544768 research-article2014
ISP0010.1177/0020764014544768International Journal of Social PsychiatryCaqueo-Urízar et al.
E CAMDEN SCHIZOPH
Article
Beliefs about the causes of schizophrenia among Aymara and non-Aymara patients and their primary caregivers in the Central–Southern Andes
International Journal of Social Psychiatry 2015, Vol. 61(1) 82–91 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0020764014544768 isp.sagepub.com
Alejandra Caqueo-Urízar1, Joshua Breslau2 and Stephen E Gilman3,4
Abstract Aim: The aim of this study is to investigate differences in the beliefs about the causes of schizophrenia between Aymara and non-Aymara patients with schizophrenia and their primary caregivers. Ethnic background plays an important role in the formation of beliefs regarding the causes of schizophrenia, and there have been no prior studies on such beliefs among the Aymara, an indigenous community with a population of about 2 million people living in the Andes. We focused on three systems of beliefs distinguished in the literature: biological, psychosocial and magical–religious. Methods: The sample comprised 253 patients (n = 117 Aymara, and n = 136 non-Aymara) of public mental health centers in Chile (33.6%), Peru (33.6%) and Bolivia (32.8%) with a diagnosis of schizophrenia, and each patient’s primary caregiver. We administered to patients and caregivers a questionnaire with scales assessing the perceived causes of schizophrenia. Linear regression models were fitted to compare differences in the levels of causal beliefs between Aymara and nonAymara patients and caregivers, and to identify socio-demographic and clinical predictors of different types of beliefs about the causes of schizophrenia. Results: Adjusted for socio-demographic and clinical covariates, levels of psychosocial beliefs were significantly higher for Aymara caregivers (0.33, 95% confidence interval (CI) = 0.05, 0.62) than non-Aymara caregivers. Conclusions: Contrary to expectations, beliefs about the causes of schizophrenia among Aymara are not more magical– religious than those of their non-Aymara counterparts. It may be necessary for mental health staff members to evaluate beliefs about the disorder, especially in ethnic minorities, before applying a standard model of treatment. Keywords Beliefs, Aymara, schizophrenia, Latin America
Introduction Large-scale deinstitutionalization of psychiatric patients has resulted in a dramatic shift in the burden of caregiving from health care professionals to family members. The beliefs that family members have regarding the causes of their relative’s problems profoundly shape the caregiving process. It is therefore important to understand the specific types of causal beliefs held by family members. Prior studies demonstrate that the family’s cultural background provides a framework for understanding the origins of psychiatric illness as well as for interpreting the changes in mental functioning that family members observe in their relative experiencing a psychiatric disorder – for example, through shared “social representations” of disorder (Holzinger, Kilian, Linderbach, Petscheleit, & Angermeger, 2003). Features of the mental health system itself may also influence family members’ causal beliefs (Kurihara, Kato,
Revenger, & Tirta, 2006), and are also important to consider in studying causal beliefs. Studies of patients’ and caregivers’ beliefs about the causes of schizophrenia are important because beliefs can influence help-seeking, adherence to treatment, disease 1Departamento
de Filosofía y Psicología, Universidad de Tarapacá, Arica, Chile 2Health Division, RAND Corporation, Pittsburgh, PA, USA 3Department of Social and Behavioral Sciences and Department of Epidemiology, Harvard School of Public Health, Boston, MA, USA 4Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA Corresponding author: Alejandra Caqueo-Urízar, Departamento de Filosofía y Psicología, Universidad de Tarapacá, Avenida 18 de Septiembre 2222, Arica, Chile. Email: [email protected]
Downloaded from isp.sagepub.com at East Tennessee State University on June 23, 2015
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Caqueo-Urízar et al. management and, as a result, clinical outcomes. Some studies in this area show that patients with better clinical outcomes hold a psychosocial model of beliefs, wherein the main causes of schizophrenia originate from external factors such as economic conditions, stressors and educational attainment (Phillips, Li, Storup, & Xin, 2000; Saravanan et al., 2007). Causal beliefs are in part dependent on the degree of patients’ insight. Studies show that patients with better insight were more likely to hold a biomedical causal model of beliefs, wherein the causes of schizophrenia originate from inherited factors, brain disorder, and fatigue (Aguglia, De Vanna, Onor, & Ferrara, 2002; Phillips, Li, Storup, & Xin, 2000; Saravanan et al., 2007; Zafar et al., 2008). In contrast, patients with worse insight were more likely to hold magical-religious beliefs in which psychiatric symptoms are thought to originate from external factors over which individual patients have no control; thus, causal beliefs characterized as magical-religious tend to negatively impact clinical outcomes, partly because of treatment delays (Kulhara, Avashi, & Shama, 2000; Saravanan et al., 2007; Borras et al., 2007). In addition to insight, demographic factors such age, gender and education may be related to patients’ and caregivers’ beliefs about the causes of schizophrenia (Farina et al., 1981; Furnham & Chan, 1978; Brockman & D’Arcy, 1978). Supernatural beliefs are generally more common among patients and caregivers’ with less education, (Kurihara et al., 2006; Kate, et al., 2012), whereas biological and psychosocial beliefs about mental illness are generally related to higher levels education (Phillips et al., 2000; Srinivasan & Thara, 2001). There are exceptions to these patterns however. For instance, a study in Israel there were no differences on gender or patients’ educational level (Al-Krenawi, 1999). Similar results were reported in a recent study in India, which did not find any correlation between the beliefs of patients and caregivers and demographic variables of age, sex, education, and employment (Balhara & Yadav, 2012). Also in this country, patients with schizophrenia were more likely to hold mystical beliefs, but that was not the same for the caregivers that live on urban areas (Kate, Grover, Kulhara, & Nehra, 2012; Saravanan et al., 2007; Srinivasan & Thara, 2001). Differences in cultural models of schizophrenia also vary across European countries. A study in Spain found that caregivers believe that the main cause of schizophrenia is related to psychosocial factors (Agras, Crespo, Silveira, & Blanco, 2002). In contrast, a study in Germany found that relatives (particularly mothers) are more likely than individuals in the general population to believe schizophrenia is caused by biological and hereditary factors, a finding that Angermeyer and Matschinger (1996) attribute to relatives’ greater exposure to biomedically oriented psychiatrists. Outside of Europe, there is considerable variability in patients’ and caregivers’ causal beliefs. In China, families of patients with schizophrenia predominantly endorsed
social and interpersonal factors and psychological problems as causes of their relative’s schizophrenia, and rarely endorsed biomedical causes (Phillips et al., 2000). In India, patients with schizophrenia commonly subscribe to supernatural causal models, but caregivers rarely do so (Kate et al., 2012; Saravanan et al., 2007; Srinivasan & Thara, 2001). Bedouin-Arab patients in southern Israel uniformly attributed their symptoms of neurotic and psychotic illnesses to supernatural forces (Al-Krenawi, 1999). It is necessary to consider two important points regarding the studies on beliefs about schizophrenia: the first one is the inconsistency in the results and the second one is that there is scarce literature on what happens within different geographic contexts, and even less among ethnic minorities in Latin America who have high rates of treatment discontinuation (Vicente, Kohn, Rioseco, Saldivia & Torres, 2005). This could be due in part to the discrepancy between the shared models of beliefs within ethnic minority groups and the prevailing biomedical model characteristic of urban mental health clinics. Enhancing our understanding of causal models held by ethnic minority groups is therefore important for improving engagement with service provides and ultimately better psychiatric care (US Department of Health & Human Services (USDHHS), 2001, Tompson, 1995). This study is the first to address Aymara caregivers and psychiatric patients who are residents of three South American countries: western Bolivia, southern Peru and northern Chile. The Aymara culture, with a population of 2 million people, has lived in the Andes Mountains for centuries, however, recent generations of Aymara have undertaken a massive migration, moving from rural towns in the foothills to large cities (Köster, 1992; Van Kessel, 1996; Nuñez & Cornejo, 2012; Gundermann, 2000; Zapata, 2007). When discussing the Aymara ‘community’, we remain cognizant that Aymara tradition is not monolithic, and that regional and also local variations exist with respect to the intensivity of certain cultural or social practices – for example, the Aymara language – and to the general degree of intercultural involvement. That said, there remains a strong coherence in the Aymara tradition regarding certain basic principles of life, behavior, rites and – for the specific case that interests us here – ways to understand mental illness (Fernández Juárez, 2002). Our previous study of coping strategies in Aymara caregivers of patients with schizophrenia showed that they tend to use more spiritual help (Caqueo-Urízar, Gutiérrez-Maldonado, Ferrer-García, & Miranda-Castillo, 2012). Similarly, the Aymara family in the community leads the patient, in the first instance, to the healer (Yatiri) who performs a series of rituals to cure the mental disorder. These rites are related to magical–religious beliefs, minerals and herbs (Leiva, 2008). The aim of the current study is to investigate differences in the beliefs about the causes of schizophrenia
Downloaded from isp.sagepub.com at East Tennessee State University on June 23, 2015
84
International Journal of Social Psychiatry 61(1)
between Aymara and non-Aymara patients with a diagnosis of schizophrenia and their primary caregivers. We analyzed three systems of beliefs: biological, psychosocial and magical–religious. We hypothesized that there would be a greater amount of magical–religious beliefs about schizophrenia, fewer biological beliefs (due to limited access to this type of knowledge) and a greater amount of psychosocial beliefs (since these are related to problems in education, work and finance) in Aymara caregivers and patients versus non-Aymara. We also investigated the socio-demographic and clinical correlates of magical, psychosocial and biological beliefs among patients and caregivers.
Methods Sample The process of recruitment of Aymara and non-Aymara patients and caregivers took place in public health sector clinics in each country. We selected the largest public health clinic in each region. The first author reviewed the lists of patients and caregivers who were attending each center, and the research team made assessments over a 3-month period in each country. Patients were invited to participate as they came for their monthly follow-up visits, usually accompanied by their key caregiver. Most of the people agreed to participate. The study sample comprised patients with schizophrenia who were receiving services from mental health clinics in the Central–Southern Andean regions of northern Chile, southern Peru and central–western Bolivia, and each patient’s primary caregiver, defined as the person who fulfills the primary caring role and spends more time than anyone else with the patient in the task of caring. The sample included both Aymara and non-Aymara patients and caregivers. Aymara patients and caregivers were identified by Aymara surnames as established by legislation regarding indigenous peoples in the three countries, or Aymara self-identification, being this last criterion, the most important for the selection. Both the Aymara and non-Aymara patients live in the same urban areas, are served by the same mental health centers and have roughly comparable socio-demographic characteristics. We applied a small set of exclusion criteria to the patient (being in a state of psychotic crisis or having a sensory or cognitive type of disorder that prevents being evaluated) and caregiver (presence of organic symptomatology; having a psychoactive substance abuse disorder; having a sensory or cognitive type of disorder that prevents interviewing) groups to ensure ability to participate fully in the interviews. The final sample included 253 patients with an International Classification of Diseases (ICD)-10 diagnosis of schizophrenia (World Health Organization (WHO), 1992) and 253 primary caregivers (33.6% from Chile, 33.6% from Peru
and 32.8% from Bolivia). Interviews were conducted between May 2012 and February 2013. Although these three Latin American countries share several cultural characteristics, there are some differences between them, which should be made explicit: thus, in Bolivia, 13.6% of the population lives with less than US$1 per day; in Peru, this population is 5.9% and it is
ISP0010.1177/0020764014544768International Journal of Social PsychiatryCaqueo-Urízar et al.
E CAMDEN SCHIZOPH
Article
Beliefs about the causes of schizophrenia among Aymara and non-Aymara patients and their primary caregivers in the Central–Southern Andes
International Journal of Social Psychiatry 2015, Vol. 61(1) 82–91 © The Author(s) 2014 Reprints and permissions: sagepub.co.uk/journalsPermissions.nav DOI: 10.1177/0020764014544768 isp.sagepub.com
Alejandra Caqueo-Urízar1, Joshua Breslau2 and Stephen E Gilman3,4
Abstract Aim: The aim of this study is to investigate differences in the beliefs about the causes of schizophrenia between Aymara and non-Aymara patients with schizophrenia and their primary caregivers. Ethnic background plays an important role in the formation of beliefs regarding the causes of schizophrenia, and there have been no prior studies on such beliefs among the Aymara, an indigenous community with a population of about 2 million people living in the Andes. We focused on three systems of beliefs distinguished in the literature: biological, psychosocial and magical–religious. Methods: The sample comprised 253 patients (n = 117 Aymara, and n = 136 non-Aymara) of public mental health centers in Chile (33.6%), Peru (33.6%) and Bolivia (32.8%) with a diagnosis of schizophrenia, and each patient’s primary caregiver. We administered to patients and caregivers a questionnaire with scales assessing the perceived causes of schizophrenia. Linear regression models were fitted to compare differences in the levels of causal beliefs between Aymara and nonAymara patients and caregivers, and to identify socio-demographic and clinical predictors of different types of beliefs about the causes of schizophrenia. Results: Adjusted for socio-demographic and clinical covariates, levels of psychosocial beliefs were significantly higher for Aymara caregivers (0.33, 95% confidence interval (CI) = 0.05, 0.62) than non-Aymara caregivers. Conclusions: Contrary to expectations, beliefs about the causes of schizophrenia among Aymara are not more magical– religious than those of their non-Aymara counterparts. It may be necessary for mental health staff members to evaluate beliefs about the disorder, especially in ethnic minorities, before applying a standard model of treatment. Keywords Beliefs, Aymara, schizophrenia, Latin America
Introduction Large-scale deinstitutionalization of psychiatric patients has resulted in a dramatic shift in the burden of caregiving from health care professionals to family members. The beliefs that family members have regarding the causes of their relative’s problems profoundly shape the caregiving process. It is therefore important to understand the specific types of causal beliefs held by family members. Prior studies demonstrate that the family’s cultural background provides a framework for understanding the origins of psychiatric illness as well as for interpreting the changes in mental functioning that family members observe in their relative experiencing a psychiatric disorder – for example, through shared “social representations” of disorder (Holzinger, Kilian, Linderbach, Petscheleit, & Angermeger, 2003). Features of the mental health system itself may also influence family members’ causal beliefs (Kurihara, Kato,
Revenger, & Tirta, 2006), and are also important to consider in studying causal beliefs. Studies of patients’ and caregivers’ beliefs about the causes of schizophrenia are important because beliefs can influence help-seeking, adherence to treatment, disease 1Departamento
de Filosofía y Psicología, Universidad de Tarapacá, Arica, Chile 2Health Division, RAND Corporation, Pittsburgh, PA, USA 3Department of Social and Behavioral Sciences and Department of Epidemiology, Harvard School of Public Health, Boston, MA, USA 4Department of Psychiatry, Massachusetts General Hospital, Boston, MA, USA Corresponding author: Alejandra Caqueo-Urízar, Departamento de Filosofía y Psicología, Universidad de Tarapacá, Avenida 18 de Septiembre 2222, Arica, Chile. Email: [email protected]
Downloaded from isp.sagepub.com at East Tennessee State University on June 23, 2015
83
Caqueo-Urízar et al. management and, as a result, clinical outcomes. Some studies in this area show that patients with better clinical outcomes hold a psychosocial model of beliefs, wherein the main causes of schizophrenia originate from external factors such as economic conditions, stressors and educational attainment (Phillips, Li, Storup, & Xin, 2000; Saravanan et al., 2007). Causal beliefs are in part dependent on the degree of patients’ insight. Studies show that patients with better insight were more likely to hold a biomedical causal model of beliefs, wherein the causes of schizophrenia originate from inherited factors, brain disorder, and fatigue (Aguglia, De Vanna, Onor, & Ferrara, 2002; Phillips, Li, Storup, & Xin, 2000; Saravanan et al., 2007; Zafar et al., 2008). In contrast, patients with worse insight were more likely to hold magical-religious beliefs in which psychiatric symptoms are thought to originate from external factors over which individual patients have no control; thus, causal beliefs characterized as magical-religious tend to negatively impact clinical outcomes, partly because of treatment delays (Kulhara, Avashi, & Shama, 2000; Saravanan et al., 2007; Borras et al., 2007). In addition to insight, demographic factors such age, gender and education may be related to patients’ and caregivers’ beliefs about the causes of schizophrenia (Farina et al., 1981; Furnham & Chan, 1978; Brockman & D’Arcy, 1978). Supernatural beliefs are generally more common among patients and caregivers’ with less education, (Kurihara et al., 2006; Kate, et al., 2012), whereas biological and psychosocial beliefs about mental illness are generally related to higher levels education (Phillips et al., 2000; Srinivasan & Thara, 2001). There are exceptions to these patterns however. For instance, a study in Israel there were no differences on gender or patients’ educational level (Al-Krenawi, 1999). Similar results were reported in a recent study in India, which did not find any correlation between the beliefs of patients and caregivers and demographic variables of age, sex, education, and employment (Balhara & Yadav, 2012). Also in this country, patients with schizophrenia were more likely to hold mystical beliefs, but that was not the same for the caregivers that live on urban areas (Kate, Grover, Kulhara, & Nehra, 2012; Saravanan et al., 2007; Srinivasan & Thara, 2001). Differences in cultural models of schizophrenia also vary across European countries. A study in Spain found that caregivers believe that the main cause of schizophrenia is related to psychosocial factors (Agras, Crespo, Silveira, & Blanco, 2002). In contrast, a study in Germany found that relatives (particularly mothers) are more likely than individuals in the general population to believe schizophrenia is caused by biological and hereditary factors, a finding that Angermeyer and Matschinger (1996) attribute to relatives’ greater exposure to biomedically oriented psychiatrists. Outside of Europe, there is considerable variability in patients’ and caregivers’ causal beliefs. In China, families of patients with schizophrenia predominantly endorsed
social and interpersonal factors and psychological problems as causes of their relative’s schizophrenia, and rarely endorsed biomedical causes (Phillips et al., 2000). In India, patients with schizophrenia commonly subscribe to supernatural causal models, but caregivers rarely do so (Kate et al., 2012; Saravanan et al., 2007; Srinivasan & Thara, 2001). Bedouin-Arab patients in southern Israel uniformly attributed their symptoms of neurotic and psychotic illnesses to supernatural forces (Al-Krenawi, 1999). It is necessary to consider two important points regarding the studies on beliefs about schizophrenia: the first one is the inconsistency in the results and the second one is that there is scarce literature on what happens within different geographic contexts, and even less among ethnic minorities in Latin America who have high rates of treatment discontinuation (Vicente, Kohn, Rioseco, Saldivia & Torres, 2005). This could be due in part to the discrepancy between the shared models of beliefs within ethnic minority groups and the prevailing biomedical model characteristic of urban mental health clinics. Enhancing our understanding of causal models held by ethnic minority groups is therefore important for improving engagement with service provides and ultimately better psychiatric care (US Department of Health & Human Services (USDHHS), 2001, Tompson, 1995). This study is the first to address Aymara caregivers and psychiatric patients who are residents of three South American countries: western Bolivia, southern Peru and northern Chile. The Aymara culture, with a population of 2 million people, has lived in the Andes Mountains for centuries, however, recent generations of Aymara have undertaken a massive migration, moving from rural towns in the foothills to large cities (Köster, 1992; Van Kessel, 1996; Nuñez & Cornejo, 2012; Gundermann, 2000; Zapata, 2007). When discussing the Aymara ‘community’, we remain cognizant that Aymara tradition is not monolithic, and that regional and also local variations exist with respect to the intensivity of certain cultural or social practices – for example, the Aymara language – and to the general degree of intercultural involvement. That said, there remains a strong coherence in the Aymara tradition regarding certain basic principles of life, behavior, rites and – for the specific case that interests us here – ways to understand mental illness (Fernández Juárez, 2002). Our previous study of coping strategies in Aymara caregivers of patients with schizophrenia showed that they tend to use more spiritual help (Caqueo-Urízar, Gutiérrez-Maldonado, Ferrer-García, & Miranda-Castillo, 2012). Similarly, the Aymara family in the community leads the patient, in the first instance, to the healer (Yatiri) who performs a series of rituals to cure the mental disorder. These rites are related to magical–religious beliefs, minerals and herbs (Leiva, 2008). The aim of the current study is to investigate differences in the beliefs about the causes of schizophrenia
Downloaded from isp.sagepub.com at East Tennessee State University on June 23, 2015
84
International Journal of Social Psychiatry 61(1)
between Aymara and non-Aymara patients with a diagnosis of schizophrenia and their primary caregivers. We analyzed three systems of beliefs: biological, psychosocial and magical–religious. We hypothesized that there would be a greater amount of magical–religious beliefs about schizophrenia, fewer biological beliefs (due to limited access to this type of knowledge) and a greater amount of psychosocial beliefs (since these are related to problems in education, work and finance) in Aymara caregivers and patients versus non-Aymara. We also investigated the socio-demographic and clinical correlates of magical, psychosocial and biological beliefs among patients and caregivers.
Methods Sample The process of recruitment of Aymara and non-Aymara patients and caregivers took place in public health sector clinics in each country. We selected the largest public health clinic in each region. The first author reviewed the lists of patients and caregivers who were attending each center, and the research team made assessments over a 3-month period in each country. Patients were invited to participate as they came for their monthly follow-up visits, usually accompanied by their key caregiver. Most of the people agreed to participate. The study sample comprised patients with schizophrenia who were receiving services from mental health clinics in the Central–Southern Andean regions of northern Chile, southern Peru and central–western Bolivia, and each patient’s primary caregiver, defined as the person who fulfills the primary caring role and spends more time than anyone else with the patient in the task of caring. The sample included both Aymara and non-Aymara patients and caregivers. Aymara patients and caregivers were identified by Aymara surnames as established by legislation regarding indigenous peoples in the three countries, or Aymara self-identification, being this last criterion, the most important for the selection. Both the Aymara and non-Aymara patients live in the same urban areas, are served by the same mental health centers and have roughly comparable socio-demographic characteristics. We applied a small set of exclusion criteria to the patient (being in a state of psychotic crisis or having a sensory or cognitive type of disorder that prevents being evaluated) and caregiver (presence of organic symptomatology; having a psychoactive substance abuse disorder; having a sensory or cognitive type of disorder that prevents interviewing) groups to ensure ability to participate fully in the interviews. The final sample included 253 patients with an International Classification of Diseases (ICD)-10 diagnosis of schizophrenia (World Health Organization (WHO), 1992) and 253 primary caregivers (33.6% from Chile, 33.6% from Peru
and 32.8% from Bolivia). Interviews were conducted between May 2012 and February 2013. Although these three Latin American countries share several cultural characteristics, there are some differences between them, which should be made explicit: thus, in Bolivia, 13.6% of the population lives with less than US$1 per day; in Peru, this population is 5.9% and it is
