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Advisor(s)
Abstract(s)
Associada ao envelhecimento da população a Insuficiência Cardíaca (IC) tem aumentado de forma exponencial nos últimos anos. Enquanto condição crónica representa uma ameaça à identidade de quem sofre ao conduzir à (des)construção do quotidiano. São escassos os estudos acerca da experiência vivida da IC na perspetiva dos doentes e cuidadores, e desconhecem-se estudos que tenham sido realizados em Portugal. Assim foram definidos para a presente investigação os seguintes objetivos: a) desocultar a estrutura essencial da experiência vivida na IC avançada, na ótica do doente, do familiar cuidador e dos cuidadores formais, com enfoque na dignidade humana; e b) analisar algumas das questões éticas vivenciadas pelos enfermeiros quando confrontados com pessoas com IC avançada. Foram desenvolvidos 3 estudos de campo. O primeiro estudo foi efetuado com doentes com IC avançada, através de entrevistas semiestruturadas, aplicadas em contexto domiciliar. O segundo estudo foi desenvolvido junto a familiares cuidadores de doentes com IC avançada, com recurso a entrevistas individuais. Por fim, no terceiro estudo foram efetuados grupos focais compostos por cuidadores formais (enfermeiros) com experiência no cuidado a pessoas com doença cardíaca avançada. A opção metodológica para o desenvolvimento dos diferentes estudos teve por base a abordagem fenomenológico-interpretativa, e foi inspirada na filosofia hermenêutica de Paul Ricoeur. A análise qualitativa dos dados foi realizada com recurso ao Software Nvivo10. Os resultados sugerem que a IC confronta a pessoa com uma representação de si diferente da habitual, e para a qual dificilmente se sente preparada. O indivíduo analisa e repensa o seu mundo (nas esferas pessoal, relacional e espiritual) numa tentativa de resgatar o seu equilíbrio e preservar a sua dignidade. Os achados revelam, ainda, que a experiência vivida do familiar cuidador é a de um assalto efetuado à sua vida quotidiana, motivado pelas responsabilidades de começar a cuidar inesperadamente de alguém. Relativamente aos discursos dos enfermeiros estes evocam a necessidade de uma praxis capaz de promover e defender a dignidade dos doentes, como valor absoluto. Foram diversos os questionamentos éticos apresentados, no que se refere às intervenções que prolongam a vida em detrimento da qualidade de vida; e aos processos de decisão relacionados com a suspensão de medidas invasivas.
Associated with population aging, Heart Failure (HF) has increased exponentially in recent years. As a chronic condition, it represents a threat to the identity of those who suffer by leading to the (de)construction of everyday life. There are few studies on the experience of HF from the perspective of patients and caregivers, and there are no studies carried out in Portugal. Thus, the following objectives were defined for the present investigation: a) unveiling the essential structure of the experience lived in advanced HF, from the perspective of the patient, the family caregiver and formal caregivers, with a focus on human dignity; and b) analyze some of the ethical issues experienced by nurses when faced with people with advanced HF. Three field studies were developed. The first study was carried out with patients with advanced HF, through semi-structured interviews, applied in the home context. The second study was developed with family caregivers of patients with advanced HF, using individual interviews. Finally, in the third study, focus groups were made up of formal caregivers (nurses) with experience in caring for people with advanced HF. The methodological option for the development of the different studies was based on the phenomenological-interpretative approach and was inspired by Paul Ricoeur’s hermeneutic philosophy. Qualitative data analysis was performed using the Nvivo10 software. The results suggest that the HF confronts the person with a representation of him/herself different from the usual one, and for which he hardly feels prepared. The person analyzes and rethinks their world (in the personal, relational and spiritual spheres) in an attempt to restore his/her balance and preserve dignity. The findings also reveal that the family caregiver's experience is that of an assault on his daily life, motivated by the responsibilities of starting to care for someone unexpectedly. Regarding the nurses' speeches, these evoke the need for a praxis capable of promoting and defending the dignity of the patients, as an absolute value. There were several ethical questions presented, regarding interventions that prolong life at the expense of quality of life; and decision-making processes related to the suspension of invasive measures. The challenges are innumerable, ranging from the need to generate and allocate meaning to the illness and its social responsibilities, to the need to deal with its consequences, in order to find adaptive strategies. Indeed, this study beyond to unveiling the lived experience, has the potential to contribute to an updated practice focused on the promotion of human dignity.
Associated with population aging, Heart Failure (HF) has increased exponentially in recent years. As a chronic condition, it represents a threat to the identity of those who suffer by leading to the (de)construction of everyday life. There are few studies on the experience of HF from the perspective of patients and caregivers, and there are no studies carried out in Portugal. Thus, the following objectives were defined for the present investigation: a) unveiling the essential structure of the experience lived in advanced HF, from the perspective of the patient, the family caregiver and formal caregivers, with a focus on human dignity; and b) analyze some of the ethical issues experienced by nurses when faced with people with advanced HF. Three field studies were developed. The first study was carried out with patients with advanced HF, through semi-structured interviews, applied in the home context. The second study was developed with family caregivers of patients with advanced HF, using individual interviews. Finally, in the third study, focus groups were made up of formal caregivers (nurses) with experience in caring for people with advanced HF. The methodological option for the development of the different studies was based on the phenomenological-interpretative approach and was inspired by Paul Ricoeur’s hermeneutic philosophy. Qualitative data analysis was performed using the Nvivo10 software. The results suggest that the HF confronts the person with a representation of him/herself different from the usual one, and for which he hardly feels prepared. The person analyzes and rethinks their world (in the personal, relational and spiritual spheres) in an attempt to restore his/her balance and preserve dignity. The findings also reveal that the family caregiver's experience is that of an assault on his daily life, motivated by the responsibilities of starting to care for someone unexpectedly. Regarding the nurses' speeches, these evoke the need for a praxis capable of promoting and defending the dignity of the patients, as an absolute value. There were several ethical questions presented, regarding interventions that prolong life at the expense of quality of life; and decision-making processes related to the suspension of invasive measures. The challenges are innumerable, ranging from the need to generate and allocate meaning to the illness and its social responsibilities, to the need to deal with its consequences, in order to find adaptive strategies. Indeed, this study beyond to unveiling the lived experience, has the potential to contribute to an updated practice focused on the promotion of human dignity.
Description
Keywords
Bioética Dignidade humana Experiência vivida Insuficiência cardíaca Narrativa Bioethics Human dignity Lived experience Heart failure Narrative