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

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.

This research focused on experiences of dying patients and hospice nurses in a hospice unit. The research objectives were to (i) acquire more extensive knowledge about how dying patients and hospice nurses experience life and death and (ii) describe patients who were cared for during a 10-year period in an inpatient hospice ward. Data were gathered via interviews with 19 nurses and 11 patients. An interpretive description method was used to analyze interview results. Data were also gathered from institutional care records that included gender, age, marital status, diagnosis, referral source, and length of stay (666 women and 555 men). Descriptive statistics were used to describe basic features of the study's data and to compare differences between women and men. The main finding from interviewing the nurses was that they were struggling to acknowledge and unveil the person within the weakening body. In doing so, they used various strategies such as (i) striving to understand patients’ experiences of body function loss; (ii) encouraging patients to uphold body functions and daily habits; (iii) acknowledging and balancing patients’ need for body control; and (iv) providing tender care for the body. After 2 years of work in hospice care, nurses described that facing the dying and death of many patients had an impact on daily work and private life. The close relationship with the dying patient led to existential issues concerning the meaning of life and death, which were conceptualized into this theme: death as an agent of change. Eleven years later, the presence of death took a less dominant place in the nurses’ lives, and the theme became: death as a companion in life. In the long-term, nurses emphasized that their relationships with dying patients fostered their professional and personal growth. The findings from interviewing the patients revealed that when death became a reality, life took on new meaning, and they acquired new values that were important to preserve or protect; this triggered need for feeling secure within this situation. These revelations were manifest in three sub-themes: (i) when possible death becomes a reality; (ii) living with death as a reality, and (iii) a need for a feeling of security. And this main theme was conceptualized: making sense of life close to death. Results regarding patients in hospice ward care over a 10-year period revealed significant differences between women and men. More women than men were single, had cancer with relatively short trajectories, and were referred from the oncology department. More men than women were diagnosed with types of cancer with somewhat longer trajectories. Despite longer trajectories, length of stay was shorter for men than for women. The most frequent referral source was the hospital. But compared to women, men (particularly younger men) were more often referred from home-based hospice care. The findings expand knowledge about dying and its various configurations; consequently, care and support needs will vary. For the dying person, it is important to know that care is provided according to the person’s preferences and given when needed.

Under the influence of Confucianism, Taiwanese people have always emphasized family values as an essential culture. The concept of relationship completion (Byock, 1996) was embodied as the core belief for end-of-life care in Taiwan, known as the Four Expressions in Life: Love, Gratitude, Forgiveness, and Farewell. The palliative care team in Taiwan advocates the Four Expressions in Life to help patients at the end of life strengthen bonds with their families. However, the traditional and conservative culture in Taiwan often impedes relationship completion. The purpose of this study was to examine the effects of music therapy to facilitate relationship completion for patients at the end of life and their families, and to understand the perceptions of patients at the end of life and families about their relationship completion during music therapy. This study took a further step in exploring how the perceptions of patients at the end of life, and their families about their relationship completion during music therapy helped to explain the effects of music therapy intervention.This study employed a convergent mixed methods design in which qualitative and quantitative data were collected in parallel stages, analyzed separately, and then the findings were merged. For the quantitative phase, a convenience sample of 34 patients at end-of-life care at a large teaching hospital in southern Taiwan and 36 of their family members were recruited in a single music therapy intervention with a one-group pretest-posttest design. Measures included the “Life Completion” subscales of the Quality of Life at the End of Life (QUAL–E) survey and a single-item global QoL indicator for patients as well as the QUAL-E (Fam) survey and a question of Overall Quality of Life for family members. In the qualitative phase, a nested sample of five patients and nine family members completed the semi-structured interviews about their experiences of the music therapy sessions. There were significant differences (p<.001) between the pre and post session scores for the Life Completion subscale of the QUAL-E and between pre-post scores for the global QoL Indicator for patient participants. The results also showed a significant difference (p<.001) in the scores for the Completion subscale of the QUAL-E (family) and a significant difference (p<.001) in the scores for Overall Quality of Life for families from before music therapy session to after music therapy session. Four themes emerged from the qualitative results: music therapy provides the opportunity for exploration, music therapy provides the opportunity for connection, music therapy provides the opportunity for expression, and music therapy provides the opportunity for healing. The integrated findings suggested that music therapy facilitated relationship completion and improved quality of life for both patients and their families. The use of songs in music psychotherapy had a significant contribution to relationship completion. Song interventions can accommodate a patient's physical weakness and life-limiting obstacles at the very end of life to achieve the ultimate goal to improve quality of life, by assisting relationship completion. The results suggested that the transformative level of music therapy within a single session for end-of-life care in Taiwan is both feasible and culturally acceptable. / Music Therapy

The documented experiences and perceptions of lesbian, gay, bisexual, and transgender (LGBT) patients receiving hospice or palliative care gives merit to the need for the implementation of LGBT affirming environments in hospice care settings. The guidelines for creating these affirming environments are described in this paper. Applying the Donabedian (1988) model of structure, process, and outcome this thesis project analyzes identified interventions relevant to the implementation of LGBT affirming environments in hospice care settings. Utilizing a formal PICO questioning method, a search strategy was devised and studies were identified based on established criteria. The results suggest that there is a paucity of data in relation to the implementation of LGBT affirming environments in hospice care settings. In an effort to assist in identifying existing interventions that have not been studied this project also includes a recommended survey tool to measure the active efforts of hospice organizations to implement LGBT affirming environments.

Yes / Traditionally, family-focused care extends to parents and siblings of children with life-limiting conditions. Only a few studies have focused on the needs of grandparents, who play an important role in the families of children with illness and with life-limiting conditions, in particular. Interpretative phenomenological analysis was used as the methodological framework for the study. Seven bereaved grandparents participated in this study. Semistructured, individual, face-to-face interviews were conducted. A number of contextual factors affected the experience of bereaved grandparents, including intergenerational bonds and perceived changes in role following the death of their grandchild. The primary motivation of grandparents stemmed from their role as a parent, not a grandparent. The breadth of pain experienced by grandparents was complicated by the multigenerational positions grandparents occupy within the family. Transition from before to after the death of a grandchild exacerbated the experience of pain. These findings about the unique footprint of grandparent grief suggest the development of family nursing practice to better understand and support grandparents during the illness of a grandchild, in addition to bereavement support.

CHMELÍKOVÁ, Nikola. The Hospice Care Regulation in the Czech Republic: Charles University in Prague, Faculty of Social Sciences, Institute of Sociological Studies, Department of Public and Social Policy, 2014. Thesis Supervisor Mgr. Ing. Olga Angelovská The thesis titled "The Hospice Care Regulation in the Czech Republic" is about hospice care in the Czech Republic of its development due to the following important foreign and Czech documents in health and social care. The main reason that leads me to the elaboration of this work is particularly ambiguous and rather one-sided definition of hospice palliative care in the Czech Republic in terms of health care. In the analysis and evaluation, which is the main part of the paper I will draw on already existing documents and data that relate to the topic immediately. Another integral part of the consultation and discussion with experts from the ranks of both health and social services in providing care face barriers that currently has inadequate definition of the operation itself. The aim of the thesis is the analysis of documents and data relating to the regulation of hospice care in the Czech Republic, and their subsequent reflection of professionals who care about the issue of dying deal in their working lives. Keywords hospice care, legislation,...

This investigation examines the management concept of corporate vision in organisations. The study includes an investigation of the etymology and definitions of vision, and considers existing views of its application in management theory. Research was carried out into the foundation of independent voluntary hospices in Britain, using case studies, interviews, hospice histories, and a questionnaire survey. Information was obtained from 11 case studies and from questionnaires responses of 140 founders of seventy-two separate hospices. The principal finding is that corporate vision is a valid concept in organisations, and a definition of successful corporate vision is derived from the evidence obtained. The content of successful vision was shown to admit detailed analysis, and a feasibility test was devised which was then applied to a number of projects. The feasibility test showed a clear correlation between feasibility scoring and project time to completion. It is also shown that there are several common elements between hospice visions and the activity of a small number of successful visionary individuals both in business and charitable work. A relationship is demonstrated between leadership and corporate vision which shows that the leader is subordinate to the vision. Team structure and behaviour in hospice founding groups is shown to be at variance with those commonly found in business organisations. Hospice founders do not appear to use relative measures either for progress or success, and accept substantial changes to financial targets largely without concern. The only common factor related to failure of hospice projects is shown to be visions that were defective at the outset, in that they were not shared. The context of corporate vision is considered, and it is concluded that corporate vision as a concept is not necessarily applicable to all types of organisation.

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.