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Abstract(s)
O contexto de doença crónica é uma conjetura bastante adversa, tanto para o próprio
doente como também para aqueles que o rodeia. É um contexto onde sofrimento e angústia
estão de facto presentes, acompanhados de elevados níveis de stress e ansiedade, tornandose assim um meio onde se vive em permanente desalento. Neste sentido, cabe à investigação
proporcionar metodologias e programas de intervenção que contrariem esta forma de estar
perante a doença a fim de garantir que todos os que lidam com esta, direta ou indiretamente,
disponham de níveis de bem-estar e se adaptem à doença de forma favorável. O presente
estudo, de caráter qualitativo e exploratório, pretende explorar as dinâmicas familiares e
individuais associadas à resiliência de indivíduos com doença rara e dos seus familiares; as
principais forças de indivíduos com doença rara e dos seus familiares, as estratégias de
coping de indivíduos com doença rara e dos seus familiares e ainda compreender de que
forma a resiliência, as forças e as estratégias de coping de indivíduos com doença rara e dos
seus familiares, promovem o ajustamento à doença. Considerando os objetivos descritos, a
presente dissertação de mestrado abrange como proposta de investigação dar resposta à
seguinte questão: “De que forma a resiliência, as forças e as estratégias de coping podem
contribuir para a adaptação individual e familiar à doença rara?”. A amostra foi constituída
por um segmento de indivíduos portugueses portadores de doença rara, neste caso 16
participantes. O método de recolha de dados verificou-se por meio de entrevistas
semiestruturadas, prosseguindo-se com a análise temática dos dados através do programa
MAXQDA 2022. Relativamente aos resultados obtidos, estes foram bastante variados e de
complexa interpretação, tendo em conta a sobreposição de alguns conceitos. No entanto,
demonstrou-se que os fatores externos e internos à doença rara têm elevado impacto na forma
como cada um dos elementos da família se adapta à condição médica. Neste sentido, como
principais conclusões do presente estudo, é possível inferir que a união e o suporte familiar
são fortes facilitadores da adaptação à doença, tal como as forças de cada um dos elementos
e as estratégias de coping postas em prática, tendo em conta as necessidades e recursos das
pessoas envolvidas no contexto da doença.
Health conditions such as chronic illness present a context rife with adversity, both for the patient himself and for those around him. It is a context where suffering and anguish are present, accompanied by high levels of stress and anxiety, thus becoming an environment where people live in permanent discouragement. In this sense, it is up to research, in this scientific area, to provide methodologies and intervention programs that counteract this way of facing the disease, to guarantee that all those who deal with it, directly or indirectly, can manage to sustain healthy levels of well-being and adapt favourably to the disease. This qualitative and exploratory study aims to examine the family and individual dynamics associated with the resilience of individuals with rare diseases and their relatives, the main strengths of patients with rare diseases and their families, the coping strategies of individuals with rare diseases and their family members, and also, to understand how the resilience, strengths and coping strategies of individuals with rare disease and their families promote adjustment to the disease. Considering the objectives described, this master's dissertation covers as a research proposal to answer the following question: “How can resilience, strengths and coping strategies contribute to individual and family adaptation to a rare disease?”. The sample consists of a segment of Portuguese with rare disease, in this case 16 participants. The data collection method was verified through semi-structured interviews, proceeding to the thematic analysis of the data through the MASQDA 2022 program. Regarding the results obtained, they were quite varied and complex to interpret, considering the overlapping of some concepts. However, it has been shown that the external and internal factors of the person with the disease have a high impact on how he adapts to his medical condition and that of his family members. In this sense, as the main conclusions of the present study, it is possible to infer that family unity as well as support are strong facilitators for the adaptation to the disease, along with the strengths of each relative and the coping strategies put into practice, considering the needs and resources of the people involved in the context of the disease.
Health conditions such as chronic illness present a context rife with adversity, both for the patient himself and for those around him. It is a context where suffering and anguish are present, accompanied by high levels of stress and anxiety, thus becoming an environment where people live in permanent discouragement. In this sense, it is up to research, in this scientific area, to provide methodologies and intervention programs that counteract this way of facing the disease, to guarantee that all those who deal with it, directly or indirectly, can manage to sustain healthy levels of well-being and adapt favourably to the disease. This qualitative and exploratory study aims to examine the family and individual dynamics associated with the resilience of individuals with rare diseases and their relatives, the main strengths of patients with rare diseases and their families, the coping strategies of individuals with rare diseases and their family members, and also, to understand how the resilience, strengths and coping strategies of individuals with rare disease and their families promote adjustment to the disease. Considering the objectives described, this master's dissertation covers as a research proposal to answer the following question: “How can resilience, strengths and coping strategies contribute to individual and family adaptation to a rare disease?”. The sample consists of a segment of Portuguese with rare disease, in this case 16 participants. The data collection method was verified through semi-structured interviews, proceeding to the thematic analysis of the data through the MASQDA 2022 program. Regarding the results obtained, they were quite varied and complex to interpret, considering the overlapping of some concepts. However, it has been shown that the external and internal factors of the person with the disease have a high impact on how he adapts to his medical condition and that of his family members. In this sense, as the main conclusions of the present study, it is possible to infer that family unity as well as support are strong facilitators for the adaptation to the disease, along with the strengths of each relative and the coping strategies put into practice, considering the needs and resources of the people involved in the context of the disease.
Description
Keywords
Resiliência Estratégias de coping Forças Adaptação à doença Doença crónica rara Resilience Coping strategies Individual strengths Adaptation to illness Rare chronic disease