This portfolio has three parts. Part one is a systematic literature review entitled ‘Patients' Psychosocial Experiences of Attending Specialist Palliative Day Care: A Systematic Literature Review’. Recent reviews conclude that the benefits of attending Specialist Palliative Day Care are likely to be in the social, psychological and spiritual domains. However these areas are not easily identified, leaving researchers and practitioners unclear as to what aspects of these domains patients most need and desire. The objective of this review was to systematically evaluate literature on patient perceived psychosocial experiences of attendance at SPDC. Twelve studies were included. Evidence showed that patients value a person-centred approach which reduces isolation, increases social support, encourages communication and provides activities. Future research could focus on investigating why patients value the psychosocial experiences reported in this review and how these experiences can be defined in a way that would be meaningful to clinical service commissioners. Once this has been done, clinicians can start to measure clinical effectiveness and devise justifiable interventions for this patient group. Part two is a qualitative study, using Interpretative Phenomenological Analysis (IPA) to explore patients’ perspective of attending SPDC. The importance of services helping patients cope with terminal illness has been emphasised throughout Department of Health (2000) and NICE (2004) cancer guidance. However, whether or not services are achieving this aim has been sparsely researched to date; particularly in relation to Specialist Palliative Day Care (SPDC). Eleven semi-structured interviews were carried out and analysed utilising qualitative methodology (Interpretative Phenomenological Analysis – IPA) to allow for an in depth investigation of SPDC. Emerging themes suggest that SPDC provides an environment in which patients are helped to cope by facilitation of acceptance of the reality of death, thereby freeing them to focus on 'life'. The study does not claim to provide the definitive answer to what processes may underpin attendance at SPDC, however in such an under researched area it provides a much needed exploration which can be built upon or challenged by future research. Part three comprises appendices relating to the research. This includes a reflective statement on the process of conducting the research, the challenges faced and the lessons learnt.

Thesis (M.S.H.S.A.)--Regis University, Denver, Colo., 2008. / Title from PDF title page (viewed on May 27, 2009). Includes bibliographical references.

Thesis (M.S.H.S.A.)--Regis University, Denver, Colo., 2008. / Title from PDF title page (viewed on May 28, 2009). Includes bibliographical references.

Thesis (Ph.D.) - University of Queensland, 2005. / Includes bibliography.

<p>The aim of this explorative study was to understand the experiences and challenges of primary caregivers providing palliative care to women with advanced breast cancer. This study was conducted within a qualitative research design framework underpinned by phenomenology. The significance of this study was to contribute to the knowledge that would help care professionals understand the experiences and challenges that primary caregivers face whilst providing palliative care to women with advanced breast cancer.</p>

Thesis (M.P.H.)--University of Hong Kong, 2009. / Includes bibliographical references (p. 79-92).

Protecting and promoting patients’ and families’ sense of dignity at end-of-life is an indispensable goal, one that palliative care professionals have pursued unceasingly in the modern era. While researchers have made several attempts to uncover the intricate meaning and constitution of dignity and dignified end-of-life care in recent years, their works are solely based upon a Western individualistic paradigm that may not be applicable in Eastern collective societies. This limitation underscores that the existing body of knowledge is missing an important articulation on the Chinese experience. Thus, to fill this important knowledge gap, this study has applied ‘micro’, ‘meso’ and ‘macro’ levels of inquiries to attain a holistic understanding of dignity and dignified end-of-life care in the Hong Kong Chinese context. Through meaning-oriented interviews with 18 Chinese palliative terminal cancer patients and 18 of their family caregivers, as well as four interpretive-systemic focus groups with 30 key informants involved in a novel end-of-life care pathway programme (N=66), a total of 31 themes that elucidate dignity and dignified end-of-life care have been generated. These 31 themes are carefully organized into 9 categories that reflect the Individual, Familial and Institutional dimensions of dignity at end-of-life. First, the Individual dimension includes: 1) “Personal Autonomy”, which consists of Regain Control, Self-Sufficiency, Informed Care Decisions and Future Planning; 2) “Family Connectedness”, which consists of Express Appreciation, Achieve Reconciliation, Fulfill Family Obligations and Strengthen Family Bond; and 3) “Spiritual Plasticity”, which consists of Enduring pain, Spiritual Surrender, Moral Transcendence and Transgenerational Unity. Second, the Familial dimension involves: 1) “Social Agency”, which comprises of Caregiving Resources, Caregiver Assertiveness and Communicative Action; 2) “Family Integrity”, which comprises of Mutual Support, Kinship Involvement and Family Adaptability; and 3) “Filial Compassion”, which comprises of Compassionate Duty, Reciprocal Relationship and Emotional Connection. Third, the Institutional dimension entails: 1) “Regulatory Empowerment”, which encompasses Interdisciplinary Teamwork, Resource Allocation, Culture Building and Collaborative Policymaking; 2) “Family-Centered Care”, which encompasses Continuity of Care, Family Conference and Care Partnership; and 3) “Collective Compassion”, which encompasses Devotion in Care, Empathic Understanding, and Compassionate Action. These 9 categories and their respected 31 themes are clearly interrelated and embedded within the political, cultural, and spiritual contexts of society, highlighting the intricate interplay of systemic structure and social discourse for promoting dignity at end-of-life. These findings have further led to the development of the ‘Patient-Family Model of Dignified Care’ and the ‘Interpretive-Systemic Framework of Dignity at End-of-Life’. The former provides a new clinical protocol for identifying and evaluating the strengths and weaknesses within the personal, interpersonal and transpersonal functioning of the patient-family dyads in Chinese end-of-life care. The latter offers a public health roadmap for social change that accentuates the necessity for a collective consciousness of compassion in pushing forth the ultimate ideal of living and dying with dignity in Hong Kong. Based on this body of work, recommendations for patient-family care at end-of-life, expansion of community-based palliative care, and development of palliative long-term-care for ensuring quality and equality in the care of dying patients and their families are discussed. / published_or_final_version / Social Work and Social Administration / Doctoral / Doctor of Philosophy

Thesis (MTech degree in Nursing)--Tshwane University of Technology, 2011. / Quality of life has been well researched, especially with respect to cancer sufferers, but not necessarily from the perspective of the patient and also not in third-world, resource-poor countries. In this study quality of life was researched from the perspective of the palliative patient living in Soshanguve, a township 45 kilometres from Pretoria in South Africa. The patients were managed at the palliative care nursing community of practice in Soshanguve and suffered from cancer, HIV and AIDS, pulmonary tuberculosis, cerebrovascular incidents and chronic pain due to arthritis.

<p>The aim of this explorative study was to understand the experiences and challenges of primary caregivers providing palliative care to women with advanced breast cancer. This study was conducted within a qualitative research design framework underpinned by phenomenology. The significance of this study was to contribute to the knowledge that would help care professionals understand the experiences and challenges that primary caregivers face whilst providing palliative care to women with advanced breast cancer.</p>

A constructivist research paradigm informed an investigation of the relevance of music therapy (MT) in a cancer hospital, that is, (a) what did MT do(?) and (b) did it help? Over three months, criterion sampling was used to elicit interpretations from five sources: 128 patients who participated in MT, 27 patients who overheard or witnessed MT, 41 visitors, 62 staff, and the researcher who was also the MT clinician in this study. The researcher’s interpretations were recorded in a reflexive clinical journal and the respondents’ interpretations were written on anonymous open-ended questionnaires. The MT program was predominantly characterised by the use of patient and visitor selected live music. Thematic analysis, informed by grounded theory (Strauss & Corbin, 1990), and content analyses were performed on the five groups of data with the support of ATLAS/ti (Muhr, 1997) software. Many patients and visitors who experienced MT reported that MT elicited a range of affective responses and altered imaginings. Responses were especially characterised by memories being revisited but also characterised by the respondents’ “transportation” to new spaces or thoughts and physical sensations. Some staff and patients who overheard MT also reported similar experiences. The researcher, and often staff and visitors, also perceived that MT elicited affective and imagined sensations in patients.