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.

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 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.

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.

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Thesis advisor: Andrea Vicini / Thesis advisor: Daniel Daly / Thesis (STL) — Boston College, 2023. / Submitted to: Boston College. School of Theology and Ministry. / Discipline: Sacred Theology.

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This study explores whether queer people wait longer than non-queer people to seek professional medical care in the wake of an illness or injury. Little scholarship has evaluated queer people's pursuit of palliative medical care. An online survey was distributed to Virginia Tech students aged 18-30 years old who have experienced an illness or injury in the last year that compromised their daily function. Using demographic data obtained about gender identity and sexuality, respondents were divided into "queer" (non-cisgender and/or non-heterosexuals) and "non-queer" (cisgender, heterosexuals) groups. The survey assessed the number of days between the onset of an illness or injury and the first attempt to schedule care. The statistical analysis revealed significant differences suggesting that, of the people who had received care in the last 12 months, queer people, on average, waited fewer days than non-queer people to attempt to schedule care. This does not include respondents who indicated that they did not receive care in the last 12 months. This may indicate that queer people forego seeking palliative care unless absolutely necessary. This study is informed by M. Reynolds's Health Power Resources theory, and demonstrates the importance of measuring not only the presence of behaviors but also the absence of relevant behaviors when applying this theory. Based on the results, this study calls for further research into both delays in care-seeking behavior and into healthcare avoidance among queer individuals. / Master of Science / If two different people catch an illness and one of them identifies as transgender or gay, but the other one identifies as straight and cisgender, which one of them will wait longer to see a doctor? Waiting longer to get healthcare can be dangerous and costly, and yet many people wait to get healthcare even when they get sick or injured. Queer people (those who do not identify as cisgender and heterosexual) have themselves reported experiencing a number of barriers to receiving healthcare in the United States. This study compares how long queer and non-queer people wait to seek healthcare after an illness or injury to see if these reported barriers to accessing healthcare contribute to a greater reluctance among queer people to pursue healthcare. This reluctance is measured as the number of days between the start of a person's medical ailment and their first attempt at scheduling or receiving professional care for said ailment. A survey was conducted of Virginia Tech students, all of whom experienced an illness or injury in the last 12 months that compromised their ability to perform daily tasks (such as attending classes or completing housework). The results indicated that, of the people who had received care in the last year, queer people, on average, waited fewer days than non-queer people to seek care. However; this dataset does not reflect the experiences of those who indicated that, despite getting sick or injured, they did not receive care in the last 12 months. This may suggest that queer people avoid getting professional help for an illness or injury unless absolutely necessary, instead waiting for injuries or illnesses to get better without professional care. Based on the results, more research is needed on both delays in care-seeking and on healthcare avoidance among queer individuals.