Background: The number of patients dying with advanced liver disease is rising dramatically. However, little is known about the experiences of these patients and their families in respect of their care and everyday life with the disease. Palliative care services are traditionally focused on cancer and more recently on other types of organ failure, but liver disease is relatively neglected. Aim and objectives: This study aimed to broaden our understanding of the experience of living and dying with advanced liver disease. Specifically, it sought to explore the dynamic physical, psychosocial, existential and information needs of patients and their lay and professional carers, and to review their use of health, social and voluntary services. Additionally, this study examined the utility of a qualitative longitudinal, multi-perspective methodology in end-of-life research. Methods: This study employed qualitative, multi-perspective serial in-depth interviews. Patients with different aetiologies of liver disease were recruited in hospital. They and their lay carers were interviewed up to three times over one year. Single interviews were undertaken with case-linked professionals. Interviews were recorded, transcribed and analysed using grounded theory techniques and NVivo 9. Results: 15 patients, 11 lay carers and 11 professional carers were recruited, and 53 interviews conducted. Uncertainty was the key experience at all stages of the illness, across all domains, and for all participants: patients, lay carers and professionals. This uncertainty related to the nature of the illness, the unpredictability of disease pathway and prognosis, poor communication and information-sharing, and complexities of care. Coping strategies demonstrated a continuous quest to manage uncertainty. Current care arrangements were a poor fit with the high levels of physical and psychosocial need identified. The ubiquitous uncertainty meant that a care planning approach was difficult to introduce. Employing a qualitative longitudinal, multi-perspective approach emerged as a useful and effective way in which to conduct research with this patient group and contributed new learning with regard to its application in end-of-life research. Conclusion: This study identified uncertainty as the central pervasive factor in the experiences of patients, lay and professional carers. The needs of this patient group are currently poorly met from diagnosis to bereavement. Uncertainty makes advance care planning important, but difficult to know when to start. More needs to be done to ensure that people living and dying with advanced liver disease and their families benefit from appropriate and timely supportive and palliative care.

The South African Constitution (South Africa, 1996) states that access to healthcare services is a basic human right. The Patients’ Rights Charter (HPCSA, 2008: 6) stipulates that the provision for “special needs in the case of persons living with HIV or AIDS” and palliative care be “affordable and effective”. The need for palliative care in South Africa today continues to increase. Khan and Sayed 2011[2]) found that five years after commencement of anti-retrovirals, twenty five percent of their patients had passed away. This study was performed in the Eastern Cape which is one of the poorest provinces with the second highest HIV prevalence rate. Since 2008, Sophumelela Centre Incorporated has offered palliative care for HIV and AIDS patients in Buffalo City. Some of these patients and their families were interviewed about their experiences in this care centre. The South African Constitution (South Africa, 1996) states that access to healthcare services is a basic human right. The Patients’ Rights Charter (HPCSA, 2008: 6) stipulates that the provision for “special needs in the case of persons living with HIV or AIDS” and palliative care be “affordable and effective”. The need for palliative care in South Africa today continues to increase. Khan and Sayed (2011[2]) found that five years after commencement of anti-retrovirals, twenty five percent of their patients had passed away. This study was performed in the Eastern Cape which is one of the poorest provinces with the second highest HIV prevalence rate. Since 2008, Sophumelela Centre Incorporated has offered palliative care for HIV and AIDS patients in Buffalo City. Some of these patients and their families were interviewed about their experiences in this care centre.

The writing of this thesis is to investigate the role that the church can have with people living with HIV / AIDS. This investigation takes us both into the role of the Evangelical Christian Church as a healing community, and becoming a haven for those who walk alone and suffer quietly because no one cares. Never before in the history of the world have we faced such a pandemic. It knows no boundaries, leaving a path of death and destruction to all who treat it lightly. HIV / AIDS has touched every community within the global village. There is not a parliament or doctor that has not pondered this terrible disease. My question through this thesis is the role of the church. Can the church rise to embrace the enormous social need that HIV / AIDS presents. South Africa is a vast land with many race and cultural groupings. Effective therapy and pastoral care I believe transcends all race and cultural barriers. All human beings respond to love and shelter, the very basic of our human needs. South Africa has the highest rate of infection in the world. It is estimated that we will have over a million orphans to care for soon. Let the church not lag behind, let us set the pace of showing the love and care for all people with HIV / AIDS. / Dissertation (MTh (Practical Theology))--University of Pretoria, 2005. / Practical Theology / unrestricted

Palliative care is often not considered during care or is considered too late in the patient’s healthcare journey to provide much benefit. The underutilization of palliative care contributes to increased healthcare costs, poor patient outcomes, and decreased patient satisfaction. The practice-focused question guiding this evidence-based practice (EBP) project was whether an education program would increase nursing knowledge regarding palliative care criteria. The program was developed using Rogers’s diffusion of innovation model and a literature review to create educational tools and achieve a sustainable EBP change. An evidence-based decision tree was developed and used as a tool for teaching and learning. Other assessment tools included a pretest, posttest, and program evaluation. Twenty staff nurses from the same department participated in the education program. Registered nurses were selected based on the amount of regular face to face patient contact they have with patients. The education program increased knowledge of palliative care by 58% and validated the need for nursing education of palliative care criteria. The program might be beneficial to disseminate to all nurses who have patient contact. The potential for positive social change generated from findings of this project include improving satisfaction, quality of care, and outcomes of the patients and families benefiting from palliative care services.

The purpose of this qualitative study was to explore the process of complex healthcare decision-making by parents for their children within the milieu of a pediatric palliative care team. As healthcare has advanced, the number of children living with complex chronic conditions has increased. Decision-making by parents for their children referred to palliative care has not, up to this point, been widely explored by nursing. A purposeful sample of 22 participants, parents of children in life-limiting or life-threatening situations were asked: What matters most during the process of complex healthcare decision-making? A constant comparative method was used to analyze data collected from semistructured interviews and the theory of embodying parenting in the midst of conflicting complexity emerged. J. Watson’s (2020) theory of human caring grounded the researcher in living caritas processes throughout the study. All participants experienced a disruption of their expected parenting and family normal. Through constant comparative data analysis, the core category of embodying parenting was identified. Feeling respected as the parent, thoughtfully making right decisions, and maintaining presence support embodying parenting. The basic social process identified was finding a unique path. The process of finding a unique path included connecting with a supportive community, claiming decisional authority, moderating negative thoughts and feelings, and adjusting expectations. Living in peace was achieved by finding a unique path to embodying parenting in the midst of conflicting complexity. For the participants in this study, accepting circumstances, feeling gratitude, and perceiving life differently led to living in peace. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2020. / FAU Electronic Theses and Dissertations Collection

The heart failure illness trajectory is both complex and unpredictable, which makes providing palliative care services to patients with heart failure a challenge. As a result, although services are needed, few tend to be offered beyond basic medical management. The traditional model of palliative care is typically based on palliative care being considered a system of care delivery most appropriate for patients with a predictable illness/death trajectory, such as terminal cancer. This type of model, which is based on the ability to predict the course of a terminal disease, does not fit the heart failure trajectory. In this article, we propose a new model of palliative care that conceptualizes palliative care as a philosophy of care that encompasses the unpredictable nature of heart failure.

Background. Recent efforts have focused on improving pediatric palliative care to relieve physical and psychological suffering throughout the course of illness, as well as to improve care at the end-of-life (EOL). One area of attention has been medical training, as healthcare providers have often reported feeling ill-equipped to manage EOL issues. As a pilot study, we developed and evaluated a daylong educational workshop on pediatric palliative care for oncology fellows. Procedure. Fellows (N = 32) from 20 hospitals participated in one of two workshops covering palliative care topics, such as pain/symptom management, communication, ethics, and bereavement. Training, knowledge, behavior, and attitudes regarding pediatric palliative care were assessed before the workshop, and knowledge was re-assessed immediately afterwards. Results. Fellows reported a general lack of training in EOL care, and only 41% rated their education as at least "somewhat" adequate. Colleagues and personal experience were more often sources on EOL care, rather than formal classes or textbooks. Although fellows reported open attitudes toward palliative care, such as involving adolescents in decision-making, only half felt comfortable in the presence of a dying person. Fewer than half felt comfortable providing EOL care, managing families' expectations, or knowledgeable enough to discuss hospice with patients/families. Following the workshop, knowledge of palliative care increased significantly from 75 to 85% correct. Conclusions. Fellows reported open beliefs about palliative care, but acknowledged weaknesses in their training and level of competence. The workshop showed efficacy in improving knowledge, but additional research is needed to evaluate larger educational initiatives and their long-term impact on clinical services and family satisfaction.

Background: The field of perinatal palliative care aims to support the unique needs of parents who choose to continue pregnancy following the diagnosis of a life-limiting fetal condition (LLFC). As parents navigate this challenging trajectory, the support they receive from healthcare providers is crucial in shaping parental experiences. Objective: to critically reflect on existing literature and to reveal a deeper understanding of the experience of continuing pregnancy in the presence of a LLFC Design: Qualitative meta-synthesis Methods: The primary search strategy consisted of multiple searches within four electronic databases. The analysis was guided by thematic analysis. Results: This meta-synthesis included 29 qualitative studies. Three main themes were identified; time, uncertainty and relationships. These concepts exist concurrently within this trajectory and continuously influence each other as well as the overall experiences of parents. Conclusion: Nurses are encouraged to acknowledge the significance of the interconnectedness between these key concepts and to critically reflect on how their everyday interactions become part of parents’ lived experiences.

Yes / Background: Recruitment of patients with advanced cancer into studies is challenging. Objective: To evaluate recruitment methods in a study of pharmacist-led cancer pain medicines consultations and produce recommendations for future studies. Method: Two methods of recruitment were employed: 1) community-based (general practitioner computer search, identification by general practitioner, community pharmacist or district nurse and hospital outpatient list search), and 2) hospice-based (in and outpatient list search). Patients identified in method 1 were invited by post and in method 2 were invited face-to-face. Information was designed in collaboration with patients and carers. Results: 128 patients were identified (85 from the community and 43 from the hospice), 47 met the inclusion criteria. Twenty-three agreed to take part and 19 completed the study, 17 of whom were already under specialist palliative care. Recruitment rates were 7% for community-based methods and 40% for hospice. The recruitment methods differed in intensity of resource use. Recruitment via letter and a lack of engagement by healthcare professionals were found to be barriers. Facilitators included the researcher having personal involvement in recruitment. Conclusion: The overall recruitment rate was in line with other studies for this patient cohort. Attempts to identify and engage patients through community-based postal contact were less effective than where personal contact with patients was both possible and occurred. Methods were less successful at recruiting patients who were not already engaged with hospice services. / Programme Grants for Applied Research. Grant Number: RP-PG-0610-10114

Introduktion/Bakgrund: Cancer i sen palliativ fas innebär ett stort lidande för många människor.Copingstrategier kan hjälpa patienter att minska lidande och öka livskvalitet. Sjuksköterskor har en viktiguppgift i att identifiera och stötta val av copingstrategiSyfte: Syftet med denna litteraturstudie är att undersöka copingstrategier hos patienter med cancer i senpalliativ fas.Metod: Polit och Becks nio steg användes för denna litteraturstudie. Systematisk databassökning gjordes föratt finna artiklar att basera resultat på. Deduktiv ansats som utgick från Lazarus och Folkmans teorier omcopingstrategier användes för att kategorisera resultat.Resultat: Patienterna använde sig av problemfokuserad coping för att aktivt bibehålla sin autonomi samt tainitiativ till att söka råd och stöd från vårdpersonal och närstående. Känslofokuserad coping användes för attvända situationen emotionellt till något positivt, ofta med hjälp av närstående, mindfullness eller meditering.Meningsfokuserad coping delas in i existentiell- och acceptansfokuserad coping. Dessa strategier hjälptepatienter att använda sig av sin religiösa grundsyn samt acceptera sin situation för att minska lidande.Slutsats: En stor mängd olika val av copingstrategier och upplevelser kopplade till dessa kunde identifierashos patienter med cancer i sen palliativ fas.