End-of-life (EOL) care decisions present a challenge for family caregivers. Despite the increasing number of terminally ill patients in need of pain management and comfort care, there is limited qualitative data about how populations in the developing world can access culturally appropriate resources and EOL support. In this phenomenological study, 17 Garifuna family caregivers in southern Belize were interviewed about their experience caring for terminally family members. The conceptual frameworks were Kübler-Ross’s hospice approach and Watson’s theory of human caring. The two theories were selected based on their significance to this process: Kübler Ross’s hospice approach and its impact on the family system during the end stage of life and Watson’s theory of human caring for its emphasis on the impact of the importance of meeting the basic needs of individuals. NVivo 12 was used to code and generate themes for further analysis. Caregivers who said they would not utilize support outside of the home were those who were committed not do so at the request of the patient. Caregivers who cared for their family member and those who could financially afford to hire caregivers in their home to assist with their relative said they would not utilize nonfamily support. All others, regardless of relationship to the patient, indicated they would have accepted care if the environment were safe, caring, and culturally sensitive. Additionally, the caregivers saw their needs as secondary and insignificant compared to the comfort and care of the patient. This study may contribute to positive social change by revealing strategies and services that could be included in the design of a health services delivery system to meet the needs of individuals facing EOL decisions.

An essential part of high-level medicine of every state is hospice-based and palliative care. Throughout the world and throughout western Europe there is a fully established network of mobile and residential hospices. Meanwhile, the Czech Republic is in the early stages, making efforts to improve the situation and to firmly embed hospice care into its social and health service provision. The year 2016 is one of great expectations. Firstly there is an ongoing pilot programme of grants supporting mobile palliative care, which will compare the "cost of dying" at home with the cost spent by institutions. Secondly, a decision by the Ministry of Work and Social Services is expected with respect to proposed changed in law no. 108/2006 of the Collection of Laws on social services. If passed, this would mean a hospice would turn into an official social and health institution, thereby markedly improving the problem of financing the care provided within one, as it is a combination of social and health services. The aim of this thesis is to provide a more integrated briefing of current information related to the given issues. Therefore the theoretical part covers not only hospice and palliative care itself, but space is given to other issues such as cancer, population ageing with its impal on the economy and to new forms of care for senior citizens, dying and death. Furthermore the thesis deals with the question of financing hospice care, with particular emphasis on community planning. Lastly the theoretical part of the thesis covers the characteristics of Jindřichův Hradec, the municipality with extended competence and a description of the need for hospice care from the perspectives of both the Town Jindřichův Hradec and the Southern Bohemian region. The Hospital Jindřichův Hradec, plc and the Town itself are aware of the need for palliative care in the given region. Both organizations have therefore already undertaken important steps, based on which the Southern Bohemian region has included support for hospice and palliative care into planning and health development for the coming years. The aim of the thesis is to map out the situation concerning the provision of hospice care in the area of Jindřichův Hradec, the municipality with extended competence and to establish the requirements for this care by considering the interest of the citizens from the given area. The experimental part of the thesis uses two approaches to establish the need for hospice care. Firstly, this was content analysis of data materials provided by social and health service providers, and secondlya qualitative investigation using interviews with eight respondents of a panel on community planning of social services in the area of Jindřichův Hradec, the municipality with extended competence. Included are also statistical data from the Hospital Jindřichův Hradec plc, with emphasis on oncology patients, because these form the major group receiving palliative care. The result of the research is not surprising. The population is ageing demographically, cancer-related illnesses are the nightmare of our time and the social and health care in Czech Republic must adapt to this fact. The research confirmed that hospice care in Jindřichův Hradec, the municipality with extended competence is needed, that the families of patients are requesting it and that services currently offered are deficient. It became evident that the overwhelming support is for the development of a residential hospice or for establishment of palliative beds in the hospital. In Southern Bohemia there is only one residential hospice in Prachatice, which is little used due to the long distance and thus the families have no opportunity for respite care, which the carers are also interested in. The research confirmed, that the creation of a residential form of hospice type in the area of Jindřichův Hradec, the municipality with extended competence is supported by general practitioners, specialist doctors

The thesis "Awareness of special education students about hospice care in the Czech Republic" introduces hospices and hospice care to its reader. The aim of its theoretical part is to define basic terms such as a hospice, hospice care, palliative care and forms of hospice care. Needs of a client and a client's family are analysed within the scope of hospice care. Subchapters also deal with hospice care providers' association, current legislation and financing in the field of hospice care. The thesis' theoretical part concludes with a remark on the Programme "Support of hospice palliative care in the Czech Republic". The research part is based on the quantitative survey and its aim is the analyzation of special education students' knowledge of hospice care in the Czech Republic. Results shows that students have basic knowledge thereof.

The aim of thesis is to create an overview of the holistic concept of domestic palliative care in the context of social work. This overview includes identification of the needs of people in the terminal stage of life and the dilemmas that families face in the final stage of the lives of their loved ones. The individual chapters of this thesis describe the needs of the dying and informal caregivers, and they point out the importance of the family environment for coping with death-related concerns. The qualitative survey carried out via semi-structured interviews includes identification of the needs of the dying and caregivers, the dilemmas of caregivers in making decisions about choosing the form of care for their loved ones, and mapping the awareness of caregivers about the possibilities of social work support.

ABSTRACT Background: For patients with life-limiting illnesses, having adequate knowledge of prognosis can strongly impact the choice between curative and supportive treatment. Objectives: The purpose of this research study is to explore patient understanding of prognosis and to illuminate the experience of having or not having prognostic information in people diagnosed with life-limiting illnesses. This study aims to investigate the patient's understanding of the term "prognosis", the significance of the term "prognosis" to the patient, and how prognosis may or may not affect future treatment choices. In addition, this study aims to further understand the experience of prognostic communication between provider and patient. The over-arching goal is to capture the personal perspectives of participants with a view to exploring their experiences around knowledge of their prognosis. Methods: A qualitative research design using a phenomenological approach was employed to examine how people experience prognosis. An invitation to participate in the study was publically announced via local newspapers, social media venues, and word of mouth. Participants who responded to study advertisements and who met inclusion criteria were asked to participate in one interview answering open-ended questions aimed at examining their experience with and knowledge of their prognosis. In addition, questions about prognostic communication between patient and health care provider were explored. All interviews were recorded, transcribed verbatim and analyzed using phenomenological methods. Results: Three study participants met the study criteria and were interviewed. Several themes emerged from the data including 1) patients have need for information about their illness, 2) prognostic data inform treatment choices, 3) patient experiences are unique and 4) patients feel a connection to nurses involved in their care. Conclusions: This study illuminated the patients' desire and need for information during their illness, the desire for patient autonomy, the difficulty of starting and having prognostic conversations, the downstream impact of having prognostic information, and the important role that nurses play for patients facing serious health issues. It is hopeful that the themes identified during the course of this research ultimately contribute to the knowledge base by informing healthcare providers on the importance of conveying prognostic information in a timely, direct, and sensitive manner.

Submitted by Luciana Ferreira (lucgeral@gmail.com) on 2016-03-03T15:11:00Z No. of bitstreams: 2 Dissertação - Antônio Gomes Teles - 2014.pdf: 1054844 bytes, checksum: 7e9b9d8d1f4b5b577f45cb27f110e4b5 (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Approved for entry into archive by Luciana Ferreira (lucgeral@gmail.com) on 2016-03-03T15:27:09Z (GMT) No. of bitstreams: 2 Dissertação - Antônio Gomes Teles - 2014.pdf: 1054844 bytes, checksum: 7e9b9d8d1f4b5b577f45cb27f110e4b5 (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) / Made available in DSpace on 2016-03-03T15:27:10Z (GMT). No. of bitstreams: 2 Dissertação - Antônio Gomes Teles - 2014.pdf: 1054844 bytes, checksum: 7e9b9d8d1f4b5b577f45cb27f110e4b5 (MD5) license_rdf: 23148 bytes, checksum: 9da0b6dfac957114c6a7714714b86306 (MD5) Previous issue date: 2014-05-30 / When concerning quality of life (QOL), several issues must be considered, due to the complexity of the way people face life, their behave and feelings, including health status.In this scenery the QOL of caregivers should be aimed, specialy of those who give domiciliary assistance to terminal cancer patients. The objective of the presente study was to evaluate the QOL of terminal cancer domiciliary caregivers entitled GAPPO (Support Paliative Oncological Group), in the metropolitan área of Goiania/Goias/Brazil.This was a correlational, descriptive, transversal stydy, developed with patients of the Hospital Araujo Jorge of the Association Agaisnt Cancer of Goias (ACCG). The WHOQOL– BREF (portuguese version) query was applied, individually, during patients domiciliar visits to access each caregiver.Microsoft ® Excel 2007 was used for data tabulation and statistical analysis was developed in SPSS® for Windows®, version 16.0. The social-demographics profile was considered in WHOQOL – BREF query and analised with t-Studenttest, using ANOVA (Tukey test) for normal distribution.Chi-square test was also used for univariate social-demographic analysis. Correlation analysis was performed with Pearson test, considering significance with a p value < 0.05 for all tests. Fourty three domiciliary caregivers were included, all indicated by the patients seen. 79.1 % ofthecaregiverswerewomen, 65.1% married. Around 51% of the sample were over 50’s, 39.5% caucasians, 55.8% completed college and 67.4% were catholics. The time of professional activity may increase psych emotional distress. Around 60% of the caregivers had less than one year of experience, 41.8% with 24h daily duty and almost 98% of all with non-profit activity. The amount of daily working hours has impacted fisical and psychologically the caregivers. The highest negative QOL impact was seen in the psych field, witha mean of 52.8 for those working up to 5 hours a day, although reaching 68.5 for caregivers working 6 to 11 hours a day. The results showed that the patient´s income variable results in worse QOL of the caregivers, once it is associated to a higher risk of severe pain, need of medical assistance, mobility problems, costs with energy and even ability to develop daily activities. The results of correlation of WHOQOL-BREF query variables showed mild to high significance. The work developed by the caregivers with this kind of patients lead to a poor QOL. The conclusions of the present work suggest that caregivers themselves need care in order to preserve their QOL. / Quando pensamos em qualidade de vida, emergem inúmeras concepções, pautadas na multidimensionalidade do constructo, que englobam uma série de acontecimentos que podem afetar o modo com que o indivíduo percebe o mundo, seus sentimentos e comportamentos, incluindo a sua situação de saúde. Nesse contexto, destaca-se a QV dos cuidadores, especialmente daqueles que prestam assistência a pacientes em fase terminal de câncer no domicílio. O objetivo do estudo foi avaliar a qualidade de vida de cuidadores de pacientes em fase terminal de câncer, no domicílio, atendidos pelo Grupo de Apoio Paliativo ao Paciente Oncológico na região metropolitana de Goiânia. Trata-se de uma pesquisa descritiva correlacional, transversal, realizada no domicílio de portadores de câncer em fase terminal, procedentes do Hospital Araújo Jorge da Associação de Combate ao Câncer em Goiás. Aplicou-se o instrumento WHOQOL – BREF, versão em português, aos participantes, de forma individual, no próprio domicílio. O programa Microsoft ® Excel 2007 foi usado para tabulação dos dados e a análise estatística pelo programa SPSS® for Windows®, versão 16.0. Para avaliar o perfil sócio-demográfico, em relação aos domínios do questionário WHOQOL – BREF utilizou-se o teste t-Student, teste Anova e teste Tukey para dados normais. Para a comparação das facetas do WHOQOL – BREF em relação ao perfil sócio-demográfico (somente para a variável significativa perfil vezes domínio) foi utilizado teste X2. Para correlação entre os domínios do WHOQOL – BREF foi utilizado o teste de Pearson. Considerou-se como nível de significância o valor 5% (p<0,05). Participaram 43 cuidadores de pacientes em fase terminal de câncer, com seguimento no domicílio, indicados pelos pacientes. Identificou-se que a maioria eram mulheres 79,1%, casadas 65,1%. Aproximadamente 51% dos cuidadores encontram-se acima de 50 anos, 39,5% referiram ser da raça branca, 55,8% com ensino fundamental e 67,4% eram católicos. O tempo de atuação como cuidador pode interferir no seu desgaste psicoemocional; identificou-se que 60,4% referiram ter tempo como cuidador de < 1 ano, 41,8% com carga horária diária de 24 horas e 97,7% não eram remunerados. A partir desses dados, comparou-se a variável carga horária diária com os domínios do WHOQOL - BREF. A carga horária foi significativa nos domínios físico e psicológico desses cuidadores. Com relação à QV, percebeu-se que a pontuação máxima foi no domínio psicológico com média de 52,8 até 5 horas, 68,59 de 6 - 11 horas, 61,25 de 12 a 17 horas e 52,8 de 18 - 24 horas. Após a análise das facetas, concluiu-se que o indicador renda comprometeu a QV dos cuidadores, evidenciada por tendência ao surgimento de dor intensa, necessidade de tratamento médico, capacidade de locomover-se, gasto de energia e na capacidade de desempenhar as atividades diárias, além de comprometer o nível de produção para o trabalho, dentre outras. A correlação das variáveis entre domínios do WHOQOL-BREF apresentou-se de forma moderada e altamente significativa. Evidenciou-se que as atividades desempenhadas pelos cuidadores informais dessa população comprometem a sua QV. Dessa forma, a equipe multiprofissional de CP do HAJ/ACCG precisa incluir o cuidador no plano de cuidados, buscando promover melhor QV desses cuidadores.

While there is considerable international interest in the development of hospice and palliative care programs, as an alternative form of care for the terminally ill, there is minimal empirical research undertaken on the needs of recipients of these programs. Using a Q-sort, developed by the author, this research examined the relationship between individual patient's ranking of their needs, and the nurse's perception of the needs identified by individual patients in their care. A basic assumption of the study was that patients' needs could be categorised in four groups, namely spiritual, physical, emotional, and social. Consequently, the study also examined whether patients and nurses identified, as most important, needs from one group, more frequently than the other groups. The limited size of the sample placed severe restrictions on the analysis of results derived from this research. However, while no definite conclusions could be drawn from data obtained from the small sample, tentative analysis identified trends that may have proved significant had they continued in a larger sample.

<p>Syftet med denna studie var att beskriva vad patienter med cancer i den palliativa fasen upplever att livskvalitet är utifrån fysiskt, psykiskt och socialt perspektiv. Sökning av de underlag som användes i studien gjordes i olika databaser som Medline (via pubmed), Science Direct och Academic Search Elite. Sökningarna gjordes med enkla sökord eller i kombination med varandra. De underlag som söktes begränsades med att vara skrivna på svenska eller engelska, vara publicerade mellan år 2000-2008, handla om vuxna patienter samt fri åtkomst via databasen i fulltext. Totalt 17 artiklar granskades, analyserades och sammanställdes sedan under de olika perspektiven: fysiskt, psykiskt och socialt. Resultatet visar att upplevelse av livskvalitet sker genom avsaknad av smärta. Smärta är det vanligaste upplevda fysiska symtomet hos patienter med cancer i den palliativa fasen. Ångest och depression är de psykiska symtomen som är starkt relaterad till försämrad upplevd livskvalitet hos patienter genom den hela palliativa fasen. Man kunde även se att en bra kommunikation och dialog mellan sjuksköterskor och behandlande läkare värderades högt av patienterna. Den palliativa fasen hos cancersjuka patienter präglades av att det sociala nätverket med familj och närstående fördjupades, vilket var en viktig del för att kunna göra ett avslut.</p><p> </p><p>Nyckelord:  Palliative Care, Patient Satisfaction, Quality of life, Terminally Ill, Terminal Care.</p> / <p>The purpose of this study was to describe the quality of life from a physical, mental and social perspective that cancer patients in the palliative phase experience. The search of the articles which were utilized in the study was made in different databases such as Medline (via pubmed), Science Direct and Academic Search Elite. The searches were made with simple key words or in combination with each other. Limits for the searches were put to the Swedish or English language, articles published between 2000 -2008, adult patients as well as a free acquisition through the database in full-text. In total, 17 articles were scrutinized, analyzed and then compiled under different perspectives: Physical, mental, and social. The result showed that the experience of the quality of life occurs through lack of pain. Pain is the most common physical symptom experienced by cancer patients at the palliative phase. Anguish and depression are the physical symptoms that are strongly related to deterioration in the quality of life that the patients experience through the whole palliative phase. One could even notice that good communication and dialogue between nurses and doctors in charge were highly appreciated by the patients. The palliative phase with regard to cancer patients was characterized by the fact that the social network with their families and relatives was profoundly intensified, which was an important part in order to be able to bid them farewell.</p><p><strong> </strong></p><p> </p><p>Keywords:  Palliative Care, Patient Satisfaction, Quality of life, Terminally Ill, Terminal Care.</p>

Syftet med denna studie var att beskriva vad patienter med cancer i den palliativa fasen upplever att livskvalitet är utifrån fysiskt, psykiskt och socialt perspektiv. Sökning av de underlag som användes i studien gjordes i olika databaser som Medline (via pubmed), Science Direct och Academic Search Elite. Sökningarna gjordes med enkla sökord eller i kombination med varandra. De underlag som söktes begränsades med att vara skrivna på svenska eller engelska, vara publicerade mellan år 2000-2008, handla om vuxna patienter samt fri åtkomst via databasen i fulltext. Totalt 17 artiklar granskades, analyserades och sammanställdes sedan under de olika perspektiven: fysiskt, psykiskt och socialt. Resultatet visar att upplevelse av livskvalitet sker genom avsaknad av smärta. Smärta är det vanligaste upplevda fysiska symtomet hos patienter med cancer i den palliativa fasen. Ångest och depression är de psykiska symtomen som är starkt relaterad till försämrad upplevd livskvalitet hos patienter genom den hela palliativa fasen. Man kunde även se att en bra kommunikation och dialog mellan sjuksköterskor och behandlande läkare värderades högt av patienterna. Den palliativa fasen hos cancersjuka patienter präglades av att det sociala nätverket med familj och närstående fördjupades, vilket var en viktig del för att kunna göra ett avslut.   Nyckelord:  Palliative Care, Patient Satisfaction, Quality of life, Terminally Ill, Terminal Care. / The purpose of this study was to describe the quality of life from a physical, mental and social perspective that cancer patients in the palliative phase experience. The search of the articles which were utilized in the study was made in different databases such as Medline (via pubmed), Science Direct and Academic Search Elite. The searches were made with simple key words or in combination with each other. Limits for the searches were put to the Swedish or English language, articles published between 2000 -2008, adult patients as well as a free acquisition through the database in full-text. In total, 17 articles were scrutinized, analyzed and then compiled under different perspectives: Physical, mental, and social. The result showed that the experience of the quality of life occurs through lack of pain. Pain is the most common physical symptom experienced by cancer patients at the palliative phase. Anguish and depression are the physical symptoms that are strongly related to deterioration in the quality of life that the patients experience through the whole palliative phase. One could even notice that good communication and dialogue between nurses and doctors in charge were highly appreciated by the patients. The palliative phase with regard to cancer patients was characterized by the fact that the social network with their families and relatives was profoundly intensified, which was an important part in order to be able to bid them farewell.     Keywords:  Palliative Care, Patient Satisfaction, Quality of life, Terminally Ill, Terminal Care.

Thesis (M.S.W.)--University of Hong Kong, 1987.