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Perceções da condição de saúde, da autonomia e do autocuidado entre pessoas com doença reumática
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Authors
Abstract(s)
Entre as doenças crónicas, as doenças reumáticas, pela sua prevalência e repercussões na população, emergem como uma prioridade, requerendo, como tal, compreensão e preparação dos profissionais de saúde, em particular dos enfermeiros, de modo a que os cuidados e respostas sejam atempados e adequados. Estas doenças são responsáveis por perdas significativas de autonomia e capacidades de desempenho, em especial nas atividades de autocuidado. Temos como grande questão de investigação, compreender em que medida as perceções da ‘condição de saúde’ – abrangendo as representações em relação à saúde, à doença, à dor, ao corpo, às limitações impostas pela doença e aos sentimentos habituais –, entre pessoas com doença reumática, variam de acordo com a sua autonomia e o perfil de autocuidado. Pretende-se, assim, compreender e analisar as representações da ‘condição de saúde’ entre pessoas com doença reumática, bem como perceber qual o impacto da doença no autocuidado, identificar os perfis de autocuidado e as associações mais relevantes entre as representações encontradas. Para compreendermos o modo como as pessoas se sentem, pensam e se comportam habitualmente, num contexto psicossocial, enquadrámos esta investigação empírica na teoria das representações sociais, desenvolvida por Moscovici, e articulando-a com o modelo de perfis de autocuidado de Backman e Hertinen. A investigação empírica engloba duas fases. A primeira, fase exploratória, é constituída por quatro estudos, em que utilizamos uma metodologia essencialmente qualitativa, e na segunda, fase inferencial, recorremos a uma metodologia quantitativa. Os dados foram recolhidos em instituições de saúde com serviços de reumatologia, entre uma população de adultos e idosos, de ambos os sexos, com idade média de 68 anos. Na fase exploratória, foram realizados três grupos de foco e um extenso estudo exploratório – com várias questões abertas relativas à condição de saúde – sendo o principal objetivo determinar as dimensões significantes que estruturam as representações da ‘condição de saúde’. Os resultados obtidos nesta fase serviram de base à construção de várias das escalas incluídas no questionário desenvolvido, como instrumento de medida, para a recolha de dados, no estudo inferencial. Este permitiu-nos testar a coerência dos resultados antes obtidos, e complementá-los, bem como verificar a influência das pertenças sociais nas representações encontradas, averiguar os perfis de autocuidado no seio da população estudada, e correlacionar estes perfis com as representações relativas à ‘condição de saúde’, encontrando associações relevantes. Os resultados obtidos evidenciam que a doença e a dor que se lhe associa, são sentidas como devastadoras, com fortes implicações na condição de saúde de cada pessoa, assim como os sentimentos negativos que são comuns, interferem na gestão do autocuidado. As mulheres tendem a mostrar maior insatisfação com a sua condição de saúde do que os homens. Os mais velhos e os que estão doentes há mais tempo são, em geral, os mais insatisfeitos. Encontrámos vários tipos de perfil de autocuidado, em especial, perfis do tipo responsável, formalmente guiado e independente. Os homens, tal como os sujeitos mais novos e doentes há menos tempo, têm um perfil que é tipicamente responsável e independente. As mulheres, assim como os mais novos e os doentes há menos de 10 anos, revelam, sobretudo, um perfil formalmente guiado. Torna-se imperioso compreender as representações da condição de saúde entre pessoas com doença reumática, assim como, conhecer o modo como gerem o autocuidado, permitindo assim, aos enfermeiros, conhecer o potencial de autonomia e as necessidades de cada pessoa, permitindo intervir e responder mais adequadamente aos seus problemas, ajudando-as a gerir, com dignidade, a sua condição. Nesse sentido, o perfil de autocuidado é uma área sensível aos cuidados de enfermagem, constituindo um desafio para futuras investigações.
From all the chronic illnesses, rheumatic diseases, due to its prevalence and impact on the population, emerge as a priority, and health professionals, especially nurses, should address it with appropriate and competent responses. These diseases are accountable for significant losses of autonomy and performance capability, particularly in self-care behaviors. Our aim is to understand to what extent the perception of health condition covering the representations concerning health, disease, pain, body awareness, limitations imposed by the disease and feelings, among patients with this condition, varies according to their autonomy and their self-care profile. It is intended, therefore, to analyze the representations of the health status, among people with arthritis and to verify the impact of the illness on their self-care activities as well as to describe the most relevant associations between representations and the typical self-care profiles in this population. In an effort to comprehend how people feel, think and behave on daily basis, Moscovici’s social representations theory was articulated with Backman and Hertinen model of self-care profile. Empirical research comprised two different segments. In the first one, exploratory, four qualitative studies were conducted and in the second inferential, we resorted to a quantitative approach. Data was collected in health institutions with rheumatology services, using a population of older adults, average age of 68 years, both genders. In the exploratory phase, three focus-group and an extensive exploratory study were carried in order to retrieve and explore, through several open-questions, significant and structural dimensions of the representations of the health condition. These results were then used to assemble various scales included in the questionnaire which made possible to measure and gather data for the inferential study. This allowed us not only to test the consistency of our qualitative material, but also to find additional information, investigate the influence of social belongings in this particular population, determine the typical self-care profiles and to correlate these with the representations of the health condition. Results elucidate that the disease, and the pain associated with it, is experienced as devastating, with strong implications for individual health condition and negative feelings like sadness, discouragement and loneliness, are common and interfere with self-care management. Women tend to show greater dissatisfaction with their health condition than men. The older and the long-time rheumatic are, in general, the most dissatisfied. Several types of self-care profiles were found, namely: responsible, formally guided and independent types. Men, as well as younger and short-time patients, exhibit profiles that is predominantly responsible and independent. Women as well as younger and short-time patients express, above all a formally guided profile. Knowing how rheumatic patients perceive their condition, themselves, and their feelings, as well as how they manage their self-care, empowers nurses to potential the autonomy and to address the needs of each patient, enabling action and a more adequate response to these patient problems, helping them to cope with the disease with dignity. In this sense, self-care profiles are a sensitive and important area for nursing care and can be a challenge for future research.
From all the chronic illnesses, rheumatic diseases, due to its prevalence and impact on the population, emerge as a priority, and health professionals, especially nurses, should address it with appropriate and competent responses. These diseases are accountable for significant losses of autonomy and performance capability, particularly in self-care behaviors. Our aim is to understand to what extent the perception of health condition covering the representations concerning health, disease, pain, body awareness, limitations imposed by the disease and feelings, among patients with this condition, varies according to their autonomy and their self-care profile. It is intended, therefore, to analyze the representations of the health status, among people with arthritis and to verify the impact of the illness on their self-care activities as well as to describe the most relevant associations between representations and the typical self-care profiles in this population. In an effort to comprehend how people feel, think and behave on daily basis, Moscovici’s social representations theory was articulated with Backman and Hertinen model of self-care profile. Empirical research comprised two different segments. In the first one, exploratory, four qualitative studies were conducted and in the second inferential, we resorted to a quantitative approach. Data was collected in health institutions with rheumatology services, using a population of older adults, average age of 68 years, both genders. In the exploratory phase, three focus-group and an extensive exploratory study were carried in order to retrieve and explore, through several open-questions, significant and structural dimensions of the representations of the health condition. These results were then used to assemble various scales included in the questionnaire which made possible to measure and gather data for the inferential study. This allowed us not only to test the consistency of our qualitative material, but also to find additional information, investigate the influence of social belongings in this particular population, determine the typical self-care profiles and to correlate these with the representations of the health condition. Results elucidate that the disease, and the pain associated with it, is experienced as devastating, with strong implications for individual health condition and negative feelings like sadness, discouragement and loneliness, are common and interfere with self-care management. Women tend to show greater dissatisfaction with their health condition than men. The older and the long-time rheumatic are, in general, the most dissatisfied. Several types of self-care profiles were found, namely: responsible, formally guided and independent types. Men, as well as younger and short-time patients, exhibit profiles that is predominantly responsible and independent. Women as well as younger and short-time patients express, above all a formally guided profile. Knowing how rheumatic patients perceive their condition, themselves, and their feelings, as well as how they manage their self-care, empowers nurses to potential the autonomy and to address the needs of each patient, enabling action and a more adequate response to these patient problems, helping them to cope with the disease with dignity. In this sense, self-care profiles are a sensitive and important area for nursing care and can be a challenge for future research.
Description
Keywords
Doença reumática Condição de saúde Autonomia Perfil de autocuidado Enfermagem Representação social Chronic disease Rheumatic disease Health condition Self-care Self-care activities Nursing Social representations