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

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.

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

HIV-positive children in sub-Saharan Africa have numerous challenges to overcome. These challenges increase psychosocial stress as well as symptom burden including fatigue, weight loss, pain, and mental changes. The symptoms may persist even after initiation of antiretroviral therapy, so such children need additional care. Palliative care lays emphasis on holistic patient-centered care, including physical, psychological, social, and spiritual symptoms, alongside antiretroviral therapy. There is limited data on the impact of integrating palliative care with standard HIV care and treatment in children. The purpose of this study was to fill the gap in the literature by investigating the impact of palliative care on health status in HIV-positive children on antiretroviral therapy. The theoretical framework was based on the humanistic nursing theory. Using the Mann Whitney U and logistic regression tests, the health-related quality of life of 97 children who received palliative care in addition to standard HIV care was compared to 180 HIV-positive children who received standard HIV care only through chart reviews. According to study results, children receiving palliative care alongside antiretroviral therapy have better physical and psychosocial health compared to children receiving only antiretroviral therapy. Increasing age was a contributing factor to better psychosocial and physical health in patients receiving palliative care. Emotional, social, and school functioning are important factors that determine treatment outcomes in children on antiretroviral therapy, and addressing those factors through palliative care will create a positive social change by improving treatment outcomes, quality of life, and longevity.

Thesis (M.A.)--Catholic Theological Union at Chicago, 1996. / Vita. Includes bibliographical references (leaves [44]-47).

Thesis--University of Oklahoma. / Bibliography: leaves 71-73.

Thesis (Ph.D.)--University of Alabama at Birmingham, 2008. / Title from first page of PDF file (viewed on June 24, 2009). Includes bibliographical references.

Thesis (D. Min.)--Emmanuel School of Religion, 2007. / Vita. Includes bibliographical references (leaves 176-177).

Thesis (Ph.D.)--Georgetown University, 2008. / Includes bibliographical references.

Thesis (D. Min.)--Emmanuel School of Religion, 2007. / Includes vita. Description based on Microfiche version record. Includes bibliographical references (leaves 176-177).