The growing older adult population, their age-related morbidities, and lifelimiting chronic illnesses increase the demand for quality yet cost-effective end of life (EOL) care. Losing a loved one creates emotional turmoil, heightened uneasiness, and EOL uncertainties for family members. Understanding the complex needs of family members and supportive actions deemed most significant to them can guide nurses to enhance EOL care, encouraging palliation and peaceful death experiences. This study used a qualitative descriptive exploratory design guided by story theory methodology to explore the dimensions of the health challenge of losing a loved one who had been in an acute care setting during the last three months of life, the approaches used to resolve this health challenge, and turning points that prompted decisions about a loved one’s care with 15 older adults residing in a Continuing Care Retirement Community (CCRC) in Southeast Florida. Theoretical grounding for this study was Watson’s (1988, 2002) theory of human caring and Smith and Liehr’s (2014) story theory. Older adults’ stories were analyzed through theory-guided content analysis. Themes that describe the health challenge include moving from painful holding on to poignant letting go, uneasiness that permeates everyday living and precious memories, patterns of disconnect that breed discontent, and pervasive ambiguity that permeates perspectives about remaining time. Approaches to resolve this challenge include active engagement enabling exceptional care for loved ones, appreciating the rhythmic flow of everyday connecting and separating to get by, and embracing reality as situated in one’s lifelong journey. Failure to establish normalcy, coming to grips with abrupt health decline/demise, and recognition – there’s nothing more to do – were the turning points identified by CCRC residents. Older adults’ vivid recollections of losing a loved one and willingness to share EOL concerns as well as recommendations regarding support of family members who are facing this challenge serve as invaluable guidance for improving EOL care for dying patients and their family members. / Includes bibliography. / Dissertation (Ph.D.)--Florida Atlantic University, 2016. / FAU Electronic Theses and Dissertations Collection

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.

Vård i livets slutskede är något som påverkar sjuksköterskor och vårdpersonal på olika sätt, exempelvis emotionellt. Vård i livets slutskede, även kallad palliativ vård, syftar till att lindra lidande för patienter i deras sista tid i livet. Litteraturstudiens syfte var att belysa upplevelserna av att vårda dessa patienter. Resultatet visade att upplevelserna påverkades av kulturen och de egna erfarenheterna. De teman som framkom var - omvårdnad av patienten, mötet med närstående, samarbete i teamet och existentiella upplevelser. Svårigheter med att vårda patienter i livets slutskede kunde exempelvis bero på bristande kommunikation och otillräcklig erfarenhet. Dock ansåg flertalet att arbetet var givande och utvecklande för dom och de hade en positiv inställning till palliativ vård och döden, vilket ofta kom med erfarenhet. Forskning samt fördjupad kunskap inom ämnet är därför viktigt för en ökad förståelse för att förbättra den palliativa vården för patienten samt sjuksköterskans arbetsmiljö. Även en förbättring i kommunikationen i teamet för palliativ vård behövs för att optimera arbetet med patienter i livets slutskede samtidigt som det främjar en förbättrad arbetsmiljö för sjuksköterskor och vårdpersonal. / End-of-life care affects nurses and health professionals in different ways. End-of-life care, so called palliative care, aims to facilitate for patients in their remaining days of life. The purpose of this study was to illustrate the experience of caring these patients. The study was conducted as a literature review, based on 15 articles. The results showed that the experiences were affected both by culture and what themselves have gone through. Four themes emerged; Caring for the patients, meeting with relatives, co-operation of the team and existential experiences. Difficulties in end-of-life care could for exemple be due to lack of communication and lack of experience. However, the study also showed that the majority percieved their work as rewarding and fulfilling and they had a positive approach to palliativ care and dying which often came with experience. Further research and deepend knowledge in the area are important for a better understanding and to improve palliative care for patients and the working environment for healthcare workers. Also an improvement in communication in palliativ care is needed to optimize the work with patiens in the final stages of life and at the same time a better work environment for nurses and other healt professionals.

Bakgrund: Det kan vara svårt för föräldrar till barn som vårdas i livets slutskede att inse att deras barn är döende. Många existentiella frågor och tankar uppstår hos föräldrarna. Trots att omfattningen av insatserna för vård i livets slutskede ökar finns det lite forskat inom området. Det kan resultera i att föräldrarnas önskemål och behov inte blir uppmärksammade. Syfte: Syftet med litteraturstudien var att belysa föräldrars upplevelser av att ha ett barn som vårdas i livets slutskede. Metod: En allmän litteraturstudie genomfördes. Utifrån studier publicerade i vetenskapliga artiklar sammanställdes fynd som svarade på syftet och bildade kategorier. Resultatet diskuterades utifrån Aaron Antonovskys KASAM. Resultat: Resultatet presenteras utifrån fyra kategorier; Föräldrars upplevelse av information och kommunikation, Föräldrars upplevelser av att vara delaktiga i omvårdnaden, Föräldrars upplevelser av relationen till vårdpersonalen och föräldrars emotionella och spirituella upplevelser. Resultatet svarar för föräldrarnas upplevelser av att ha ett barn som vårdas i livets slutskede. Diskussion: KASAM är individuellt och föräldrars nivå av KASAM kan påverka deras förmåga att hantera att deras barn vårdas i livet slutskede. KASAM kan inte påverkas över en natt utan förändring sker under längre tid. Sjuksköterskans uppgift blir att individanpassa hjälpen efter föräldrarnas förmåga för begriplighet, hanterbarhet och meningsfullhet. / Background: It can be hard for parents with a child in end-of-life care to comprehend that their child´s dying. Many existential questions arise from the parents. Despite increased efforts to improve end-of-life care for children, research into this is sparse. That results in that the needs and wishes of the parents are overlooked. Aim: The aim of the study was to illuminate parents’ experiences of having a child in end-of-life care. Method: A literature review was conducted. Based on studies published in scientific articles findings that responded to the purpose were compiled. This created the result’s four categories. They are discussed in relation to Aaron Antonovsky’s theory of SOC. Results: The results are presented as they relate to parent’s experiences from information and communication, being part of the care of the child, the relationship with staff and parents emotional and spiritual experience. The categories account for parent´s experiences from having a child cared for at the end-of-life. Discussion: SOC is individual and parents' level of SOC affects their ability to manage their children's palliative care. SOC can´t be altered overnight, change occurs over time. The nurse´s assignation is to individualize the help for the parents' capacity for comprehensibility, manageability and meaningfulness.

<p><strong>BACKGROUND</strong>: Several people die every year. The numbers of deceased in Sweden were 91449 in 2008. This often brings bereavement for the relatives and in hospital with end-of-life care it can be important for the health professionals to support and also take care of the relatives. <strong>AIM</strong>: The aim of this study is to illuminate relatives’ experiences of the caring situation with end-of life-care when a close relative is dying <strong>METHOD</strong>: Literature review. A number of thirteen scientific articles were analyzed. These were previous research of both qualitative and quantitative methods. <strong>RESULT</strong>: The result shows that many relatives are in need of a good treatment from health professionals, where the treatment includes components like providing support, providing information, creating a good relationship and having a good communication. A trust in health professionals was important for the relatives because it brought knowledge that good care was provided to the patient. It also indicates that participation was important in end-of-life care. There was a safety in having someone at the relative´s side who could offer aid. A quiet and calm environment was positive. <strong>DISCUSSION</strong>: The nurse´s experience and knowledge about bereavement is an important part of the care providing to the relatives.</p> / <p><strong>BAKGRUND</strong>: Varje år dör många människor och i Sverige dog 91 449 människor år 2008. Detta medför sorg för många närstående och medför även att vårdpersonalen har en stor del i att ge stöd och ta hand om de närstående samtidigt som de tar hand om vårdtagaren. <strong>SYFTE</strong>: Syftet är att belysa närståendes upplevelser av omvårdnadssituationen kring vården vid livets slut av en nära anhörig. <strong>METOD</strong>: Litteraturstudie. Tretton vetenskapliga artiklar analyserades. Dessa var tidigare forskning av både kvalitativa och kvantitativa studier. <strong>RESULTAT</strong>: Resultatet visar att många närstående är i behov av ett gott bemötande från vårdpersonal, där det med bemötande ingår komponenter som att ge stöd, att ge information, att skapa en god relation och att ha en god kommunikation. Ett förtroende för vårdpersonalen var viktigt för att närstående skulle veta att en god omvårdnad gavs till vårdtagaren. Det visar även på att delaktighet var betydelsefullt i vården vid livets slut. Det var en trygghet att ha någon vid sin sida som kunde erbjuda stöd. En lugn och behaglig miljö med hemtrevlig inredning var positivt. <strong>DISKUSSION</strong>: Sjuksköterskans erfarenhet och kunskap om sorg har en betydelse i hur närstående tas om hand.</p>