Thesis (MTech degree in Nursing)--Tshwane University of Technology, 2011. / Quality of life has been well researched, especially with respect to cancer sufferers, but not necessarily from the perspective of the patient and also not in third-world, resource-poor countries. In this study quality of life was researched from the perspective of the palliative patient living in Soshanguve, a township 45 kilometres from Pretoria in South Africa. The patients were managed at the palliative care nursing community of practice in Soshanguve and suffered from cancer, HIV and AIDS, pulmonary tuberculosis, cerebrovascular incidents and chronic pain due to arthritis.

Progressive Neuromuscular Diseases (PNDs) are relentless, debilitating, incurable diseases that cause nerves and muscles to atrophy. A large portion of the population who experience PNDs are adolescents. These adolescents progressively lose physical abilities and increasingly rely on caregivers at a time in their life when, paradoxically, normative adolescent development prescribes a move towards independence and autonomy. There is little research examining this experience from the adolescents’ perspectives. The purpose of this interpretive phenomenology study was to understand the experience of adolescents with PNDs when making decisions in relation to their health. Data collection consisted of 10 semi-structured interviews with 5 adolescents, 16-19 years of age, who were living with a PND (two interviews with each of the 5 participants). These interviews lasted an average of 60 minutes. Data were analysed using interpretive strategies, including the development of themes using exemplars, and paradigm cases. Findings revealed that the adolescents separated health decisions into two distinct categories, Big and Small, based upon level of perceived risk and physician involvement. Big referred to high-risk decisions, included physicians, and involved a medical/surgical procedure or intervention. Small referred to lower risk decisions, did not include physicians, and involved personal care. An expert emerged with each category of decision. In Big Decisions, the physician was perceived as the expert who made recommendations, provided information, and introduced the decision. In Small Decisions, the adolescent perceived himself as the expert. With Big Decisions, the physician expertise was typically respected, and the recommendations were followed. With Small Decisions, parents typically respected adolescent expertise. However, the adolescents commonly experienced not having their expertise respected by health professionals. In the context of Big and Small decisions, the theme Joint Ownership captured the sense that with the progressive loss of abilities and resulting dependence, the physical disability and illness were not experienced solely by the adolescent but by the adolescent and his parent(s). As the parent(s) and adolescent shared these experiences, the decisions, ownership of the physical body, and the responsibility for the care of the body also became shared. The findings suggest that health care professionals need to include the adolescents in the Small Decisions, and also acknowledge that adolescents may desire parental involvement in Big Decisions.

This dissertation explores the question “how does a person who is a cancer patient finds their way to being a dying person?” Through the lens of modernism (Giddens), discourse analysis (Foucault), and philosophical hermeneutics (Gadamer) the author examines how the institution of cancer control is constituted, and how the cancer patient is co-constructed by this system and people entering into it as people needing cancer treatment. Language is explored to uncover meanings and discourses which help shape this experience and self-narrative of the cancer patients who face leaving the cancer control system and do or do not find their way to palliative care systems. From this perspective the more solitary and less shaped experience of ‘unbecoming a cancer patient’ is explored for those cancer patients whose treatment has failed. The liminal space between the expert systems of cancer control and palliative care is what is revealed and problematized. What is explored is what this liminal space between these two systems is, and how people who find or lose themselves in this space at this time might be met, without succumbing to the modernist temptation to create yet another expert system to manage what is explored. What is at stake for people at this time is their own self-narrative going on, and it was found for some people in a liminal space this self-narrative faltered. It is revealed that nurses are best positioned epistemologically to support people at this time, and the question of where this support ought to happen is explored in terms of the ideological fit within current health system alignments. This work adds an important theoretical rendering of the term liminality and has important implications for person centred nursing care and health system redesign. / Graduate

<p>The aim of this explorative study was to understand the experiences and challenges of primary caregivers providing palliative care to women with advanced breast cancer. This study was conducted within a qualitative research design framework underpinned by phenomenology. The significance of this study was to contribute to the knowledge that would help care professionals understand the experiences and challenges that primary caregivers face whilst providing palliative care to women with advanced breast cancer.</p>

A constructivist research paradigm informed an investigation of the relevance of music therapy (MT) in a cancer hospital, that is, (a) what did MT do(?) and (b) did it help? Over three months, criterion sampling was used to elicit interpretations from five sources: 128 patients who participated in MT, 27 patients who overheard or witnessed MT, 41 visitors, 62 staff, and the researcher who was also the MT clinician in this study. The researcher’s interpretations were recorded in a reflexive clinical journal and the respondents’ interpretations were written on anonymous open-ended questionnaires. The MT program was predominantly characterised by the use of patient and visitor selected live music. Thematic analysis, informed by grounded theory (Strauss & Corbin, 1990), and content analyses were performed on the five groups of data with the support of ATLAS/ti (Muhr, 1997) software. Many patients and visitors who experienced MT reported that MT elicited a range of affective responses and altered imaginings. Responses were especially characterised by memories being revisited but also characterised by the respondents’ “transportation” to new spaces or thoughts and physical sensations. Some staff and patients who overheard MT also reported similar experiences. The researcher, and often staff and visitors, also perceived that MT elicited affective and imagined sensations in patients.

Thesis (Ph.D.) - University of Glasgow, 2004. / Ph.D thesis submitted to the Departments of Public Health and Palliative Medicine, Faculty of Medicine, University of Glasgow, 2004. Includes bibliographical references (p. 272-293). Print version also available. Mode of access : World Wide Web. System requirements : Adobe Acrobat reader required to view PDF document.

Progressive Neuromuscular Diseases (PNDs) are relentless, debilitating, incurable diseases that cause nerves and muscles to atrophy. A large portion of the population who experience PNDs are adolescents. These adolescents progressively lose physical abilities and increasingly rely on caregivers at a time in their life when, paradoxically, normative adolescent development prescribes a move towards independence and autonomy. There is little research examining this experience from the adolescents’ perspectives. The purpose of this interpretive phenomenology study was to understand the experience of adolescents with PNDs when making decisions in relation to their health. Data collection consisted of 10 semi-structured interviews with 5 adolescents, 16-19 years of age, who were living with a PND (two interviews with each of the 5 participants). These interviews lasted an average of 60 minutes. Data were analysed using interpretive strategies, including the development of themes using exemplars, and paradigm cases. Findings revealed that the adolescents separated health decisions into two distinct categories, Big and Small, based upon level of perceived risk and physician involvement. Big referred to high-risk decisions, included physicians, and involved a medical/surgical procedure or intervention. Small referred to lower risk decisions, did not include physicians, and involved personal care. An expert emerged with each category of decision. In Big Decisions, the physician was perceived as the expert who made recommendations, provided information, and introduced the decision. In Small Decisions, the adolescent perceived himself as the expert. With Big Decisions, the physician expertise was typically respected, and the recommendations were followed. With Small Decisions, parents typically respected adolescent expertise. However, the adolescents commonly experienced not having their expertise respected by health professionals. In the context of Big and Small decisions, the theme Joint Ownership captured the sense that with the progressive loss of abilities and resulting dependence, the physical disability and illness were not experienced solely by the adolescent but by the adolescent and his parent(s). As the parent(s) and adolescent shared these experiences, the decisions, ownership of the physical body, and the responsibility for the care of the body also became shared. The findings suggest that health care professionals need to include the adolescents in the Small Decisions, and also acknowledge that adolescents may desire parental involvement in Big Decisions. / Applied Science, Faculty of / Nursing, School of / Graduate

Objective: The Patient Self-Determination Act of 1990 (PSDA) protects a patient’s right to predetermine the level of life-supporting care they are willing to receive (U.S. Department of Health and Human Services, 1993). In Arizona, the advance directive (AD) complies with the PSDA and is used to guide care in the event of cardiopulmonary failure. The AD may indicate “do not resuscitate” (DNR), which prohibits cardiopulmonary resuscitation in the event of cardiac arrest. In the institution used for this project, a palliative care team assists with identifying goals of care and helps guide interventions consistent with the AD. The purpose of this Doctor of Nursing Practice (DNP) project was to complete a retrospective chart review and identify patients admitted to the medical intensive care unit (ICU) with a DNR as indicated by a copy of the AD in the electronic health record (EHR) and determine if they received a palliative care consultation. This information could support a quality improvement project led by the DNP-prepared AGACNP focused on ensuring a palliative care consultation within 48 hours of admission for patients admitted to the ICU with a DNR. Methods: A search of the EHR identified patients admitted to the medical ICU over a 12-month period. The EHR of patients admitted with a DNR were reviewed to determine if they received a palliative care consultation during the ICU stay and the patient’s final disposition. Findings: A total of 38 patients had an AD indicating DNR status on admission to the medical ICU. Of those patients, 26 (68.4%) received a palliative care consultation. Twelve patients (31.6%) with a DNR status on admission did not receive a palliative care consultation. Additionally, five patients with a DNR (13.16%) died in the ICU without receiving a palliative care consultation. Conclusion: Twelve patients with an AD indicating a DNR did not receive a palliative care consultation, and five of those patients died in the ICU. The findings from this project support a quality improvement project to implement palliative care consults to review goals of care for patients with a pre-existing AD indicating a DNR code status.

Magister Psychologiae - MPsych / The aim of this explorative study was to understand the experiences and challenges of primary caregivers providing palliative care to women with advanced breast cancer. This study was conducted within a qualitative research design framework underpinned by phenomenology. The significance of this study was to contribute to the knowledge that would help care professionals understand the experiences and challenges that primary caregivers face whilst providing palliative care to women with advanced breast cancer. / South Africa

Magister Scientiae (Physiotherapy) - MSc(Physio) / Palliative care is a vague and often confusing term used to describe a type of treatment model for chronic and life-threatening illnesses. WHO describes palliative care as an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness by: early identification, impeccable assessment, and treatment of pain, physical, psychosocial and spiritual. The aim of this study is to explore the perceptions of physiotherapists on palliative care in order to contribute to the understanding of the role of physiotherapists to the care of stroke patient in Zambia. The objectives of this study are to explore physiotherapists’ knowledge on palliative care, their perceptions on management of palliative care as well as explore its application in the rehabilitation of stroke patients; and lastly to make recommendations on guidelines based on the outcomes of this study. Method: an exploratory study, using qualitative design was used. Data collection techniques were in-depth individual interviews and FGDs that consisted of purposively sampling of physiotherapists working; at four selected hospitals and a rehabilitation centre in Lusaka. Audio recording from the interviews was transcribed verbatim for each session by an independent person. The study employed thematic content analysis for data analysis. The data was classified systematically by means of coding to identify key factors or issues such as concepts, categories, themes and the relationship between them. Results indicated that all participants in the current study perceived palliative care as a medical care for the chronic and terminal ill patient in whom stroke patient and family will benefit if it is applied in the early stages of the disease trajectory; as well as it does improve the patient and family quality of life. Furthermore they emphasized on multidisciplinary team and holistic approaches in order to achieve all its tenets. Conclusion: the study had succeeded in exploring the physiotherapists’ perceptions on palliative care and contributed to the understanding of the role of physiotherapy to the care of stroke patients in general.