Experiências de vida de pacientes esquizofrênicos e seus familiares: uma perspectiva cultural da doença
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Data
2010-04-28
Autores
Guimarães, Patricia Neves [UNIFESP]
Orientadores
Coviello, Denise Martin [UNIFESP]
Tipo
Tese de doutorado
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A esquizofrenia é um dos principais transtornos psiquiátricos, cujas causas são ainda amplamente desconhecidas. O objetivo deste estudo é descrever as concepções socioculturais relacionadas à experiência subjetiva de pacientes esquizofrênicos e seus familiares, nos seguintes aspectos: a) estudar modelos explicativos e significados formulados por pacientes, familiares e comunidade para entender a esquizofrenia; b) descrever comportamentos e práticas populares de familiares utilizadas no processo do cuidado do paciente esquizofrênico; c) explorar a interação entre a família, o paciente esquizofrênico e a comunidade próxima. Foi realizada uma etnografia utilizando a observação participante e entrevista semiestruturada em profundidade, abordando questões referentes às experiências e crenças de pacientes crônicos com diagnóstico de esquizofrenia e seus familiares, em tratamento no Ambulatório de Saúde Mental da cidade de Montes Claros. Foram entrevistados 46 indivíduos: 16 pacientes, 23 familiares e 07 membros da comunidade. Familiares e pacientes vivem em precárias condições socioeconômicas. Pacientes, familiares e a comunidade compartilham crenças semelhantes quanto à etiologia e curso da doença. A esquizofrenia, para pacientes e familiares, não é reconhecida como uma doença; ela é um transtorno de causa espiritual e tem como principais modelos explicativos o resguardo quebrado, os espíritos, o encosto e os feitiços. Os espíritos geracionais são vistos como responsáveis pela transmissão e manifestação da doença por hereditariedade. A doença passa de um membro para o outro por maldição. Pacientes e familiares buscam ajuda terapêutica, principalmente nos “curandeiros”, no espiritismo e nas igrejas evangélicas, o que nem sempre resulta em melhora. As “vozes” que os pacientes ouvem são interpretadas pelos familiares como vozes espirituais, possibilitando a perspectiva de um aspecto positivo na relação entre familiares e pacientes. A loucura, para pacientes, familiares e comunidade, está associada à inconsciência dos acontecimentos e atitudes em torno de si. Ser “louco” está relacionado ao uso de medicação antipsicótica, o que é uma barreira para a adesão ao tratamento. Não poder participar socialmente do mundo é uma fonte de sofrimento para os pacientes. O relacionamento familiar é permeado de agressividade e violência de ambos os lados. As famílias usam a violência: a) por medo; b) como defesa das agressões recebidas; c) para controle do comportamento do paciente; d) por acreditarem que as agressões dos pacientes são premeditadas; e) por não compreenderem o que acontece com os pacientes. O comportamento violento do paciente é visto como um problema de caráter moral. Na perspectiva da comunidade, o paciente esquizofrênico é perigoso e ameaçador. O contexto sociocultural deve ser considerado ao se pensar políticas de intervenção que priorizem a melhoria de vida para pacientes e familiares. As políticas públicas de saúde mental precisam lidar com os desafios das realidades locais, da dinâmica familiar e da violência, que estão inseridos no contexto do cuidado terapêutico. A etnografia realizada com pacientes, familiares e vizinhos mostrou a complexidade do cuidado do paciente esquizofrênico e necessária articulação de várias áreas do conhecimento para se ter uma aproximação mais realista da vida cotidiana dos participantes.
Schizophrenia is one of the major psychiatric disorders, whose causes are still largely unknown. The aim of this study is to describe the socio-cultural concepts related to the subjective experience of schizophrenic patients and their families in the following aspects a) to study the explanatory models and meanings formulated by patients, families and communities in order to understand schizophrenia b) to describe behaviors and popular practices of the patient’s family used in the process of the schizophrenic care c) to exploit the interaction between the schizophrenic patient, his family and the community. An ethnographic research was conducted using participant observation and semi-structured in-depth interview approaching issues related to experiences and beliefs of chronic patients with schizophrenia diagnosis and their families undergoing treatment at the Mental Health Clinic in the city of Montes Claros, Minas Gerais, Brazil. A total of 46 individuals were interviewed: 16 patients, 23 family members and 07 members of the community. Patients and their families live in poor socioeconomic conditions. Patients, families and the community share similar beliefs towards etiology and the course of the disease. Schizophrenia is not recognized as a disease both by patients and their families; it is considered a spiritual disorder and its main explanatory models are lack of post natal care, spirits, spells and spiritual obsession. Generational spirits are seen as responsible for the disease transmission and manifestation by inheritance. This disease is transmitted from one member of the family to the other by curse. Patients and family members seek therapeutic help mainly in "spiritualist healers" and evangelical churches which does not always bring improvement. The "voices" patients hear are interpreted as spiritual voices by the family, suggesting the prospect of a positive aspect in the relationship between family and patients. The concept of madness for the patients, their families and communities is associated with attitudes and unconsciousness towards what is happening around. Being "crazy" is related to the use of antipsychotic medication presenting a barrier to treatment adherence. The fact of not being able to participate socially in the world is a source of suffering for the patients. The family relationship is surrounded by aggressiveness and violence on both sides. Families use violence; a) for fear b) in order to defend from the aggression received, c) in order to control the patient’s behavior d) because they believe the attacks are premeditated e) because they do not understand what patients are going through. The patients’ violent behavior is seen as a moral character problem. Under the community view, the schizophrenic patient is dangerous and threatening. The sociocultural context must be considered when thinking of intervention policies that prioritize the patients’ and families’ life improvement. Mental health public policies have to deal with the challenges of local realities, family dynamics and violence, which are inserted in the context of therapeutic care. The ethnography with patients, family members and neighbors showed the complexity of the schizophrenic patient care and the articulation needed for several areas of knowledge in order to have a more realistic approach of the participants’ daily life.
Schizophrenia is one of the major psychiatric disorders, whose causes are still largely unknown. The aim of this study is to describe the socio-cultural concepts related to the subjective experience of schizophrenic patients and their families in the following aspects a) to study the explanatory models and meanings formulated by patients, families and communities in order to understand schizophrenia b) to describe behaviors and popular practices of the patient’s family used in the process of the schizophrenic care c) to exploit the interaction between the schizophrenic patient, his family and the community. An ethnographic research was conducted using participant observation and semi-structured in-depth interview approaching issues related to experiences and beliefs of chronic patients with schizophrenia diagnosis and their families undergoing treatment at the Mental Health Clinic in the city of Montes Claros, Minas Gerais, Brazil. A total of 46 individuals were interviewed: 16 patients, 23 family members and 07 members of the community. Patients and their families live in poor socioeconomic conditions. Patients, families and the community share similar beliefs towards etiology and the course of the disease. Schizophrenia is not recognized as a disease both by patients and their families; it is considered a spiritual disorder and its main explanatory models are lack of post natal care, spirits, spells and spiritual obsession. Generational spirits are seen as responsible for the disease transmission and manifestation by inheritance. This disease is transmitted from one member of the family to the other by curse. Patients and family members seek therapeutic help mainly in "spiritualist healers" and evangelical churches which does not always bring improvement. The "voices" patients hear are interpreted as spiritual voices by the family, suggesting the prospect of a positive aspect in the relationship between family and patients. The concept of madness for the patients, their families and communities is associated with attitudes and unconsciousness towards what is happening around. Being "crazy" is related to the use of antipsychotic medication presenting a barrier to treatment adherence. The fact of not being able to participate socially in the world is a source of suffering for the patients. The family relationship is surrounded by aggressiveness and violence on both sides. Families use violence; a) for fear b) in order to defend from the aggression received, c) in order to control the patient’s behavior d) because they believe the attacks are premeditated e) because they do not understand what patients are going through. The patients’ violent behavior is seen as a moral character problem. Under the community view, the schizophrenic patient is dangerous and threatening. The sociocultural context must be considered when thinking of intervention policies that prioritize the patients’ and families’ life improvement. Mental health public policies have to deal with the challenges of local realities, family dynamics and violence, which are inserted in the context of therapeutic care. The ethnography with patients, family members and neighbors showed the complexity of the schizophrenic patient care and the articulation needed for several areas of knowledge in order to have a more realistic approach of the participants’ daily life.
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Citação
GUIMARÃES, Patricia Neves. Experiências de vida de pacientes esquizofrênicos e seus familiares: uma perspectiva cultural da doença. 2010. 206 f. Tese (Doutorado) - Escola Paulista de Medicina, Universidade Federal de São Paulo (UNIFESP), São Paulo, 2010.