Thesis (Ph. D.)--Rutgers University, 2007. / "Graduate Program in Planning and Public Policy." Includes bibliographical references (p. 221-231).

Dissertation submitted in fulfilment of the requirements for the Degree in Masters of Technology: Nursing, Durban University of Technology, 2012. / Palliative care research in South Africa is at an early stage and there is an increasing need to develop a body of evidence that is relevant to South African conditions. One of the biggest challenges that palliative care in Africa faces is the projected increase in the number of cancer patients in the developing world by 2050, many of whom will need palliative care. There is a concern at present about the integration of oncology and palliative care services in South Africa and whether or not cancer patients are able to access quality palliative care. Palliative care plays an important role in improving quality of life for people and family members affected by life-threatening illness. It pursues its goal by relieving pain and other distressing symptoms in cancer patients and giving psychosocial support to patients and their families. It should begin at diagnosis and continue throughout treatment, follow-up care, and at the end of life in addition to the cancer treatment which is given Aim of the study The aim of this study was to assess the integration of palliative care in the caring of cancer patients in the selected oncology clinics in the eThekwini district in KZN. Methodology A qualitative, explorative, descriptive and contextual research design was used to guide this study. The study was participative in nature and employed a focus group methodology. The participants in this study were professional nurses who were working at the selected sites in the public urban oncology clinics for more than three months. Two focus groups were conducted within one month of each other at selected oncology sites with participation from 16 oncology nurses. Findings Findings indicated that most participants understood palliative care as end of life care when a patient is beyond curative treatment and that it is often the doctor who determines eligibility. Participants also perceived palliative care in terms of different types of medical treatment. The findings indicated nurses only contacted hospices when the patient was at the last stage of their illness, were often not aware of all the hospices in the area, and acknowledged that communication between the oncology clinics and hospices was not good. Some nurses believed that palliative care is also provided in the oncology clinic and that it is not only the hospices that provide palliative care. Only one oncology nurse who participated in the study mentioned that she is trained in palliative care, but they all showed interest in becoming more knowledgeable in this area and improving relationships between oncology clinics and the palliative care team/hospices.

The emotional impact of serious illness in families is recognised. To enhance well-being in families living we must understand how distress is experienced within families; from this, evidenced-based systemic distress interventions can be derived. However, the success of systemic intervention programmes is reliant on whether families will seek help (or not) for distress. This PhD by publication explores emotional distress and help-seeking in families living with advanced cancer. Papers one and two used systematic review techniques. Paper one evidenced distress as a systemic construct and proposes the tiered model of distress to convey current understandings. Paper two offers the attaining normality model to convey why some people seek help for distress to achieve a new normality whereas some choose not to seek help to maintain normality. Together, these papers evidence gaps in systemic understandings of distress and help-seeking; from this an exploratory cross-sectional multiple case study of families was proposed. Papers three and four provided methodological underpinning to this research through the development of the DESCARTE model: The Design of Case Study Research in Healthcare (paper three) used in the case study design; paper four reflects on multi-perspective interviewing methods used. Distress and help-seeking are conceived as systemic relational phenomena, occurring within the family system and arising from relational interaction with healthcare. Distress is conveyed through four themes: interdependent distress, living in uncertainty, unnecessary distress and oscillatory distress; from this, possible systemic intervention designs are offered (paper five). Non-help-seeking for distress was the predominant response in families. The mutuality model of help-seeking is proposed to synthesise current understandings (paper six). Families describe how healthcare interactions cause unnecessary distress and shapes families’ help-seeking behaviours. Findings indicate significant gaps between the rhetoric of palliative care policy and families’ experience. To improve families’ wellbeing, relational care must be embedded in policy and practice.

Where is the Person in Symptom Cluster Research? The Experience of Symptom Clusters in Patients with Advanced Lung Cancer This thesis describes a three-year qualitative study which aimed to explore the experience of symptom clusters in patients with advanced lung cancer. The study employed a patient-focused approach utilising Interpretative Phenomenological Analysis (IPA) (Smith et al. 2009a). This methodology (IPA), informed by a contextual constructionist stance, was selected to explore the experience of symptom clusters, for its focus on the lived experience, the context and meanings which surround such experiences and its idiographic approach. Ten patients (a sample size which is the upper limit of the number of participants advocated for studies employing IPA (Smith et al. 2009b;Reid et al. 2005;Smith and Osborn 2004)) with advanced lung cancer took part in the study and data were collected using unstructured, in-depth interviews at two time points: on recruitment and three to five weeks later. Data were analysed using Interpretative Phenomenological Analysis, within the framework advocated by Smith and Osborn (2003). The study generated interesting and significant findings. The experience of symptom clusters in patients with advanced lung cancer was characterised by two super-ordinate themes: ‘The lived experience of symptom clusters and the role of context and meaning’ and ‘Symptom clusters and loss of sense of self’. The super-ordinate theme of ‘The lived experience of symptom clusters and the role of context and meaning’ in the first instance, illustrates that the participants in this study were experiencing symptom clusters and providing detail on the components, nature and patterning of the symptom clusters reported, particularly the way that one or two salient symptoms were commonly highlighted from all the other symptoms experienced. This super-ordinate theme also demonstrates the core role that context and meaning play in the lived experience of symptom clusters, with many of the participants in this study framing their experiences of symptom clusters within a fear of death, stigma and loss of sense of self. The second super-ordinate theme informing this thesis is ‘Symptom clusters and loss of sense of self’. This super-ordinate theme illustrates the impact of symptom clusters on the participants’ lives, and how this, in turn, impacted on their sense of self in a number of different ways. For some, their sense of self was compromised by the concurrent symptoms that they were experiencing, as they prevented them from undertaking roles and activities that they were accustomed to in the past. This super-ordinate theme also highlights the role of the body relative to the self, and describes how the participants’ sense of self was transiently lost during periods when they experienced symptom clusters of high severity. The findings presented also demonstrate the knock-on effect of loss of sense of self experienced, with the participants feeling like they were a burden due to their incapacitation, and at times hiding the multiple symptoms that they were experiencing, in a bid to protect their loved ones from their illness. In light of the loss of sense of self experienced, this super-ordinate theme also demonstrates how the participants employed various strategies in a bid to try and maintain a coherent and valued sense of self. The findings presented illustrate how the use of IPA facilitated the collection of data that provided an in-depth understanding of the complexity of the experience of symptom clusters in patients with advanced lung cancer, adding a unique contribution to this body of knowledge. The results of this study highlight the limitations of definitions that currently underpin the study of symptom clusters in patients with cancer and the current empirical base to date, particularly the way that they do not acknowledge the core role that context and meaning play in the lived experience of this phenomenon. This lack of recognition of these core elements of the patient experience of symptom clusters poses the risk of this body of research producing data that have limited relevance to the patient and therefore clinical practice. It is therefore proposed that the study of symptom clusters in patients with cancer needs to move away from the reductionist approach which currently dominates and to broaden its scope, to one that acknowledges the complexity of the experience of symptom clusters, the core role that context and meaning play in such experiences, and contributions that patient experience can make in advancing this important and emerging body of research.

This project addressed the continuing education needs of nursing staff and other health care professionals for delivering competent and compassionate palliative or end of life care. The scope of the project included, writing a grant application, training and certification by the end of life Nursing Education Consortium and implementing an education program for staff at the Loma Linda Veterans Affairs medical center.