The study sought to research and develops a universal palliative care measurement tool that will track the performance of informal caregivers to dying persons across the diversity of the South African cultural and religious groupings. The major inferences drawn from this study was that a generic domain, sub-items and intervals could be identified for palliative care; that a reliable measurement tool could be developed and that outcomes of care programs for dying persons in terms of effectiveness and efficiency could be numerically quantified. With the ability to measure now been realised, the ability to manage the outcomes became the new challenge. / Nursing Sciences / M.A. (Health Studies)

Actuellement, plus de soixante-dix dystrophies musculaires différentes ont été caractérisées cliniquement. La pathogenèse des différents types de dystrophies musculaire implique de nombreuses voies biologiques et s'accompagne d'une grande variabilité de signes cliniques, mais toutes ces dystrophies ont une caractéristique commune : la perte progressive des fibres musculaires. Pour les formes plus communes de ces dystrophies musculaires, les stratégies thérapeutiques visent principalement à restaurer la fonction du gène altéré. Bien que ces stratégies soient encourageantes pour un grand nombre de patients, elles ne peuvent être retenues comme traitement universel pour l'ensemble des dystrophies musculaires. L'identification de voies biologiques et de défauts secondaires communs à des dystrophies musculaires représente un intérêt majeur pour le développement de traitements palliatifs généralistes applicables à un large éventail de dystrophies musculaires. Pendant mes travaux de doctorat, j'ai initié une étude comparative approfondie sur dix-sept mutants différents chez le nématode Caenorhabditis elegans présentant une dégénérescence musculaire progressive, dont sept sont des modèles de dystrophies musculaires chez le nématode. La recherche de voies biologiques et de défauts secondaires communs, nous a permis d'établir différentes classes de dégénérescence musculaire chez le nématode et de révéler l'existence d'au moins deux mécanismes subcellulaires différents. De plus, nos résultats démontrent que des perturbations de la voie autophagique semblent systématiquement associées à la dégénérescence musculaire. Enfin, ce travail aboutit sur l'établissement d'un modèle proposant une chronologie des évènements sub-cellulaires menant à la dégénérescence progressive dystrophine-dépendante / Currently, more than sevently different muscular dystrophies have been clinically characterized. The pathogenesis of these different types of muscular dystrophies involves numerous cellular pathways and leads to a large variability of the clinical features. However, all the muscular dystrophies share a common feature: the progressive muscle cell loss. For the most common forms of muscular dystrophies, therapeutic strategies consist in restoring the function of the affected gene. Even if these strategies are encouraging for a lot of patients, they cannot be used as a universal treatment for all the muscular dystrophies. The identification if common pathways or common secondary defects to different muscular dystrophies is of great interest for the discovery of new palliative treatment, able to decrease the pathology of a large panel of muscular dystrophies. I have initiated a comparative analysis of seventeen C. elegans mutants presenting with muscle degeneration. Seven these mutants are considered as models for muscular dystrophies. Thanks to these comparative analysis, we were able to define different classes of muscle degeneration in C. elegans and to reveal the existence of at leats two different pathways. Moreover, our results show that perturbations in the autophagic pathway are systematically associated with muscle degeneration. This study leads to the establishment of a putative chronology of events occurring before the muscle cell loss, during the dystrophin-dependent degeneration process

The topic of this study, euthanasia, has become a modern-day issue that challenges some of societies traditionally held beliefs towards death and dying. This study drew upon the theoretical insights of Michel Foucault to provide a discursive analysis of the term euthanasia, and the issues surrounding the "right-to-die". It involved an analysis of primary texts from; nursing, general, and legal literature as well as the media between the years 2002-2004. Drawing upon data researched, the study analyses the main discourses regarding the practice of euthanasia for terminally ill individuals. The two competing discourses that emerged were what I have termed the sanctity-of life-discourse and the right-to-die discourse. The aim of the study was to uncover the discourses understanding of "truth" regarding the right-to-die. The analysis revealed that a small percentage of cancer sufferers (5%) die with their pain insufficiently treated and the right-to-die discourse claims that no individual should have to suffer needlessly, asserting the individuals right to autonomy. Directly opposing this is the sanctity-of life-discourse which states all life is sacred and nothing can justify euthanasia as an acceptable practice in society. My findings indicate the need for effective palliative care and pain management when caring for the terminally ill individual. The legal, ethical and moral implications of euthanasia are many and this study discusses the effects these may have on health professionals involved with the care of terminally ill patients. The study revealed an increasing deployment of the right-to-die discourse in the media and revealed concerns regarding the nursing professions lack of preparation to deal with euthanasia if it becomes a legal option in end of life care.

The topic of this study, euthanasia, has become a modern-day issue that challenges some of societies traditionally held beliefs towards death and dying. This study drew upon the theoretical insights of Michel Foucault to provide a discursive analysis of the term euthanasia, and the issues surrounding the "right-to-die". It involved an analysis of primary texts from; nursing, general, and legal literature as well as the media between the years 2002-2004. Drawing upon data researched, the study analyses the main discourses regarding the practice of euthanasia for terminally ill individuals. The two competing discourses that emerged were what I have termed the sanctity-of life-discourse and the right-to-die discourse. The aim of the study was to uncover the discourses understanding of "truth" regarding the right-to-die. The analysis revealed that a small percentage of cancer sufferers (5%) die with their pain insufficiently treated and the right-to-die discourse claims that no individual should have to suffer needlessly, asserting the individuals right to autonomy. Directly opposing this is the sanctity-of life-discourse which states all life is sacred and nothing can justify euthanasia as an acceptable practice in society. My findings indicate the need for effective palliative care and pain management when caring for the terminally ill individual. The legal, ethical and moral implications of euthanasia are many and this study discusses the effects these may have on health professionals involved with the care of terminally ill patients. The study revealed an increasing deployment of the right-to-die discourse in the media and revealed concerns regarding the nursing professions lack of preparation to deal with euthanasia if it becomes a legal option in end of life care.

Thesis (M.Info.Tech.)--University of Wollongong, 2005. / Includes appendices. Typescript. Includes bibliographical references: leaf 100-105.

The impression existed that nurses were not always compassionate and caring when they had to nurse terminally ill patients and the question arose whether they were adequately trained for this task. This study focused on the most frequent diseases that cause the death of patients in a province of Angola, and set out to determine what preparation nurses in a specific hospital received to equip them to care for terminally ill patients. A quantitative approach was adopted, using an exploratory and descriptive design, and a self-developed questionnaire was applied as data-collection instrument for a sample of 100 medium- and basic level nurses in a specific hospital in a province of Angola. From the results of the study it was evident that the nurse respondents were well informed as to what it entailed to be terminally ill, which factors affected the patient's comfort, safety and self image needs but only half of the respondents indicated that they received training pertaining to palliative care. Recommendations were made in view of better preparing nurses to care for the terminally ill patient. / Health Studies / M.A. (Health Studies)

Orientador: Liciana Vaz de Arruda Silveira / Banca: Silvana Andrea Molina Lima / Banca: Alaor Aparecido Almeida / Resumo: A administração de fluidos pela via subcutânea é cada vez mais uma alternativa reconhecida para pacientes que possuem condições que impossibilitem a administração de medicamentos por via oral e endovenosa. Além de ser uma técnica simples e de fácil manuseio, possui inúmeras vantagens; entre elas podemos citar a diminuição do ônus institucional, aumento do conforto, diminuição de traumas e infecções. O enfermeiro possui papel importante em todas as vertentes do cuidar, portanto, devem adquirir conhecimento técnico-científico e prático, utilizando como ferramenta a hipodermóclise, com a finalidade de minimizar o sofrimento e aumentar a qualidade de vida dos pacientes em cuidados paliativos. Objetivo:Verificar o conhecimento dos enfermeiros de unidades de internação e ambulatório de terapia antálgica sobre a hipodermóclise, e elaborar um Procedimento Operacional padrão(POP) e um e-book contendo a técnica correta de punção e as medicações administráveis pela via subcutânea. Material e métodos: Após a assinatura do Termo de Consentimento Livre e Esclarecido, foi realizada uma pesquisa exploratório - descritiva, de abordagem quantitativa, com 37 enfermeiros pertencentes ao Núcleo Clínico Cirúrgico e Ambulatório de Terapia Antálgica de um Hospital Público Universitário. Foi aplicado questionário abordando conteúdo relacionado ao conhecimento dos enfermeiros sobre hipodermóclise. Os dados foram tabulados e foi realizada a análise descritiva, a partir de tabelas de distrib... (Resumo completo, clicar acesso eletrônico abaixo) / Abstract: The administration of fluids subcutaneously is increasingly recognized an alternative for patients who have conditions that preclude the administration of drugs orally and intravenously. Besides being a simple technique and easy to use, it has many advantages; among them we can mention the decrease in institutional burden, increased comfort, reduced trauma and infections. The nurse plays an important role in all aspects of care, therefore, should acquire technical and scientific knowledge and practical, using as hypodermoclysis tool, in order to minimize suffering and enhance the quality of life of patients in palliative care. Objective:Check the knowledge of nurses in inpatient units and analgesic therapy clinic on hypodermoclysis, and develop a standard operating procedure (SOP) and an e-book containing the correct technical punch and manageable medications subcutaneously. Methods: - descriptive quantitative approach, with 37 nurses belonging to the Core Clinical Surgical and analgesic therapy outpatient clinic of a Public University Hospital After signing the consent form Clarified an exploratory survey was conducted. It was applied questionnaire addressing content related to nurses' knowledge of hypodermoclysis. Data were tabulated and the descriptive analysis was performed from distribution tables of absolute and relative frequencies with statistical support.Results / Discussion: There was que70.27% of the study population reported having used hypodermoclysis, but 86.49% of nurses had no training to perform the técnica.51.35% had less time institution or equal to 5 years. Only 2 respondents had expertise in oncology, but all find it important to receive training on the subject. With the implementation of the products in the study institution, there must be change of routine medication administration by hypodermoclysis thus increasing the quality of care and patient... (Complete abstract click electronic access below) / Mestre

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)

O presente trabalho traz uma reflexão a respeito do lidar com a iminência da morte diante de um adoecimento, na perspectiva das pessoas que escolheram a paliação como forma de tratamento. Para tanto, o objetivo desta pesquisa é a compreensão de como um sujeito gravemente doente, sem possibilidade de cura, experiencía a paliação, como possibilidade de vivenciar sua enfermidade. Assim, o estudo focaliza os sentidos atribuídos à paliação, o processo de escolha deste tratamento e os impactos desta escolha. Foram entrevistados cinco sujeitos que optaram pela paliação como modo de tratamento diante de um diagnóstico de impossibilidade de cura de suas doenças. Para a produção dos dados da pesquisa, foram utilizadas as observações da pesquisadora registradas em um Diário de Campo e a escuta dos sujeitos doentes, através de uma entrevista semidirigida gravada e transcrita literalmente. A análise das narrativas e deste diário se deu a partir de uma análise descritiva de inspiração foucaultiana. Com relação aos resultados, é possível dizer que cada sujeito que escolheu a paliação, o fez diante do quadro clínico estabelecido. Assim, eles se ocuparam consigo, olharam para si, para suas necessidades, expectativas, fazendo da paliação um estilo de vida. Estes pacientes consideraram a consciência de sua finitude, em meio ao gerenciamento da morte pela equipe de saúde, e se constituíram como sujeito de seus atos, considerando suas prioridades: a família, o trabalho, o lazer e a qualidade de vida. O que os fez lidar com segurança e firmeza com os impactos desta escolha, a negação dos familiares com relação a ela, por exemplo. Diante disso, conclui-se que apesar de um gerenciamento da equipe de saúde em favor da paliação, vendo-a como a boa morte, é possível o sujeito doente realizar esta escolha a partir do seu modo próprio de subjetivar-se diante do adoecer, o que faz esta escolha ter um significado singular, particular, para o sujeito que a considera.

Thesis submitted in fulfilment of the requirements for the degree Master of Technology: Nursing In the Faculty of Health and Wellness Sciences At the Cape Peninsula University of Technology, 2013 / The syringe driver is a battery-operated device which accurately delivers a continuous subcutaneous infusion of a combination of medication to alleviate symptoms, such as pain, nausea and vomiting, noisy moist breathing and preterminal restlessness. The researcher who works in a palliative care unit in Cape Town noticed the ambivalence and negative attitudes from family members regarding the use of the syringe driver. This gave rise to distress, conflict and ambivalence in patients and between family members. This study aimed to gain insight into the understanding, perceptions and expectations of families of terminally ill patients commenced on a syringe driver in a palliative care unit. A descriptive, qualitative research method was employed using semi-structured interviews, diaries, observation and documentation as the data collection methods. Data was coded and arranged into themes. Thematic analysis and coding were used to analyse the data during this study. This study found that the lack of education and written information were the two major contributing factors towards negative attitudes causing ambivalence in family members whose relatives were on a syringe driver. This study also highlighted the need for quality improvement control when using the syringe driver in the palliative care unit. The need for continuous education and written information and support for the immediate and extendedfamily members was evident. KEY WORDS: Syringe driver, Symptom control, Family members, Terminally ill, Palliative care unit.