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A Theoretical Model of the Psychological Processes of Surrogate Decision-Making at Adult End-of-Life in the Intensive Care Unit: A Case Study Design Using Cognitive Task AnalysisDionne-Odom, James Nicholas January 2013 (has links)
Thesis advisor: Pamela J. Grace / Significance/Background: Surrogate decision-makers (SDMs) take part in 1.5 million end-of-life (EOL) decisions per year. Most find the role burdensome, often do not make decisions concordant with patients' wishes, and many suffer negative psychological aftereffects. Specific Aims: 1) Identify and describe the psychological processes of recent SDMs for adults at EOL in the intensive care unit (ICU) and 2) develop a theoretical model of SDMs' psychological processes. Methods/Analysis: Descriptive, multiple case study research design using a cognitive task analysis (CTA) interviewing approach. Participants completed an in-depth semi-structured CTA interview and a demographic form. Verbatim transcribed interviews were encoded and analyzed until theoretical saturation was met. Results: Nineteen SDMs (female=11) with a mean age of 59 years (± 11) who made decisions for patients (mean age, 67±13 years) who died in the ICU completed interviews. Data analysis yielded 27 psychological processes representing the hypothesized theoretical links amongst 20 individual psychological concepts. The PREDICAMENTS model (Psychology, Reasoning, and Ethics Demonstrated In Choices about the Acceptability of Medical Treatments and Patient Conditions Encountered in Life Threatening Situations) of surrogate decision-making was assembled from these psychological processes and concepts. The model depicts a complex web of psychological processes wherein SDMs ultimately express acceptance or rejection of medical treatments and/or the patient's physical condition based on their perception of the acceptability (or lack thereof) of medical treatments and/or the patient's physical condition. Conclusions: The PREDICAMENTS model offers an initial picture of the underlying psychological processes operating in SDMs decision-making. Implications for Practice and Research: The PREDICAMENTS model can be used to assess and understand SDMs' thought processes, emotions, and ethical concerns. Further research is needed to test and corroborate constructs and linkages in this model with the aim of developing decision support interventions. Ethicists need to discuss the implications of this descriptive theoretical model for the normative ethical standards expected of SDMs. / Thesis (PhD) — Boston College, 2013. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.
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Development and Initial Psychometric Evaluation of Nurses' Ethical Decision Making around End of Life Care Scale (NEDM-EOLCS) in KoreaKim, Sanghee January 2009 (has links)
Thesis advisor: Pamela J. Grace / As supported by extensive literature, nurses have a role to play in helping patients and families in getting their needs understood and met. This ethical responsibility includes decisions made by nurses in the context of end-of-life (EOL) care. Ethical decision-making is known to be influenced by nurses' understanding of their professional accountability and several cognitive processes that underlie moral action. Rest (1986) theorized these processes as: moral sensitivity, judgment, moral motivation, and moral character. However, few instruments have been developed to understand nurses' ethical decision-making during EOL care, and most have focused on a single dimension rather than on the multi-dimensional process. The purposes of this methodological study were: 1) to develop a scale with content domains and items capable of describing Korean nurses' ethical decision-making at EOL and 2) to evaluate the scale's psychometric properties using Korean nurses (N = 230). The criteria for participation were: Korean nurses having more than 2 years of clinical experience in the types of units where most Korean patients spend the end of their lives: critical care, general medical-surgical, and hospice units. The process followed two steps. Phase I consisted of the development of domains and items. Three domains were identified through themes derived from an integrated review of relevant literature and the findings from a preliminary qualitative study involving experts in EOL care in Korea. 95 items were generated within these three domains. Content validation was completed by a panel of six nursing ethics experts, three in Korea and three in the U.S. Next, a pilot study to test readability was conducted using three Korean nurses. During Phase II, 67 items of the NEDM-EOLCS version 3.0 were tested. After item analysis and factor analysis, a 55-item final version of the NEDM-EOLCS was established. The total scale and three subscales reported good reliability and validity. The three subscales were labeled: "perceived professional accountability," "moral reasoning and moral agency," and "moral practice at the EOL." / Thesis (PhD) — Boston College, 2009. / Submitted to: Boston College. Connell School of Nursing. / Discipline: Nursing.
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Erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede : En litteraturöversikt / Experiences of the nursing role in end of life care : A literature rewievEriksson, Elin, Holmberg, Therese January 2019 (has links)
Bakgrund: Av Sveriges befolkning är ungefär 80 % i ett behov av palliativ vård. Majoriteten av dessa beskrivs vara äldre med en långdragen sjukdomsprocess. I ett palliativt vårdande ska sjuksköterskorna utgå från fyra hörnstenar, vilka Socialstyrelsen utvecklat från WHO:s riktlinjer. Enligt dessa ingår det i sjuksköterskans roll att lindra besvärande symtom, arbeta utifrån ett tvärprofessionellt teamarbete, ha goda kommunikationer och relationer samt att ge stöd till närstående. Syfte: Att belysa erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Metod: En litteraturöversikt gjordes där tio kvalitativa och kvantitativa artiklar användes till resultatet som belyser erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Sökningarna gjordes i databaserna, CINAHL Complete, PubMed och Medline with Fulltext. Artiklarna analyserades med hjälp av färgkodning. Resultatet: Resultatet visade på sjuksköterskors erfarenheter av att agera patientens advokat, vikten av att arbeta i ett vårdteam, sjuksköterskornas erfarenheter av att vara utbildad och föra sin kunskap vidare samt sjuksköterskornas erfarenhet att vilja främja hälsa. Diskussion: Metoddiskussionen belyser tillvägagångssättet, svagheter och styrkor. Resultatdiskussionen lyfts utifrån Watsons caritasprocesser som stärker det sjuksköterskorna återger, där relationen är en nyckelkomponent i vårdandet samt hur brister i kommunikationen kan förstås. Det framgick att sjuksköterskor hade olika erfarenheter av vård i livets slutskede och att de mer erfarna var de som kände sig tryggast. Ur detta ges egna reflektioner av det ideala vårdandet enligt Watson, och hur det kan användas i praktiken av sjuksköterskor.
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Health Challenges of Family Members in End of Life SituationsUnknown Date (has links)
The growing older adult population, their age-related morbidities, and lifelimiting
chronic illnesses increase the demand for quality yet cost-effective end of life
(EOL) care. Losing a loved one creates emotional turmoil, heightened uneasiness, and
EOL uncertainties for family members. Understanding the complex needs of family
members and supportive actions deemed most significant to them can guide nurses to
enhance EOL care, encouraging palliation and peaceful death experiences. This study
used a qualitative descriptive exploratory design guided by story theory methodology to
explore the dimensions of the health challenge of losing a loved one who had been in an
acute care setting during the last three months of life, the approaches used to resolve this
health challenge, and turning points that prompted decisions about a loved one’s care
with 15 older adults residing in a Continuing Care Retirement Community (CCRC) in
Southeast Florida. Theoretical grounding for this study was Watson’s (1988, 2002)
theory of human caring and Smith and Liehr’s (2014) story theory. Older adults’ stories
were analyzed through theory-guided content analysis. Themes that describe the health challenge include moving from painful holding on to poignant letting go, uneasiness that
permeates everyday living and precious memories, patterns of disconnect that breed
discontent, and pervasive ambiguity that permeates perspectives about remaining time.
Approaches to resolve this challenge include active engagement enabling exceptional
care for loved ones, appreciating the rhythmic flow of everyday connecting and
separating to get by, and embracing reality as situated in one’s lifelong journey. Failure to
establish normalcy, coming to grips with abrupt health decline/demise, and recognition –
there’s nothing more to do – were the turning points identified by CCRC residents. Older
adults’ vivid recollections of losing a loved one and willingness to share EOL concerns as
well as recommendations regarding support of family members who are facing this
challenge serve as invaluable guidance for improving EOL care for dying patients and
their family members. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2016. / FAU Electronic Theses and Dissertations Collection
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Percepção dos sintomas e sofrimento no fim da vida das crianças com câncer e repercussões nos cuidadores / Symptom perception and end of life suffering of cancer children and the repercussion on caregiversBoldrini, Erica 02 February 2015 (has links)
Introdução: Apesar do progresso da oncologia pediátrica, ainda existem pacientes que não atingem a cura. Estudos mostram que estes recebem tratamento agressivo no fim da vida, sem controle efetivo dos sintomas, com sofrimento significativo. O cuidador familiar é fonte preciosa de informações conforme a morte da criança se aproxima. No entanto, as impressões parentais podem não refletir precisamente a experiência da criança, pois presenciar sofrimento pressupõe sofrimento. Talvez isso explique a discordância entre o relato dos pais e os registros médicos. A convivência com o sofrimento do filho morrendo permanece gravado na memória dos pais. Acreditar que o filho morreu sofrendo pode levar a morbidade psicológica e interferir no futuro deles. Avaliou-se a percepção dos pais sobre os sintomas que afetaram o bem estar dos seus filhos no fim da vida, comparou-se com os dados da equipe médica e relacionaram-se as circunstâncias em que a morte ocorreu com transtornos de humor e presença de luto complicado. Material e métodos: em 2012 entramos em contato com 250 famílias que perderam o filho no período de 2000 a 2010, em um Hospital especializado, no interior do Brasil, que realiza atendimento através do sistema governamental. A pesquisa foi conduzida através de questionários auto-aplicáveis enviados pelos correios. Resultados: tivemos a participação de 60 cuidadores com tempo de luto variando entre 14 e 80 meses. Esses relataram média de 12 sintomas que afetaram o bem estar dos filhos na última semana de vida, sem concordância quando comparado com os dados registrados pela equipe médica, até mesmo para o sintoma dor. Esses pais apresentam altos níveis de ansiedade e depressão (74,0% e 81,0% respectivamente) e altos níveis de luto complicado (38,0% com luto baixo/ausente, 12,0% com luto adiado e 34,0% como luto prolongado). Os maiores escores de luto atual foram evidenciados entre os cuidadores casados, com idade variando entre 30-39 anos, analfabetos, assalariados, com outras religiões que não a católica, pertencente às classes econômicas C/D/E, que tiveram um filho único, que está há mais de 72 meses de luto, cujo filho tinha no momento do óbito idade entre 12 e 18 anos, era portador de tumor de SNC, estava em tratamento com intenção curativa e faleceu na enfermaria. Evidenciamos correlação entre a carga de sintomas referida pelos médicos com luto passado e luto presente. Analisando as Introdução: Apesar do progresso da oncologia pediátrica, ainda existem pacientes que não atingem a cura. Estudos mostram que estes recebem tratamento agressivo no fim da vida, sem controle efetivo dos sintomas, com sofrimento significativo. O cuidador familiar é fonte preciosa de informações conforme a morte da criança se aproxima. No entanto, as impressões parentais podem não refletir precisamente a experiência da criança, pois presenciar sofrimento pressupõe sofrimento. Talvez isso explique a discordância entre o relato dos pais e os registros médicos. A convivência com o sofrimento do filho morrendo permanece gravado na memória dos pais. Acreditar que o filho morreu sofrendo pode levar a morbidade psicológica e interferir no futuro deles. Avaliou-se a percepção dos pais sobre os sintomas que afetaram o bem estar dos seus filhos no fim da vida, comparou-se com os dados da equipe médica e relacionaram-se as circunstâncias em que a morte ocorreu com transtornos de humor e presença de luto complicado. Material e métodos: em 2012 entramos em contato com 250 famílias que perderam o filho no período de 2000 a 2010, em um Hospital especializado, no interior do Brasil, que realiza atendimento através do sistema governamental. A pesquisa foi conduzida através de questionários auto-aplicáveis enviados pelos correios. Resultados: tivemos a participação de 60 cuidadores com tempo de luto variando entre 14 e 80 meses. Esses relataram média de 12 sintomas que afetaram o bem estar dos filhos na última semana de vida, sem concordância quando comparado com os dados registrados pela equipe médica, até mesmo para o sintoma dor. Esses pais apresentam altos níveis de ansiedade e depressão (74,0% e 81,0% respectivamente) e altos níveis de luto complicado (38,0% com luto baixo/ausente, 12,0% com luto adiado e 34,0% como luto prolongado). Os maiores escores de luto atual foram evidenciados entre os cuidadores casados, com idade variando entre 30-39 anos, analfabetos, assalariados, com outras religiões que não a católica, pertencente às classes econômicas C/D/E, que tiveram um filho único, que está há mais de 72 meses de luto, cujo filho tinha no momento do óbito idade entre 12 e 18 anos, era portador de tumor de SNC, estava em tratamento com intenção curativa e faleceu na enfermaria. Evidenciamos correlação entre a carga de sintomas referida pelos médicos com luto passado e luto presente. Analisando as variáveis relacionadas ao luto presente evidenciou-se forte correlação positiva com o luto passado, com ansiedade e depressão e correlação negativa com o tempo de cuidados paliativos. Como fatores preditores na análise de regressão múltipla evidenciaram-se o luto passado e a depressão. Conclusão: Os pais relataram grande sofrimento dos filhos no fim da vida, sem concordância com os dados da equipe médica. Dois terços dos cuidadores apresentam sintomas de ansiedade e depressão e 84% apresentaram alguma reação de luto complicado. Evidenciou-se forte correlação positiva do luto presente com o luto passado, com ansiedade e depressão e a com a carga de sintomas referida pelos médicos e correlação negativa com o tempo de cuidados paliativos / Introduction: Despite all the progress in pediatric oncology, there are still patients who cannot achieve cure. Studies show that they receive aggressive treatment in the end of life, with no effective control of symptoms, and endure considerable suffering. The family caregiver is a precious source of information as the death of the child approaches. Parental impressions may not reflect accurately the child\'s experience due to the fact that witnessing suffering implies in suffering. This may explain the discrepancy between the parents\' reports and the medical records. Living with a dying child remains engraved in the parents\' memories. Believing that their child died in pain may lead to psychological morbidity and interfere in their future. Parental perception on the symptoms that affected the well- being of the child in the end of life was evaluated and compared with medical data, and the circumstances in which death occurred were related with mood swings and the presence of complicated grief. Material and methods: In 2012, 250 families that had lost a child between the years of 2000 and 2010, in a specialized, public hospital in Brazil, were contacted. A survey was carried out through self- applied questionnaires sent by mail. Results: 60 caregivers with time of mourning ranging between 14 and 80 months reported, on average, 12 symptoms that affected the well-being of their children on their last week of life, and these reports did not agree with the data recorded by the medical team. These parents present with high levels of anxiety and depression (74.0% and 81.0% respectively), as well as complicated grief (38.0% absent/ low grief, 12.0% delayed grief and 34.0% prolonged grief). The highest grief scores were seen among the caregivers who met the following parameters: married, age range between 30 and 39, illiterate, minimum wage and social class C/D/E. They had also been mourning the loss of their only child, who was between 12 and 18 years old at the time of death, had CNS tumor, was treated with curative intention and died in the infirmary. There was evident correlation between the burden of symptoms referred by the doctors with past and present grief. When the variables related to present grief were analyzed, there was strong positive correlation with past grief, showing anxiety and depression; and negative correlation with palliative care time. As predictor factors in the multiple regression analysis, past grief and depression were evident. Conclusion: Parents related great suffering of their children in the end of life, which did not agree with the medical data. Two thirds of the caregivers present symptoms of anxiety and depression and 84.0% present some reaction of complicated grief. There was strong positive correlation between present and past grief with anxiety and depression, and with the burden of symptoms referred by doctors, and negative correlation with palliative care time
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Sobre o final da vida : experiência de estudantes de enfermagemDornelles, Carla da Silveira January 2017 (has links)
A Enfermagem como profissão se ocupa com o alívio do sofrimento, com a minimização da dor, com a dignidade diante da morte, com aspectos envolvidos com a condição humana, com o percurso da vida, com o cuidado do outro e de si. Falar sobre o final da vida, sobre como lidar com o luto são permanentes temáticas na mídia, nas redes sociais, nos grupos de conversas, o que o torna tema para a problematização de pesquisas. As tentativas de minimizar as angústias, as frustrações e os medos dos profissionais e estudantes que cuidam de pessoas que estão morrendo são inúmeras, assim, fui instigada a repensar minha maneira de ensinar e meus modos de agir em relação a pessoas que estão no final da vida. Neste contexto, considerando as vivências dos alunos durante a formação em Enfermagem, organizei a seguinte questão de pesquisa: como é iniciar as práticas hospitalares cuidando de pacientes no final da vida? Deste modo, tracei como objetivo conhecer as vivências de estudantes de graduação em enfermagem que iniciaram suas práticas hospitalares cuidando de pacientes no final da vida. Trata-se de uma pesquisa qualitativa, descritiva, que utilizou a técnica de grupo focal para produção de dados. Participaram do grupo estudantes do Curso de Enfermagem da Universidade Federal do Rio Grande do Sul (UFRGS) que vivenciaram a primeira prática hospitalar no Núcleo de Cuidados Paliativos do Hospital de Clínicas de Porto Alegre (HCPA). Para análise dos dados foi utilizada a análise do discurso proposta por Michel Foucault que explicita a íntima relação entre discurso e poder. Os discursos foram organizados de modo a destacar o domínio, a descrição dos acontecimentos, a língua e o acontecimento discursivo. A partir deste percurso, procurei signos que designam coisas e essas coisas é que foram descritas. Da análise das falas emergiu a categoria Aprendendo a ser trabalhador que é apresentada com dois marcadores discursivos denominados: Mesmo estando ali, parece que eu não faço nada e Caiu a ficha, que caracterizam o processo vivenciado pelos estudantes. A partir das falas dos estudantes e com a contribuição teórica de Jorge Larrosa (1994) foi possível modificar a palavra vivência, presente na pergunta e objetivo da pesquisa, por experiência. Assim, refletiu-se sobre experiência, experiência de si, tecnologias do eu entre outros conceitos sustentadores para procurar entender o processo de aprender a ser trabalhador. Os estudantes têm a impressão de que não fazem nada, considerando que historicamente a enfermagem empreende ações para “salvar vidas” e não para ajudar a morrer. É possível pensar que a morte do paciente desencadeia uma ausência de autoconfiança, uma debilidade, vergonha, culpa, e até abala a identidade com a profissão. Depois, cai a ficha, quando percebem que podem fazer muito pelos pacientes, seja um banho, uma troca de bolsa de colostomia, um conforto. Tais experiências representam o processo de ser trabalhador, que passa por domínios de saber, tipos de normatividade e subjetivação. Ao problematizar como estudantes experenciam o cuidado de enfermagem diante do final da vida pretendi demonstrar que mesmo que alunos e alunas tenham conhecimento sobre o final da vida, sobre o corpo, cada morte de paciente será evento novo, diferente do outro, pois cada pessoa, cada circunstância tem singularidades que necessitam ser consideradas. Cabe aos profissionais, estudantes e professores/as (re)conhecerem que a experiência é evento único, que se desenvolve a partir de determinadas tecnologias do eu. / Nursing, as a profession, is concerned about the relief of suffering, the minimization of pain, the dignity before death, about aspects related to the human condition, way of life and taking care of each other and of themselves. Talking about the end of life and dealing with mourning are permanent themes in the media, social networks, groups of conversations among other social forums, which makes this subject relevant to a research issue. Attempts to minimize the anxieties, frustrations and fears of professionals and students taking care of people who are dying are numerous. Since life is permeated by discourses and knowledge, I was instigated to rethink the way I teach, as well as the way I face what causes discomfort for the students, regarding this issue. On the context of the end of life and the experiences of the students through education in nursing, I performed the following research question: How to start hospital practices taking care of patients at the end of their lives? Thereby, traced as an objective to know the experiences of undergraduate nursing students who started their hospital practices caring for patients at the end of their lives. The present research is qualitative and descriptive and, through the focus group technique, analyzed discourses of students of the Nursing Course who experienced the first hospital practice in the Center of Palliative Care of the Hospital of Clinics of Porto Alegre (HCPA). As a result from the analysis emerged the category named as “Learning to be a worker”, presented with two markers denominated: “even being there, it seems that I do not do anything” and “I realized” that characterize the process experienced by the students. From these markers, it was possible to reflect on the experience, self-experience, technologies, among other supportive concepts for the possibility of understanding the process of learning how to be a worker. Students have the impression that they do nothing, considering that historically nursing undertakes actions to "save lives" and not to help to die. It is possible to think that death triggers an absence of self-confidence, weakness, shame, guilt, and even loss of identity with the profession. To discuss how students experience nursing care facing the end of life was not to confirm what is already said and written about the lack of preparation of the students. The aim was to demonstrate that independent of the knowledge about the end of life, each event of death will be different from the other, each person; each circumstance has singularity, individuality, both of himself and of the other. It is up to the professionals, students and teachers to know that the experience is a single event, that develops the self-technologies, that makes possible the theory of practice, allows the reflection on the technicality on the fragmentation of the care. Thus, caring will not be purely prescriptive, automatic/mechanical, aiming at the object, it will enable the subjectivity of human conditions and the uniqueness of oneself and the other.
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Barn i sorg, Hur barn upplever förlusten av en nära anhörigClaesson, Alexandra, Erlandsson, Jennie January 2012 (has links)
SammanfattningVid en förlust av en nära anhörig kan ett barns livsvärld förändras, vilket kan innebära ett lidande för barnet. Beroende på barnets ålder, utvecklingsstadium och tidigare erfarenheter reagerar alla barn olika. Sjuksköterskan kan möta barn i sorg inom vården och därför behöver denne veta hur barnet reagerar på förlusten av en nära anhörig.Syftet med studien är att belysa hur barn upplever förlusten av en nära anhörig. Vi gjorde en litteraturstudie mellan årtalen 1999-2011, där vi använde oss av åtta artiklar i vårt resultat. Där framkom fyra ämnen: barnets sätt att hantera sorgen, omständigheter kring dödsfallet, förståelsen av döden utifrån ålder och utveckling och genusperspektiv. Barnen behöver rak och ärlig information anpassat till dess ålder och utvecklingsnivå. Vidare framkom att sjuksköterskan behöver mer kunskap inom området.
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Edith Stein's critique of Martin Heidegger : background, reasons and scopeRipamonti, Lidia January 2013 (has links)
This thesis is a critical assessment of Edith Stein’s critique of Martin Heidegger, which is focused on the definition of the human being. I explore Stein’s ontology of the person from the point of view of her examination of Heidegger’s existential ‘Dasein’ and the way she reaches a very different answer to the same question that Heidegger posed, the question of the meaning of being. To this end I examine key passages of Stein’s most important ontological work Finite and Eternal Being - An Attempt at an Ascent to the Meaning of Being along with its appendix Martin Heidegger’s Philosophy of Existence, in which she directly discussed Heidegger’s philosophy, focusing on his work Being and Time. In the first part of this research I draw a historico-philosophical overview of the academic and political background of the period between World War I and World War II in Germany in order to position both authors in context and investigate their philosophical influences as well as their ambiguous relationship with the phenomenological school. The central part is dedicated to Stein’s analysis of Heidegger’s Dasein: I compare and explain both authors’ approaches to the philosophical understanding of human being, person, life, soul and death. This investigation was carried out with both a hermeneutical and terminological analysis. I draw upon the results to demonstrate how Stein’s phenomenology of life experiences enlarges the borders of human finitude to embrace the possibility of its ontological horizon while Heidegger restricts and concentrates the entire ontological question on the Dasein, its existence and ultimately its finitude. My findings provide an assessment of the limits as well as the strengths of Stein’s critique. I demonstrate that Stein attempted to build a bridge between classical ontology and phenomenology, while Heidegger’s distance from the philosophical tradition was rooted in his methodological refusal. I also show how their opposite methods and findings present unexpected similarities and how Stein’s philosophical significance should be reconsidered in the light of her work. This research leads to various implications for today’s philosophical debate and makes it possible to view Stein’s theory of being in a wider ethical context, as presented in the final part of this work. I argue that Heidegger depersonalises and violates traditional ontology to explain the human being only in terms of pure existence, while Stein’s portrait of the ‘fullness’ and the meaning of life contributes to the discussion between philosophy and religion. In the final section of this work I show how some of the elements emerging from Stein’s critique of Heidegger can cast a light on the current ethical discussion about how death is understood and experienced socially, and how best to care for the dying.
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O familiar cuidador e o processo de fim de vida e morte de seu ente querido: uma compreensão fenomenológica / The family caregiver and the end of life and death of your loved one: a phenomenological studyAna Paula Fujisaka 06 June 2014 (has links)
O presente trabalho teve como objetivo compreender a vivência do familiar cuidador durante e após cuidar de um ente querido em seu processo de fim de vida e morte. Com os crescentes avanços científicos e tecnológicos, a expectativa de vida da população mundial tem aumentado, além disso, pessoas de quaisquer faixas etárias têm sobrevivido por mais tempo a doenças graves e/ou acidentes. Essas mudanças significativas ocorridas na população têm aumentado a demanda por cuidados, que têm sido realizados, em sua maior parte, por familiares mais próximos. Dessa forma, o objetivo desta pesquisa foi conhecer melhor esse familiar cuidador; os impactos para ele na experiência de cuidar, o seu papel no processo, e como lida com as idiossincrasias dessa intensa vivência. O trabalho foi fundamentado no método fenomenológico de pesquisa de Amedeo Giorgi. Foram realizadas entrevistas individuais abertas com os colaboradores, que partiram da pergunta: Como foi para você ter acompanhado e cuidado de seu ente querido em seu processo de fim de vida? E como foi ter vivido a perda dele? Que foram acompanhadas de acordo com o que os familiares consideravam relevante. Participaram deste estudo seis adultos, três mulheres e três homens, com idades entre 26 e 63 anos, cuidadores de familiares acometidos por doenças potencialmente fatais. Os colaboradores foram localizados pela divulgação do trabalho entre pessoas conhecidas e escolheram participar voluntariamente. A compreensão das narrativas mostrou que: 1) Quando uma pessoa com doença potencialmente fatal é diagnosticada e passa a ser tratada/cuidada, é fundamental englobar nesses cuidados também sua família, em especial o membro cuidador, pois esse é fortemente afetado pela doença e seus desdobramentos, vivenciando impactos e rupturas, acompanhados de muito sofrimento e angústia; 2) A relação entre a pessoa com a doença/familiar cuidador e os profissionais de saúde mostrou-se importante, influenciando todo o processo de fim de vida e morte. Porém, os profissionais também apresentam suas dificuldades em lidar com o sofrimento e a finitude humanas. Assim, é imprescindível apontar a necessidade de também receberem cuidados em meio à sua prática cotidiana; 3) Destacou-se ainda a importância dos cuidados nãofarmacológicos/ não-técnicos no cuidado a cuidadores familiares e cuidadores profissionais. É necessário recuperar modos de escuta e acolhimento, em um movimento de se desvincular da grande dependência do tecnicismo, abrindo espaço para as subjetividades; 4) E ainda, é preciso enfatizar a necessidade do próprio cuidador, em sua intensa vivência, poder se ver/se perceber em todo esse processo. Perceber-se enquanto ser que sofre, angustia-se perante a dor e a morte. É importante que acolha a própria dor e angústia e, assim, possa crescer/projetar-se para as inúmeras perspectivas que o poder-ser da existência humana possibilita. Tendo como base os achados, ao final, há a apresentação de palavras diretamente escritas a profissionais e cuidadores. Dessa forma, este trabalho, enquanto amplia as compreensões a respeito da intensa vivência que é o cuidar de um ente querido/paciente em seus últimos momentos de vida, pode auxiliar familiares cuidadores e profissionais de saúde em sua profunda jornada / This study aimed to understand the experiences of family caregivers during and after caring for a loved one in the process of end of life and death. With important progress in scientific and technological areas, life expectancy of the world population has increased. Moreover, people of any age have survived longer with serious illnesses and/or accidents. These significant changes in population has increased the demand for care, which have been conducted, mostly by close relatives. Then, the aim of this research was learning more about this caregiver; understanding the impacts to him in care experience, their role in the process and knowing better how he deals with the idiosyncrasies of this intense experience. This work is based on the phenomenological research method developed by Amedeo Giorgi. The interviews had a non-directive approach and were started with the question: How did you experienced the taking care of your loved one in an end of life process? And how did having lived his/her loss? They were conducted taking in account what the participants considered as relevant issues. Six adults participated, three men and three women, ranging from 26 to 63 years of age; they were the main caregivers of relatives with potentially fatal diseases. The collaborators had knowledge about the study through divulgation for known people and voluntarily wished to cooperate. The comprehensive analysis of the narratives showed that: 1) It is fundamental to include family, especially the caregiver member, in the care when a person with advanced disease is diagnosed and is treated/cared. It because the caregiver is strongly affected by the disease and its consequences, experiencing impacts and disruptions, accompanied by much suffering and anguish; 2) The relationship between the person with the disease/caregivers and health professionals proved important, because it influences the whole end of life process and death. However, professionals also have their difficulties in dealing with suffering and human finitude. Therefore, it is essential to foreground the need to also receive care in their daily practice; 3) It was also highlighted the importance of nonpharmacological/ non-technical care in caring for family caregivers and professional caregivers. It is necessary to recover ways of listening and acceptance, in a movement to avoid the heavy reliance on technicality and to make room for subjectivities; 4) And, it is necessary to emphasize the need for the caregiver to see and perceive himself/herself throughout this process. Perceive himself as being who suffers and anguishes in front of pain and death. It is important to embraces his/her pain and anguish and, then, can grow/project himself to the numerous perspectives that the can-be human existence allows. At the end, based on findings, there is a presentation of words written directly to professionals and caregivers. Thus, this paper, while expanding understandings about the intense experience that is caring for a loved one/patient in the last moments of life, can help family caregivers and health professionals in your deep journey
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Mulheres com diagnóstico avançado de câncer: fatores relevantes para a qualidade de vida no final da vida / Women with advanced cancer diagnosis: factors relevant to quality of life at the end of lifeSousa, Serlandia da Silva 30 November 2016 (has links)
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Previous issue date: 2016-11-30 / INTRODUCTION: The end of life of cancer patients can be not only painful, but also with a
huge impact on their Quality of Life (QoL). There is a gap concerning to the care of which
factors are relevant and important and how they can be managed by the health team. AIMS:
Recognize which factors can affect the Quality of Life in women with advanced breast and
cervical cancer. METHODS: From July to December of 2015, a Cross-sectional and
prospective study was performed in 50 patients with advanced breast cancer and uterine
cervical that had been treated in the outpatient and inpatient sectors at the Clinic of Oncology
from the Aldenora Bello Institute of Oncology, São Luis, Maranhão. Sociodemographic,
clinical and religious data were collected, and questionnaires were also applied: Religiosity
and Spirituality Coping (REC), Quality of Life, Whoqol - bref of the World Health
Organization (WHO), Depression Scale (Beck Inventory) and Self Efficacy Scale. In a second
moment, after the death, the assessment of quality of life and at the end-of-life care variables
were made via an interview with the patient's personal caregiver. To evaluate the correlation
among the instruments that were considered in this study, it was calculated the Spearman’s
correlation coefficient. RESULTS: It was not possible to realize the statistically significant
correlation between QoL in patients' and their caregivers' perspective. There was a significant
and positive correlation between length of hospital stay and ICU time with level of patients
concern. There was still a weak but significant inverse correlation of the physical stress level
of the patients and their ICU stay according to the caregiver's perspective. Based on these
caregivers' perspective, the QoL in the last days of life obtained an inverse and significant
correlation with the variable negative reevaluation of the spiritual meaning of the patients.
The length of stay (LOS) in an intensive care unit (ICU) had a strong and significant inverse
correlation with self-efficacy. Moreover, the patient's level of concern had a positive and
significant correlation with depression. CONCLUSION: In their last days of life, the patients
had a low quality of life, becoming worse whether it is considered the length of stay
(especially in ICU) in patients with negative reevaluation of the spiritual meaning, with low
self-efficacy and depressed. / INTRODUÇÃO: O final da vida de pacientes com câncer pode ser, não apenas sofrido, mas também com grande impacto na Qualidade de Vida (QV). Há uma lacuna no atendimento de quais fatores são relevantes e importantes e que podem ser manejados pela equipe de saúde. OBJETIVO: Determinar quais os fatores que influenciam na qualidade de vida de mulheres com câncer avançado de mama e de colo de útero. METODOLOGIA: Estudo transversal e prospectivo realizado com 50 pacientes com câncer de mama e de colo de útero em estágio avançado, atendidas nos setores ambulatorial e de internação da Clínica Oncológica do Instituto Maranhense de Oncologia Aldenora Bello, no período de julho à dezembro de 2015. Foram coletados dados sociodemográficos, clínicos e religiosos, e ainda foram aplicados questionários: Coping religiosidade e espiritualidade (CRE), Qualidade de Vida WHOQOL – bref da Organização Mundial de Saúde (OMS) Escala de Depressão (Inventario de Beck) e Escala de Autoeficácia. Em um segundo tempo, após o óbito, foi feita a avaliação da qualidade de vida no final da vida e variáveis do cuidado no final da vida, através de uma entrevista com o cuidador fixo das pacientes. Para avaliar a correlação entre os instrumentos considerados no estudo foi calculado o coeficiente de correlação de Spearman. RESULTADOS: Não foi possível observar a correlação estatisticamente significante entre a QV na visão das pacientes e dos seus cuidadores. Houve correlação significante e positiva entre tempo de internação e tempo em UTI com nível de preocupação das pacientes. Ainda, houve correlação inversa fraca, porém significante, do nível de estresse físico das pacientes e a permanência em UTI, na visão do cuidador. A QV nos últimos dias de vida na visão dos cuidadores obteve correlação inversa e significante com a variável reavaliação negativa do significado espiritual das pacientes. O tempo de internação em UTI obteve correlação inversa, forte e significante, com autoeficácia. Já o nível de preocupação da paciente obteve correlação positiva e significativa com a depressão. CONCLUSÃO: As pacientes tiveram uma baixa qualidade de vida, nos últimos dias de vida, sendo pior quanto maior o tempo de internação (especialmente em UTI), nas pacientes com reavaliação negativa do significado espiritual, com baixa autoeficácia e deprimidas.
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