This research study explores the need for palliative care by the patients who are recovering from stroke after an acute event. Stroke survivors need comprehensive care for their physical, psychosocial, spiritual well-being and additional support. The comprehensive total care in all aspect of physical, social and spiritual well-being can only be offered by the holistic approach of palliative care focusing, as it does, on the rehabilitation for stroke survivors to improve their quality of life. A literature review was conducted to investigate how palliative care can help to change the quality of life for stroke survivors. There has been little research on the topic of providing palliative care to stroke patients in South Africa. This research study explores the need and understanding of palliative care management for a stroke survival. The aim of the study is: "To investigate the Need for Palliative care in Cerebrovascular Accident (stroke) patients at Ladysmith Regional Hospital". The objectives of the study were: 1. To identify the holistic care needs of stroke patients. 2. To describe the care provided to stroke patients. 3. To identify the gaps in the care requirements of stroke patients. The study site was Ladysmith Regional Hospital, in UThukela District in Kwa-Zulu-Natal province, South Africa. This is a cross sectional study using mixed methods-both quantitative and qualitative-interviewing patients, and family members of patients who had suffered from a cerebrovascular accident.

Introduction: Palliative care is a core component of comprehensive health care across a person's life span. South Africa is currently in the process of integrating palliative care into all levels of the health care system. Doctors play a vital role in providing these services, but misconceptions about palliative care and who should be providing it, may prevent these services from being offered. Aim: The aim of this study was to discover doctor's perceptions and the current provision of palliative care in a private hospital. Objectives: The objectives of the study were: (1) to explore doctors' experiences of pain and symptom management in palliative care; (2) to explore doctors' perceptions of palliative care, goals of care and teamwork in palliative care; and (3) to explore the doctors' provision of palliative care at the hospital. Methodology: This was a qualitative study using a grounded theory approach. Semi-structured interviews were conducted with 14 participants, made up of doctors in oncology, physicians, surgeons, a cardiologist, an intensivist, a hematologist and a general practitioner. Interviews were recorded, transcribed and an inductive process was used for data analysis which allowed for categories to emerge from the data. Results: Eight themes emerged from the data analysis: improving the quality of life; palliative care as a role for oncologists; late referrals to palliative care, views on the World Health Organisation analgesic pain ladder; morphine a controversial means of pain control; team approach; family involvement and spiritual care. Conclusion: Palliative care was seen as an important intervention for a dying patient, but by introducing these services so late, patients are not benefitting from all that palliative care has to offer. Doctors did not always have a good understanding of when and how to provide palliative care. The following recommendations were made: (1) further research to be conducted in more private hospitals; (2)engage with management and doctors to begin the process of offering more formalised palliative care services at the hospital; (3) networking with available palliative care services, (4) organising palliative care training and workshops and (5) palliative care awareness campaigns.

Home based care is a major intervention in the management of HIV/AIDS and other illnesses in need of palliative care, especially in situations where resources are limited. The challenges associated with HIV/AIDS infection in Botswana resulted in the training of home based care volunteers (HBCV) to assist in the fight against HIV/AIDS. The HBCV regularly visit and assist ill patients at home. They provided support with home activities and basic health care. They are to note changes in their clients' condition, and, if necessary, report to the home based team at the clinics f or further action. The purpose of this study was to explore their knowledge, attitude, and perception in the identification, management, and referral of common symptoms of HIV/AIDS. METHODOLOGY: A cross sectional study of thirty three HBCV participants using a semi - structured interview guide was carried out. Closed and open ended questions were used to collect sociodemographic data and explore their knowledge, attitudes, and perception in relation to the identification, management, and referral of common symptoms of HIV /AIDS. A 5 point Likert scale was used to access their confidence with caring for different symptoms. The response to the open - minded ended question were coded and analysed qualitatively using thematic analysis. RESULTS AND CONCLUSION: Most of the participants were women. The study revealed that fatigue, weakness and pain were the symptoms most identified by HBCV. Other symptoms like diarrhoea were also identified with HBCV demonstrating satisfactory basic knowledge and management of these symptoms. They were aware of common symptoms of opportunistic diseases like tuberculosis and the need to refer such patients. Majority of HBCV were "comfortable" or "very comfortable" with their role of referring patients for symptom management. This study exposed the negative experiences of HBCV, which included stress, fatigue, helplessness, dealing with difficult families, fear of HIV infection, and death of clients. It also highlighted their positive experiences of community appreciation, financial reward, providing symptom relief, spiritual development, increased knowledge, and having a sense of "Botho" (humanness and community responsibility). This study showed the knowledge of the HBCV in relation to HIV/AIDS and associated symptoms. It also presented their attitude and perceptions with the management and referral of these symptoms.

Introduction. A life-threatening illness impacts profoundly not only the patient but also the family. As the spouse or partner is often the primary caregiver for patients with a life-threatening illness it especially affects the couple as a unit, rather than isolated individuals. The Aim of this study. To explore and describe and describe the experience of primary caregivers of patients at end of life receiving care from Hospice Bloemfontein. Objectives. 1. To obtain an in-depth description of the experience of primary caregivers of patients within hospice care. 2. To explore and describe primary caregivers' coping mechanism while providing care. 3. To explore and describe support structures and resources that assist the primary caregiver. Methods. A qualitative study was conducted through individual semi-structured interviews, to explore the experiences of primary caregivers taking care of their partners with a life-limiting disease in hospice care in Bloemfontein, Free State. Results. The findings of this study reflect on the complex experiences and emotional responses of primary caregivers taking care of their partners with a life-limiting disease in hospice care. It also reflects on the demands that are placed on those caregivers to meet all the different and multidimensional needs of their ill partners, which include the effect it has on them financially, physically, and personally. The study further reflects on their emotional reaction to the illness, their caregiving and the impending death of their partners in a context where they are often isolated. Certain factors added to and others relieved caregivers' distress. Although there were common themes, the reactions and experiences of all participants were unique and individual. As a consequence of these demands some of the caregivers in the study experienced exhaustion, physical complaints, isolation, sleeplessness, spiritual distress, and unmet needs. Conclusions. This study reflects on the importance of the role of caregivers as an active participant in providing care and comfort during the final stages of the illness of a patient, but also reinforces the critical need to provide the necessary and adequate support to those caregivers. A thorough assessment is necessary to respond holistically to the unique and individual needs, challenges, and concerns of families.

This population-based, retrospective descriptive analysis was conducted to study a cohort of decedents who died between January 2004 and December 2005 who were referred to the Regina QuAppelle Palliative Care Services (RQPCS). Demographics, diagnostic information and palliative service utilization were collected and analyzed. <p>The first step of the analysis included interviewing the program director and clinical consultant of the RQPCS. They provided the program vision and philosophy of the RQPCS as well as a comprehensive description of the program, including descriptions of the services offered and the staff of the palliative care team.<p>The second step of the research described in detail the demographics, palliative care service use and diagnostic background of the patients of the RQPCS. The variables of interest were age, gender, marital status, living arrangements, area of residence and diagnosis. Analysis also included determining which services the decedents accessed and how many of the services were used by each decedent. Timing of referrals and location of death were also analyzed. Frequencies and percentages were used to describe categorical variables. Means, median and range were used for continuous variables. <p>The third step of this thesis tested for associations between patient attributes and palliative care services utilization, timing of referral and location of death using chi-square analyses. <p>This research determined each of the patient characteristics under investigation to be associated with palliative care utilization. Similar findings were also evident in the literature. In particular, age, marital status, living arrangements, area of residence and diagnosis appeared to be significantly associated with accessing palliative care services. <p>When analyzing the associations between patient attributes and timing of referrals for the RQPCS, no significant results were found. Previous research indicated strong associations between marital status and diagnosis on the timing of referrals into hospice and palliative care programs.<p>Finally, there were two significant associations found between location of death and patient characteristics (gender and living arrangements). However, no clear conclusion could be reached on whether age, gender, marital status, living arrangement, area of residence or diagnosis had any effect on place of death in previous literature.

This population-based, retrospective descriptive analysis was conducted to study a cohort of decedents who died between January 2004 and December 2005 who were referred to the Regina QuAppelle Palliative Care Services (RQPCS). Demographics, diagnostic information and palliative service utilization were collected and analyzed. <p>The first step of the analysis included interviewing the program director and clinical consultant of the RQPCS. They provided the program vision and philosophy of the RQPCS as well as a comprehensive description of the program, including descriptions of the services offered and the staff of the palliative care team.<p>The second step of the research described in detail the demographics, palliative care service use and diagnostic background of the patients of the RQPCS. The variables of interest were age, gender, marital status, living arrangements, area of residence and diagnosis. Analysis also included determining which services the decedents accessed and how many of the services were used by each decedent. Timing of referrals and location of death were also analyzed. Frequencies and percentages were used to describe categorical variables. Means, median and range were used for continuous variables. <p>The third step of this thesis tested for associations between patient attributes and palliative care services utilization, timing of referral and location of death using chi-square analyses. <p>This research determined each of the patient characteristics under investigation to be associated with palliative care utilization. Similar findings were also evident in the literature. In particular, age, marital status, living arrangements, area of residence and diagnosis appeared to be significantly associated with accessing palliative care services. <p>When analyzing the associations between patient attributes and timing of referrals for the RQPCS, no significant results were found. Previous research indicated strong associations between marital status and diagnosis on the timing of referrals into hospice and palliative care programs.<p>Finally, there were two significant associations found between location of death and patient characteristics (gender and living arrangements). However, no clear conclusion could be reached on whether age, gender, marital status, living arrangement, area of residence or diagnosis had any effect on place of death in previous literature.

Abstract Background: Palliative radiotherapy (PRT) plays an important role in the management of patients with bone and brain metastases; however, little is known about the use of this treatment in Ontario. Objectives: The objectives of this thesis were to a)identify health system-related and patient-related factors associated with the use of PRT for bone and brain metastases , and b) describe temporal trends in the use of PRT for bone and brain metastases. Methods: The Ontario Cancer Registry was used to identify patients who died of cancer between the years 1984 and 2004. Temporal trends in the use of PRT were described by year and disease site, using the Cochran-Armitage test for trend. A multivariate logistic regression was conducted to describe the relationship between health system-related and patient-related factors, and the use of PRT, while controlling for disease-related factors. Results: Overall, 10.0% and 4.1% of patients dying of cancer received at least one course of PRT within the last two years of life for bone metastases and brain metastases, respectively. The use of PRT for bone metastases significantly decreased from 10.4% to 9.5% (p<0.0001), while the use of PRT for brain metastases more than doubled from 2.2 to 5.1% during the same period (p<0.0001). In the multivariate analysis, age was negatively associated with the use of PRT in both cases. Patients residing in the richest communities were more likely to receive treatment. A farther distance to the nearest cancer was negatively associated with the use of PRT. The level of radiotherapy (RT) services at the diagnosing hospital was positively associated with the use of PRT for bone metastases. Prevailing waiting time did not significantly influence the use of PRT in either case. Conclusions: Over the course of the study period, the use of PRT for bone metastases decreased, while the use of PRT for brain metastases increased. Access to PRT for both bone and brain metastases was influenced by factors unrelated to need. / Thesis (Master, Community Health & Epidemiology) -- Queen's University, 2009-09-24 23:02:05.662

Purpose: Within the contemporary socio-political context of palliative care and an aging demography, there is a called-for shift to an upstream provision of palliative care in the form of a palliative approach to care as well as to frame access to palliative care within a health equity perspective. In the literature, there is a paucity of nurses’ experiences in the provision of palliative care within psychiatric settings. Moreover, little is known of the process by which nurses engage in a palliative approach to care for patients experiencing multiple marginalities, including institutionalization, mental health, and advanced age. This research explored how nurses in forensic and geriatric psychiatry engage with aging patients and mortal considerations to discern how ethical dimensions of care, aligned within the palliative approach, are enacted. An ethical lens by which to apprehend dimensions of human finitude, reflective of central elements of the palliative approach and public health palliative care, was proposed to help to delineate a process of recognition through which values can be identified in the care of patients. The purpose of this thesis was to explore the phenomenon by which nurses engaged with mortality as both an antecedent to adopting a palliative approach and as a phenomenon that captures nurses’ continued engagement with patients within this approach. Objectives: There were three objectives to the project: 1) explore nurses’ engagement with mortality within an ethics of finitude; 2) identify enablers and barriers, and related historical and socio-political discourses, to engagement of nurses with their patients within an ethics of finitude, and; 3) articulate and deepen understanding of the palliative approach, including ethical dimensions and considerations. The research was an analytical elaboration of a qualitative study at the University of Ottawa that examined the palliative approach to nursing care in forensic and geriatric psychiatry at a mental health facility in eastern Ontario. Methods: Situated within a constructivist epistemic stance, the analytical framework elaborated for this analysis drew from both interpretive description (ID) and interpretive phenomenological analysis (IPA). Utilizing convenience sampling, eight Registered Nurses (7 women and 1 man) working in forensic or geriatric psychiatry completed interviews. Findings: Engagement of nurses within an ethics of finitude was revealed to surface through a process of recognition (recognition of mortality, recognition of the increased vulnerability of patients, and recognition of a corresponding increased responsibility for vulnerable patients) and through the affirmation of values including human connection, dignity, comfort, family, familiarity, and personhood. Barriers and enablers to this engagement emerged related to the care environment, the psychiatric nurse and patient construction, and factors related to family. The implications of the related discourses in the articulation of the palliative approach emerged in relation to health system considerations and to the language of the palliative approach. Conclusion: The process of recognition explored through the proposed ethical lens and revealed in the findings delineated values that underpin the palliative approach by offering an alternate conceptualization to their identification and enactment. Insights from this project underscore preliminary insights on a process to identify care practices aligned within the palliative approach as well as possibilities for critical questioning related to interconnected axes of an ethics of finitude in both the care of individual patients and in the enactment of health policy.

BACKGROUND: Palliative chemotherapy is cancer-directed therapy, which aims at stopping or slowing down the progression of the malignancy even though it may not have any potential for remission or cure. In South Africa, delayed diagnosis of childhood cancer is a common problem for a variety of reasons including lack of health care facilities, transport, information about the disease and delayed presentation due to traditional healer visits or other cultural issues. In patients who present with advanced cancer, or in patients with relapsed cancer without realistic hope of cure, palliative chemotherapy can be offered in an attempt to manage symptoms, improve quality of life and prolong meaningful survival. OBJECTIVES: This research study evaluated South African paediatric oncologists' perspectives and practices regarding the use of chemotherapy in patients with cancer with no realistic hope of cure. The second part of the study described the use of palliative chemotherapy in patients who received treatment at the Steve Biko Academic Hospital Paediatric oncology unit. DESIGN & METHOD: An online survey was conducted among paediatric oncologists in South Africa. The main aims of the questionnaire were to assess paediatric oncologists' considerations around the use of palliative chemotherapy, and then focus on the most recent patients treated with palliative chemotherapy. For the second part of the study, a file review was done of deceased patients who died in the period from January 2012 to December 2018 and who had received palliative chemotherapy as part of their cancer management. We reviewed diagnoses, palliative chemotherapy regimens, timing of initiation and stopping palliative chemotherapy, and whether end of life decisions and discussions were documented. RESULTS: A total of 41 participants completed the survey, giving a response rate of 89%. The majority of the paediatric oncologists were either neutral or agreed that palliative chemotherapy should be considered. The most important treatment aim was to improve quality of life of the patient (92.7% of respondents). The most important considerations when prescribing palliative chemotherapy was to minimise toxicity of the chemotherapy regimen (4.56 mean, SD=0.5 utilising a 5 point scale where 1=not important to 5=very important), and the effectiveness of the chemotherapy (4.37; SD=0.48). Only 19.5% of patients received treatment primarily because parents requested it. According to the oncologists polled, the key considerations were largely achieved in the most recent patient treated with palliative chemotherapy. Individual opinions and preferences concerning recommending palliative chemotherapy differ between paediatric oncologists. Of the 305 patient deaths recorded in the study period, a total of 74 patients had received palliative chemotherapy and were included in the file review. The most common diagnoses were neuroblastoma (18.2%), retinoblastoma (15.6%) and osteosarcoma (14.3%). At the time of diagnosis, the median age of the patients was 6.0 years (range 0.3 to 17.6 years). In 47 patients (63.5%) the disease was deemed incurable at first diagnosis and palliative chemotherapy given from the onset of treatment, while 27 patients (36.5%) were given palliative chemotherapy at relapse. The median time from last palliative chemotherapy to death was 30 days (range 0-742 days). The main documented aim of palliative chemotherapy was to improve symptom control (97.3%) while parents' opinion played an important role in 32.9% of cases. About half of the patients (41 of 74, 55.4%) had documentation of symptomatic improvement. CONCLUSION: Although the overall attitude towards the use of palliative chemotherapy is positive, there is great inter-individual variation between oncologists in opinions and experience. The lack of empirical data to justify recommendations about palliative chemotherapy remains a problem, and the researcher hopes that this study will spark productive discussion and planning towards more structured use of palliative chemotherapy in children with cancer in South Africa. This study shows that many decisions around end of life care and decision-making could be better researched using a quantitative, prospective, interview-based approach. Repeated measurements of the child and family's quality of life and its associations with palliative chemotherapy should be a research priority in future.

Patients with terminal illness may benefit greatly from hospice and palliative care. Studies of patients with chronic terminal illness revealed that those who did not received palliative or hospice care experienced poor quality medical care characterized by untreated symptoms, unmet spiritual and personal care needs, increased burden for the caregiver, and low patient and family satisfaction (Meier, 2011). According to the World Health Organization (2011), palliative care is offered at the time of diagnosis alongside potentially curative treatment and can be utilized during the trajectory of illness until death. Hospice is a Medicare benefit considered the model for quality, compassionate care during the last 6 months of life and is available to all patients regardless of age, religion, race, or illness (Medicare Hospice, 2011). This study examined why patients with non-cancerous terminal illness were not receiving timely palliative or hospice care by interviewing primary care providers. A systemic literature review suggested possible barriers including confusion between palliative and hospice care, lack of understanding about the scope and intent of hospice care (McAteer & Wellberry, 2013), prognostic uncertainty, timing, and no clear point to originate a referral (LeMond & Allen, 2011). Insufficient training for primary care providers, including the lack of familiarity with various prognostic tools that aid in determining eligibility for the patient with a non-cancerous, terminal diagnosis might also be a barrier to referral (McAteer & Wellberry, 2013). Lastly, primary care providers lacked confidence in communicating the need for advanced care planning in non-cancerous terminal illnesses according to a survey done by Karlekar, Collier, Paish, Olson, & Elsay (2014). The findings of this study confirmed the available literature. Much work is needed to educate providers and incorporate palliative care and hospice guidelines in academic institutions and in practice. Regulatory issues need continuous attention as the landscape of coverage, payment, and reimbursement changes rapidly. Further research is needed so that this vulnerable population will benefit from early interventions and a better understanding and acceptance of their non-cancerous terminal illness.