published_or_final_version / Social Work / Master / Master of Social Sciences

Thesis (M.S.)--University of Michigan, 1992.

The United States of America is a country composed of various ethnicities. This country is considered to be a multi-cultural society. There are various cultural traditions values, norms and superstitious practices within each ethnic group. Attitudes toward end of life care are complex and vary differently across each ethnic group. This study explored factors that explained African Americans' disproportionate use of hospice. Access to hospice care was address, experience with hospice was explored, and recommendations were provided. This study conducted non-experimental research. The design of this exploratory study was quantitative in nature. A survey approach was utilized to collect data that was statistically analyzed. The important concept was African American disproportionate use of hospice. The variable willingness to use was employed to try to explain African Americans' disproportionate use of hospice. The independent variables African Americans who mistrust formal healthcare providers and knowledge about hospice services were operationalized using multiple indicators. The independent variable experience with hospice services did not use a scale. The research findings supported all three study hypotheses. This research results recommend that an important focus of the future be to counsel persons on the availability of hospice as an option for end-of-life care. Well-structured programs of training in cultural awareness and cultural competence throughout the ranks of the health care system must be instituted. Such an effort will pay dividends in reducing cultural mistrust and push closer to eliminating health disparities between minority groups and the rest of society.

This thesis concerns the ethical aspects of accompanying the caregivers and the dying in hospice care and problematic situations in this care. This thesis is comprised of four chapters. The first chapter concerns hospice care - form, goals and definitions of hospice care. The second chapter focuses on hospice care in social work, which belongs to hospices. The third chapter concerns the ethics in social work, ethical dilemmas in social work and the importance of ethics in social work itself. The fourth chapter is focused on ethics in hospice care, dilemmas and ethical aspects of communication and mourning within hospice care.

The main topic of this dissertation is Volunteers in hospice care in the Czech Republic. The aim was find the role of volunteers in hospices and benefit of their work for clients of these institutions. The work is divided into six chapters. Theoretical part consists of five chapters focused on death and dying and of ethical issues of the end of life. The research and its results are described in sixth chapter. The overall goal of this dissertation is to talk about end of life dying and death because it is a taboo in our society.

The diploma thesis is focused on the society's view of the problems of legalization of euthanasia. The thesis is divided into two main parts, the theoretical and the empirical one. The theoretical part consists of the basic terms related to the given problems, further of historical development of euthanasia, countries where euthanasia is legalized, arguments of proponents and opponents of euthanasia and paliative care. The practical part follows after theoretical information and deals with analysis of data gained by a questionnaire research and interpretation of individual findings relating to respondents' general awareness of euthanasia and differences in the view of euthanasia between lay public and professionals. At the end of the thesis, the concrete recommendations in future discussions about euthanasia are proposed on the basis of gained information.

The growing older adult population, their age-related morbidities, and lifelimiting chronic illnesses increase the demand for quality yet cost-effective end of life (EOL) care. Losing a loved one creates emotional turmoil, heightened uneasiness, and EOL uncertainties for family members. Understanding the complex needs of family members and supportive actions deemed most significant to them can guide nurses to enhance EOL care, encouraging palliation and peaceful death experiences. This study used a qualitative descriptive exploratory design guided by story theory methodology to explore the dimensions of the health challenge of losing a loved one who had been in an acute care setting during the last three months of life, the approaches used to resolve this health challenge, and turning points that prompted decisions about a loved one’s care with 15 older adults residing in a Continuing Care Retirement Community (CCRC) in Southeast Florida. Theoretical grounding for this study was Watson’s (1988, 2002) theory of human caring and Smith and Liehr’s (2014) story theory. Older adults’ stories were analyzed through theory-guided content analysis. Themes that describe the health challenge include moving from painful holding on to poignant letting go, uneasiness that permeates everyday living and precious memories, patterns of disconnect that breed discontent, and pervasive ambiguity that permeates perspectives about remaining time. Approaches to resolve this challenge include active engagement enabling exceptional care for loved ones, appreciating the rhythmic flow of everyday connecting and separating to get by, and embracing reality as situated in one’s lifelong journey. Failure to establish normalcy, coming to grips with abrupt health decline/demise, and recognition – there’s nothing more to do – were the turning points identified by CCRC residents. Older adults’ vivid recollections of losing a loved one and willingness to share EOL concerns as well as recommendations regarding support of family members who are facing this challenge serve as invaluable guidance for improving EOL care for dying patients and their family members. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2016. / FAU Electronic Theses and Dissertations Collection

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.

INTRODUÇÃO: A epidermólise bolhosa é uma doença sistêmica crônica que afeta profundamente a qualidade de vida do paciente e cujas manifestações bucais comprometem as atividades diárias corriqueiras, como mastigar, engolir e escovar os dentes. Crianças com câncer também podem ter manifestações bucais, entretanto estas, embora graves, são transitórias e geralmente não afetam os dentes. OJETIVOS: Avaliar a saúde bucal e a necessidade de atenção odontológica em crianças que se encontram em cuidados paliativos devido a uma doença sistêmica crônica não-oncológica, a epidermólise bolhosa, comparativamente com crianças em cuidados paliativos com câncer MÉTODOS: Vinte e quatro pacientes com epidermólise bolhosa (grupo A) e dezoito pacientes com câncer (grupo B) acompanhados pela equipe de dor e cuidados paliativos foram estudados. A avaliação clínica incluiu: características sóciodemográficas, queixas bucais, avaliação da dor orofacial, avaliação dentária, avaliação da qualidade de vida relacionada às atividades de vida diária e condição de saúde geral. RESULTADOS: Ambos os grupos foram homogêneos em relação à faixa etária e distribuição de gênero. Dormência facial, mobilidade dental, alteração do paladar, e dificuldade de fonação estavam presentes apenas no grupo B. Dificuldade de mastigação, disfagia, engasgos, lábios ressecados, e lesões bucais foram mais freqüentes no grupo A que no grupo B, com diferença significante, p<0,0001, p<0,0001, p=0,002, p<0,0001 e p<0,0001 respectivamente. Observou-se uma maior limitação de amplitude de abertura bucal interincisal, número de dentes cariados, prevalência de cárie, e incapacidade na realização das tarefas dos domínios III (alimentar-se) e VII (apanhar) do questionário de qualidade de vida no grupo A em comparação ao B, com diferença significante, p< 0,0001, p=0,0004, p< 0,001, p<0,001, p=0,005 e p<0,0001 respectivamente. Ambos os grupos apresentaram acometimento importante da condição de saúde geral. CONCLUSÕES: As crianças com epidermólise bolhosa em cuidados paliativos têm úlceras e bolhas freqüentes decorrentes da doença e de modo crônico, enquanto as crianças com câncer apresentam episodicamente mucosites associadas ao período de tratamento. Também apresentam maior freqüência de queixas bucais, condição de saúde bucal grave, maior limitação de abertura bucal e pior qualidade de vida para as tarefas diárias que os pacientes com câncer / INTRODUCTION: Epidermolysis bullosa is a genetic chronic disease that affects the quality of life deeply, whose oral symptoms compromised the daily living activities as chewing, swallowing and teeth brushing. . Children with cancer may also have oral manifestations, but transient and usually do not affect the teeth. This study assessed the oral health and the need of oral care in children in palliative care with epidermolysis bullosa compared to children with cancer. METHODS: Twenty-four patients with epidermolysis bullosa (Group A) and 18 cancer patients (Group B) followed up at the Pain and Palliative Care Outpatient Clinic were studied. Clinical assessment included: clinical characteristics, assessment of orofacial pain, oral health, quality of life according to the activities of daily living and general health status. RESULTS: Face numbness, tooth mobility, taste disturbance and speech difficulties were observed only in group B. Difficult chewing, disfagia, gagging, dry lips, oral lesions were more frequent in group A compared to group B, with significant difference, p<0,0001, p<0,0001, p=0,002, p<0,0001 and p<0,0001, respectively. Group A had a greater difficulty opening mouth, number of decay teeth, prevalence of caries and disability regarding the CHAQ eating (III) and reach (VII) domains than group B, with significant difference, p< 0,0001, p=0,0004, p< 0,001, p<0,001, p=0,005 and p<0,0001, respectively. Both groups showed a significant general health impairment. CONCLUSIONS: Epidermolysis bullosa patients in palliative care had chronic oral blistering and ulcerations, due to disease, more frequently than cancer patients, which had oral mucositis as a side effect of the antineoplasic treatment. They also showed greater oral symptoms, poor oral health, greater open mouth limitation and poor quality of life than cancer patients

邵倩文. / "2012年5月". / "2012 nian 5 yue". / Thesis (M.Div.)--Chinese University of Hong Kong, 2012. / Includes bibliographical references (leaves 50-54). / Abstract in Chinese and English. / Shao Qianwen. / 摘要 --- p.i / ABSTRACT --- p.ii / 目錄 --- p.iv / Chapter 第一章： --- 引言 --- p.1 / Chapter 1.1. --- 現代化社會下的臨終者的處 境 --- p.1 / Chapter 1.1.1. --- 醫療化的死亡´ؤ´ؤ非人性化、割裂化之的治 療 --- p.3 / Chapter 1.1.2. --- 在社會上隔離臨終 者 --- p.3 / Chapter 1.1.3. --- 視「死亡與臨終」爲禁忌，爲羞恥´ة爲失 敗 --- p.4 / Chapter 1.1.4. --- 小 結 --- p.4 / Chapter 1.2. --- 「死亡意識」運動興 起 --- p.5 / Chapter 1.3 --- 教會、牧者在現今的社會中如何回應臨終者的處境 --- p.7 / Chapter 1.3.1. --- 基督教會放棄與「否認死亡」文化抵抗´ة間接隔離臨終者 --- p.7 / Chapter 1.3.2. --- 「牧養關懷」探索以基督的身份、角色去回應臨終者處境 --- p.9 / Chapter 1.4. --- 本文硏究目的 --- p.10 / Chapter 1.5. --- 本文硏究方法 --- p.11 / Chapter 第二章： --- 臨終者及臨終關懷者個人處境 --- p.13 / Chapter 2.1. --- 臨終者自身的需要´ؤ´ؤ靈性層面 --- p.13 / Chapter 2.1.1. --- 臨終病者的靈性觀及靈性需 要 --- p.13 / Chapter 2.1.2. --- 臨終病者期望怎樣的醫護人員能關顧他們的靈性需 要 --- p.16 / Chapter 2.2. --- 臨終關懷者的狀況´ؤ´ؤ提供靈性護理層 面 --- p.18 / Chapter 2.3. --- 臨終關懷者的給予關懷上的阻 礙 --- p.20 / Chapter 2.3.1. --- 不同的崗位，不同的功能´ؤ´ؤ牧關工作者的同在要 求 --- p.20 / Chapter 2.3.2. --- 牧關工作者「同在」的無助感、孤單感及耗盡 感 --- p.21 / Chapter 2.3.3. --- 減輕牧關工作者的耗盡感及無助感的矛 盾 --- p.22 / Chapter 2.4. --- 小 結 --- p.24 / Chapter 第三章： --- 莫特曼的十架三一神論 --- p.25 / Chapter 3.1 --- 莫特曼十架的三一神論建構的進路 --- p.25 / Chapter 3.1.1. --- 從經驗苦難的生平，而引發的神學思 維 --- p.25 / Chapter 3.1.2. --- 以回應社會處境´ة而引發三一論構思的演變進 程 --- p.27 / Chapter 3.2. --- 莫特曼三一論的特 色 --- p.28 / Chapter 3.2.1. --- 莫特曼面對當下處境三一論說的扭 曲 --- p.29 / Chapter 3.2.2. --- 以上帝的歷史的向度，對抗上帝爲「最高的實體」 --- p.31 / Chapter 3.2.3. --- 以內在三一´ة對抗上帝爲「絶對主體」 --- p.33 / Chapter 3.3. --- 小 結 --- p.38 / Chapter 第四章： --- 莫特曼的三一論與牧養臨終者 --- p.40 / Chapter 4.1. --- 三一神論´ة提供牧養臨終者的原則 --- p.40 / Chapter 4.2. --- 從三一神論，去定義牧關工作者的身份與位置 --- p.42 / Chapter 4.3. --- 十架三一論，爲牧養臨終者的過程提供指引 --- p.44 / Chapter 4.4. --- 小結 --- p.47 / Chapter 第五章： --- 總結´ؤ´ؤ莫特曼的三一思維的進路限制與展望 --- p.48 / Chapter 第六章： --- 參考書目 --- p.50 / Chapter 6.1. --- 英文參考書目 --- p.50 / Chapter 6.2. --- 中文參考書目 --- p.53