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Projeto de investigação
THE BODY AND ITS SHADWS: AN EXPLORATION OF THE BODILY EXPERIENCES OF TERMINALLY ILL PATIENTS
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The Stigma Experienced by Terminally Ill Patients: Evidence From a Portuguese Ethnographic Study
Publication . Hilario, Ana Patricia
The aim of this study was to offer an understanding of the ways in which terminally ill patients may face discrimination due to their visibly altered body. An ethnographic approach was adopted and fieldwork was conducted over 10 months in 2 inpatient hospice units in Portugal. Participant observation was complemented by 50 in-depth interviews with terminally ill patients, family members, and hospice staff. The stigma experienced by terminally ill patients derived mostly from the behavior of peers, extended family members, and friends toward their visibly altered body. There was no evidence that these patients were discredited by their immediate family when they became visibly unwell; unlike what has been reported in previous studies. This finding could be related to the strong familial culture of Portuguese society.
Pathways for a ‘Good Death’: Understanding End-of-Life Practices Through An Ethnographic Study in Two Portuguese Palliative Care Units
Publication . Hilario, Ana Patricia; Augusto, Fábio Rafael
Drawing upon an ethnographic research developed in two Portuguese palliative care units, this article seeks to analyze end-of-life practices, namely how they are perceived and negotiated among the various actors involved. Over a period of ten months in these units participant observation and in-depth interviews were conducted with twenty family members of patients with a life-threatening illness and twenty health care professionals. Against this backdrop, aspects related to the concept of a ‘good death’, the management of pain and suffering and the loss of consciousness were explored. The main findings pointed to an appreciation, both by professionals and family members, of an holistic intervention that guarantees the patient's physical, psychological, social and spiritual well-being, where the relief of physical symptoms is of particular importance and palliative sedation emerges as a mechanism that allows the patient to achieve a ‘good death’ (without suffering and in a peaceful way).
Desafios éticos, metodológicos e práticos na pesquisa qualitativa em saúde: um olhar a partir de um estudo em torno do processo de morrer
Publication . Hilario, Ana Patricia; Augusto, Fábio Rafael
Partindo de uma experiência de investigação em torno do processo de morrer, este artigo procura discutir alguns dos desafios que emergiram no âmbito de uma pesquisa qualitativa de natureza etnográfica no campo da saúde. A sensibilidade do tema e a vulnerabilidade dos participantes conduziu à necessidade de criar estratégias que mitigassem potenciais efeitos indesejados para os atores envolvidos. Desta forma, discutem-se questões ético-metodológicas e o impacto que a pesquisa assumiu para os participantes e investigador. As principais conclusões apontam, por um lado, para a necessidade de criar diretrizes bem definidas no que diz respeito à pesquisa com sujeitos humanos e, por outro, para a importância de adequar os instrumentos de recolha no sentido de criar proximidade e salvaguardar o bem-estar de todos os intervenientes. Este artigo procura contribuir para um debate em torno dos “bastidores” da pesquisa, dando a conhecer dilemas transversais à investigação.
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Fundação para a Ciência e a Tecnologia
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Número da atribuição
SFRH/BD/43293/2008