Thesis (M.A.)--University of South Florida, 2006. / Title from PDF of title page. Document formatted into pages; contains 38 pages. Includes bibliographical references.

This thesis analyses doctors empathising with patients in palliative care interactions. Historically, palliative care has treated not only patients physical pain but their emotional pain, as well. Although the importance of empathy (defined for the purposes of this thesis as The doctor s expressed understanding of the patient s emotional experience ) has been emphasised in this environment, however, there has been no prior research showing how palliative care doctors actually empathise with their patients in practice. Drawing upon 37 recordings of doctor-patient consultations collected in a UK hospice, this thesis addresses this omission by using conversation analysis (CA) to analyse several facets of empathy in this environment. The analysis begins in chapter four by considering the ways in which doctors can empathise with patients. It shows how doctors can empathise semantically, either by reworking what the patient has themselves said or by showing understanding on a normative basis. It also considers non-semantic ways of displaying empathy (e.g. response cries), showing how these are fundamentally different to the semantic type of empathic display. Overall, this chapter shows that empathy is not restricted to particular formats but, rather, is dependent upon the content of the doctor s turn. The analysis then moves on consider the wider context of doctors empathic responses. Chapter five, first of all, analyses cases where patients emotions become the topic of the interaction, either because the doctor asks about them directly or because the patient raises an emotionally-implicative topic. The emphasis here is on how palliative care doctors can talk to patients about, and empathise with, their emotions without necessarily having to do anything about those emotions. Chapter six then focuses on cases where patients emotions are discussed alongside the more task-driven aspects of the consultation, either because the patient s physical condition has had an emotional impact on them or because their presenting problem is inherently emotional. In contrast to chapter five, then, the source of the patient s emotions here can be treated by the doctor without the emotions being topicalised. The final two chapters of the analysis focus on doctors empathising with patients not in response to something that the patient has said but in the service of some task. Chapter seven shows how doctors can empathically bridge the gap between their medical and the patient s experiential perspectives at moments where it becomes clear that there is a disparity between the two. These include moments where the patient expresses expectations that go beyond what can realistically be provided, moments where the patient might take offence at the doctor s advice and moments where the doctor must reassure patients about their symptoms without seeming to criticise their emotional responses to those symptoms. Chapter eight, meanwhile, shows how doctors can empathically demonstrate that their practice is being driven by a due consideration of the patient s feelings. Specifically, it shows how doctors can draw upon patients feelings in helping them come to a decision about a treatment, cite those feelings when accounting for a treatment that they have recommended and frame a difficult topic as an outgrowth of sentiments that the patient has already expressed. In conclusion, this thesis shows how empathy is not clearly demarcated in palliative care. While there are cases where patients emotions are discussed and empathised with for the sake of discussing and empathising with them, more commonly, empathy and emotion are interwoven alongside and into the task-driven aspects of consultations. This thesis thus shows the interactional manifestation of palliative care s underlying philosophy, with patients emotional pain addressed alongside their physical pain in an integrated, holistic way.

This thesis deals with the stressful situations in the profession of the nursing staff. The occupation of the nurse belongs to the most demanding ones. In this occupation, the nurse is permanently affected by many stressors of different types. She faces death, the suffering, dying and incurably ill people very often. She is there in times of pain, agony and suffering. Personal encounters with these difficult situations require highly professional approach but most of all, they present immense work stress for the nurse. The theory section describes mainly the stressful situations that are the most common and most difficult in the work of the nursing staff. The next part of the theory section describes possible consequences of the stressful situations and methods of managing them including the support by the management. This thesis has two objectives. The first objective was to map the manners used by the nursing personnel to cope with the stressful situations brought by their profession. The second objective was to find out the difference in the coping with the stressful situations between the hospital staff and hospice staff. The research section of this thesis contains the quantitative research done using the technique of an anonymous questionnaire with 20 question prepared by ourselves. The questionnaire was distributed to the nursing staff of all categories in the hospital and hospice care. It was completed by 269 respondents in total. The data was statistically processed using systems Microsoft Excel 2010 and Software R, version 3.0.2 (Chi-squared test, Fisher´s exact test, and Wilcoxon test). We determined four hypotheses. H1: Manners of coping with the stressful situations depend on the qualification of the nursing staff reached; not confirmed. H2: Manners of coping with the stressful situations are influenced by the length of practice of the staff; not confirmed. H3: Manners of coping with the stressful situations differ between the hospital staff and hospice staff; confirmed. H4: The nursing staff views their own mental hygiene as more efficient than the support from the management concerning the coping with the stressful situations; confirmed. The research results show that the nursing staff faces the stressful situations very often. They see as the heaviest stress the care of the suffering and aggressive patient, conflicts with the patient´s family, conflicts at work and workload. The manners of coping with the work burden which proved as the best for them are relax, rest and sleep. There were no differences proved in the manners of coping with the stress among respective members of the nursing team. Nevertheless, the coping with the work burden of the nursing staff in the hospital and hospice care is different. A minimum of the respondents notices any support during the stressful situations from the employer. On the other hand, certain support by the management could be viewed in the form of trainings, supervision or contribution to a "recovery" which are granted to the respondents from the employer according to their answers. However, the respondents would prefer, as the support by the management, the increase in pay or more days off. The respondents view as insufficient the preparation of the graduates for the future stressful situations in their profession, as well. They would recommend mainly various trainings dealing with the stress and its management. A good solution to alleviate the work burden of the nursing staff and quality enhancement of the services provided could be investments into better work conditions, both in terms of sufficient human and material resources and the very organization of the work processes.

This diploma work deals with hospice and a quality of care given to the clients of the hospice, that fully covers complex needs, changing during a life limiting illness, taking in account the dignity of the human being to the very last moment of his life. This care is a promise for a man, that he won´t be alone in the burdensome moments of his life. There are a hospice management and various forms of hospice care in Czech Republic described in a theoretical part of the work. This chapter is to be a handbook for providing companionship to the dying person and is to draw our attention not only to the changing priorities of the dying person and to stages, that he is to go through, but to an irreplaceable role of a caregiver at his bed. In a practical part of this work there are investigated the attitudes of the caregivers in hospice and public to the process of dying of the human being. The founded results of the research show, that people finding themselves in a final stage of the life-limiting illness change their priorities; the spiritual needs become more important, especially to attain a peace with self, with other people; clients trusting in God long for consilience with God; the results of the research show however, that most public is not familiar enough with the problem of dying and death, and that there is generally low knowledge on how to provide companionship to the dying person.

No Brasil, atualmente, não há diretrizes estruturadas para os cuidados paliativos em pediatria e, muito menos, em hebiatria. Os familiares são participantes ativos no cuidado a criança e ao adolescente com câncer, especialmente na fase final da vida, período em que vivenciam o processo de morte e morrer e necessitam de vínculo com os serviços de saúde para manter a qualidade de vida de crianças e adolescentes com câncer e de seus familiares. O presente estudo tem como objetivo investigar a experiência dos familiares no cuidar de crianças e adolescentes com câncer, em cuidados paliativos, particularmente nos cuidados ao final da vida. Trata-se de uma pesquisa de natureza descritiva e exploratória, com análise qualitativa dos dados. Participaram do estudo quatorze familiares, cuidadores de crianças e adolescentes que morreram por câncer no período de julho de 2010 a dezembro de 2011, em acompanhamento no setor de Onco-Hematologia do Hospital das Clínicas da Faculdade de Medicina de Ribeirão Preto da Universidade de São Paulo. A coleta de dados foi realizada em dois momentos: primeiramente nos prontuários das crianças e adolescentes, buscando informações clínicas e, após, em entrevista, acompanhada de observação e realização do genograma e ecomapa. Os dados empíricos foram organizados ao redor de três temas: \"O impacto do agravamento da doença na dinâmica familiar\", descrito a partir das necessidades, sentimentos e reorganização familiar; \"Comunicação de más notícias\", discutido a partir da comunicação entre a criança e o adolescente, equipe de saúde e família relativa ao processo de morte e morrer e \"A vivência da família diante dos cuidados paliativos\", evidenciado pelos conhecimentos da família frente aos cuidados paliativos, sentimentos e necessidades da criança e adolescente nos cuidados ao final da vida. Esse estudo mostrou-se relevante para a assistência à criança e ao adolescente com câncer no fim da vida, pois, as vivências das famílias no cuidado a criança e ao adolescente poderão contribuir para a compreensão do processo de cuidar à luz dos fundamentos dos cuidados paliativos. / Currently, there are no guidelines structured to provide palliative care to pediatric patients, let alone for adolescent patients. Family members actively participate in the care provided to children and adolescents with cancer, especially in the final stage of life, a period when they experience death and the process of dying and ties with health services are required to maintain the quality of life of children and adolescents, as well as that of their families. This study\'s objective was to investigate the experience of family members of children and adolescents with cancer in terms of palliative care, especially care provided in the final stage of life. This is a descriptive and exploratory study with qualitative analysis of data. A total of 14 family members participated in the study. They were the caregivers of children and adolescents with cancer who died from July 2010 to December 2011 and were monitored by the Oncology-hematology unit of the Hospital das Clínicas, Medical School, University of São Paulo at Ribeirão Preto. Data were collected at two points in time: first, clinical information was collected from the children\'s and adolescents\' medical files and then interviews, accompanied by observation and genomapping and ecomapping, were held. Empirical data were organized around three themes: \"The impact of the aggravation of the disease on the family\'s dynamics\", based on the family\'s needs, feelings and reorganization; \"Communicating bad news\", based of the communication among the child or adolescent, health staff, and the family concerning death and the dying process, and \"The experience of the family concerning palliative care\", evidenced by the family\'s knowledge concerning palliative care and the feelings and health needs of children and adolescents at the end of life. This study is relevant in the field of care provided to children and adolescents with cancer in the final stage of life because the experiences of families in providing care to children and adolescents at the end of life can contribute to better understanding the process of providing care in light of the fundamentals of palliative care.

Este estudo objetivou entrevistar cuidadores de idosos falecidos, inventariando a presença, a gravidade e a duração de sintomas comuns no último ano de vida do idoso, e verificando a possibilidade de o idoso ter recebido tratamento paliativo para tais sintomas. Idosos foram arrolados por meio de inquérito domiciliar de base populacional no Butantã (São Paulo); idosos falecidos durante o período de seguimento (2 anos) eram elegíveis, desde que os cuidadores dos idosos fossem entrevistados entre três e 16 meses após o óbito; utilizou-se questionário sobre dor, ansiedade, depressão, choro, insônia, dispneia, astenia, anorexia, náuseas, obstipação, diarreia, incontinência urinária e fecal, e úlceras de pressão. Foram entrevistados 81 cuidadores; a idade média do idoso ao falecer foi 78 anos; as causas de óbito mais frequentes foram neoplasia, pneumonia, acidente vascular cerebral e insuficiência cardíaca congestiva; os sintomas mais frequentes no último ano de vida foram dor (78%), fadiga (68%), dispneia (60%), depressão e anorexia (58% cada); dor, dispneia e fadiga foram os mais intensos; dor, fadiga e depressão duraram 6 meses ou mais; na última semana de vida, os mais frequentes foram fadiga, incontinência urinária, anorexia, dispneia e dor; ficaram sem tratamento 79% dos idosos com depressão, 77% dos idosos com incontinência urinária e 67% dos idosos com ansiedade. É necessário melhor aplicar os conceitos e ações de cuidados paliativos para dar aos idosos brasileiros mais dignidade e qualidade ao final da vida. / The present study aimed at interviewing family caregivers of deceased elders to investigate the presence, severity and duration of common symptoms, as well as whether they were managed during the last year of life. Elders were enrolled to a population-based study in Butantã (western São Paulo); after a two-year follow-up assessment, any death was eligible for the present study since the carers were interviewed between three and sixteen months after the death of the elder, and responded to a questionnaire on: pain, anxiety, depression, easycrying, insomnia, dyspnea, fatigue, anorexia, nausea, constipation, diarrhea, urinary and fecal incontinence, and pressure sores. Eighty-one carers were interviewed; mean age was 78 among the deceased elders; the most frequent causes of death were cancer, pneumonia, stroke and heart disease; the most frequent symptoms at the last year were pain (78%), fatigue (68%), dyspnea (60%), depression and anorexia (58% each); pain, dyspnea and fatigue were the most severe; pain, fatigue and depression lasted 6 months or more; the most frequent in the last week of life were fatigue, urinary incontinence, anorexia, dyspnea and pain; no treatment was received for depression, urinary incontinence and anxiety (respectively, 79%, 77% and 67% of the elders with the symptom). It is mandatory to implement the concepts and actions of palliative care to provide Brazilian elders with dignity and better quality at the end of life.

Bakgrund: Cancersjukdomar är vanligt förekommande och var tredje person kommer under en livstid att drabbas. Vård i livets slutskede kan bedrivas på olika platser, bland annat på hospice. Den största patientgruppen som vårdas inom den specialiserade palliativa vården är patienter med en cancerdiagnos. Att leva med sjukdom, såsom cancer, påverkar personens identitet. Hur dessa patienter upplever sin vistelse på hospice påverkar dennes känsla av Sammanhang (KASAM). Studier tyder på att om hospice involveras påverkas dels bemötandet men också kunskap och symtomlindring till det positiva. Syfte: Syftet med studien var att belysa upplevelsen av att vara patient med cancerdiagnos i palliativt skede på hospice. Metod: En allmän litteraturöversikt baserad på 11 artiklar med kvalitativ ansats, analysen utgick från manifest och latent analys. Resultat: Resultatet presenteras utifrån tre kategorierna: Existentiella upplevelser, Upplevelsen av hospice som kontext samt Upplevelsen av relationer. Diskussion: Diskussionen behandlar patienternas upplevelse av relationen till andra patienter och personalen men även mödrar som en särskild grupp. Relationen till andra patienter på hospice upplevdes som stöttande och den personal som arbetade på hospice uppfattades som empatisk och kunnig. Mödrar utmärkte sig under vistelsen genom att fokusera på sina barn.

Delirium is a disturbance of consciousness and cognition that affects many terminally ill patients before death. It can manifest as confusion, hallucinations, and restlessness, all of which are known to be distressing to patients, families, and professional caregivers. Underlying the contemporary palliative care movement is a belief in the idea that a good death is possible; that dying can be made better for patients and families through the proper palliation of distressing symptoms and through proper attention to psychological, social, and spiritual issues that affect wellbeing at the end of life. Given that delirium is potentially disruptive to all that the good death assumes, i.e., mental awareness, patient-family communication, peace and comfort, the question was asked: What is the relationship between end-of-life delirium and the good death in hospice care? Ethnographic fieldwork was conducted at a freestanding residential hospice over a period of 15 months in a suburban community in eastern Canada. The research methods included participant observation (320 hours over 80 field visits), interviews with 28 hospice caregivers, and document analysis. The findings of this study provide an in-depth examination of the nature of caregiving relationships with patients and with families in end-of-life care. They illustrate how a commitment toward providing for the good death prevails within the cultural community of hospice, and how the conceptualization, assessment, and management of end-of-life delirium are organized within such a commitment. In this setting, experiences of conscious and cognitive change in dying are woven by hospice caregivers into a coherent system of meaning that is accommodated into prevailing scripts of what it means to die well. At the same time, delirium itself provides a facilitative context whereby processes of supporting families through the patient’s death are enabled. This study highlights the relevance of considering the contextual and cultural features of individual end-of-life care settings that wish to examine, and perhaps improve, the ways in which care of delirious patients and their families is provided.

abstract: ABSTRACT Individuals receiving hospice care at the end of life have a unique set of needs, requiring interdisciplinary assessment and treatment to meet their multidimensional circumstances and create a supportive and comfortable experience. Music therapy is often an integral component of hospice care utilized to treat the whole person. While there are published music therapy assessment tools for use with the hospice population, there is no assessment tool specifically aimed at understanding the role of music preference in the context of the hospice patient’s multidimensional musical ecosystem identity. The purpose of this thesis was to create an assessment tool to understand and document the individualized connections between a hospice patient’s familiar and preferred music and their musical identity, in order to increase cultural awareness and to utilize music selection with purpose while supporting and empowering the patient. The proposed music preference assessment tool utilizes an ecomap structure and combines theories and philosophies from the fields of music therapy and social work. The needs of the hospice population are identified and music therapy is discussed as a treatment modality in hospice. Existing music therapy and social work assessments are identified and examined and elements of each are utilized in the creation of the proposed music preference assessment tool. A template and example assessment tool are provided with considerations for clinical implications and uses. / Dissertation/Thesis / Masters Thesis Music Therapy 2020

Bakgrund Ett barns död kan verka som något av det svåraste en familj skulle kunna gå igenom. Det drabbade barnets ålder och utveckling är beroende av dennes upplevelse, men även hur föräldrar och syskon agerar gentemot barnet. De drabbade barnen ges palliativ vård, vars syfte är att symtom- och smärtlindra i syfte att förbättra livskvalitet i livets slutskede. Vården anses vara lämplig för de med en allvarlig eller livshotande sjukdom och finns till för att stödja patienten och dennes familj i slutstadierna av sjukdomsförloppet. En sjuksköterskas bemötandet och agerande är även viktigt då det kommer till hur kring den drabbade och dennes familj upplever sin situation. Syfte Syftet var att beskriva familjers erfarenheter och upplevelser inför och i samband med sitt barns död. Metod För denna studie valdes litteraturöversikt som metod, där 15 artiklar av kvalitativ och kvantitativ metod användes. Artiklarna analyserades genom en integrerad analys. Resultat Hur en familj upplever sitt barns förestående död och död beror på erfarenheter och åsikter om hur ett liv definieras. Kommunikation visade sig var en bärande pelare både i förhållande till vården, men även det sjuka barnet. Föräldrars delaktighet i stora beslut hade betydelse för upplevelsen, så även vårdplatsen, oavsett om den var i hemmet eller på sjukhus. Familjernas känslor var en stor del av upplevelsen där två återkommande känslor var rädsla och hopp. Slutsats En viktig slutsats är att alla familjer upplever sitt barns förestående död på olika sätt och behöver stöd på olika sätt. Öppenhet och ärlighet visade sig var bärande komponenter för att kunna möta familjerna i dessa svåra situationer. Fokus bör ligga på bemötande där båda parter ska vara delaktiga och har en möjlighet att känna sig delaktiga.