Bakgrund: Sjuksköterskor behöver möta närstående till personer som vårdas palliativt. Sjuksköterskan kan skapa meningsfulla relationer med närstående och använda denne som en resurs för patienten. Närståendestöd är en av hörnstenarna inom den palliativa vården. Sociala relationer är en av de 6 S:n som används vid personcentrerad palliativ vård, då närstående kan tillföra fler dimensioner till patientens livsberättelse. Syfte: Syftet med denna litteraturstudie var att beskriva sjuksköterskans erfarenheter av att möta närstående till patienter inom palliativ vård. Metod: Metoden var en litteraturöversikt där tolv vetenskapliga artiklar inkluderades. Artiklarna hämtades från databaserna CINAHL Complete och Pubmed och analyserades med hjälp av Fribergs analysmetod. Resultat: Två teman identifierades: yttre och inre förutsättningar för sjuksköterskan. Yttre förutsättningar för sjuksköterskan delades in subteman såsom tidens betydelse, vårdmiljöns inverkan och när närstående har en annan åsikt. I inre förutsättningar för sjuksköterskan framkom sjuksköterskans förmåga att involvera närstående, sjuksköterskans förmåga att utveckla sin kompetens i mötet med närstående, kommunikationens betydelse och förutsättningar att skapa teamarbete. Diskussion: Med de 6 S:n som teoretisk utgångspunkt har litteraturöversiktens resultat diskuterats utifrån bakgrund och annan relevant litteratur. Närstående behövs i vården kring patienten men det är inte alltid som närståendes vilja är densamma som patientens eller vårdgivarens. För att sjuksköterskan ska kunna använda närstående som en resurs krävs tydlig kommunikation och stöd från sjuksköterskan i arbetet mot ett gemensamt mål för palliativ vård. / Background: Nurses need to face next of kin to people who receive palliative care. The nurse can create meaningful relationships with the next of kin and can use them as a resource for the patient. Support for the next of kin is a cornerstone in palliative care. Social relations are one of the 6 S:s used for person-centered palliative care when next of kin can add more dimensions to the patient's life story. Aim: The purpose of this study was to describe nurses' experiences in meeting next of kin to patients in palliative care. Method: The method was a literature review where twelve scientific articles were included. Articles were taken from the databases CINAHL Complete and Pubmed and analyzed using analysis of Friberg. Results: Two themes were identified: external and internal conditions for the nurse. External conditions for the nurse divided into subthemes such as time significance, the care environment impact and when the next of kin has a different opinion. The internal conditions for the nurse came up as the nurse's ability to involve next of kin, nurses' ability to develop their skills in the meeting with next of kin, the importance of communication and the ability to create teamwork. Discussion: With the 6 S:s as a theoretical basis, this literature review has been discussed from the basis of the background and other relevant literature. Next of kin are needed in the health care around the patient but it is not a guarantee that the next of kin`s wishes is the same as the wishes of the patients or the caregivers. For the nurse to use next of kin as a resource it requires clear communication and support from the nurse in the work towards a common goal of palliative care.

Hospital-based specialist palliative care services are designed to address the needs of critically ill patients by psychosocial and spiritual support, improving symptoms management, and offering discussions on goals of care. Integrating palliative care upstream in the care continuum for patients who eventually die in the hospital will help to address the many individualistic needs of the critically ill patient. The diffusion of specialist hospital-based palliative care services requires an understanding of patterns of utilization by patients. The purpose of this study was to examine the population characteristics of decedents who may or may not have utilized specialist palliative care services in a hospital setting in order to develop a model of predictors of access to specialist palliative care services. The basic constructs of this study are grounded in the Behavioral Model of Health Services Use. Potential access is measured in terms of population characteristics, which include predisposing characteristics, enabling resources, and evaluated need. Building on this theoretical model, the study sought to better understand equitable and inequitable access to specialized palliative care services and to define which predictors of realized access were dominant. The research question asked was: What are predictors of access to specialized palliative care within a large urban public teaching hospital? A model of access to a palliative consult and a predictor of access to a palliative care unit were explored. Findings from this study revealed that factors encouraging access to a palliative care consult include older age, White non-Hispanic ethnic membership, a diagnosis with solid cancer and insurance. Factors encouraging access to a palliative care unit include older age, gender (female), insurance, and either a solid cancer or hematologic malignancy diagnosis.

Background: A growing number of older people, mainly women, live in single households. They represent avulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end oflife. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research Little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay athome even at the end of life. This paper aims to introduce the research protocol. Methods: We plan to apply a qualitative longitudinal study to better understand how older people living aloneand their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We willconduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 completedata sets and up to 200 personal interviews were planned. These will be complemented by regular telephonecontacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructingcase trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshopsshall assure quality and support knowledge transfer. Discussion: This study protocol aims to guide research in a field that is difficult to approach, with regard to itstopic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative Research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will beenhanced, which is of major relevance for future care planning. With investment in additional reflexivity andcommunication procedures innovative results and robust knowledge are expected outcomes.

Bakgrund: Av Sveriges befolkning är ungefär 80 % i ett behov av palliativ vård. Majoriteten av dessa beskrivs vara äldre med en långdragen sjukdomsprocess. I ett palliativt vårdande ska sjuksköterskorna utgå från fyra hörnstenar, vilka Socialstyrelsen utvecklat från WHO:s riktlinjer. Enligt dessa ingår det i sjuksköterskans roll att lindra besvärande symtom, arbeta utifrån ett tvärprofessionellt teamarbete, ha goda kommunikationer och relationer samt att ge stöd till närstående. Syfte: Att belysa erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Metod: En litteraturöversikt gjordes där tio kvalitativa och kvantitativa artiklar användes till resultatet som belyser erfarenheter av sjuksköterskerollen vid vårdande i livets slutskede. Sökningarna gjordes i databaserna, CINAHL Complete, PubMed och Medline with Fulltext. Artiklarna analyserades med hjälp av färgkodning. Resultatet: Resultatet visade på sjuksköterskors erfarenheter av att agera patientens advokat, vikten av att arbeta i ett vårdteam, sjuksköterskornas erfarenheter av att vara utbildad och föra sin kunskap vidare samt sjuksköterskornas erfarenhet att vilja främja hälsa. Diskussion: Metoddiskussionen belyser tillvägagångssättet, svagheter och styrkor. Resultatdiskussionen lyfts utifrån Watsons caritasprocesser som stärker det sjuksköterskorna återger, där relationen är en nyckelkomponent i vårdandet samt hur brister i kommunikationen kan förstås. Det framgick att sjuksköterskor hade olika erfarenheter av vård i livets slutskede och att de mer erfarna var de som kände sig tryggast. Ur detta ges egna reflektioner av det ideala vårdandet enligt Watson, och hur det kan användas i praktiken av sjuksköterskor.

This thesis is a critical assessment of Edith Stein’s critique of Martin Heidegger, which is focused on the definition of the human being. I explore Stein’s ontology of the person from the point of view of her examination of Heidegger’s existential ‘Dasein’ and the way she reaches a very different answer to the same question that Heidegger posed, the question of the meaning of being. To this end I examine key passages of Stein’s most important ontological work Finite and Eternal Being - An Attempt at an Ascent to the Meaning of Being along with its appendix Martin Heidegger’s Philosophy of Existence, in which she directly discussed Heidegger’s philosophy, focusing on his work Being and Time. In the first part of this research I draw a historico-philosophical overview of the academic and political background of the period between World War I and World War II in Germany in order to position both authors in context and investigate their philosophical influences as well as their ambiguous relationship with the phenomenological school. The central part is dedicated to Stein’s analysis of Heidegger’s Dasein: I compare and explain both authors’ approaches to the philosophical understanding of human being, person, life, soul and death. This investigation was carried out with both a hermeneutical and terminological analysis. I draw upon the results to demonstrate how Stein’s phenomenology of life experiences enlarges the borders of human finitude to embrace the possibility of its ontological horizon while Heidegger restricts and concentrates the entire ontological question on the Dasein, its existence and ultimately its finitude. My findings provide an assessment of the limits as well as the strengths of Stein’s critique. I demonstrate that Stein attempted to build a bridge between classical ontology and phenomenology, while Heidegger’s distance from the philosophical tradition was rooted in his methodological refusal. I also show how their opposite methods and findings present unexpected similarities and how Stein’s philosophical significance should be reconsidered in the light of her work. This research leads to various implications for today’s philosophical debate and makes it possible to view Stein’s theory of being in a wider ethical context, as presented in the final part of this work. I argue that Heidegger depersonalises and violates traditional ontology to explain the human being only in terms of pure existence, while Stein’s portrait of the ‘fullness’ and the meaning of life contributes to the discussion between philosophy and religion. In the final section of this work I show how some of the elements emerging from Stein’s critique of Heidegger can cast a light on the current ethical discussion about how death is understood and experienced socially, and how best to care for the dying.

AIM - To explore the perspectives of service users and professional staff towards service user involvement within the context of a changing cultural environment at a UK hospice. METHOD - Case study and thematic analysis including interviews with 16 staff including the CEO and 6 service users at a UK hospice. FINDINGS - Three overarching themes were identified: involvement and disempowerment in decision-making; belonging and alienation in a period of organisational change; struggle to maintain wellbeing and identity in a changing culture. A key finding is that service users receiving care from the hospice wanted their voices to be heard, valued and respected for their personal care and issues affecting the hospice. Service users did not consider it a burden to be asked for their views. They felt disempowered by a consultation process about organisational changes that appeared not to take their views on board. There is a need to consider whether a reliance on surveys for involving service users is sufficient or can become tokenistic. External social-political-economic pressures plus increasing privatisation of public services could influence the way that hospices operate in future. This could involve moving from a sanctuary to a business culture and potentially towards managerialism by adopting a regulatory rather than rights-based approach with an emphasis on increasing reach, measuring numbers and hitting targets. Service users being viewed as consumers with a focus on reablement/rehabilitation activities and less on psychosocial support could also serve to push hospices to start behaving more like hospitals. CONCLUSION - More qualitative research is needed to ensure the voices of service users living with a life-limiting illness are heard. The contributions they make towards co-production of services and research should also be heard and influence practice and policy. Service users should also be more involved in education and training of staff.

BACKGROUND: Nurses working in intensive care units (ICUs) frequently care for patients and their families at the end-of-life (EOL). Providing high quality EOL care is important for both patients and families, yet ICU nurses face many obstacles that hinder EOL care. Researchers have identified various ICU nurse-perceived obstacles, but no studies have been found addressing the progress that has been made over the last 17 years.OBJECTIVE: To determine the most common and current obstacles in EOL care as perceived by ICU nurses and then to evaluate whether or not meaningful changes have occurred since data were first gathered in 1998.METHODS: A quantitative-qualitative mixed methods design was used. A random, geographically dispersed sample of 2,000 members of the American Association of Critical-Care Nurses was surveyed.RESULTS: Five obstacle items increased in mean score and rank as compared to 1999 data including: (1) family not understanding what the phrase "life-saving measures" really means; (2) providing life-saving measures at families' requests despite patient's advance directive listing no such care; (3) family not accepting patient's poor prognosis; (4) family members fighting about use of life support; and, (5) not enough time to provide EOL care because the nurse is consumed with life-saving measures attempting to save the patient's life. Five obstacle items decreased in mean score and rank compared to 1999 data including (1) physicians differing in opinion about care of the patient; (2) family and friends who continually call the nurse rather than calling the designated family member; (3) physicians who are evasive and avoid families; (4) nurses having to deal with angry families; and, (5) nurses not knowing their patient's wishes regarding continuing with tests and treatments.CONCLUSIONS: Obstacles in EOL care, as perceived by critical care nurses, still exist. Family-related obstacles have increased over time and may not be easily overcome as each family, dealing with a dying family member in an ICU, likely has never experienced a similar situation. Based on the current top five obstacles, recommendations for possible areas of focus may include (1) improved nursing assessment regarding the health literacy of families followed with directed, appropriate, and specific EOL information, (2) improved care coordination between physicians and other health care providers to facilitate sharing care plans, (3) advanced directives that are followed as written by patients, (4) designated family contact communicating with family and friends regarding patient information, and, finally, (5) earlier, transparent discussions of patient prognoses as disease processes advance and patient conditions deteriorate.

Background: Around 100 000 people die in Sweden every day and most of them need palliative care. Palliative care means relieving relief and promoting good quality of life for dying persons. Palliative care is included in the education programme for nurses, although it varies during the education. The aim:To describe nurses experience of care in palliative care with focus on the end of life care. Method:A literature study based on eleven scientific articles. Main Result:Showed that care for dying patients are sensitive and emotional for nurses and this can affect palliative care. The experiences showed that nurses felt unprepared to meet dying patients, this was linked to deficiencies such as knowledge, time, experience and support. The result showed that communication and close relationships are basis for good palliative care and also the promotion of good quality of life for dying patients at the end of their lives. Conclusion: Palliative care is complex. In order for nurses to be able to offer good palliative care for the dying patients, better educations and strategies are needed to deal with difficult situations and build a stronger relationship with the patients and their relatives. Furthermore, lack of time and knowledge affects the care and nursing profession. Developing the experiences as well as constant reflection on nurse's work role can help to understand the care of dying patients better. / Bakgrund: Varje år avlider cirka 100 000 människor i Sverige. De flesta behöver palliativ vård. Palliativ vård innebär att lindra lidandet och främja god livskvalitet för döende personer. Palliativ vård ingår i utbildningen för sjuksköterskor, men innehållet varierar under utbildningens gång. Syfte: Att beskriva sjuksköterskors upplevelse av vårdandet inom palliativ vård med fokus på livets slutskede. Metod: En litteraturstudie baserad på elva vetenskapliga artiklar. Huvudresultat: Visade att vårda döende patienter är känslomässigt för sjuksköterskor och detta kan påverka den palliativa vården. Upplevelserna visade att sjuksköterskor kände sig oförberedda att möta döende patienter, detta förknippades till brister såsom kunskap, tid, erfarenheter samt stöd. Resultatet visade att kommunikation och nära relation är förutsättningar för en god palliativ vård och främjar god livskvalitet för döende patienter i livets slutskede. Slutsats: Palliativ vård är komplex. För att sjuksköterskor ska kunna erbjuda en god palliativ vård till döende patienter behöver de mer utbildning och strategier för att hantera svåra situationer samt skapa en bättre relation med patienterna och anhöriga. Brist på tid och kunskap påverkar vård och sjuksköterskors profession. Utveckling av upplevelserna samt ständig reflektion över sjuksköterskornas arbetsroll kan vara till hjälp för en bättre förståelse av att vårda döende patienter.

HIV-positive children in sub-Saharan Africa have numerous challenges to overcome. These challenges increase psychosocial stress as well as symptom burden including fatigue, weight loss, pain, and mental changes. The symptoms may persist even after initiation of antiretroviral therapy, so such children need additional care. Palliative care lays emphasis on holistic patient-centered care, including physical, psychological, social, and spiritual symptoms, alongside antiretroviral therapy. There is limited data on the impact of integrating palliative care with standard HIV care and treatment in children. The purpose of this study was to fill the gap in the literature by investigating the impact of palliative care on health status in HIV-positive children on antiretroviral therapy. The theoretical framework was based on the humanistic nursing theory. Using the Mann Whitney U and logistic regression tests, the health-related quality of life of 97 children who received palliative care in addition to standard HIV care was compared to 180 HIV-positive children who received standard HIV care only through chart reviews. According to study results, children receiving palliative care alongside antiretroviral therapy have better physical and psychosocial health compared to children receiving only antiretroviral therapy. Increasing age was a contributing factor to better psychosocial and physical health in patients receiving palliative care. Emotional, social, and school functioning are important factors that determine treatment outcomes in children on antiretroviral therapy, and addressing those factors through palliative care will create a positive social change by improving treatment outcomes, quality of life, and longevity.

The hospice care population with cancer are often older adults who report many cancer-related symptoms experienced often in clusters. Most prevalent of these symptoms is fatigue and often it co-occurs with depressive symptoms and poor physical functioning. This dissertation examined fatigue, symptom clusters, depression, physical activity, and functional status in older adults with cancer. The aims of the literature review were to understand the relationship among physical functioning, cancer fatigue, fatigue-related symptom clusters, and their relationship with functional status In older adults. The literature related to these associations is insufficient and inconclusive. The methods section aimed to investigate the reliability and validity of the Center for Epidemiology Studies-Depression scale, Boston Short Form (CESD-10). Using Structural Equation Modeling (SEM) for confirmatory factor analysis, the factor structure of responses in a cross-sectional sample (N = 200) of adults with different types and stages of cancer was examined. Internal consistency reliability estimate Cronbach’s alpha =0.737. The CESD-10 four-factor model (positive affect, depressive affect, somatic complaints, and interpersonal challenges) fits the data well. The CESD-10 was a valid and reliable measure for assessing depressive symptoms in this study. The final section examined fatigue related symptom clusters and their relationships with functional status in older adult hospice patients with cancer (N=519). The fatigue-related symptom cluster (lack of energy, feeling drowsy and lack of appetite), significantly predicted poor functional status. Experiencing physical and psychological symptoms has a significant impact on functional dependence. Hospice healthcare professionals should be alert to older adults’ symptom cluster experience during assessment and management.