Base teórica: Entende-se como Cuidados Paliativos a abordagem multidisciplinar que promove a qualidade de vida de pacientes e familiares que apresentam diagnósticos que não são reversíveis. Sendo assim, destina-se aos pacientes crônicos e com doenças que ameaçam a vida. O processo de adoecimento do paciente oncológico é marcado por más notícias desde o recebimento do diagnóstico. Compreendemos aqui como má notícia as informações que provocam rupturas ou mudanças negativas na perspectiva de futuro do paciente e de seu grupo familiar. Objetivos: Avaliar a percepção de pacientes e familiares a respeito do processo de comunicação da informação sobre o quadro clínico e prognóstico do paciente oncológico em cuidados paliativos exclusivos. Métodos: Foi realizado um estudo qualitativo exploratório, do tipo estudos de caso. A amostra foi composta por seis pacientes adultos e sete familiares. As entrevistas semi-estruturadas foram realizadas no Núcleo de Cuidados Paliativos (NCP) do Hospital de Clínicas de Porto Alegre. Os dados obtidos foram avaliados por meio de análise de conteúdo com auxílio do programa Nvivo (QRS International), versão 11. Foi reconstruída a rede social de cada paciente, na sua perspectiva pessoal e na do seu familiar. Resultados: Três categorias emergiram da análise das entrevistas: Compreensão do Processo de Adoecimento, Compartilhamento de Informação e Protagonismo do Paciente. O fluxo de informações entre a equipe e o paciente é, habitualmente, intermediado pelos familiares. Foi constatada uma contradição entre o desejo dos pacientes receberem suas informações clínicas e a crença da família de que é protetor não informar. Entre os familiares, é mais habitual a associação entre cuidados paliativos e a gravidade do quadro clínico e o limite de tratamentos com finalidade curativa. Foram verificadas discrepâncias entre as redes sociais descritas pelos pacientes e por seus familiares. Conclusão: Há uma distorção na relação de privacidade das informações, sendo que o entendimento dos participantes é de que esta relação se estabelece entre familiar e equipe, e não entre equipe e paciente. Os conflitos e as limitações na comunicação geram danos ao paciente, que não se beneficia de forma plena da estrutura e das possibilidades propostas pela abordagem dos cuidados paliativos nem participa adequadamente do processo de tomada de decisão. / Background: Palliative care is understood as the multidisciplinary approach that promotes the quality of life of patients and families who present diagnoses that are not reversible. Thus, it is intended for chronic and life-threatening patients. The process of illness of the oncological patient is marked by bad news since the receipt of the diagnosis. We understand here as bad news information that causes ruptures or negative changes in the perspective of the future of the patient and his family group. Objectives: To evaluate the perception of patients and their relatives regarding the process of communication of information about the clinical profile and the prognostic of cancer patients in exclusive palliative care. Methods: An exploratory qualitative study was carried out, such as case studies. The sample consisted of six adult patients and seven relatives. The semi-structured interviews were carried out at the Center for Palliative Care of the Hospital de Clínicas de Porto Alegre/Brazil. The obtained data were evaluated through content analysis with the assistance of the software Nvivo (QRS International), version 11. It was reconstructed the social network of each patient, in their personal perspective and that of their relative. Results: Three categories emerged from the analysis of the interviews: Understanding the Process of Illness, Information Sharing and Patient Protagonism. Family members usually mediate the information flow between the team and the patient. There was a contradiction between the patients' desire to receive their clinical information and the family belief of which it is protective not to report. Among relatives, the association with the severity of the clinical condition and the limit of treatments with a curative purpose is more common. There were discrepancies between the social networks described by the patients and their relatives. Conclusion: There is a distortion in the information privacy relationship; participants' understanding is that this relationship is between family and health professional team, not between team and patient. Conflicts and limitations in communication create harm to the patient, who does not fully benefit from the structure and possibilities offered by the palliative care approach and does not participate adequately in the decision-making process.

The shift in health care and nursing philosophy and practice from a holistic approach to a highly technological, cure-oriented approach has been attributed to effective pharmaceuticals made to prolong life. Recently medical professionals have shifted their focus to a combination of spiritual healing and medicine. Hospice care in particular have taken a key interest in integrating spirituality within their health care. The problem is that due to the complications in defining spirituality and appropriate training and education of spirituality within nursing curriculum, assessing patients' spiritual distress may be difficult for many hospice nurses which may be at a loss when attempting to integrate spirituality within their practice. This study used a phenomenological approach to explore the infusion of spirituality in nursing practice and the hospice nurses perceptions of assessing spiritual distress needs of terminally ill patients. Frankl's existential theory and Kubler- Ross's stages of grief theory framed the study. Participants included 8 hospice nurses working in a Pacific Northwestern state. Face-to-face interviews were conducted to explore the essence of the experience of integrating spirituality as well as their views and concerns regarding assessment instruments used to assess spiritual distress. Data was analyzed for content themes. The study found that spiritual courses were merged into hospice nursing as a teaching unity making it difficult for hospice nurses in a Pacific Northwestern State to fully grasp the concept of spirituality. Further findings suggested that only a handful of schools had spiritual nursing as an independent course. The study may impact social change by informing the advancement of hospice nurses and hospice administrators in the practice of including spirituality within healthcare and integrating extensive existential support training within nurses' curriculum.

published_or_final_version / Architecture / Master / Master of Architecture

Thesis (M.S.)--University of South Florida, 2007. / Title from PDF of title page. Document formatted into pages; contains 52 pages. Includes bibliographical references.

Psychosocial support is said to be an inherent component of nursing care and a major focus of palliative care. Literature exists which outlines perceptions of the psychosocial needs of patients and how psychosocial support should be provided. However, there is a lack of empirical evidence on how psychosocial support is operationalised in practice. This study provides a valuable and substantial new contribution to the evidence on the psychosocial needs expressed by patients in a hospice ward and how nurses immediately respond to these needs within their everyday practice. A study gathering data via observations with matched interviews of patients and nurses, organisational, documentary, and demographic variables, was conducted over an eight month period. Thirty-eight nurses (registered and auxiliary) and 47 patients were included in a maximum variation sampling strategy. Data was analysed using constant comparative qualitative techniques. Patients expressed a wide variety of psychosocial needs, often only signalling them whilst receiving care for other reasons. Considering these needs in relation to Maslow’s (1943) hierarchy of needs suggests that in-patients more commonly express prerequisites to physiological care and ‘lower level’ safety needs rather than the more thoroughly researched and espoused ‘higher’ level psychosocial needs. The nurses reacted to these psychosocial needs with a range of responses which indicated a diminishing level of immediate support: ‘dealing’, ‘deferring’, ‘diverting’ and ‘ducking’. The majority of the nurses were observed using each of these responses at some point during data collection. A variety of the responses were used for each type and context of psychosocial need. These responses were influenced by the ward’s workplace culture. This study demonstrates a requirement for more thorough consideration of the true psychosocial needs of patients, which appear to vary dependent on the context of care. Consideration should be v given to workplace culture and its influence over psychosocial support, with nurses being supported to expand their response repertoire so that patients’ psychosocial needs are acknowledged more. Increasing nurses’ knowledge of the reality of psychosocial support through education and research will encourage formalisation of the place of psychosocial support in the planning, documentation and provision of care. This study shows that ward nurses can offer psychosocial support as an inherent component of their everyday work. Findings derived from this research indicate that developing an understanding of how patients express psychosocial needs in practice, through a consideration of Maslow’s (1943) hierarchy of needs, may increase recognition and support of psychosocial needs and enable nurses to respond more comprehensively.

The first part of my Diploma Thesis is dedicated to dying, it focuses on the perspective of the dying person. It also deals with the essential topics as hospice and palliative care. The second part tries to analyse ethically and evaluate in what sense is dying activity or inactivity and what possible moral attitudes may engage dying person in process of dying. At the beginning of the second part, there are defined the key words activity and inactivity. Basically, I'm trying to use this analysis to ethnically evaluate in which sense of dying is the dying person actually conducting and in which failures to act. Then follows simple typological analysis and evalauation based on inspiring typology of German philosopher Robert Spaemann. In the final part of the Thesis there are implied some connections between dying and the problem of sense of life. The most important is the answer of this question if needs of the sense is belong to everyone (included of dying people) in the same way. Also, how important is the influence in moral attitude of actual human after the sense of life.

This dissertation addresses the need for domestic hospice care in Písek region. The aim of this study was to determine whether there is an interest in the provision of such comprehensive care that seeks to satisfy a physical, mental, social and spiritual need of a person. Investigated was not only view on the need for specialist palliative care, but also reasons why families would chose care in a domestic environment. The theoretical part focuses on the problems linked with hospice care. The study mentions history, presence, legislation and financing of hospice care in Czech Republic. The next chapter deals in detail with one of the forms of palliative care, which is a domestic hospice care. Another part of this study is also dedicated to the needs of 'a dying person' and his or her family which is vitally important in care for people terminally ill. The practical part is processed by a form of qualitative research and for this purpose a methodology of questioning and interview techniques by instructions were used. In total 18 communication partners participated in this research. The data obtained from these interviews were evaluated by a method of an open coding. The research result shows that both professional community members and caring families of are interested in a provision of specialised palliative care. The professional community welcomes an offer of domestic hospice care and considers it important and necessary in offering various types of care for people who are terminally ill. Families of terminally ill people are also interested in domestic hospice care as one of the options being offered. The reasons why families would opt for a care in a domestic environment are healthy and strong relations to their terminally ill relative a 'dying person'. The conclusions from this research may contribute to a closer view on this issue or may become a source of information for families facing difficult decisions regarding care for terminally ill relative in a domestic environment.

The thesis, titled Palliative Care Provided by Patient's Family in Home Environment, discusses the specific care needs of a terminally ill patient in his/her own home. Caring for an ill person in a home environment is beginning to be a growing trend in home care, but also it is an increasingly common wish of the patients themselves. The family is therefore required to have enough theory and practical knowledge in order to deliver a highly demanding personal care for their close family members. The aim of the thesis is to summarize the current situation of delivering palliative care in home environment in Czech Republic whilst concentrating on the specific needs of the patient and the needs of their family. The objectives of the research were to determine whether family members were introduces to the specifics of palliative care of terminally ill patients; to map their skills in delivering palliative care in home environment and to reveal the most common issues that family members come across in that home environment. The final objective was to map out services in regions of Central Bohemia and Liberec that are accessible to family members whilst caring for a terminally ill patient. The research part of the thesis was completed employing a method of qualitative investigation using semi-structured interviews with patient's family members and nurses providing hospice care in home environment. It emerged from the analytical interviews that the family's knowledge level regarding support for palliative care in home environment is very limited and in hospitals families are only given minimal or no support or information. As a final document for the thesis an informative educational brochure was created based on the results of aforementioned research, primarily targeting patient's family; its core objective is to improve information and collate the specifics of care that would allow the patient a dignified end to their life.

Caring for the chronically ill is a growing phenomenon that deserves careful attention and research, since the quality of life of the palliative caregiver is threatened by the continuous exposure to psychological, physiological, as well as relational burdens. A hermeneutic phenomenological study was used to explore palliative caregivers‟ experiences of compassion fatigue when caring for chronically ill patients in a hospice setting. Semi-structured interviews were conducted with Bophelong Community Care Centre‟s palliative caregivers between the ages of 20 and 60 years who were employed in a hospice for a minimum of at least two years, thus well-placed to describe their experiences of compassion fatigue when caring for chronically ill patients in a hospice setting. Data was collected through individual interviews, recorded and transcribed. Using thematic analysis, meaningful patterns and themes of data were discovered to better understand compassion fatigue as a phenomenon of interest. The findings pointed to four categories, i.e. the effects of compassion fatigue on palliative caregivers‟ emotional wellbeing, personal and work relationships, physical discomfort, and spiritual awareness, that describe the experiences of palliative caregivers of compassion fatigue in a hospice setting, thus providing a holistic understanding of the complexity of compassion fatigue in a palliative care hospice setting. / Psychology / M. A. (Psychology)

Base teórica: Entende-se como Cuidados Paliativos a abordagem multidisciplinar que promove a qualidade de vida de pacientes e familiares que apresentam diagnósticos que não são reversíveis. Sendo assim, destina-se aos pacientes crônicos e com doenças que ameaçam a vida. O processo de adoecimento do paciente oncológico é marcado por más notícias desde o recebimento do diagnóstico. Compreendemos aqui como má notícia as informações que provocam rupturas ou mudanças negativas na perspectiva de futuro do paciente e de seu grupo familiar. Objetivos: Avaliar a percepção de pacientes e familiares a respeito do processo de comunicação da informação sobre o quadro clínico e prognóstico do paciente oncológico em cuidados paliativos exclusivos. Métodos: Foi realizado um estudo qualitativo exploratório, do tipo estudos de caso. A amostra foi composta por seis pacientes adultos e sete familiares. As entrevistas semi-estruturadas foram realizadas no Núcleo de Cuidados Paliativos (NCP) do Hospital de Clínicas de Porto Alegre. Os dados obtidos foram avaliados por meio de análise de conteúdo com auxílio do programa Nvivo (QRS International), versão 11. Foi reconstruída a rede social de cada paciente, na sua perspectiva pessoal e na do seu familiar. Resultados: Três categorias emergiram da análise das entrevistas: Compreensão do Processo de Adoecimento, Compartilhamento de Informação e Protagonismo do Paciente. O fluxo de informações entre a equipe e o paciente é, habitualmente, intermediado pelos familiares. Foi constatada uma contradição entre o desejo dos pacientes receberem suas informações clínicas e a crença da família de que é protetor não informar. Entre os familiares, é mais habitual a associação entre cuidados paliativos e a gravidade do quadro clínico e o limite de tratamentos com finalidade curativa. Foram verificadas discrepâncias entre as redes sociais descritas pelos pacientes e por seus familiares. Conclusão: Há uma distorção na relação de privacidade das informações, sendo que o entendimento dos participantes é de que esta relação se estabelece entre familiar e equipe, e não entre equipe e paciente. Os conflitos e as limitações na comunicação geram danos ao paciente, que não se beneficia de forma plena da estrutura e das possibilidades propostas pela abordagem dos cuidados paliativos nem participa adequadamente do processo de tomada de decisão. / Background: Palliative care is understood as the multidisciplinary approach that promotes the quality of life of patients and families who present diagnoses that are not reversible. Thus, it is intended for chronic and life-threatening patients. The process of illness of the oncological patient is marked by bad news since the receipt of the diagnosis. We understand here as bad news information that causes ruptures or negative changes in the perspective of the future of the patient and his family group. Objectives: To evaluate the perception of patients and their relatives regarding the process of communication of information about the clinical profile and the prognostic of cancer patients in exclusive palliative care. Methods: An exploratory qualitative study was carried out, such as case studies. The sample consisted of six adult patients and seven relatives. The semi-structured interviews were carried out at the Center for Palliative Care of the Hospital de Clínicas de Porto Alegre/Brazil. The obtained data were evaluated through content analysis with the assistance of the software Nvivo (QRS International), version 11. It was reconstructed the social network of each patient, in their personal perspective and that of their relative. Results: Three categories emerged from the analysis of the interviews: Understanding the Process of Illness, Information Sharing and Patient Protagonism. Family members usually mediate the information flow between the team and the patient. There was a contradiction between the patients' desire to receive their clinical information and the family belief of which it is protective not to report. Among relatives, the association with the severity of the clinical condition and the limit of treatments with a curative purpose is more common. There were discrepancies between the social networks described by the patients and their relatives. Conclusion: There is a distortion in the information privacy relationship; participants' understanding is that this relationship is between family and health professional team, not between team and patient. Conflicts and limitations in communication create harm to the patient, who does not fully benefit from the structure and possibilities offered by the palliative care approach and does not participate adequately in the decision-making process.