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.

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 purpose of this study was to develop an inductive theory describing the process that hospice nurses use to identify and respond to their patients' suffering. Additionally, the study sought to describe the coping strategies that hospice nurses used when working with patients they considered to be suffering. By examining nurses' responses to suffering, this study is the first step in developing effective interventions to alleviate patient suffering and mitigate its consequences on the nurses caring for those patients. Additionally, by knowing the different strategies that nurses use to cope when working with suffering patients, nurse administrators could institute educational programs, build supportive environments, and develop policies to support nurses as they deal with these difficult clinical situations. This is especially important in a hospice environment where the registered nurse is the focal point for ensuring ongoing patient assessment and implementation of the interdisciplinary plan of care by the various team members. Charmaz (2006) description of grounded theory methodology guided the study design and analysis. Participants identified and responded to their patients' suffering within the context of the nurse-patient relationship. Phases of the relationship included: preparation, establishment, cultivation, maintenance, and letting go. The participants gained insight into the psychosocial and existential aspects of the patient's psyches by cultivating the nurse-patient relationship. Within this relational context, the participants used a four-phase process: observation, issue assessment, suffering, and intervention to respond to their patient's suffering. In addition to pain and other signs of physical suffering, the participants identified other aspects of suffering: role losses, the patient's fear of the impending death, the patient's aloneness, and the patient's feelings of guilt or regret. Interestingly, suffering also was considered a family affair and could involve the loss of self-identity. While the participants recognized the importance of self-care, often they had difficulty naming strategies used to respond and cope with their patients' suffering. Clinical supervision and emotional support through mentoring and practical guidance need to be further developed to help nurses cope with the complexity of feelings that arise when caring for dying people. / text

This study examines the misconception issues that influence the underutilization of hospice services by African Americans. This descriptive study was based on the premise that there is no relationship between African Americans’ knowledge of hospice and their decision to utilize hospice. The results revealed that African Americans who completed the survey indicated they understand what hospice is; however the answers provided in the survey were not congruent. The conclusions drawn from the findings suggest that African Americans have misconceptions about hospice, and not a true understanding of what hospice is or how to use the service.

This dissertation analyzes the everyday work experiences of hospice, a type of end-of-life care. The following chapters integrate micro-sociological perspectives with meso- and macro- level explanations of organizational behavior to account for workers' performances of emotional labor, care-related identities, constraints on their daily work, and ultimately hospice workers' strong commitment to their jobs and the hospice philosophy. Using a mixed methodological approach, I argue that hospice workers engage in emotional labor, but that instead of feeling dissonance or alienation, hospice workers develop a positive identity around their work. Their identities and work experiences are still constrained by institutional forces, however. Hospice workers' experiences highlight two tensions in the administration of caring labor: keeping commitment during times of organizational change and balancing the needs of the self with the needs of the care recipient. The main contributions of this work include new understandings of the relationships between identity, emotions, and work; a novel combination of theories that better explain care workers' behaviors and constraints on their action; and, a refined approach to thinking about emotional labor.

Genom hela livet har nutrition en stor betydelse för människan. I palliativ vård prioriteras inte alltid nutrition trots att det är viktigt för patienten. Sjuksköterskans roll är att stötta patienten och gynna nutritionen för att på så sätt främja välbefinnande och lindra lidande. Syftet med studien var att belysa nutritionen i ett palliativt skede. Studien är en litteraturöversikt där 13 artiklar användes, artiklarna söktes i databaserna PubMed och Cinahl. Resultatet delades in i tre teman: en symbol för livet, ett etiskt dilemma. Nutritionen hos de palliativa patienterna har flera fördelar, den kan förlänga livslängden, förbygga undernäring, ge patienten komfort och lugna oroliga närstående. Nutritionsfrågan kan lätt bli ett etiskt dilemma då patienten, närstående och vårdpersonal har olika syn på hur behandling bör ges, olika kunskapsgrad ligger ofta till grund för oenigheten. Kommunikationen är en viktig faktor för att alla berörda ska känna sig delaktiga. Trots att nutritionsbehandlingen har få medicinska effekter är det en viktig del för patienten och närstående, nutritionen kan förebygga känslor av övergivenhet, hopplöshet och bristande förtroende hos både patient och närstående. Sjuksköterskan behöver god kunskap och hög kompetens för att kunna vara mer delaktig i beslut som tas om patientens nutrition. Det krävs mer forskning inom området palliativ vård som inriktas mot nutrition för att kunna tillgodose krav från patienter och närstående.

Relief from pain and distressing symptoms associated with a life limiting illness is an issue relevant to all Canadians. Provision of high quality care for persons nearing the end of life may improve the health and quality of life of the person and affects the health and well-being of members of their informal support network including family, friends, and caregivers. Palliative care, a person-centered approach to care for persons faced with a life limiting illness and their informal support network, focuses on the ‘total person’ or ‘whole self’ addressing the multifaceted complex needs of each person on an individualized basis. Palliative care is recognized by the World Health Organization (WHO) to be “achieved through prevention and relief of suffering by means of early identification, comprehensive assessment, and treatment of pain and physical, psychosocial, or spiritual problems” (World Health Organization [WHO], 2010). The palliative care philosophy prioritizes self-determination of the person and supports their engagement in the care planning and decision making process across the illness trajectory. Approximately one fifth of persons who die annually experience unrelieved suffering (Doyle & Woodruff, 2013). Persons nearing the end-of-life face can face a wide range of challenges that may include: uncontrollable pain and physical symptoms, unresolved and emotionally distressing psycho-social issues, and fear of one’s own mortality and of an unknown future. Nearly two thirds of Canadians who die each year may benefit from palliative care (Canadian Hospice Palliative Care Association [CHPCA], 2010), however only approximately one in eight of those persons are able to access palliative care services (Carstairs & Beaudoin, 2000). Comprehensive clinical assessment supports clinicians to make evidence-informed decisions and promotes a person-centered approach to care planning. The interRAI Palliative Care assessment instrument (interRAI PC) is a comprehensive standardized assessment instrument, designed for use by facility and community based palliative care services, with applications that include care planning, outcome measurement, quality monitoring, and resource allocation (Hirdes et al., 1999; Steel, et al., 2003; Gray, et al., 2009; Hirdes et al., 2008). Using pilot data gathered from the interRAI PC, this thesis examines the potential use of interRAI PC assessment data, and in particular how evidence from the interRAI PC Clinical Assessment Protocols (CAPs) has the potential to inform individualized care plan development for persons with a life limiting illness. This thesis begins with a scoping literature search that describes palliative care in a Canadian context and explores care planning with the interRAI PC. This is followed by three research based chapters (Chapters 6, 7, and 8) that include analysis based on pilot data gathered between 2006 and 2011 using the interRAI PC assessment instrument. Community dwelling persons with a life limiting illness receiving palliative home care services in six geographic locations across Ontario, Canada, were included in these analyses. Persons with a life limiting illness residing in institutional or hospice facilities, or in jurisdictions outside of Ontario, were excluded. Analyses were performed using SAS Version 9.2 with an alpha level of p< 0.05 for all statistical tests unless otherwise stated. The University of Waterloo’s Office of Research Ethics granted ethics clearance for this research (ORE# 19424) November 29th, 2013. The first research chapter (Chapter 6) describes how clinicians may use the interRAI PC Clinical Assessment Protocols (CAPs) to inform care planning. It includes an overview of the suite of eight CAPs and provides a background description of the CAP development process. Discussion addresses the unique distributional characteristics of each CAP and describes a hierarchical triggering structure. Following, chapter six which provides an overview of the interRAI PC CAPs from a broad perspective; chapter seven (the second research chapter) takes a more in-depth focus investigating the Dyspnea CAP. Dyspnea was selected as the symptom of focus because it is the one of the most commonly triggered CAPs affecting nearly half of the sample palliative home care population used in this thesis and is reported to be one of the most distressing symptoms affecting both the person faced with a life limiting illness and their informal caregivers (Ng &von Gunten, 1998; Potter, Hami, Bryan, & Quigley, 2003; Dellon et al., 2010; Kroenke, Johns, Theobald, Wu, & Tu 2013). Chapter seven examines the Dyspnea CAP and describes the prevalence of dyspnea. This chapter demonstrates the relationship between dyspnea and prognosis as well as other clinical factors. Moreover, how the presence of dyspnea changes over time is examined and person-level characteristics, some of which are potentially amenable to change, that affect the risk for dyspnea over time are identified. In addition, risk and protective factors for persons who over time developed new dyspnea symptoms and for those who recovered from dyspnea are examined. Recognizing that a hallmark of the palliative care philosophy is its aim to provide the highest quality of care and support for both the person nearing the end of life and members of their care network including their informal caregivers, the third research chapter (Chapter 8) examines distress experienced by both the caregiver and the care recipient as a unit of care. As quality palliative care may increase satisfaction with care, improve global quality of life for client and their caregiver, reduce physical symptoms like dyspnea, decrease signs of depression or anxiety, and improve access to health care resources (Kane, Bernstein, Wales, Leibowitz, & Kaplan, 1984; Melin-Johansson, Axelsson, Gaston-Johansson, & Danielson, 2010) the association between the presence of dyspnea and distress experienced by members of the caregiver-client unit of care is examined to illustrate how dyspnea relates to distress, a major problem affecting over half of the caregiver-client units of care. Together, findings from this thesis show that if one or more interRAI PC CAPs are triggered then the clinician should take notice. Data from the interRAI PC and more specifically from the interRAI PC CAPs examined in this thesis provide evidence on their potential to inform greater understanding of the complex needs of palliative home care clients. Better understanding of the interRAI PC CAPs and identification of patterns in CAP triggering structure suggest symptoms where clinicians may focus increased attention. To address the accumulative complex needs of persons who are faced with a life-limiting illness and the needs of their caregivers, resource allocation focused on evidence gathered from a comprehensive standardized assessment instrument should be prioritized.

Thesis (Ph. D.)--University of Washington, 2005. / Vita. Includes bibliographical references (leaves 139-164).

Advance care planning for adults is a process of consideration, discussion and decisions about care at the end of life. There is evidence that advance care planning improves outcomes such as the achievement of preferred place of death and the quality of dying. However, the uptake of advance care planning is variable. There are calls for more research to understand what influences people to carry it out to plan services and improve the quality of life of patients and their families. This dissertation reports on a qualitative, video interview study of 15 adult hospice patients. The study was interpretative influenced by the narrative approach with data driven thematic analysis and a video aide memoir. Coding was carried out using the Computer Assisted Qualitative Data Software programme Transana. The rigour and credibility of the study was viewed through the lens of trustworthiness which included the development of a Continuous Conversation Framework. The aim of the study was to investigate what would influence hospice patients to discuss their advance care planning to develop future education programmes based upon the perspectives of people at the end of their life: 1. What influences hospice patients in their advance care planning? 2. What communication skills do hospice patients find helpful when clinicians discuss advance care planning? Three findings are reported. These suggest that the influences on advance care planning activity and conversations is the less reported relationship of the personal context of a person's life (as well as services, diagnosis and prognosis considerations). First, the findings highlight the relevance of how people with an incurable illness live with and talk about their dying within the individual context of their daily lives. Secondly, differences are illustrated between how people prepare (for themselves) and plan (for others) in their dying. Thirdly, clinician communication behaviours such as empathy (through mutual connection and visible behaviours), tailored conversations (through accessible and selective honesty) and the design and use of space empower people to carry out conversations which support them as they live with, prepare and plan for dying. The three findings contribute to the perspective which supports the complexity of advance care planning that should focus on the context of person's life as well as the paperwork, prognosis or diagnosis. A contribution to person-centred care is suggested through a model of relational advance care planning.

abstract: Hospice Music Therapy is an established specialization area within the field of music therapy with significant empirical research confirming its efficacy. Much of the current research on hospice music therapy concerns the use of receptive music therapy and traditional counseling and psychotherapy techniques. According to a survey of people with terminal illness, the most common needs experienced are: pain management, support for autonomy to the fullest extent possible, psychosocial support, and spiritual support. Mindfulness and mindfulness based interventions have been linked to increased self-compassion, reduced stress, reduced anxiety, and a reduction in self-reported perception of pain. While music therapy performs well in empirical measures of hospice-related need areas, mindfulness techniques and practice may enhance the music therapist’s capacity for self-care and administering hospice treatment. Additionally, music therapy may be a good companion to a mindfulness based therapy due to similar cognitive effects and processes that are utilized in each. This thesis will formulate a conceptual framework in which mindfulness and body awareness might be used as an integral aspect to the music therapist's practice in the hospice setting. / Dissertation/Thesis / Masters Thesis Music Therapy 2018