Educação, ética e saúde: aprender a cuidar sob a ótica de doentes oncológicos
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2018-06-26
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A perspectiva desta tese teve início com a inquietação surgida ao longo de anos ao lidar com doente oncológico, mesmo não sendo profissional da área da saúde. Esta preocupação levou a questionamentos acerca da situação e das dimensões do sofrimento destes doentes, tendo em vista o que a patologia acarreta para eles e para todos os envolvidos. Partindo desta premissa, estabelecemos o objetivo geral de nossa pesquisa: identificar as condições que favoreceram o surgimento de aprendizagens significativas associadas à circunstância doença oncológica tendo como base o paradigma salutogénico construído por Aaron Antonovsky. Nosso tema, portanto, foi a educação no sofrimento de doentes oncológicos, partindo de uma revisão sobre a educação, entendida como Educação ao Longo da Vida. Nosso trabalho procurou ir ao encontro desta compreensão, promovendo a transdisciplinaridade, fazendo convergir para a educação no sofrimento dos doentes oncológicos e para a formação dos cuidadores formais e não formais, o conhecimento académico das áreas da educação em saúde e da ética, ao mesmo tempo que reconhece o valor e a relevância das narrativas dos próprios doentes. Em congruência com o tema, o âmbito e a finalidade, a pergunta de partida que utilizamos foi: Que condições, objetivas e subjetivas, favorecem a emergência de aprendizagens significativas na experiência do sofrimento de doentes oncológicos? Assim, lançámos mão de uma vasta revisão bibliográfica sobre temas relacionados à Educação ao Longo da Vida, Educação para a Saúde, paradigmas (patogénico e salutogénico) e modelos de Educação para a Saúde, sofrimento, dimensões do sofrimento, cuidar, valores do cuidar, ética do cuidar. Em termos metodológicos utilizamos de metodologia mista (quantitativas e qualitativas) tais como a estatística descritiva para os resultados obtidos através do questionário de sentido interno de coerência de Antonovsky e o método de natureza qualitativa, compreensivo-hermenêutico, mediante a recolha de relatos autobiográficos sobre os quais realizámos análise interpretativa hermenêutica. A amostra dirigida partiu da seleção de doze doentes oncológicos previamente indicados por médicos e instituições localizadas no Estado de Minas Gerais, Brasil, que atendiam aos critérios por nós definidos. Após a aprovação do Comitê de Ética da Universidade Fumec - Brasil e da Comissão de Ética da Universidade de Trás-os-Montes e Alto Douro (UTAD) - Portugal, iniciamos os procedimentos do estudo empírico. Os resultados obtidos foram divididos em dois momentos – quantitativos (SOC) e qualitativos (narrativas) que, foram triangulados, de modo a referenciar os objetivos propostos e nos dar subsídios para encontrar respostas à pergunta de partida, nos permitindo uma visão mais ampla do universo pesquisado. A partir dos resultados das análises, pudemos tecer algumas conclusões: constatamos que nem sempre os doentes conhecem sua capacidade de gerenciar suas dificuldades acerca da doença e suas reais necessidades de cuidado, situação que resulta de um desconhecimento, por parte dos cuidadores formais, acerca da vivência que os doentes têm da sua enfermidade, com consequências de ordem técnica e ética. Os resultados obtidos mostraram que aqueles que dispunham de um SOC forte apresentavam recursos e capacidades capazes de levá-los a enfrentar a situação de estresse gerada pelo câncer, destacando-se: a compreensibilidade, construída por cada um; o movimento através da estratégia de busca de informações, apoio familiar; e significado, como chave para uma qualidade de vida. O sofrimento mostrou-se como um sentimento presente desde o início, independente do “Ser”, “Ter” ou “Adquirir”. As dimensões transcendentes, emocionais, interpessoais e intrapessoais identificadas nas narrativas, foram abordadas durante todo o processo da doença. Quanto às dimensões do cuidar, observámos relatos sobre o sofrimento tecnológico, a falta de compaixão e autonomia, advindos do próprio sistema saúde brasileiro ao manter dificuldades de acesso aos locais, exames, cirurgias, assim como profissionais capacitados. Os cuidados advindos de profissionais da saúde mostraram distanciamento do doente. Atitudes do cuidar tais como capacitar, respeitar, escutar, ter sentido de humor, tocar, não foram notadas nas narrativas, demonstrando um despreparo no cuidado com o outro, que identifica uma importante reflexão que deve ser incluída na formação dos cuidadores. Como contribuição, foram listados pontos que consideramos importantes para a formação dos cuidadores: trabalhar em prol de uma ruptura com o paradigma patogénico, de forma a priorizar a promoção da saúde, considerando o que os doentes oncológicos têm a nos ensinar; reforçar os valores éticos para o cuidar e a Educação para a Saúde, no meio acadêmico, pois o cuidar, ou como cuidar, está ligado ao ensino e à aprendizagem, que resulta em um processo intenso e complexo para educar e educar-se.
The perspective of this thesis began with the uneasiness that has arisen over the years dealing off oncological patients, even not being a professional in the health area. That concern led to questions about the situation and the intensity of the patients suffering, considering what the pathology implies for them and for all those involved. Based on this premise, we established the general objective of the research: to identify the conditions that favored the emergence of significant learning associated with the oncologic disease circumstance, based on the salutogenic paradigm constructed by Aaron Antonovsky. Therefore, the main theme was the education in the suffering of oncological patients, starting from a review on education, understood as a Lifelong Education. Our work sought to meet this understanding, promoting transdisciplinarity, converting education for the suffering of cancer patients and for the formal and non-formal caregivers training, increasing academic knowledge of the health education areas and ethics, at the same time which recognizes the value and relevance of the patients' narratives. In congruence with the theme, scope and purpose, the starting question we used was: What objective and subjective conditions favor the emergence of meaningful learning in the experience of the suffering of oncological patients? Thus, we have made use of a vast literature review on themes related to Lifelong Education, Health Education, paradigms (pathogenic and salutogenic) and Health Education models, suffering, dimensions of suffering, caring, caring values, ethics of caring. In methodological terms we use quantitative and qualitative methodologies such as descriptive statistics for the results obtained through Antonovsky's internal sense of coherence questionnaire and the method of a qualitative, comprehensive-hermeneutic nature, through the collection of autobiographical accounts on which we performed hermeneutic interpretive analysis. The guided sample was based on the selection of twelve oncological patients previously indicated by physicians and institutions located in the State of Minas Gerais, Brazil, which met the criteria. After the approval of the Ethics Committee of Fumec University - Brazil and the Ethics Committee of the University of Trás-os-Montes and Alto Douro (UTAD) - Portugal, we started the procedures of the empirical study. The results were divided into two moments - quantitative (SOC) and qualitative (narratives), which were triangulated in order to refer to the proposed objectives and to provide answers to the starting question, allowing a broader vision of the universe searched. From the results of the analyzes, we were able to draw some conclusions: we found that not always those people know their capacity to manage their difficulties about the disease and their real needs for care, a situation that results of a lack of knowledge from the part of the formal caregivers about the experience that have their illness, with technical and ethical consequences. The results showed that those who had a strong SCO also had the resources and capacities that could lead them to face a stress situation generated by cancer, highlighting: the comprehensibility, built by each one; the movement through the search strategy of information, family support; and significance, as key to a quality of life. Suffering has been shown like a feeling since the beginning, independent of "to Be", "to Have" or "to Get". The transcendent, emotional, interpersonal and intrapersonal dimensions identified in the narratives were surfaced throughout the disease process. Regarding the dimensions of care, we have observed reports about technological suffering, lack of compassion and autonomy, arising from the Brazilian health system itself, by maintaining difficulties in accessing sites, examinations, surgeries, as well as trained professionals. The care provided by health professionals has showed distanced from the patient. Caring attitudes such as empowering, respecting, listening, having a sense of humor, touching, were not noticed in the narratives, showing an unprepared carelessness with the other, witch identifies an important reflection that should be included in the training of caregivers. As a contribution, were listed important points of reference for caregivers training: work towards a break with the pathogenic paradigm, so as to prioritize a health promotion, considering what the oncological patients could teach; reinforce the ethical values to care and the education to health, at the academic circles, because the care, or how to care, is linked to teaching and learning, witch results in an intense and complex process to educate and to be educated itself.
The perspective of this thesis began with the uneasiness that has arisen over the years dealing off oncological patients, even not being a professional in the health area. That concern led to questions about the situation and the intensity of the patients suffering, considering what the pathology implies for them and for all those involved. Based on this premise, we established the general objective of the research: to identify the conditions that favored the emergence of significant learning associated with the oncologic disease circumstance, based on the salutogenic paradigm constructed by Aaron Antonovsky. Therefore, the main theme was the education in the suffering of oncological patients, starting from a review on education, understood as a Lifelong Education. Our work sought to meet this understanding, promoting transdisciplinarity, converting education for the suffering of cancer patients and for the formal and non-formal caregivers training, increasing academic knowledge of the health education areas and ethics, at the same time which recognizes the value and relevance of the patients' narratives. In congruence with the theme, scope and purpose, the starting question we used was: What objective and subjective conditions favor the emergence of meaningful learning in the experience of the suffering of oncological patients? Thus, we have made use of a vast literature review on themes related to Lifelong Education, Health Education, paradigms (pathogenic and salutogenic) and Health Education models, suffering, dimensions of suffering, caring, caring values, ethics of caring. In methodological terms we use quantitative and qualitative methodologies such as descriptive statistics for the results obtained through Antonovsky's internal sense of coherence questionnaire and the method of a qualitative, comprehensive-hermeneutic nature, through the collection of autobiographical accounts on which we performed hermeneutic interpretive analysis. The guided sample was based on the selection of twelve oncological patients previously indicated by physicians and institutions located in the State of Minas Gerais, Brazil, which met the criteria. After the approval of the Ethics Committee of Fumec University - Brazil and the Ethics Committee of the University of Trás-os-Montes and Alto Douro (UTAD) - Portugal, we started the procedures of the empirical study. The results were divided into two moments - quantitative (SOC) and qualitative (narratives), which were triangulated in order to refer to the proposed objectives and to provide answers to the starting question, allowing a broader vision of the universe searched. From the results of the analyzes, we were able to draw some conclusions: we found that not always those people know their capacity to manage their difficulties about the disease and their real needs for care, a situation that results of a lack of knowledge from the part of the formal caregivers about the experience that have their illness, with technical and ethical consequences. The results showed that those who had a strong SCO also had the resources and capacities that could lead them to face a stress situation generated by cancer, highlighting: the comprehensibility, built by each one; the movement through the search strategy of information, family support; and significance, as key to a quality of life. Suffering has been shown like a feeling since the beginning, independent of "to Be", "to Have" or "to Get". The transcendent, emotional, interpersonal and intrapersonal dimensions identified in the narratives were surfaced throughout the disease process. Regarding the dimensions of care, we have observed reports about technological suffering, lack of compassion and autonomy, arising from the Brazilian health system itself, by maintaining difficulties in accessing sites, examinations, surgeries, as well as trained professionals. The care provided by health professionals has showed distanced from the patient. Caring attitudes such as empowering, respecting, listening, having a sense of humor, touching, were not noticed in the narratives, showing an unprepared carelessness with the other, witch identifies an important reflection that should be included in the training of caregivers. As a contribution, were listed important points of reference for caregivers training: work towards a break with the pathogenic paradigm, so as to prioritize a health promotion, considering what the oncological patients could teach; reinforce the ethical values to care and the education to health, at the academic circles, because the care, or how to care, is linked to teaching and learning, witch results in an intense and complex process to educate and to be educated itself.
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Aprendizagem , Saúde , Sofrimento , Cuidar , Doentes oncológicos