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This project attempts to describe how a hospice and palliative care partnership program works. Through the assessment of one such program, the researcher sought to find out the essential components of the partnership including how the two partner organizations interact and work together. Data was collected using various methods: document review of organization documents such as newsletters, annual or quarterly reports, brochures and other available literature e.g. materials on organizations’ website and on social media; in-depth interviews with stakeholders of both organizations that included staff and board members; observation of staff working; and participant observation during organization events. The findings of the research shows that in order for organizations to have an effective partnership program in place, both partners need to have strong leadership in place, possess a willingness to learn from each other, maintain regular communication, and visit each other regularly. With this in place, several outcomes of the program are likely such as: increasing advocacy for hospice and palliative care, increasing visibility of the organizations both nationally and internationally, and provides an opportunity for organizations to network with other organizations in their locality in order to achieve partnership objectives. The study further reveals that global collaborations in the field of hospice and palliative care began with the advent of the international hospice movement. The assessment of this hospice partnership demonstrates how organizations can establish working relationships and the results likely to come out of such an initiative.

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

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.

Background: The use of telemedicine was gaining momentum. Although the strength of the therapeutic alliance (TA) correlated with treatment outcomes, there was no research exploring the skills, attitudes and behaviours that enhanced the TA during Skype consultations in palliative care. Aims: This study identified the skills, attitudes and behaviours that affected the TA between palliative care patients and health care professionals during Skype consultations and identified strategies that enhanced the TA. Study Design: Two cycles of action research engaged the participants in self-reflective inquiry and encouraged the identification of strategies that enhanced the TA and the Skype experience. Participants: Six health professionals and nine patients were recruited from a Hospice out patient service in one Health Authority in England. Data Collection: Data from the audio-recorded consultation were managed quantitatively and the TA was measured using the Working Alliance Inventory (S). Qualitative data were collected from participant interviews and focus groups attended by the professionals. Data Analysis: The analysis ran in parallel with the data collection, started after the first consultation and all sources of data were cross-referenced. Thematic analysis was used to sequentially code the qualitative data to help identify, examine and record patterns within the data set. Findings: The findings suggested that it was possible to establish and a positive therapeutic alliance between health professionals and palliative care patients when using Skype. There was a shift in perception for those health professionals who had reservations about their ability to establish a therapeutic alliance (TA) via a computer link. It was demonstrated that advanced communication skills were transferrable between face to face and video consultations. No additional communication skills training was needed to enable a strong TA when using Skype. Including some social talk, working with the patient’s as opposed to the professional’s agenda and actively offering solutions improved the Skype experience for the patients. The strategies that health professionals promoted to enhance the TA included using Skype with appropriately selected patients to complement the existing Service. Mandatory training in the effective use of Skype was recommended even for those health professionals who used Skype socially. Clarification to address the challenge of clinical governance was recommended. In keeping with an action research design the change impacted on both the health professionals own practice and the Organisation’s approach to telemedicine. The potential for using action research to engage nurses and doctors in critical self-reflective inquiry and to empower them to be change facilitators was demonstrated. Conclusion: Although a small sample size, this study identified strategies that enhanced the TA during Skype consultations. The findings were significant because they added to the current body of knowledge about using Skype to facilitate consultations within the palliative care population. Additionally, the findings may be transferable to different populations and healthcare contexts.

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.

The study sought to determine what palliative care services were provided to offenders at Medium B correctional center, which is located at Durban Management Area. It identified the perceptions of offender-patients about the services they received. The study also identified challenges that staff and offender-volunteer caregivers faced in rendering services within a correctional context in South Africa. The sample consisted of three stakeholders, namely, offender-patients who were terminally ill with AIDS at the prison hospital, staff and offender volunteer caregivers. The methods of data collection comprised of content analysis, semi-structured interviews with offender-patients and focus group discussions with staff and offender volunteer caregivers. The study revealed that efforts were made by the Department of Correctional Services to provide services to terminally ill AIDS patients. Legislation and policy frameworks were consistently being developed by the Department to meet the needs of patients and to keep abreast with international best practices. Some services were in accordance with the theoretical framework of palliative care. However, many challenges were experienced because of the contextual constraints in which the services were being rendered. Recommendations to improve the delivery of services were made by all participants in the study. The study concludes with the recommendations by the researcher and suggestions for future research. / Thesis (M.A.)-University of KwaZulu-Natal, Durban, 2006.

This study opens in a critical paradigm and explores the previously unheard experiences of caregivers who have been trained in and who practice palliative care in a context of rural African, isolated, profoundly impoverished homes. Instead of a healthcare focus, the study used curriculum theory to provide a fresh look at and to better understand palliative care in context. Curriculum theory distinguishes a curriculum as preactive (espoused) or interactive (enacted), and preactive and interactive curricula for palliative care were compared and interrogated as exemplarity of a circumstance when a curriculum is transported into a context other than that where it originated. The study offers several contributions to health sciences, including a link between curriculum theory and palliative care, and provides deep insights into the experiences of those who practice palliative care with limited guidance and support from senior healthcare professionals. In the 1970s palliative care developed in a hospital context in the United Kingdom as a response to ideas which included that society is death-denying and that medicine and associated sophisticated technology act to render patients passive spectators in care decisions. An aim is to coordinate and plan care which includes a focus on empowering patients and their families by giving them choices around living with a life-shortening illness and dying as comfortably and peacefully as possible. A common theme is an intention to relieve or prevent suffering, and palliative care services have developed throughout the world. Palliative care is delivered by healthcare professionals acting within a multidisciplinary team who provide care at various sites including hospitals, homes and hospices. Palliative care has been introduced to post-apartheid South Africa relatively recently, and the preactive palliative care curriculum is largely based on notions of palliative care which developed in a European context while the interactive curriculum is enacted in rural African homes. Ideas around palliative care may not have a universal or rigid quality, but may represent an agreement among people in a certain context and the unexplored introduction of such ideas into another context may potentially give rise to a hegemonic flow of ideas. Systemic challenges around healthcare in Africa may preclude a patient from having choices in their healthcare. The agency of patients may be undermined by their material living conditions. The study site was rural KwaZulu-Natal in South Africa, where the incidence and prevalence of Human Immunodeficiency Virus are the highest in the world. Study questions revolved around a curriculum as a source of knowledge for practice and experiences of a context and practice. Data sources were twofold: firstly a palliative care curriculum text was scrutinized and analyzed in terms of who is cared for, place of care, work of caregivers and palliative care; and secondly data from participants (nurses and home-based care workers) were analyzed to produce deep insights into their experiences of practising in context. Data were generated using a visual technique of “photo-elicitation”, where participants were invited to discuss photographs they took to convey their experiences, and analyzed inductively using naturally emerging themes. Curriculum data indicated that patients should be offered palliative care when there is awareness that they face a life-limiting illness, and a focus was on home care. The espoused curriculum foregrounded physical care and placed less emphasis on aspects such as spiritual, cultural or psychosocial care; the curriculum was delivered at a site distant to caregivers’ practice. In South Africa the legacy of apartheid lingers, and data from caregivers revealed that physical conditions are harsh in that patients are starving, housed in makeshift shelters and face profound social challenges. Spiritual care and cultural care were highly valued, as patients map onto traditional beliefs and cultural practices Data revealed that caregivers were sometimes unsure, angry, felt powerless and could be placed in physical and emotional danger. Patients and their families valued some aspects of palliative care, such as preparing for death and bereavement support, but found challenges in understanding other aspects such as why caregivers did not appear to make attempts to cure disease. Juxtaposing study findings with published literature revealed that diametric worldviews of teachers and learners have an impact on curriculum delivery. The home could be a beneficial place for care but could also create challenges. The study theorizes beyond a palliative care curriculum, and in concluding the study I found that I must move from a critical to a post-structural paradigm. A critical paradigm seeks data around oppression and marginalization so that transformation may be enacted, and data indicated that aspects of the practice of palliative care were both empowering and disempowering for caregivers; they were empowered by being able to practice in an independent, autonomous way, but were also disempowered since the curriculum did not adequately consider context. The study unearthed no universal truth for a curriculum for palliative care; an African curriculum should take cognizance of an African context. I use the study findings to put forward a thesis around certainty in curriculum, and the study prompts understanding of certain curriculum in contexts that are uncertain. Key words: Certainty, curriculum, palliative care practice, context, rural homes / Thesis (Ph.D.)-University of KwaZulu-Natal, Edgewood, 2012.

The goal of the dissertation research was to understand and conceptualize the process of developing palliative care in rural communities from the perspective of health care providers. Canadian research about rural palliative care is timely and important. Since 1995, two Senate committees and two national reviews of the health care system have called for increased access to palliative care throughout Canada. Several provinces have subsequently launched strategies aimed at improving access to palliative or end-of-life care; however practical models for developing rural programs are lacking. This research contributes to improving access to palliative care for people dying in rural Canada by generating practical and theoretical knowledge about developing local programs in rural communities. Data were transcripts of nine group interviews of interdisciplinary providers involved in providing rural palliative care in six different provinces and territories of Canada. The outcome of the research was an original model called Developing Rural Palliative Care that conceptualized four sequential and incremental phases of development: antecedent community conditions, a catalyst, creating the team and growing the program. The model articulates the major processes and activities within each phase. Throughout the developmental process, the nature of the rural community both supported the work of providers and created their challenges. Working together and being community-focused emerged as the overarching keys to success. Most of the palliative care work utilized existing local resources. Throughout the analysis, the research used ideas of community capacity development as sensitizing concepts. The research concluded that developing palliative care can be understood and represented as a process of community capacity development, offering an innovative way of thinking about developing health services that can guide the process of implementing palliative care services. Ultimately, the research findings suggest that access to palliative care can be improved in rural communities by creating local palliative care teams and supporting them to develop services.

One of the primary goals of palliative care is management of symptoms such as pain. Palliative clinicians experience difficulty in severe pain management (SPM) and therefore there is a need for enhanced approaches to SPM. This dissertation attempts to fulfill that need by applying informatics based approaches to SPM. The dissertation was done in three phases: conceptualization, construction and testing. Conceptualization developed a practice support framework and set of informatics based tools for palliative SPM, construction implemented the informatics based tools as a computer based practice support tool and testing performed usability testing on the computer based tool. The results show that qualitative methods can be used to capture and understand the practice support needs for palliative SPM, which include a number of processes and information to support SPM. The practice support needs were then used to develop a set of informatics based solutions consisting of an ontology, a set of problem solving methods and an empirically derived vocabulary for palliative SPM. The informatics based solutions then became the design requirements for a computer based tool that provided comprehensive practice support for palliative SPM. The testing phase of the research used usability testing to test the functionality of the computer based tool. Usability testing was favorable to the question of how well does the computer based tool provide practice support for palliative SPM. This dissertation makes contributions to the fields of health informatics and palliative care. For health informatics it illustrates how to apply qualitative research methods to capture and organize knowledge around a complex healthcare domain area. The dissertation also illustrates how to use that knowledge to extend existing work on ontology based information system (IS) design by using that knowledge to develop a set of empirically derived informatics based solutions and then implementing the solutions as a computer based tool. The dissertation makes a contribution to palliative SPM by identifying practice support needs for SPM including linkages between research and practice, promotion of a common SPM vocabulary, and an approach to information handling to help manage the complexity of SPM.