| Name: | Description: | Size: | Format: | |
|---|---|---|---|---|
| 1.86 MB | Adobe PDF |
Advisor(s)
Abstract(s)
As últimas décadas ficaram marcadas por extraordinários progressos tecnológicos e terapêuticos, na área dos cuidados intensivos neonatais, que contribuíram para uma enorme diminuição da mortalidade e morbilidade. Estes avanços tiveram repercussão, não só na melhoria dos cuidados, como nas exigências em termos de decisões éticas. O envolvimento dos pais nas tomadas de decisão constitui uma prioridade, numa época também caracterizada por progressos significativos no diagnóstico e nas possibilidades terapêuticas de doenças raras e de grande complexidade. A medicina narrativa surgiu em resposta às dificuldades sentidas pelos profissionais de saúde face às questões éticas e de dificuldades na relação entre quem cuida e quem é cuidado. Dada a escassez de estudos específicos sobre a abordagem da medicina narrativa em Neonatologia propusemo-nos estudar o contributo das narrativas de pais e profissionais de saúde nesta especialidade, nomeadamente em duas dimensões essenciais: a comunicação e a tomada de decisão em cuidados intensivos neonatais. Fizemos um estudo de investigação qualitativo, uma investigação narrativa, a partir da perspetiva bioética aliada aos conceitos e ferramentas da medicina narrativa. Os conteúdos das narrativas dos pais mostram riqueza e diversidade em termos de sentimentos e emoções, evidenciando como esta dimensão subjetiva pode interferir com a comunicação e a tomada de decisão. As narrativas dos profissionais de saúde evidenciam questionamentos éticos de forma muito significativa. Das categorias emergentes do nosso estudo salientamos as metáforas, o sofrimento moral e a espiritualidade. Embora a representatividade deste estudo seja limitada, sublinhamos a necessidade de promover e desenvolver estratégias de melhoria da comunicação e tomada de decisão, formação e aprofundamento de conhecimentos nas áreas da bioética, ética médica e medicina narrativa. Para além disso, enfatizamos a importância da evidência baseada na prática e das narrativas neste campo dos cuidados de saúde. Mais estudos serão necessários.
The last few decades have been marked by extraordinary technological and therapeutic advances in neonatal intensive care, which have contributed to a noticeable decrease in mortality and morbidity. These advances have had repercussions, not only in the improvement of care, but also on ethical decisions requirements. In an era characterized by significant progresses in terms of diagnosis and by wide therapeutical possibilities concerning rare and complex diseases, parents' involvement in decision-making is a priority. Narrative medicine has emerged in response to the difficulties experienced by health professionals, regarding ethical and relational issues concerning those who care and those who are cared for. Given the scarcity of specific studies on the approach of narrative medicine in Neonatology, we have proposed to study the contribution of parents' and health professionals’ narratives in this field, concerning two essential dimensions: communication and decision-making in neonatal intensive care. Our qualitative research study has been conducted from a bioethical perspective allied with the concepts and tools of narrative medicine and narrative research. Parents' narratives contents are rich and diverse in terms of feelings and emotions, revealing how this subjective dimension interfere with communication and decision-making. As far as health professionals' narratives are concerned, they tend to focus on strong ethical questioning. The emerging categories of our study are metaphors, moral suffering, and spirituality. Despite this study-limited representativeness, it underlines the need to promote and develop strategies to improve communication and decision-making, as well as training in the fields of bioethics, medical ethics, and narrative medicine. Moreover, it highlights the importance of practice-based-evidence and narratives in this field of healthcare. More studies are needed
The last few decades have been marked by extraordinary technological and therapeutic advances in neonatal intensive care, which have contributed to a noticeable decrease in mortality and morbidity. These advances have had repercussions, not only in the improvement of care, but also on ethical decisions requirements. In an era characterized by significant progresses in terms of diagnosis and by wide therapeutical possibilities concerning rare and complex diseases, parents' involvement in decision-making is a priority. Narrative medicine has emerged in response to the difficulties experienced by health professionals, regarding ethical and relational issues concerning those who care and those who are cared for. Given the scarcity of specific studies on the approach of narrative medicine in Neonatology, we have proposed to study the contribution of parents' and health professionals’ narratives in this field, concerning two essential dimensions: communication and decision-making in neonatal intensive care. Our qualitative research study has been conducted from a bioethical perspective allied with the concepts and tools of narrative medicine and narrative research. Parents' narratives contents are rich and diverse in terms of feelings and emotions, revealing how this subjective dimension interfere with communication and decision-making. As far as health professionals' narratives are concerned, they tend to focus on strong ethical questioning. The emerging categories of our study are metaphors, moral suffering, and spirituality. Despite this study-limited representativeness, it underlines the need to promote and develop strategies to improve communication and decision-making, as well as training in the fields of bioethics, medical ethics, and narrative medicine. Moreover, it highlights the importance of practice-based-evidence and narratives in this field of healthcare. More studies are needed
Description
Keywords
Cuidados intensivos neonatais Bioética Medicina narrativa Investigação narrativa Comunicação Tomada de decisão Neonatal intensive care Bioethics Narrative medicine Narrative research Communication Decision making