A carregar...
Publicação
O papel dos cuidadores na preservação da autonomia e dignidade da pessoa com doença de Alzheimer
| Nome: | Descrição: | Tamanho: | Formato: | |
|---|---|---|---|---|
| 3.17 MB | Adobe PDF |
Orientador(es)
Resumo(s)
Este trabalho tem como principal finalidade conhecer as estratégias adotadas pelos cuidadores para a preservação da autonomia (decisional e funcional) e a dignidade da pessoa com doença de Alzheimer. São também discutidas as estratégias de gestão de dilemas éticos que emergem no contexto dos cuidados diários, essencialmente relacionados com o conflito entre o dever de providenciar proteção/segurança e o direito da pessoa com doença de Alzheimer à autonomia/liberdade.
Nesta investigação recorreu-se à metodologia qualitativa, mais concretamente do tipo estudo multicaso, incluindo 5 participantes (2 cuidadores formais, 2 cuidadores informais e um participante não-cuidador), selecionados através de amostragem não probabilística e intencional, com a entrevista semiestruturada como método de colheita de dados e com um intuito explanatório-descritivo. Analiticamente, realizou-se uma análise crítica dos discursos (ACD) produzidos a partir da transcrição das entrevistas realizadas, sob a orientação do modelo tridimensional proposto por Fairclough.
A análise dos discursos obtidos permitiu apurar que o papel dos cuidadores da pessoa com doença de Alzheimer na preservação da sua autonomia e dignidade e na resolução de dilemas éticos emergentes do cuidado quotidiano depende de um conjunto complexo de fatores, dos quais se destacam, antes de tudo, a representação social e a perceção pessoal sobre a doença de Alzheimer.
A representação social negativa da doença parece exercer influência sobre as perceções e discursos pessoais dos cuidadores sobre pessoa com doença de Alzheimer, nomeadamente na forma como os cuidadores percecionam a pessoalidade (tradução livre do inglês personhood) do doente de Alzheimer.
No domínio específico da autonomia, também a perceção pessoal sobre a capacidade/competência da pessoa com doença de Alzheimer parece ter uma grande preponderância na forma como são encetadas ações pelos cuidadores no sentido da sua preservação.
A dignidade é reconhecida como algo inalienável da pessoa com doença de Alzheimer, mas a sua preservação depende de ações de terceiros. A preservação da dignidade é associada à adoção de comportamentos que respeitam a pessoa, os seus hábitos, crenças e valores, e requer um cuidado atencioso, afetivo e calmo.
O sentido de cuidar influencia também a forma como os cuidadores gerem e orientam as suas decisões em relação aos dilemas éticos quotidianos entre a proteção/segurança e a autonomia/liberdade.
São enunciados pelos cuidadores formais condicionantes relacionadas com a cultura institucional, e que direcionam repetidamente a decisão dos profissionais sobre estes dilemas éticos para a segurança/proteção, preterindo os princípios subjacentes ao cuidado centrado-na-pessoa. Exemplos dessas condicionantes são a rigidez de rotinas, a escassez de pessoal, a inexistência de condições estruturais e arquitetónicas consideradas adequadas à preservação da autonomia/liberdade da pessoa com doença de Alzheimer. Além destes, a evicção de eventuais riscos que podem colocar a instituição em situação de litigio com os familiares da pessoa com doença de Alzheimer e/ou denegrir a imagem pública da Instituição, mas também outros fatores que dizem respeito a questões de ordem interna dos cuidadores, como o “facilitismo” e a desconsideração pela pessoa com doença de Alzheimer.
Os conteúdos desenvolvidos e os resultados obtidos neste trabalho permitem concluir que existe uma clara e premente necessidade de refletir, desenvolver e divulgar a dimensão (bio)ética da doença de Alzheimer, para a sociedade em geral, e para cada cuidador em particular, incluindo-a numa abordagem multidisciplinar à doença, e no processo de cuidados diário da pessoa com doença de Alzheimer. Este trabalho pretende constituir-se como um contributo a essa reflexão fundamental.
The main purpose of this study is to review the strategies used by carers, towards persons affected by Alzheimer´s disease, in regards of maintaining their dignity and autonomy (in any degree of decisions, and physical). Also discussed, is the management of ethical dilemmas emerging from daily care activities related to the conflict between the duty to maintain patient´s safety, and the rights of the patients and their free-will. On this study, it was used qualitative research method, more precisely, multiple case study, which included 5 participants (2 formal caregivers, 2 informal caregivers, and a participant non-carer), selected through intentional and non probabilistic sampling. As data collecting method, was used semi-structured interview, having the intent of descriptive explanatory study. Analytically, was used the critical analysis of contents of the interviews, produced by transcription, and using Fairclough tridimensional model. The analysis of the interviews contents made clear that the role of the caregivers of the person affected by Alzheimer´s disease, in preserving autonomy and dignity, and resolution of ethical dilemmas (from daily care activities), is depending on a complex set of factors, whose most significant are the social representation and personal perception of the person with Alzheimer´s disease. The negative social representation of the disease itself seems to cause influence upon the perceptions and personal opinions of caregivers on the personhood of the person affected by Alzheimer´s disease. In the subject of autonomy, also the personal perception, regarding capacity/competence, of the person affected by Alzheimer´s disease, seems to be relevant in the way actions are taken by caregivers, in order for its preservation. Dignity is recognized as something unalienable from the person affected by Alzheimer’s disease. But to maintain it, will depend upon the actions of the third party. Preservation of dignity is associated with the respect towards habits, beliefs, and values, and also requires tender loving care. The way of providing care influences the management of decisions regarding daily ethical dilemmas between protection/safety and autonomy/free-will. It is reported by formal caregivers, that the conditionings related to institutional culture consistently direct their decisions regarding ethical dilemmas towards protection/safety, in detriment person centered care principles. As examples of such conditionings, are the shortness of staff, the absence of infra-structures, considered adequate for preservation of autonomy/free-will of person affected by Alzheimer´s disease. Moreover, the deletion of any eventual risks which may cause litigation between relatives of the person affected by Alzheimer´s disease and the institution, and/or tarnish the public image of the institution. There are also other internal factors, like the complacence and the overlook towards the persons affected by Alzheimer´s disease. The contents developed, and the results obtained during this study lead to conclude that there is a clear and urgent requirement to make a reflection, to develop, and to promote the (bio)ethical dimension of the person affected by Alzheimer´s disease, towards society and towards every caregivers, including in a multidisciplinary approach to the condition, and in the process of daily cares provided for the person affected by Alzheimer’s disease. This study intends to be a contribution for that fundamental reflection.
The main purpose of this study is to review the strategies used by carers, towards persons affected by Alzheimer´s disease, in regards of maintaining their dignity and autonomy (in any degree of decisions, and physical). Also discussed, is the management of ethical dilemmas emerging from daily care activities related to the conflict between the duty to maintain patient´s safety, and the rights of the patients and their free-will. On this study, it was used qualitative research method, more precisely, multiple case study, which included 5 participants (2 formal caregivers, 2 informal caregivers, and a participant non-carer), selected through intentional and non probabilistic sampling. As data collecting method, was used semi-structured interview, having the intent of descriptive explanatory study. Analytically, was used the critical analysis of contents of the interviews, produced by transcription, and using Fairclough tridimensional model. The analysis of the interviews contents made clear that the role of the caregivers of the person affected by Alzheimer´s disease, in preserving autonomy and dignity, and resolution of ethical dilemmas (from daily care activities), is depending on a complex set of factors, whose most significant are the social representation and personal perception of the person with Alzheimer´s disease. The negative social representation of the disease itself seems to cause influence upon the perceptions and personal opinions of caregivers on the personhood of the person affected by Alzheimer´s disease. In the subject of autonomy, also the personal perception, regarding capacity/competence, of the person affected by Alzheimer´s disease, seems to be relevant in the way actions are taken by caregivers, in order for its preservation. Dignity is recognized as something unalienable from the person affected by Alzheimer’s disease. But to maintain it, will depend upon the actions of the third party. Preservation of dignity is associated with the respect towards habits, beliefs, and values, and also requires tender loving care. The way of providing care influences the management of decisions regarding daily ethical dilemmas between protection/safety and autonomy/free-will. It is reported by formal caregivers, that the conditionings related to institutional culture consistently direct their decisions regarding ethical dilemmas towards protection/safety, in detriment person centered care principles. As examples of such conditionings, are the shortness of staff, the absence of infra-structures, considered adequate for preservation of autonomy/free-will of person affected by Alzheimer´s disease. Moreover, the deletion of any eventual risks which may cause litigation between relatives of the person affected by Alzheimer´s disease and the institution, and/or tarnish the public image of the institution. There are also other internal factors, like the complacence and the overlook towards the persons affected by Alzheimer´s disease. The contents developed, and the results obtained during this study lead to conclude that there is a clear and urgent requirement to make a reflection, to develop, and to promote the (bio)ethical dimension of the person affected by Alzheimer´s disease, towards society and towards every caregivers, including in a multidisciplinary approach to the condition, and in the process of daily cares provided for the person affected by Alzheimer’s disease. This study intends to be a contribution for that fundamental reflection.
Descrição
Tese de mestrado, Bioética, Universidade de Lisboa, Faculdade de Medicina, 2016
Palavras-chave
Doença de Alzheimer Cuidadores Autonomia Dignidade Dilemas éticos Análise crítica do discurso Teses de mestrado - 2016