patient with distrust (14%), as though the patient were mad (8%); with overprotection (59%); and with rejection and aggressiveness (15%). However, families also reported treating the patient like any other family member (37%). Stigma and Discrimination Most of the families studied suffer from stigma because of the patient s illness. A total of 86.7% of family members reported Can J Psychiatry, Vol 49, No 9, September 2004

3 they have hard lives because of the illness, and 72% reported psychological suffering, sleep and relationship disturbances, and poor quality of life. These families reported being harmed in many situations and reported experiences of distrust (15%), mockery (29%), and maltreatment (41%). Families also reported feeling neglect (34%), especially from neighbours and relatives, and reported feeling that people were afraid of them (29%). A total of 7% of family members were divorced; 2% of family members were ejected from a rent house; and 6% of fathers left the family, leaving the mothers to care for the patients alone. Discussion In this study, we found that Moroccan families of schizophrenia patients suffer from stigma. We found the same results in Western as we found in non-western countries, including some Arab and Islamic countries (6 9). These families deal with the patient s illness alone, and there is no protection system against the stigma (8). We found that the stigma toward patients with mental illness in Arab and Muslim countries has no relation to religion, compared with the relation to cultural and social aspects (10). The stigma has a pernicious effect at various levels (11). On a personal level, stigma obliges the patient and his or her family to remain socially isolated, which leads to the patient not recognizing him- or herself as ill, which thereby leads to treatment noncompliance. This has a consequence of psychiatric decline with a decreased possibility of reintegration and rehabilitation. Our study results support this scheme: the patients have poor social integration and live within the family with no external social support. At the familial level, family members are confronted with the illness burden. In Morocco, the specific situation of women, especially mothers, should be highlighted. Mothers of children with mental illness experience guilt. They dedicate their life to the patient, who perceives the mother as the first persecutory person. Further, the lives of mothers of mental illness patients are often much more hectic than the lives of other mothers: they provide cigarettes when the patient smokes, prepare food, help clean the patient, administer medication, and take the patient to the hospital for consultation or during psychotic episodes. Though these mothers continuously invest time and effort into ensuring that their son s or daughter s life is less miserable, they are perceived by the patient as a persecutory person. The patient s feelings of shame worsen the social isolation. In this study, 86.7% of families reported psychological suffering and a disturbance in their quality of life that is directly related to the illness. This result is in accordance with various studies that found a negative impact of the illness on both the families and the patients physical and psychological health and quality of life (12 14). We found that neighbours are among the most stigmatizing people for the patients and their families. However, Rabkin and others found that neighbours did not have negative attitudes toward the patients who were using the psychiatric facilities (15). This discordance might be explained by cultural differences and also by the variation in medical and social support. As stressed above, in Morocco, there is no other support in addition to outpatient and inpatient clinics. Therefore, patients with potential behaviour disturbances are most often at home. In their study, Thompson and others found the same difficulties with neighbors (14). On a political level, decision makers do not consider the illness to be a priority in mental health plans, and mental health is still not a government priority. At the community level, stigma negatively effects community members will to help people with mental disorders during the acute and rehabilitation phases. In Morocco, several associations are working in the field to help patients with mental illness, and recently, 2 associations of schizophrenia patients relatives began working specifically in the schizophrenia field. On an economic level, stigma completes the vicious circle whereby scarce financial resources do not permit the promotion of mental health in general or of helping people with schizophrenia in particular. Knowledge The lack of knowledge about mental illness might be a factor generating and (or) aggravating stigma against persons with schizophrenia and their families. One example of this lack is the ignorance concerning the word fossam, which means schizophrenia in classical Arabic. This ignorance probably leads to increased anxiety about the unknown. To help reduce this anxiety, the Ibn Rushd University Psychiatric Center of Casablanca has organized a weekly session with the families of inpatients to inform them about the nature of mental illness and the necessity of good compliance and to answer any questions the families might have on this matter. Interestingly, we have found that only one-third of the sample think that schizophrenia has a biological basis. This fact may impact medication compliance: The remaining 70% may be reluctant to comply with the medical treatment, leading to a worsening of the illness and a persistance of behavioural disturbance. About 25% of families think the illness is caused by sorcery. This belief may cause them to consult traditional healers and marabous, which will delay diagnosis and treatment and worsen the illness prognosis. Unpublished data from research conducted at the Ibn Rushd University Psychiatric Center showed that over 70% of patients do consult traditional healers before, during, or after medical treatment. Concerning the biological aspects, Angermeyer and others found a difference in beliefs between relatives and the general public (16). Relatives are aware that mental illness has mainly biological causes, while the public links mental illness to Can J Psychiatry, Vol 49, No 9, September

4 The Canadian Journal of Psychiatry Original Research psychosocial causes. In this matter, there is an urgent need for information, through the media, that will explain schizophrenia, the causes of the illness, and the false beliefs about a potential link between schizophrenia and dangerousness (17). Attitude Various relatives attitudes toward patients were noted as distrustful, overprotective, rejective, and aggressive. These attitudes reveal the relatives suffering and the relationship disturbances caused by the illness. We stress the importance of family members decreased tolerance. Especially in Moroccan families, family caregivers are constantly alone and deal with the illness without any psychosocial support, which eventually leads to the exhaustion of their hope and energy until, finally, they react poorly toward their own patient. The 2 associations of relatives and the treating teams could play a major role in preventing a burnout situation in the family. Support, help, and availability may be protective factors against this syndrome. Finally, we stress the importance of the high number of male patients included in the study (the prevalence of schizophrenia is actually equal between the 2 sexes). This phenomenon of more male than female patients being hospitalized and receiving consultation was also found by Louzi, who reported the demographic and clinical data on psychiatric emergencies at the Ibn Rushd University Psychiatric Center. From November 1987 to February 1988, Louzi found that male patients were hospitalized more frequently than female patients (18). Several explanations for this predominance of male hospitalizations are proposed. First, the weight of a cultural taboo for persons hospitalized in psychiatric settings carries a risk of rejection, nonmarriage, or divorce. Moreover, women are physically less aggressive and less dangerous than men, which contributes to increased tolerability from the family toward women suffering the same acute relapse. Conclusion Our daily work has led us to believe that the families of people with schizophrenia suffer from stigma owing to a family member s illness. This study aimed to verify this hypothesis. The study results clearly show that stigma does exist as a major burden in addition to the burden of the illness, despite the fact that traditional societies are supposed to be more supportive of the weak and the sick. The difficult economic and social situation, especially in urban and suburban areas, has a destructive effect on tolerance and solidarity in traditional societies. References 1. Jalensky A. Epidemiology of schizophrenia: a European perspective. Schizophr Bull 1986;12: Thara R, Srinivasan TN. How stigmatising is schizophrenia in India? Int Soc Psychiatry 2000;46: Wahl OF, Harman CR. Family views of stigma. Schizophr Bull 1989;15: Crisp AH, Gelder MG, Rix S, Meltzer HI, Rowlands OJ. Stigmatisation of people with mental illnesses. Br J Psychiatry 2000;177: Dean AG, Arner TG, Sunki GG, Friedman R, Lantinga M, Sangam S, and others. Epi Info, database and statistics program for public health professionals. Version 6.04 French edition. Atlanta: Centers for Disease Control; Shurka E. Attitudes of Israeli Arabs towards the mentally ill. Int J Soc Psychiatry 1983;29: Weiss MG, Jahdhav S, Raguram R, Vounatsou P, Littlewood R. Psychiatric stigma across cultures: local validation in Bangalore and London. Anthropology and Medicine 2001;8: Murphy JM. Psychiatric labeling in cross-cultural perspective. Science 1976;191: Shibre T, Negash A, Kullgren G, Kebede D, Alem A, Fekadu A, and others. Perception of stigma among family members of individuals with schizophrenia and major affective disorders in rural Ethiopia. Soc Psychiatry Psychiatr Epidemiol 2001;36: Haj-Yahia MM Attitudes towards mentally ill people and willingness to employ them in Arab society. Int Sociol 1999;14: Sartorius N. Programme global de Lutte contre la Stigmatisation et la Discrimination pour cause de Schizophrénie de l Association Mondiale de Psychiatrie. Revue Maghrébine de psychiatrie, rubrique Forum. Available: Accessed Angermeyer MC, Liebelt P, Matschinger H. Distress in parents of patients suffering from schizophrenia or affective disorders. Psychother Psychosomatik Med Psychol 2001;51: Markowitz, FE. The effects of stigma on the psychological well-being and life satisfaction of persons with mental illness. J Health Soc Behav 1998;39: Thompson EH, Doll W. The burden of families coping with the mentally ill: an invisible crisis. Family Relations 1982;31: Rabkin JG, Muhlin G, Cohen PW. What the neighbors think: community attitudes toward local psychiatric facilities. Community Ment Health J 1984;20: Angermeyer MC, Matschinger H. Relative s beliefs about the causes of schizophrenia. Acta Psychiatr Scand 1996;93: Wolff G, Pathare S, Craig T, Leff J. Community knowledge of mental illness and reaction to mentally ill people. Br J Psychiatry 1996;168: Louzi A. Les urgences psychiatriques à Casablanca. [MD thesis]. Casablanca (Morocco): Faculty of Medicine and Pharmacy; nr 332. Manuscript received May 2003, revised, and accepted December Professor of Psychiatry, University Psychiatric Center Ibn Rushd, Casablanca, Morocco. 2 Psychiatrist, University Psychiatric Center Ibn Rushd, Casablanca, Morocco. 3 Professor Assistant of Psychiatry, University Psychiatric Center Ibn Rushd, Casablanca, Morocco. 4 Professor of Psychiatry, University Psychiatric Center Ibn Rushd, Casablanca, Morocco. Address for correspondence: Dr N Kadri, University Psychiatric Center Ibn Rushd, Street Tarik Ibn Ziad, Casablanca, Morocco. n.kadri@casanet.net.ma 628 Can J Psychiatry, Vol 49, No 9, September 2004

5 Résumé : L effet des stigmates sur les familles marocaines de patients souffrant de schizophrénie Objectifs : Premièrement, découvrir si au Maroc, un pays non occidental, les membres de la famille de patients schizophrènes souffrent des stigmates et le cas échéant, quels domaines de leur vie sont les plus touchés; et deuxièmement, sonder les connaissances des membres de la famille sur la maladie et leurs attitudes à l endroit des patients. Méthodes : L étude a été menée auprès de 100 membres de la famille accompagnant des patients souffrant de schizophrénie. Nous avons utilisé un hétéroquestionnaire qui posait des questions sur les données sociodémographiques des patients et des membres de la famille, la connaissance qu ont les membres de la famille de la maladie des patients, leurs attitudes et leur comportement à l endroit du patient, et leur perception des stigmates. Résultats : La moyenne (ET) d âge des membres de la famille était de 47,44 ans (12,83); 69 % étaient des femmes, 38 % n avaient pas d instruction et 77 % n avaient pas d activité professionnelle. La plupart des familles (76 %) déclaraient n avoir aucune connaissance sur la maladie. Toutefois, la maladie était estimée incurable (39 %), grave (37 %), chronique (80 %), et invalidante (48 %). Les personnes interrogées croyaient qu elle était causée par l utilisation de drogues (25 %), les événements de la vie stressants (comme un conflit ou un deuil), la sorcellerie (25 %), une perturbation organique (30 %) ou l hérédité (23 %). Nous avons constaté que la plupart des familles souffrent des stigmates et de discrimination. Un total de 86,7 % déclaraient avoir des vies difficiles à cause de la maladie, et 72 % disaient souffrir psychologiquement à cause de difficultés du sommeil et relationnelles, et d une piètre qualité de vie. Conclusions : Dans cette étude, nous avons constaté que les familles marocaines de patients schizophrènes souffrent des stigmates. Les mêmes résultats ont été conclus dans des pays non occidentaux, et dans de nombreuses autres parties du monde. Malgré la croyance que les sociétés traditionnelles soutiennent mieux les faibles et les malades, les stigmates existent et sont un fardeau majeur qui s ajoute à celui de la maladie. Can J Psychiatry, Vol 49, No 9, September