The purpose of this study was to explore spiritual and psychological issues as experienced by persons who know they have a terminal illness. An existentialphenomenological method was chosen to understand and articulate the structure and meaning underlying the experience of living with the knowledge that one has a terminal illness. The study had its genesis at the bedside(s) of people who were dying, yet living or living, yet dying. The experience of knowing one has a terminal illness serves to bring life and consciousness to those who may have otherwise continued to live unconsciously, to exist in a potentially weary and dormant state, oblivious to the fact that life was passing them by. The evidence of experience of knowing what it means to have a terminal illness exists in the words and expressions of the twenty-one people who graciously participated in this study as co-researchers. They have given testimony of their own experience to those of us who seek to understand that experience, to understand what it means to have a terminal illness, to confront one's end to life as it is known, to embrace life or to prepare to die. For some it was a single in-depth interview, for others there were numerous indepth interviews over the course of two to eleven months. Eight of the twenty-one coresearcher narratives were presented in this study. Each interview was recorded by audio and video tape, the former being used for transcription. Subsequently, transcriptions were reviewed for accuracy. As a measure of trustworthiness, themes were identified by the principal investigator and presented in the context of the narrative to the coresearchers who confirmed the data and validated the themes. Implications based on the themes identified in this study are presented under theory development, professional practice and future research. One of the strongest implications pertains to clinical practice in that the results could serve as the framework for a palliative care program which models palliative care as defined by the World Health Organization. The co-researchers were eager to tell their stories and to speak their truth with the hope that the care of persons with terminal illness would some day include care of people as whole persons—physical, psychological and spiritual.

The purpose of this study was to explore spiritual and psychological issues as experienced by persons who know they have a terminal illness. An existentialphenomenological method was chosen to understand and articulate the structure and meaning underlying the experience of living with the knowledge that one has a terminal illness. The study had its genesis at the bedside(s) of people who were dying, yet living or living, yet dying. The experience of knowing one has a terminal illness serves to bring life and consciousness to those who may have otherwise continued to live unconsciously, to exist in a potentially weary and dormant state, oblivious to the fact that life was passing them by. The evidence of experience of knowing what it means to have a terminal illness exists in the words and expressions of the twenty-one people who graciously participated in this study as co-researchers. They have given testimony of their own experience to those of us who seek to understand that experience, to understand what it means to have a terminal illness, to confront one's end to life as it is known, to embrace life or to prepare to die. For some it was a single in-depth interview, for others there were numerous indepth interviews over the course of two to eleven months. Eight of the twenty-one coresearcher narratives were presented in this study. Each interview was recorded by audio and video tape, the former being used for transcription. Subsequently, transcriptions were reviewed for accuracy. As a measure of trustworthiness, themes were identified by the principal investigator and presented in the context of the narrative to the coresearchers who confirmed the data and validated the themes. Implications based on the themes identified in this study are presented under theory development, professional practice and future research. One of the strongest implications pertains to clinical practice in that the results could serve as the framework for a palliative care program which models palliative care as defined by the World Health Organization. The co-researchers were eager to tell their stories and to speak their truth with the hope that the care of persons with terminal illness would some day include care of people as whole persons—physical, psychological and spiritual. / Graduate and Postdoctoral Studies / Graduate

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

M.A. / Primary malignant brain tumours (PMBTs) are devastating diagnoses that result in the swift deterioration of neurological functioning. The life expectancy of the patient from the time of diagnosis is between three and 12 months. This illness trajectory is characterised by loss of functional abilities such as walking, talking and writing; increasing cognitive impairments such as loss of executive functioning, speech difficulties and problems with comprehension; and the presence of neuropsychiatric symptoms such as depression, anxiety, apathy and aggression. Since treatment is primarily palliative rather than curative, family members and specifically spouses are required to care for PMBT patients in the home setting. The daily challenges of caring for a spouse with a PMBT have a significant impact on the emotional functioning of the caregiver. Although other studies have examined the experiences of various family members of PMBT patients, this research is the first phenomenological study, which investigates the emotional experiences in particular, with a focus on female spouses of PMBT patients. Other studies have also failed to describe the experience of caregivers throughout the entire course of the illness trajectory, that is, from pre-diagnostic symptoms, until the time of death. Therefore, this study attempts to enter the life-world of female spouses of PMBT patients in order to describe their emotional experiences from the time that prediagnostic symptoms manifested, throughout the disease trajectory, and until the death of the patient. A descriptive phenomenological method of enquiry was chosen to achieve this end. Three female spouses of PMBT patients were sourced and interviewed for the purposes of this study. Their husbands had passed away from a PMBT approximately three years prior. Open-ended interviews were conducted in order to elicit their emotional experiences during their husbands’ illness trajectory. The interviews were transcribed verbatim with the inclusion of non-verbal cues where relevant. This data was then analysed using a sequential phenomenological approach. Common themes were integrated to form the essential structure of a female spouse’s emotional experience of her husband’s PMBT illness. These themes were also discussed in conjunction with the literature review to support their validity. The themes that emerged fell within four distinct time periods. The period before diagnosis, at diagnosis, during the course of the illness and at the time of death. Themes that emerged during the research interview were found to be pertinent and were also discussed.

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The objective of this study was to describe the lived experience of caring for persons who had a peaceful death in the intensive care units in Thailand. A qualitative research design informed by hermeneutic phenomenology was used to analyze data. Participants were 10 intensive care nurses working at adult intensive care units in south Thailand. A snowball purposive sampling method was used to select the participants. Participant inclusion criteria were at least six months' critical care nursing experience, experience in caring for a person who had peaceful death, able to describe peaceful death, and willing to participate in this study. Participants who met the inclusion criteria were interviewed. Face-to-face individual verbal interviews were conducted in the Thai language. These interviews were audiotape recorded. Descriptions were transcribed and translated for data analysis. Van Manen's (1990) hermeneutic phenomenological approach was used to analyze and interpret the data. The findings of this study were presented in each of 4 categories of the lived world of temporality, of spatiality, of corporeality, and of relationality. The description of the lived experience of caring for persons who had a peaceful death in ICU was, "understanding the other through the valuing of experience and enhancing relations with others by recognizing time is short and is a priority." This study may contribute to nursing knowledge of the end-of-life care to enhance a peaceful death in intensive care units congruently with Thai culture and society. In addition, this study directs the translations of its knowledge into implications that will benefit in helping Thai nursing to move forward. The implications of this study in advance will benefit terminally ill persons and family members regarding receiving good quality end-of-life care. / by Waraporn Kongsuwan. / Thesis (Ph.D.)--Florida Atlantic University, 2009. / Includes bibliography. / Electronic reproduction. Boca Raton, Fla., 2009. Mode of access: World Wide Web.

South African palliative care volunteer caregivers play a crucial role in caring for people living with HIV and Aids, but frequently do not receive the support and respect that they deserve. The current study explored the psychosocial challenges and coping mechanisms of palliative care volunteer caregivers for people living with HIV and Aids. The researcher conducted in-depth interviews with 24 participants who also filled in questionnaires. The aim was to explore their experiences, their challenges, and coping mechanisms. Although these volunteer caregivers shared many positive experiences, they also faced multiple challenges in the workplace, their personal lives, financial challenges as well as psychological and emotional ones. Despite these challenges, the caregivers showed only moderate levels of stress on the stress scale. Recommendations for overcoming these challenges were provided to caregivers, organisations and the Department of Health / Psychology / M. Sc. (Psychology)

South African palliative care volunteer caregivers play a crucial role in caring for people living with HIV and Aids, but frequently do not receive the support and respect that they deserve. The current study explored the psychosocial challenges and coping mechanisms of palliative care volunteer caregivers for people living with HIV and Aids. The researcher conducted in-depth interviews with 24 participants who also filled in questionnaires. The aim was to explore their experiences, their challenges, and coping mechanisms. Although these volunteer caregivers shared many positive experiences, they also faced multiple challenges in the workplace, their personal lives, financial challenges as well as psychological and emotional ones. Despite these challenges, the caregivers showed only moderate levels of stress on the stress scale. Recommendations for overcoming these challenges were provided to caregivers, organisations and the Department of Health / Psychology / M. Sc. (Psychology)

Thesis submitted in fulfilment of the requirements for the degree Master of Technology: Design in the Faculty of Informatics and Design at the Cape Peninsula University of Technology, 2012 / Home-Based Health Care (HBHC) is the provision of health services and social assistance to individuals in their homes. It is an indispensable service to communities in need; presently in South Africa, these health care services are provided by local non-profit and non-governmental organizations. It is mainly targeted at poverty-stricken and under resourced communities and is an important aspect of healthcare in South Africa. A lot of communities in South Africa are still under-resourced and live in impoverished conditions. This is reflected in poor living standards characterized by unemployment, uneasy access to basic amenities, unequal distribution of wealth, poor medical facilities in rural communities, etc. The prevalence of the HIV/AIDS endemic has also worsened the situation. However, the South African government has constantly supported initiatives to enhance better healthcare in rural communities. This research presents a case study of caregivers working in Du Noon, an informal settlement in Western Cape, South Africa. Du Noon is overpopulated and home to lots of foreigners who have migrated in search of better living standards thus stretching an already over-burdened community. Naturally, this development supports poor health practices which encourage the spread of diseases within the community. Health facilities do not sufficiently cater for the ever-increasing healthcare demands and as such lots of people depend on NGOs such as SALT (Sharing Abundant Life Together) who through the help of caregivers and community workers have been providing for some of the healthcare needs of the Du Noon community since 2000. Findings reveal that although caregivers in this community have lots of stories to share about their work practices, they do not have a platform to share these stories. This research focuses on identifying processes involved in capturing these stories and moderating them into educative and entertaining visual contents for the purpose of sharing the stories within the community. Using qualitative research methods, empirical and field study provides the needed data as well as understanding of the multi-dynamism of this community. Data analysis is done through interpretive methods for the purpose of understanding the data collected and analysed during the research process. Finally, as a possible research contribution, the research concludes by examining how other technology can enhance the storytelling experience using interaction design methods that enables caregivers participate in the entire design process. Suggestions are also given as to direction for further research within the subject area.