Caregivers while, the biggest providers of palliative care for terminally sick patients, are often neglected in the process of providing care, which inadvertently affects their overall health and well-being. This study aims to explore the experiences of the unmet needs of the caregivers in palliative care. The literature review is based on seven quantitative, four qualitative and one mixed methodology approach studies. Results show a shortage of information given to caregivers regarding disease progression, symptomatology, support services and financial services. Furthermore the themes of unmet needs that emerged are physical, psychological, emotional, social and spiritual needs. Caregivers also reported the shortage of standard services provided by healthcare sector.  A healthy relationship scenario, where caregivers are supported to look after themselves as well as their loved ones, would boost the support they render to the patients.  The provision of needed services to caregivers, nurses, and healthcare personnel is required to fulfill a healthy relationship and further develop it by learning from the caregivers’ experiences. In conclusion, effective communication between caregivers and care providers is found to be a prerequisite for building trust and could contribute to satisfy the informational, medical, social and spiritual needs while helping to decrease health strains of caregivers.

This qualitative study of eight First Nation participants and five First Nation Elders is to help understand how First Nation people view spirituality and how it is practiced when one has a terminal illness. Spirituality is often so abstract and practiced in various ways that it requires clarity and understanding from the people around them. Health care professionals could improve health care by understanding some of the spiritual aspects practiced when people are within their health care system. The First Nation people's perspectives aim to banish some of the mystery or unawareness that looms around spirituality in order to improve health services. Social workers have little or no information about First Nation beliefs and practices around spirituality when they have a terminal illness. The study is to help health care professionals and people with a terminal illness understand spiritual practices through specific beliefs and examples of how spirituality is practiced. / Arts, Faculty of / Social Work, School of / Graduate

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.

Communication with healthcare providers (HCP’s) at the end-of-life (EOL) is a crucial process that can make a difference in the quality of the EOL experience for patients and their families. Targeting EOL communication interventions between patients, their families, and HCP’s is better informed from an understanding of what family members perceive as good and bad communication. The purpose of this study was to explore experiences related to communication with HCP’s in central Massachusetts during EOL care. Data from the parent study (n = 373) included responses from an open ended question at the end of the survey. The larger, qualitative descriptive study, from the parent study, (n = 218 ) that examined the open ended question revealed communication as the overarching theme. A secondary analysis of this open ended survey data using qualitative content analysis was used to describe next of kin’s perspectives of communication with HCP’s during the decedents’ end-of-life experience (n = 171). Family members (children = 38.4% and spouse = 22.0%) comprised the majority of the sample. Decedents were mostly 80 or older (47.6%), died in an acute care setting of mostly cancer (33.0 %) and cardiovascular disease (32.3%). Accessing information, emerged as the overarching theme. Continuum of information, healthcare provider sensitivity, having the answers and raising awarenesswere revealed as subthemes. The majority of respondents reported good aspects versus bad aspects of communication at the EOL. The framework for a good death (Emanuel & Emanuel (1998) under-girded the study but was not supported as it relates to these findings. The framework was useful in capturing the multidimensional process that each patient and their family could experience during the EOL process. The findings from this study provide insight for HCP’s about which aspects of communication are helpful at the EOL. Continuing education of the health care team on these identified helpful communication aspects will provide better access for patients and families for a quality EOL experience.

Societies have an ethical responsibility to provide the dying with the highest possible quality of care. Yet, terminal patients are sometimes lost in a healthcare system that emphasizes procedure over the individual. This project envisions a new approach - a restructuring of the current system. A shared facility that combines rehabilitation and home care with end of life care, promoting flexible treatment to be tailored to each patient according to their individual needs. / Vårt samhälle har ett etiskt ansvar att tillhandahålla döende med högsta möjliga vårdkvalitet. Trots det åsidosätts ibland döende patienter i ett sjukvårdssystem som betonar metod över individen. Detta projekt föreslår en ny strategi - en omstrukturering av det nuvarande systemet. Istället för uppdelade vårdstrukturer föreslås en sammansatt vårdanläggning som kombinerar rehabilitering och avancerad hemsjukvård med sluten palliativ vård, som främjar flexibel behandling och som skräddarsys för varje patient utifrån dess individuella behov.

Introduction: Home visits have become increasingly uncommon although evidence suggests they improve healthcare quality and reduce overall expenditures. This thesis identifies the number and proportion of physician delivering home visits at patient’s end of life and describes characteristics of primary care physicians delivering end-of-life home visits and explores associations with delivery. Method: A retrospective cohort design using population-level health administrative data housed at ICES. Results: A total of 9,884 physicians were identified, of which 2,568 (25.7%) delivered at least one end-of-life home visit. Variables associated with increased odds of home visit delivery were older age, international training, capitation models of remuneration, and population size. Conclusions: This research demonstrates primary care physician’s characteristics and home visit practice patterns. This study aims to improve end-of-life primary care at a system and provider level by identifying factors associated with increased service provision. Increasing physician home services could greatly improve the dying experience of Canadians.

Introduktion: Livets slutskede är den senare fasen i palliativ vård. Döden drabbar den enskilde men involverar flera personer runt omkring. För att kunna ge en personcentrerad omvårdnad krävs det att utgå från patienten och de individuella behoven. Sjuksköterskan fungerar som spindeln i nätet och bör se människan bakom patienten, genom det få en förståelse för hur den enskilde upplever sin sista tid i livet. Syfte: Att beskriva vuxna patienters upplevelse av sin sista tid i livet. Metod: En beskrivande litteraturstudie baserat på 10 stycken kvalitativa artiklar. Huvudresultat: Hur vuxna patienter upplever sin sista tid i livet är individuellt. Gemensamt för ett flertal patienter var självständighet, värdighet och delaktighet. Relationer till närstående var av största vikt vid livets slut. En del patienter kunde finna tröst, frid och acceptans genom tron på högre makter. Patienterna kan ändra sin uppfattning om vad som faktiskt är viktigt och betydelsefullt vid livets slut. Slutsats: I denna studie framkom det att det finns flera gemensamma områden för personer i den sista tiden i livet. Att leva mer i nuet, vårda relationer, samt att behålla sin värdighet är återkommande och viktiga komponenter. Sjuksköterskan kan se detta resultat som ett stöd till att våga prata om döden men bör även ha i åtanke att varje upplevelse är individuell och att människan är unik.

This study examines the concepts of psychodrama and dying, death and bereavement that effectively meet individual needs for working through grief. It is the premise of this thesis that the working through grief to foster acceptance, self-worth and dignity, in the final st.age of life, is facilitated by psychodramatic methods of "acting through" the problems of the situation.

Improving the quality of remaining life for individuals who are terminally ill and their families is an issue that has become increasingly important in recent years. This issue has evolved from perceived deficiencies of conventional health care institutions in meeting the needs of people who are in the final stages of their life, when curative measures are no longer deemed appropriate. In response to deficiencies in care of the terminally ill and their families, there has been a movement toward humanizing conventional health care and making it more holistic. Hospice care, which is consistent with this movement, has evolved as an alternative to hospitals and nursing homes. The purpose (of this study was to investigate the physical environment (building and grounds) of a free-standing hospice facility to identify the features that would contribute to the design and renovation of other hospices and health care facilities that plan to adopt a hospice program of care. In this study, an attempt was made to examine how architectural factors combine in a hospice setting to meet the needs of the dying and their families and those who work in hospices. Specifically, this study used a qualitative, case study approach to describe and develop an understanding of the feelings and experiences of the users of a particular hospice facility concerning the physical environment of that facility. Post Occupancy Evaluation Methodology, which is a process to assess the performance of the built environment after it has been occupied for some time, was employed. Qualitative analysis of the data revealed three distinct environments within the facility to be of major importance to the users when discussing the physical surroundings. The three separate areas of importance were the grounds, the administrative offices, and the patient care unit. The findings of the study will be of use to designers, architects, and planners, as well as hospice advocates, as they will assist them in conceptualizing essential components of hospice design and in creating better hospice facilities in the future.

The purpose of this study to examine the attitudes of several (MSW) medical social workers, currently employed in hospital settings, regarding: (1) death and dying issues, (2) education and training received related to working with the terminally ill patient, (3) specific practice issues which relate to the terminal patient, and, lastly, (4) the effectiveness of each social worker's place of employment in meeting the needs of the terminally ill patient and providing for adequate training of staff in this sensitive area.