Correspondance author. E-mail: acaqueo@uta.cl
The study aimed to compare the quality of life (QoL) of patients with schizophrenia belonging to the Aymara ethnic group from the Central-Southern Andes, with Non-Aymara patients. This cross-sectional study was conducted in three mental health clinics in Chile, Peru, and Bolivia. The data included sociodemographic, clinical characteristics and the QoL was assessed using the S-QoL18. Comparative analyses explored QoL differences between Aymara and Non-Aymara patients. Two hundred and fifty-three patients participated. Aymara had lower QoL scores compared to Non-Aymara patients, for total Index, family relationships, and sentimental life dimensions. Monthly family incomes and disorder duration were significantly lower for Aymara patients. Our study supported the hypothesis of poor QoL in Aymara patients with schizophrenia, after considering other socio-demographic and clinical variables such as the attitude to medication.
El objetivo de este estudio consistió en comparar la calidad de vida (CV) de pacientes con esquizofrenia pertenecientes al grupo étnico aymara de los Andes Centro-Sur, con pacientes no Aymara. En este estudio transversal participaron 253 pacientes de tres clínicas de salud mental en Chile, Perú y Bolivia. Se recogieron datos sociodemográficos y características clínicas. La calidad de vida se evaluó utilizando el Cuestionario S-QoL18. Los análisis comparativos exploraron las diferencias de QoL entre los pacientes Aymara y no Aymara. Los participantes de origen Aymara tuvieron puntuaciones de CV más bajos en comparación con los pacientes no Aymara para el Índice total, las relaciones familiares y la dimensión de vida sentimental. Los ingresos familiares mensuales y la duración del trastorno fueron significativamente más bajos en los pacientes Aymara. Nuestro estudio soporta la hipótesis de una peor CV en pacientes aymaras con esquizofrenia.
Migration is defined as the process by which people move from one society to another with the intention of settling there (
However, to this type of migration must be added the migration of people who have also migrated massively from rural areas in the Highlands of the Andes to cities on the coast. In particular, Aymara individuals are composed of around two million people and have systematically migrated during the last decades (
Cultural, social and economic changes that this population has had to cope with often conflicts with the concept of balance and harmony of the Andean worldview. For the Aymara population, the world is ordered based on three dimensions: social relationships, relationships with "divinities," and relationships with nature. These three dimensions are closely related and Aymara understanding of the universe is based on the cyclical rhythms of nature and the ritual calendar that they adapted to these natural rhythms. (
Schizophrenia, in addition to the clinical symptoms characteristic of the disorder, implies an important economic and social cost for the sufferer and their relatives, as well as a high degree of stigmatization that severely affects their quality of life (QoL) (
QoL has an essentially subjective nature, and there are a number of factors associated with this construct, including physical and emotional health, psychological and social well-being, fulfillment of personal expectations and goals, economic security, and functional capacity to develop in a standardized way the activities of daily living (
Patients with schizophrenia disorder have a significantly poorer standard of living than others in their community (
Studies lacks on the extent to which cultural factors among ethnic minorities are related to QoL (
The understanding of the QoL of ethnic minority patients should therefore lead to improved strategies to lower the treatment discontinuation rates (
This study aims to describe the QoL of outpatients with schizophrenia belonging to an Aymara ethnic group in the Andean region in Latin-America and compare that population with Non-Aymara patients receiving treatment in the same mental health system. Because this culture presents a different worldview from the Western culture and due to the disadvantages that ethnic minority patients face, we hypothesize that Aymara patients will have a lower QoL than Non-Aymara patients.
This study is based on a secondary analysis of a broader research whose main objective was addressed in a previous publication (
The study sample included patients with schizophrenia who were receiving services from three mental health clinics in the Central-Southern Andean regions of northern Chile (Arica), southern Peru (Tacna), and central-western Bolivia (La Paz). The sample included both Aymara and Non-Aymara patients. Both 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, but the Aymara speak both Spanish and Aymara.
Recruitment of Aymara and Non-Aymara patients took place in three public health sector clinics in Peru, Chile, and Bolivia. We selected the largest public health clinic in each region. The first author reviewed the lists of patients who were attending each center in each country and the research team made assessments over a three-month period in each country. Aymara patients were identified by Aymara surnames as established by legislation regarding indigenous peoples in the three countries, or by Aymara self-identification. Patients were invited to participate as they came to their monthly follow-up visits. Most of the people agreed to participate.
We applied a small set of exclusion criteria to the patient groups to ensure ability to participate fully in the interviews. We excluded those in a state of psychotic crisis or having a sensory or cognitive type of disorder preventing evaluation. The final sample included 253 patients with an ICD-10 diagnosis of schizophrenia (
The study was approved by the Ethics Committee of the University of Tarapacá and the National Health Service of Chile. Two psychologists, who were part of the research team and supervised by the main researcher, conducted the patients’ evaluations under the auspices of the mental health services of each of the three countries. They evaluated the patients during 30 to 45 minutes.
Before the start of the survey, we requested and received informed consent from the patient. We explained the objectives of the study as well as the voluntary nature of participation. We offered no compensation for study participation.
The aforementioned questionnaire is a multidimensional instrument that assesses the patient’s view of his or her current QoL. It is made of 18 items describing 8 dimensions: psychological well-being (PsW), self-esteem (SE), family relationships (RFa), relationships with friends (RFr), resilience (RE), physical well-being (PhW), autonomy (AU), and sentimental life (SL), as well as a total score (Index). Dimensions and Index scores range from 0, indicating the lowest QoL, to 100, the highest QoL.
Data were expressed as proportions or as the means with standard deviations. The data were assessed for normal distribution using the Shapiro-Wilk test and for homogeneity of variance with the Levene test. Comparative analyses were performed to assess differences between Aymara and Non-Aymara (i.e. origin profiles) patients. Associations between patients’ origin and the qualitative variables (gender, marital status, educational level, employment status, and type of mental health treatment) were analyzed using Chi-Square tests; associations between patients’ origin and the quantitative variables (age, monthly family income, duration of disorder, number of hospitalizations, PANSS total score, S-QoL18 Index and its 8 dimensions) were calculated using Student t-tests for normally distributed data or using non-parametric Mann Whitney tests in case of non-normal distributions.
Multivariate analyses using multiple linear regressions (simultaneous model) were then performed to confirm the link between ethnicity and QoL levels. The S-QoL18 index and each of its 8 dimensions were considered as separate dependent variables. The variables relevant to the models were selected from the comparative analyses, based on a threshold p-value ≤0.2. The final models incorporated the standardized β coefficients, which represent a change in the standard deviation of the dependent variable (QoL) resulting from a one-standard-deviation change in the various independent variables. The independent variables with the higher standardized β coefficients are those with a greater relative effect on QoL.
This study was a confirmatory analysis. The hypothesis was that belonging to an ethnic group (i.e. Aymara vs Non-Aymara) was associated with QoL of schizophrenic patients, based on the results of previous analyses (
In our study, no correction for multiple testing has been carried out, consistent with recommendations (
Two hundred and fifty-three patients with
schizophrenia were enrolled in the present study. The mean age of patients was
35.6 years (
The differences between Aymara and Non-Aymara patients are presented in
For clinical factors, Aymara patients had a significantly shorter duration of disorder (
In the multivariate analyses (
M ± SD: mean ± standard desviation, n (%): number (percentage). Student T test. Chi-square test. Mann-Whitney test Significant results are in bold. at significance level p<0.05. (Since the last 3 years before present hospitalization) Drug Attitude Inventory. Positive and Negative Syndrome Scale for Schizophrenia, total score and dimensions. Schizophrenia Quality of Life questionnaire: PsW: psychological well-being; SE: self esteem; RFa: family relationships; RFr: relationships with friends; RE: resilience; PhW: physical well-being; AU: autonomy; SL: sentimental life.
β: standardised beta coefficient (β represents the change of the standard deviation in QoL score resulting from a change of one standard deviation in the independent variable); Significant results in bold. p≤0.05. p≤0.01. Schizophrenia Quality of Life questionnaire; PsW: psychological well-being; SE: self-esteem; RFa: family relationships: RFr: relationships with friends; RE: resilience; PhW: physical well-being; Au: autonomy; SL: sentimental life. Drug Attitude Inventory. Positive and Negative Syndrome scale of Schizophrenia.
The aim of our study was to describe the QoL of outpatients with schizophrenia belonging to an Aymara ethnic group in the Andean region in Latin-America and compare that population to Non-Aymara patients. Our results supported the hypothesis that Aymara patients had a significantly lower level of QoL than Non-Aymara patients, especially for relationships dimensions: family relationships (RFa), relationships with friends (RFr) and sentimental life (SL) QoL dimensions, even after adjusting the model for confounders. These results were consistent with literature. Indeed, previous studies reported Aymara patients to cope with psychological distress, showing the importance of subjective aspects of quality of life among this population (
Concerning relationships with friends and sentimental life, Aymara patients reported lower QoL scores in SL dimension than Non-Ayamara patients did. This result should be considered knowing the fact that our total sample of patients with schizophrenia was in its majority alone and without any partner, as described before (
Another finding shows that socio-demographic variables also have an important role, and socio-economic circumstances should be taken into account when assessing these patients. In this study, monthly family income level was significantly lower for Aymara patients than for Non-Aymara patients. These results are also consistent with previous studies indicating that a higher level of education facilitates employment, thus improving patients’ level of income and QoL (
In relation to clinical variables, these findings show that Aymara patients had a significantly shorter duration of disorder than Non-Aymara patients. The underlining assumption of this result should be taken cautiously as it could be explained by a delay in the clinical diagnosis in Aymara patients due to specific cultural beliefs. Indeed, traditionally, the Aymara family tends to first lead the patient to the healer of the community (Yatiri), who performs a series of rituals to cure the mental disorder (
It should also be considered that ethnic minority patients tend to be less aware of community resources, possess less social support, and face language difficulties (
First, we cannot extrapolate our findings to the whole Aymara population, and especially not to those Aymara people for whom the problem of access to care is the main problem. Many of these individuals still reside in the rural Highlands. However, our sample of Aymara patients is likely to be representative of the Aymara patients with schizophrenia in our countries, because most Aymara go to public health services and not to private physicians.
Second, our study used only one type of QoL instrument using S-QoL18. It would be interesting to determine whether our findings could be replicated with QoL instruments that use other conceptual models and dimensional constructs.
Third, this study used cross-sectional data, thus relationships between ethnicity and the different variables, including QoL scores, were not addressed according to time and were not supported to be causal. Further investigations with longitudinal studies are needed in the future.
In conclusion, our study found that Aymara patients have lower QoL than Non-Aymara patients and some of the reasons that may explain this result are the migration process experienced by the families, as well as socio-cultural and economic factors.
This research was funded in part by the Universidad de Tarapacá through Proyecto Mayor de Investigación Científica y Tecnológica UTA n° 3732-16.
The study was approved by the Ethics Committee of the University of Tarapacá and the National Health Service of Chile. Before the start of the survey, informed consent was requested and received from the relative and the patient.
We obtained consent to publish from the participant. The data can’t be shared because it belongs to the Universidad de Tarapacá through its postdoctoral research proyect of A. Caqueo-Urízar. Conception and design: AC-U, LB and MA. Data collection and analysis of data: AC-U, LB and MA. Interpretation of data: AC-U, LB and MA. Drafting and writing the manuscript: AC-U, LB and MA.
Research article.