The diploma thesis addresses in detail the issue of a terminally ill individual and things closely associated with this topic including spiritual direction of the bereaved after the death of a close relative. Based on information from the literature it tries to reflect the basic conditions of approach to an oncology patient and his relatives (including the necessity of truthful communication and abidance by basic ethic rules). In order to provide a comprehensive view of the topic, the work includes research among the patient?s relatives realized in 4 out of the 14 hospice centers in the Czech Republic. On the basis of this research some positive aspects have been revealed on one hand, which are worthy acknowledgement and appreciation. On the other hand, there are areas and restraints motivating and challenging both types of healthcare centres to take steps that would lead to a better quality of care provided in the future.

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 thesis deals with palliative and hospice care. The thesis is divided into two parts - theoretical and practical. In the theoretical part there are provided with basic information about palliative care, it describes aspects of palliative care in terms of spiritual, social, psychological and physical. There are also recorded information on facilities that provide palliative care, their characteristic, mission and goals. The thesis is also reported on problems of dying, suffering and death. The work also records a pastoral and social care about dying seniors, a description of a multidisciplinary team of hospice care. The practikal part of the thesis is reported on a detection rate of awareness of palliative and hospice care at the clients of caritas Týn nad Vltavou. Next the research found out the respondents opinion of dignified dying in a domestic care

The thesis deals with the topic of palliative care of child patients/clients. The theoretical part explains the terms palliative, respite and hospice care of both, adult and particularly child clients and their families. The work shows the development of palliative care in our country as well as in the world and highlights the present modern elements of the palliative care approach to a child and his/her family. The practical part is based on a qualitative research that followed two goals and tried to answer two research questions. A research method of content analysis of a document containing data obtained from the Czech Statistical Office was applied on the first goal, aimed at mapping the possible need of palliative care of children in the CR. The number of children that might require palliative care in the CR was estimated upon the data. The second goal was to map the possibilities of palliative care services for children at the territory of the CR. A quantitative method of deep interview was used for implementation of the goal. The research sample consisted of 6 respondents from 6 workplaces. Only general and paediatric nurses from wards and facilities chosen upon the fact that nurses may more often meet an incurably ill child and his/her family were asked.This thesis and its conclusions are mainly aimed at professionals, but also to the general public. The research results inform on the possibilities of providing palliative care to children and their families at the specific departments. The work may be used for study purposes as well as for nurses working at hospices, children oncology wards, home care agencies etc. Paediatric nurses may make use of it as well.

In the theoretical part the terms hospice, home hospice care and palliative care are defined. History, principles, objectives and the concept of hospice care in the Czech Republic are mentioned. The phases of psychological responses to a serious illness undergone by a patient and the patients´ reaction to impending death are described. The traditional model of dying in the Czech Republic in the home environment, the gradual institutionalization and the taboos surrounding death, and the new inception of humane methods in the care for the dying after the year 1989 are particularized. The current types of hospice care in the Czech Republic and especially home hospice care are described in detail, and also the needs of the dying and those of their loved ones, which is the main topic of my thesis. The aim of this work is to survey the availability of palliative home care services in the Vysočina region, to compare the range of offered services, to map the users´ experience and to identify the risk factors in providing this care. In the realized qualitative research the availability of these services was surveyed through the content analysis of data by the technique of official documents and virtual data analysis. In order to map the users´ experience, managers of two agencies providing home hospice care in the town of Třebíč were addressed, as well as the users or their families to whom these agencies provide their services. The interview method, the technique of a semi-structured interview was used. There are eight providers of home hospice care in the Vysočina region. The Vysočina region supports not only home hospice care, but also supported the establishment of residential hospice services in the Long-Term Care Hospitals in three towns in the Vysočina region and the Palliative Care Department in the Jihlava hospital. These facilities have partially substituted a non-existent hospice in the Vysočina region. Hospice care in the Vysočina region is relatively new. It is necessary to get some experience and discover possible shortcomings. The complexity of the care for the seriously ill can be extended, which may enable the seriously ill patients to stay at home with their relatives as long as possible. Although home hospice care has its limits in terms of pain alleviation and complications resulting from a disease, the users´ experience is satisfactory and meets their expectations. The contribution of the thesis lies in uncovering deficiencies in home hospice care and the provision of identified information to the care providers and other health care workers, thus enhancing the awareness of this care among health professionals and family members of seriously ill patients.

Este estudo teve como objetivo interpretar os significados do trabalho em equipe de cuidados paliativos oncológicos domiciliar atribuídos pelos profissionais, por meio do estudo de caso e da análise etnográfica. O referencial teórico que embasou tal interpretação foi a antropologia interpretativa. Participaram da pesquisa oito informantes, profissionais de uma Equipe de Cuidados Paliativos Oncológicos Domiciliar, lotados em um serviço de Internação Domiciliar, em uma cidade do sul do Brasil. A coleta de dados ocorreu no período de junho a dezembro de 2008 nos espaços de atuação do serviço de Internação Domiciliar. Os dados foram coletados por meio de observação participante, diário de campo e entrevistas semiestruturadas. A análise dos dados baseou-se nos pressupostos analíticos da análise hermenêutica dialética e temática. Foram identificados os códigos que mostraram o sentido do trabalho em cuidados paliativos para os participantes e que depois serviram de guia para as unidades de sentidos e a construção dos significados. Da análise emergiram três núcleos de significados: \"Desafios iniciais do trabalho em cuidados paliativos oncológico\"; \"O maior dos desafios: lidar com a morte\" e; \"O trabalho em equipe de cuidados paliativos oncológicos domiciliar: uma trajetória em construção\". O primeiro núcleo aborda os cuidados paliativos oncológicos domiciliar como uma nova prática em saúde, tendo como desafio sua criação no serviço de Internação Domiciliar, os profissionais \"despreparados para atuar na \"nova\" prática, e as emoções permeando a prática dos cuidados paliativos oncológicos. O segundo núcleo trata das concepções e reflexões dos profissionais da equipe sobre a morte; como elaboram as abordagens desse processo com o paciente e família, e a morte como situação de aprendizado para a vida pessoal e profissional. O terceiro núcleo versa sobre o processo de trabalho da Equipe de Cuidados Paliativos Oncológicos Domiciliar; suas relações interpessoais com o paciente, o familiar; e entre si e o contínuo enfrentamento dessa equipe diante do sofrimento e morte do outro. Finalizando, o estudo possibilitou apreender que o trabalho em equipe de cuidados paliativos oncológicos singulariza a atenção domiciliar no sistema público, revelando uma nova modalidade de cuidado, que abrange a multidimensionalidade do ser doente e sua família, por meio de profissionais de diferentes categorias e que em equipe interdisciplinar incorporam uma identidade, a de paliativista. / The objective of this study was to interpret the meanings of the team approach to oncological palliative home care as reported by professionals through a case study and ethnographic analysis. The referential theory in which the interpretation was rooted was that of the interpretive anthropologist. Eight professionals from an Oncological Palliative Home Care Team in southern Brazil participated in the research. The data collection occurred between June and December 2008 in the caregiver workplace by means of participant observation, annotated in a field diary, and semi-structured interviews. Codes that demonstrated the significance of the work of palliative care to the participants were identified, which later served as guides for the significance units and the meaning constructs. Three nuclei of significance emerged from the analysis: \"Initial challenges to the work of oncological palliative care\"; \"The greatest of challenge - dealing with death\"; and \"the work of the team in oncological palliative home care - a trajectory in construction\". The first nucleus deals with oncological palliative home care as a new health practice and the challenge of its development within the larger sphere of Home Care, as well as professionals \"unprepared\" to act in the \"new\" practice and the emotions permeating oncological palliative home care. The second nucleus deals with the conceptions and reflections of the team members about death; how they developed strategies for addressing this process with the patient and family, and death as a vehicle for learning in their personal and professional lives. The third nucleus delineates the work process of the oncological palliative home care team; its interpersonal relations with the patient and family, and the internal effects on the team of continuously confronting the suffering and death of others. In conclusion, this study allowed insight into how the oncological palliative home care team characterizes home care in the public health system, revealing a new modality of care that includes the multidimensionality of the sick being and its family, attended by professionals of different categories who, in an interdisciplinary team, incorporate an identity, that of palliative caregivers.

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No. of bitstreams: 1 Karina Machado Siqueira.pdf: 582051 bytes, checksum: 680272463c8805e68f5610352a820038 (MD5) Previous issue date: 2006-02-16 / In despite of important advances that occurred in the last years referring to diagnosis and treatment of cancer this disease has proved to be one of the main causes of death in the world affecting a significant part of the population The expressive number of people in health care institutions for cancer treatment leads us to assume a reflective attitude in relation to the way it is being treated by health care professionals The purpose of the development of this research was to unveil the meaning of being-with-cancer for oncologic patients trying to understand them in this experience and trying to find new ways to take care of these people Based on the insight that only people who have actually gone through the experience of suffering from cancer are able to transmit the meaning and the importance of what they have been experiencing I opted for the methodology of qualitative research phenomenological modality based on the philosophical reference of Edmund Husserl Phenomenology according to Husserl is a tour through the world of experiences having as its objective to unveil the essences inherent to the phenomenon Interviews were conducted with eleven patients interned in a health care institution specialized in cancer treatment located in Goiânia GO All the patients were adults and aware of the diagnosis I adopted some ideas of Martin Heidegger s existencial ontology to better develop data analysis I could learn that cancer shows itself to the Being who lives this situation as a difficult experience saturated with suffering and pain Receiving the diagnosis revealed itself as one of the worst moments for the patient as an experience among other feelings the anguish of the unknown and fear of death Approaching the world of these people s lives I noticed how much cancer as a reality in the being s life can affect both their self-perception and behaviour as well as their social relations From the moment on in which the Being is confronted with the reality of living with a severe disease several existencial projects tend to be cancelled or modified Besides the countless sufferings provoked by the disease the stigma that envolves cancer is responsable for the maintenance of prejudice which increase the suffering and wear out the sick person Being confronted with the necessity of living with a severe health problem people in many cases search ways of facing this which differ from the ways offered by conventional medicine; among these stand out the practices based on popular knowledge and religiosity The trust in divine power emerged in a significant way in the patients discourse as a way of strengthening and overcoming The presence of significant people such as relatives and friends were considered important by those who experienced being sick To unveil the meaning of living with cancer allowed me a comprehension of what the person was experiencing signalling the need for discussing feelings and sharing his/her pains sadness and worries Taking care of these people implies developing the sensibility of seeing the Being as someone given the gift of awareness of the situation he finds himself in and as someone who needs care directed to his singularity / Apesar dos importantes avanços ocorridos nos últimos anos quanto ao diagnóstico e tratamento do câncer essa doença vem se configurando como uma das principais causas de morte no mundo afetando parcela significativa da população O número expressivo de pessoas que buscam as instituições de saúde para o tratamento do câncer nos leva a assumir uma postura reflexiva em relação à forma com que vêm sendo cuidadas pelos profissionais de saúde O desenvolvimento deste estudo teve como propósito desvelar o significado de ser-com-câncer para pacientes oncológicos buscando compreendê-los nesse vivenciar e vislumbrando a descoberta de novos caminhos para o cuidado a essas pessoas Sustentando-me no entendimento de que somente as pessoas que experimentam a situação de adoecer com câncer são capazes de transmitir o sentido e o significado do que estão vivendo optei pela metodologia da pesquisa qualitativa modalidade fenomenológica baseada no referencial filosófico de Edmund Husserl A fenomenologia segundo Husserl é a volta ao mundo das experiências vividas pelo sujeito tendo como objetivo o desvelar das essências inerentes ao fenômeno Foram realizadas entrevistas junto a onze pacientes internados em uma instituição de saúde especializada no tratamento do câncer localizada em Goiânia GO Todos os pacientes eram adultos e estavam conscientes do diagnóstico Apropriei-me de algumas idéias da ontologia existencial de Martin Heidegger para melhor desenvolver a análise dos dados Pude apreender que o câncer mostra-se ao Ser que vive essa situação de doença como uma experiência difícil saturada de sofrimento e dor O recebimento do diagnóstico revelou-se como um dos piores momentos para o paciente quando vivencia dentre outros sentimentos a angústia diante do desconhecido e o medo da morte Ao aproximar-me do mundo-vida dessas pessoas percebi o quanto o câncer enquanto realidade na vida do Ser pode afetar tanto sua autopercepção e seu comportamento quanto suas relações sociais A partir do momento em que o Ser se depara com a realidade de existir com uma doença grave diversos projetos existenciais tendem a ser anulados ou modificados pela situação vivida Além dos inúmeros sofrimentos provocados pela doença o estigma que envolve o câncer é responsável pela manutenção de preconceitos que aumentam o sofrimento e desgastam a pessoa doente Ao se depararem com a necessidade de conviver com um problema de saúde grave as pessoas buscam em muitos casos formas de enfrentamento que diferem daquelas oferecidas pela medicina convencional dentre estas se destacam as práticas baseadas no saber popular e a religiosidade A confiança no poder divino emergiu de maneira significativa no discurso dos pacientes como possibilidade de fortalecimento e superação A presença de pessoas significativas como familiares e amigos foi considerada importante pelos que vivenciam o estar doente Desvelar o significado de existir com câncer possibilitou-me a compreensão do vivido pela pessoa sinalizando para a necessidade de discutir sentimentos compartilhar suas dores tristezas e preocupações O cuidado a essas pessoas implica em desenvolver a sensibilidade de olhar o Ser como alguém dotado de consciência da situação em que se encontra e que necessita de cuidados direcionados para sua singularidade

Introdução: Prejuízos na atenção, concentração e execução de tarefas, entre outras funções cognitivas, parecem ser frequentes em doentes com câncer e em cuidados paliativos e podem comprometer o cotidiano desses pacientes. No entanto, há poucos estudos sobre o tema e desconhecem-se testes validados para essa população no Brasil. Objetivo: Validar o Teste de Trilhas B (TT-B) para uso em pacientes com câncer em cuidados paliativos. Método: Trata-se de estudo metodológico, de validação de instrumento, que envolveu pacientes (n=94) em tratamento paliativo no Ambulatório de Quimioterapia do Instituto do Câncer do Estado de São Paulo e seus acompanhantes (n=39). Os avaliados realizaram o TT-B e responderam dados sócio-demográficos, sobre a presença e intensidade de dor, de fadiga, sobre a qualidade do sono, ansiedade e depressão, em dois momentos, com intervalo máximo de sete dias. Os doentes também foram caracterizados quanto à doença e tratamento. As validades convergente e divergente foram testadas pela correlação entre o desempenho no TT-B, mensurado pelo tempo para a realização do teste e o número de erros cometidos, com a intensidade da dor, da fadiga, da ansiedade, da depressão e do repouso atribuído ao sono da noite anterior às avaliações. A validade discriminante foi testada pela comparação do TT-B entre doentes e sadios. A estabilidade do TT-B, em doentes e sadios, foi avaliada por meio de teste e reteste. Resultados: Os doentes tinham câncer colo-retal (47,8%), câncer de mama (15,9%), a totalidade apresentava metástase, foram homens (52,1%), com idade média de 53 anos. Para os doentes, o tempo médio de realização do TT-B foi de 147,5 segundos na primeira e 132 segundos na segunda avaliação e o número de erros médio foi de 1 na primeira e 0,8 na segunda avaliação. Para os acompanhantes o tempo de realização do TT-B foi de 127,3 e 110,7 segundos na primeira e segunda avaliação respectivamente e o número de erros foi 0,9 na primeira e 0,6 na segunda avaliação. O instrumento discriminou doentes de sadios em relação ao tempo utilizado para a realização do teste na primeira (p=0,014) e na segunda (p=0,035) avaliação, indicando melhor desempenho para os sadios, mas não em relação ao número de erros. O teste foi estável entre os sadios nas duas avaliações, tanto em relação ao tempo (p=0,071) quanto em relação ao número de erros (p=0,352) e entre os doentes o instrumento foi estável apenas em relação ao número de erros (p=0,913). O TT-B não demonstrou correlações significativas com dor, fadiga, depressão, ansiedade e descanso, o que causou estranheza. Conclusão: O TT-B está em processo de validação. Mostrou-se capaz de discriminar doentes de sadios e foi estável entre os saudáveis. Recomenda-se a continuidade de estudos com amostras maiores e a utilização do TT-B em paralelo a outro instrumento que avalie a função executiva. / Introduction: Impairments in attention, concentration and execution of tasks, among other cognitive functions, seem to be frequent in patients with cancer in palliative care and they can affect patients daily life. However, there are few studies about the theme and to our knowledge there are no validated tests for this population in Brazil. Objective: To validate Trial Making TestB (TMT-B) for assessment of patients with cancer in palliative care. Methods: Methodological study to validate an instrument that involved patients (n=94) in palliative treatment at the Clinic of Chemotherapy of the Instituto do Câncer do Estado de São Paulo and their healthy accompanying person (n=39). Patients were tested on TMT-B and answered demographic data, questions about the presence of pain and intensity, fatigue, quality of sleep, anxiety and depression, in two moments, with maximum interval of seven days. The patients were also characterized according to disease and treatment. The convergent and divergent validities were tested by the correlation between the performance on TMT-B, measured by the amount of time required to complete the task and the number of mistakes, and pain intensity, fatigue, anxiety, depression and the rest attributed to sleep in the previous night before assessments. The discriminate validity was tested by the comparison of TMT-B between patients and healthy accompany persons. The stability of TMT-B, in patients and healthy companions was evaluated through test and re-test. Results: The patients had colorectal cancer (47.8%), followed by breast cancer (15.9%), the totality presented metastasis, most patients were men (52.1%), mean age was 53 years. For patients, mean time required to complete TMT-B was 147.5 seconds in the first and 132 seconds in the second assessments and the mean number of mistakes was 1 in the first and 0.8 in the second assessments. For the healthy accompany person, the time required to complete TMT-B was respectively 127.3 and 110.7 seconds in the first and second assessments and the number of mistakes was 0.9 in the first and 0.6 in the second assessments. The instrument discriminated patients from healthy accompany persons regarding time required to complete the test in the first (p=0.014) and second (p=0.035) assessments, indicating better performance for the healthy ones, but not in relation to the number of mistakes. The test was stable among healthy people in the two assessments regarding time (p=0.071) and number of mistakes (p=0.352); for patients, the instrument was stable only in relation to the number of mistakes (p=0.913). TMT-B did not demonstrate significant correlations with pain, fatigue, depression, anxiety and rest. Conclusion: TMT-B is in validation process. It was able to discriminate between patients and healthy accompany persons and was stable for the healthy ones. Further studies are recommended with larger samples as well as the use of TMT-B in parallel to other instrument that evaluates the executive function.

Title of the diploma thesis: Use of promotive therapy and stimulation in hospice care Aim of the thesis: Possible use of promotive therapy and stimulation in therapy of patients in hospice care is discussed in this diploma thesis. The aim of thesis is to compare use these therapies in hospice facilities that provide accommodation for clients or in home hospice care in the Czech Republic and the Slovak Republic and to analyze way of its use in praxis. For purpose of this thesis following promotive therapies and stimulation were selected: music therapy, art therapy, bibliotherapy, basal stimulation and concept Snoezelen. Methods of work: Quantitative and qualitative investigation was used for research. Quantitative investigation in form of questionnaires provided to hospice facilities with accommodation for clients was utilized as a method for data acquisition. Observation of practical promotive therapies processes in hospice facilities with accommodation for clients was included in methodology of qualitative investigation. Results: Research deals with death and dying which is still quite often taboo theme in our conditions. This fact is perceptible in results of research investigation. It was revealed that offer of promotive therapies, which are provided professionally and defined in advance, is not...

The main topic of this diploma thesis is support of informal caregivers taking care for dying loved ones or loved ones with life-threatening illness in the home environment. The theoretical partis focused on informal carers, the quality of life of informal carers, the quality of life of dying people and quality of life of people with life-threatening diseases, death and the stages of coping with death. It also deals with hospice and palliative care, their forms, methods and uses. The practical part is focused on the analysis and evaluation of questionnaires filled out by informal carers. The aim of my diploma thesis is to point out the need to help informally caring for dying loved ones or loved ones with life-threatening illnesses. Within the practical part of this thesis, it was intended to map helpful and, conversely, deficit types and ways of support. These outputs can then be the basis for improving the quality of support and services for informal carers caring for a loved one in the home environment. Keywords Informal care, formal care, hospice care, palliative care, quality of life, death.