With advancements in medical technology, the mechanics of dying and death has changed significantly. Centuries ago, people mostly died of infectious diseases. From the time they were diagnosed, to the time of their death did not take long. Today, public health has improved remarkably. We have a better control over infectious diseases, but we have to deal with cancer and other chronic illnesses. The long period of treatment for such illnesses makes us spend a lot of our time in healthcare facilities such as hospitals, hospices, and care homes. Unfortunately, in many cases, these facilities do not pay much attention to emotional and spiritual needs of their patients and are mostly designed around their own institutional and technological needs. In that regard, these buildings become pretty awful places with no natural light and long corridors. Today, due to the nature of chronic diseases that we mostly deal with, hospice care facilities are becoming more popular. The idea of a hospice is to focus on quality of the place for families and patients who have already spent a lot of their time in a hospital setting. The goal is provide humane care for patients who do not have much time left, to make sure that they live the remainder of their lives as comfortably and as fully as possible. It is important to remember that when such facilities are designed for children, we need to pay extra attention to their unique needs. It is important to provide opportunities for children with terminal illnesses to continue to learn and grow. This thesis is exploration of an architectural setting in which children with a terminal prognosis would spend the last few weeks of their lives. Located in Old Town Alexandria, Virginia, this project takes advantage of the existing nature of the site to create an oasis for families who have gone through an exhausting battle with an untreatable disease. The goal is to shift the focus from curing to healing and to create a nurturing place that helps to bring normalcy back to the lives of patients and their families. / Master of Architecture

ABSTRACT Centered on interviews with 13 hospice care professionals from two large hospice organizations in Southern California, this thesis project examines the challenges that arise in hospice work. Hospice’s delivery of end-of-life care is becoming even more significant as the population lives longer. According to the National Institute on Aging (2014), the face of aging in the United States is changing dramatically. This examination discloses some of the challenges that hospice workers face in a continuously changing health care system, while trying to provide extraordinary service to the terminally ill. Hospice regards dying as a conventional progression, and neither hastens nor defers death. Hospice health care professions are essential in providing care. This thesis uses a qualitative method and examined beliefs about hospice care among hospice professionals using compassion fatigue also known as burnout, job satisfaction and religion and spirituality as a foundation. The findings of this thesis found that compassion fatigue is a real phenomenon and has been experienced by nine or 69% of participants, and of the 69%, six or 67% that experienced compassion fatigue are paid employees who work a forty hour work week. The remaining three participants or 33% who have experienced compassion fatigue are volunteers who commit to volunteering more than two days a week. Frequent contact with individuals who are terminally ill increases the likelihood of compassion fatigue. The iv findings also indicate that 100% of participants experienced job satisfaction while working in patient care, despite the length of time working in the field of hospice. Job satisfaction is contributed to the belief that participants have regarding hospice care, and that belief is the work they do in hospice is a "calling" and they all consider working with the terminally ill as a privilege. Lastly, the findings indicate that religion and spirituality play a major role in how participants deal with the ongoing death of patients. Ninety two percent or 12 out of the 13 participants claim a belief in a higher power, and they use this belief to cope with the suffering and death of patients. They also use religion and spirituality as a way to decrease stress and to have a piece of mind that when a patient dies they are in a much better place and relieved of their suffering. Taken as a whole, this study concentrated on hospice professionals and the correlation of compassion fatigue, job satisfaction and religion and spiritually which can have a pronounced impact on the overall quality of service delivery. The purpose of this study was to bring mindfulness to the hospice social professional. What has been provided in this study is empirical support for advanced research in the field of hospice care. Additional research is necessary in order to understand more about the beliefs of hospice care among helping professionals and the motivations they use in order to deliver optimal service to the terminally ill.

The United States of America is a country composed of various ethnicities. This country is considered to be a multi-cultural society. There are various cultural traditions values, norms and superstitious practices within each ethnic group. Attitudes toward end of life care are complex and vary differently across each ethnic group. This study explored factors that explained African Americans' disproportionate use of hospice. Access to hospice care was address, experience with hospice was explored, and recommendations were provided. This study conducted non-experimental research. The design of this exploratory study was quantitative in nature. A survey approach was utilized to collect data that was statistically analyzed. The important concept was African American disproportionate use of hospice. The variable willingness to use was employed to try to explain African Americans' disproportionate use of hospice. The independent variables African Americans who mistrust formal healthcare providers and knowledge about hospice services were operationalized using multiple indicators. The independent variable experience with hospice services did not use a scale. The research findings supported all three study hypotheses. This research results recommend that an important focus of the future be to counsel persons on the availability of hospice as an option for end-of-life care. Well-structured programs of training in cultural awareness and cultural competence throughout the ranks of the health care system must be instituted. Such an effort will pay dividends in reducing cultural mistrust and push closer to eliminating health disparities between minority groups and the rest of society.

Guided by an explanatory matrix of family conflict at the end-of-life, the goals of this mixed methods study were to further generate theory regarding family conflict and to provide insights into its correlates and predictors. Sources of data analyzed include quantitative survey responses from 161 hospice family caregivers, 15 in-depth interviews with hospice family caregivers, and 10 interdisciplinary focus groups with hospice professionals. An explanatory matrix is presented that portrays family conflict at the end-of-life as a complex phenomenon influenced by salient contextual variables, conditions, and factors that may contribute to a number of negative outcomes for patients, family members, and professionals. The matrix also provides a beginning understanding of approaches utilized by hospice professionals in their work with families experiencing conflict. Significant bivariate correlations were found between family conflict and family context variables (i.e. prior conflict, length of caregiving, caregiver gender, caregiver age, presence of children in the caregiver’s home, advance planning discussions within family), conditions (i.e. family coming out of the woodwork and patient care needs) and contributing factors (i.e. communication constraints and family asserting control). In the multivariate model, significant predictors of family conflict included prior conflict, caregiver gender, caregiver age, advance planning discussions within family, family coming out of the woodwork, communication constraints, and family asserting control; the model explained 60% of the variance in family conflict. Implications for routine assessment, further examination of interventions to prevent and address conflict, and future research are highlighted. / text

The older adult population is rapidly growing along with the use and continued need for hospice care services. Due to these circumstances there is on ongoing demand for experienced and knowledgeable social workers to meet the unique needs of this population. Research in this study indicates that social workers currently working in the hospice field do not feel adequately prepared to work with dying and bereaved patients. Furthermore, research shows a lack of education within social programs and social work textbooks regarding the subject of end of life care. The purpose of this study was to gain a better understanding of social work student’ perceptions of hospice and determine if there were any differences depending on their sociodemographics. The sample was comprised of students enrolled in the undergraduate and graduate level social work program at California State University San Bernardino. This project was conducted using a quantitative design and data was collected through the use of an online questionnaire. There were no significant results of this study, however the study did find that while social work students do feel inadequately prepared to handle the unique challenges of hospice, they are knowledgeable in the field of hospice and have a desire to learn more about hospice. Recommendations for future research is for social worker programs to implement more education related to older adults and their unique needs. It is also recommended that social work students seek further education regarding hospice care and social worker development in order to adequately be prepared to work with these individuals and have the tools necessary to meet their needs.

Through a post-colonial narrative turn, scholars created space for alternative illness narratives to be performed; narratives that reflected the fragmented and unpredictable ways of ailing bodies, and allowed for multiple and diverse identities to be constructed. However, even with this post-colonial turn, illness narratives in U.S. culture often depict situations in which individuals overcome their illnesses, and death is somehow avoided (Langellier & Peterson, 2004), which present potential constraints for what narratives individuals at the end-of-life (EOL) are able to tell and what identities they are able to construct. Using post-colonial narrative theory (Frank, 1995) as a framework, I engaged in a thematic narrative analysis of 16 hospice patient narratives, to understand whether narratives and identity constructions are constrained for dying individuals as they attempt to make sense of the end-of-life. Patients constructed the five identities of the experienced individual, the believer, the ailing individual, the good dier, and the individual who is still living, through several themes. Ideals of both post-colonialism and modernism were present in identity constructions, suggesting some acceptance of alternative narratives for individuals at the EOL. However, notably a new type of colonization emerged as patients' identity constructions and themes reflected elements of ars moriendi or the good death (Faust, 2008). Specifically, it appears that end-of-life narratives must reflect that the individual nearing the end-of-life is doing so in a culturally acceptable way which involves acceptance, sacrificial or selfless qualities, dying gladly, and dying not alone. This nuanced type of colonization suggests that specific illness situations might present unique narrative colonization. I end by offering practical implications for health care providers and family. Specifically, these findings might inform traditional practitioners and encourage them to broaden the clinical definition of the good death, with an understanding that elements such as esteem and emotional support or empowerment might be paramount for some patients' good deaths. Additionally, these findings offer awareness to family members regarding cultural expectations of the good death, so that they might consider whether they are adding pressure to their loved ones to achieve such a death.

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Purpose/Objectives: To explore the experience and processes of hope for older women who are bereaved palliative caregivers and to develop a substantive theory of their hope experience.<p> Design/Research Approach: Qualitative, constructivist grounded theory <p> Setting: Participants homes in a small Canadian city<p> Sample/Participants: Thirty interviews with thirteen women, ages 60-79, within the first year of bereavement after providing care to a spouse with terminal cancer, also twelve hope diaries<p> Methods/Methodologic Approach: Open-ended, in-depth audio-taped interviews, hope diaries, transcribed verbatim and analyzed using constant comparative analysis<p> Main Research Variables: Participants descriptions of their experience of hope Findings: Participants defined hope as a gradual process of regaining inner strength and building self-confidence, to make sense of their totally changed situations. They were learning to stay positive, and move ahead with their lives. Hope was very important to the participants. The participants main concern was losing hope which they dealt with by searching for new hope through finding balance, finding new perspectives, and finding new meaning and purpose. The theoretical model resembles a spiral and takes place within a social context.<p> Conclusions: Older women who are bereaved after caregiving for a palliative cancer patient are at risk for losing hope and require support as they search for new hope and move through the complex processes of bereavement. <p> Implications for Nursing/Interpretation: Health care professionals can provide appropriate and effective care that facilitates positive and healthy bereavement outcomes by monitoring bereaved palliative caregivers at risk for losing hope and supporting them as they search for new hope to find their own way through bereavement.

The population demographics of the greater Toronto Area are rapidly changing, with visible minorities comprising 43% of the GTA, and 10% of the total adult population of Canada. It is incumbent upon the health care sector to accommodate these changes in a culturally competent manner. Health care and culture intersect in the most delicate of ways during the last stages of life. The health care system must ensure that minorities have an equal access to end-of-life health care services and that their individual cultural beliefs and values are respected by culturally competent health care providers. Hence, this thesis examines the current state of cultural competence in hospice and palliative care in the Greater Toronto Area. This study will show the strengths and limitations of the current hospice care in terms of providing culturally competent care. To explore this topic in greater detail, my research is guided by the following questions: 1) What is the current state of culturally competent care in a hospice setting? 2) What are the challenges to providing culturally competent care in a hospice in the Greater Toronto Area? 3) What are some possible strategies for increasing competency within a hospice setting? To explore my research questions fully, I provide a critical analysis of six cultural competency theories, while integrating a social determinants of health framework, focusing on the theory of social exclusion and minority health care. This case study analysis is enhanced by the 14 in-depth interviews of hospice volunteer participants and 1 administrator. There are six major findings in this research. First, volunteer participants encountered cultural clashes when their levels of cultural competency were weak. Second, volunteer participants revealed there was a lack of adequate cultural competency training with the hospice. Third, volunteer participants gave abundant suggestions for improving cultural competency training. Fourth, volunteer participants perceived the hospice to be unsupportive of some of their needs. Fifth, the lack of ethnic, cultural and linguistic diversity of the hospice volunteer participants was noted. Last, the lack of religiosity amongst the volunteer participants was surprising. This research is significant for its Canadian hospice volunteer focus and the findings will be beneficial in practice for patients, their families, volunteers, and other health care providers, by providing the knowledge and tools necessary to enhance their level of cultural competency.