BACKGROUND: Literature suggests that many palliative home care patients wish to die at home. This study investigated determinants of caregiver burden among palliative home care patients, with particular interest in its relationship with place-of-death. Previous research has examined how patient care, health conditions, and characteristics of informal support relate to caregiver burden or place of death in palliative home care. However, none of the existing literature has focused on the role of caregiver burden on place of death or congruency between the patients’ preferred vs. actual place of death. It seems likely that, in light of the high dependence on informal care during the last days of life, that caregiver burden plays a significant role in place of death. A number of factors may contribute to the incongruence between preferred versus actual place of death. For example, informal caregivers may lack the necessary skills and/or knowledge to provide adequate care to terminally ill loved ones. They may also be unable to cope with the type of care required by his or her loved one. Longitudinal studies indicating increasing home death rates among palliative home care patients. Research attributed the increased rate of home death to expanding home care programs rather than improving home care services. The goal of this study was to provide home care agencies the means to increase rates of home death among home care patients who wish to die at home by better directing existing types of services to lessen caregiver burden and improving congruency between preferred versus actual place-of-death. OBJECTIVES: The aim of the research was four fold. First, it validated the caregiver burden items in the interRAI Palliative Care (interRAI PC) with self-report caregiver scales. The second section examined the determinants of caregiver burden. The third section examined the determinants of place of death and congruency between preferred vs. actual place-of-death. The final section examined the role of caregiver burden and place-of-death. METHODS: This was a prospective cross-sectional study that employed the Caregiver Burden Scale, the Burden Inventory, and the interRAI PC tool. The sample included all palliative home care patients and their caregivers who received formal care from one Ontario community care access centre. Health information was collected by case managers during regular assessment intervals. RESULTS: The three interRAI PC items measuring caregiver burden are an adequate measure of subjective stress burden. The sum of these items can be used to construct a caregiver burden scale. Determinants of caregiver burden were limited to unstable health and higher levels of self-reported depression, anxiety, and anhedonia. Patients who preferred to die at home were more likely to suffer IADL impairment, but not ADL impairment, and they were more likely to have completed a do-not-hospitalize order or do-not-resuscitate order. Patients whose caregiver was not a spouse or child relative were less likely to prefer home death. Further analyses showed a high level of agreement between preferred versus actual place of death. Overall, 57% of patients died at home, 68% of those patients who wished to die at home had managed to do so. Determinants that increased the likelihood of home death included completion of a do-not-hospitalize order, preference to die at home, and excessive sleep. However, the presence of a caregiver who was unable to continue providing care decreased the likelihood of home death. CONCLUSION: The purpose of this study was to examine the role of caregiver burden in place of death among recipients of palliative home care. Studies such as this are important to the patients, caregivers, and the agencies that provide home care. Results of this study confirm many of the determinants of home death reported by earlier research. It is unique in that it identifies the caregiver’s ability to continue providing care as an important determinant of home death. These results support that notion that the needs of the caregiver should also be examined when determining the needs of the patient and that the patient and caregiver should be considered a unit of care. It also illustrates the important role of advanced directives, more specifically do-not-hospitalize orders, among patients receiving palliative home care.

The purpose of this naturalistic inquiry was to describe, interpret, and link through voices of parents the lived experience of caring for a child with a lifelimiting and lifethreatening diagnosis within the context of existing social polices. Critical ethnology and Habermas critical theory framework together provided a broad framework from which to delve beneath the surface of everyday appearances and to produce theoretically informed accounts of social phenomena grounded in parents perceptions of caring for children who have palliative care needs. This framework provided the means to deconstruct power structures and relationships to reveal and redress oppression by unlocking silent discourses, emancipating voices, and empowering families. The stories of six parents were captured and presented a critical discourse concerning outcomes of the operationalized welfare state within a liberal paradigm that celebrates the autonomous individual as the appropriate unit of political analysis. <p>Four themes emerged that illuminated and provided a fuller understanding of the lived experiences of parenting a child with a lifelimiting and lifethreatening diagnosis. The initial theme, Mother as Caregiver, described the profound effect that assuming the caregiving role had on the lives of these mothers. The theme, Respite and Coping, explored and identified the overwhelming need for parents to obtain relief through respite, so they could parent better. The third theme, Surviving Past Expectancy, explained how their child, outliving their initial diagnosis, placed yet another new stress and burden on the family. The final theme, Getting Everyone on the Same Page, described frustrations parents experienced on a regular basis trying to find services and then act as coordinator for their child and family.<p>This study provided a unique and valuable optic to an untapped data source, which until now has remained silent. Results demonstrate the significance and meaning of the identified themes and their interrelatedness, and the study concludes with a discussion of the findings and policy implications. The main findings were the untapped resilience and strength of each participant, the uniqueness of each of their stories, and the reality that the harms associated with having a child with a lifelimiting and lifethreatening diagnosis can certainly be lessened through social polices that direct the provision and access to pediatric palliative care services to all who require them. A researchedbased understanding of the lived experience and the contextual nature of parents perceptions provides policymakers, politicians, and health care professionals an opportunity to offer specialized services and programs to children with lifelimiting and lifethreatening diagnosis and their families.

Bakgrund: Palliativ vård syftar till att lindra symtom vid livshotande sjukdom och innefattar en helhetsvård av patienten och dess familj samt en tydlig vårdfilosofi. Då arbetet rymmer en hög komplexitet och sjuksköterskan utsätts för emotionell påfrestning i mötet med sorg och död kan motivationen att stanna kvar i yrket komma att ifrågasättas.Syfte: Syftet är att beskriva sjuksköterskors upplevelser och hantering av svårigheter inom palliativ vård. Metod: En litteraturöversikt med analys av tio vetenskapliga artiklar har gjorts. Utifrån detta har två teman, upplevelser av svårigheter vid vård i livets slutskede samt hantering av svårigheter vid vård i livets slutskede framträtt med tre respektive fyra åtföljande kategorier.Resultat: Svårigheter blev framträdande i möten med patientlidande, död och sorg samt i anslutning till gränssättande. Meningsskapande var ett starkt motiv i sjuksköterskors val att stanna inom yrket och hantera de svårigheter som uppstod. Ett stödjande team och tidigare erfarenheter underlättade i arbetet med döende människor där de ansåg emotionell balans vara viktig att finna.Diskussion: Svårigheter och dess hantering är beroende av varandra. Meningsskapande bildar ett sammanhang genom ökad förståelse för svårigheter och går att härleda till KASAM komponenten begriplighet. Resurser för att möjliggöra meningsskapande bidrog med hanterbarhet. Det finns anledning att betrakta modellen 6S som ett redskap för sjuksköterskor i hanteringen av svårigheter inom vård i livets slut, då säkerställandet av en god död för patienten även ökar möjligheten till sjuksköterskors tillfredställelse i arbetet. / Background: The aim of palliative care is to alleviate symptoms that occur with life-threatening disease and involves a holistic care of the patient and family and a clear philosophy of care. As the work holds a high complexity and the nurse is exposed to emotional strain in the meeting with bereavement and death, the motivation to stay in the profession can be compromised.Aim: The aim of this study is to describe nurse’s experiences and management of difficulties in palliative care. Method: A literature overview containing an analysis of ten scientific articles has been done. Out of this two head themes emerged, experiences of difficulties in end of life care and managing difficulties in end of life care. Three and four subcategories came out of the two head themes.Result: Difficulties were prominent in the meeting with patient suffering, death and bereavement and in accession to limit setting. Finding meaning where a strong motive to nurses choice to stay in the profession and managing difficulties that occurred. A supportive team and past experiences facilitated the work with dying people where finding an emotional balance were important.Discussion: Difficulties and its management is interdependent. Finding meaning create coherence through increased understanding towards difficulties and is possible to trace to the component comprehensibility in Sense Of Coherence (SOC). The resources to enable finding meaning contributed to manageability. There is reason to consider the model of 6S as a tool for nurses in the management of difficulties in end of life care, since ensuring of a good death increases the possibility of work satisfaction for the nurses.

Abstract Background: Cancer is a leading cause of death worldwide and accounted for 7.6 million deaths, about 13% of all deaths, in 2008. Several factors can affect patients' quality of life such as physical and psychological symptoms, relationship to people around and the environment. In palliative care professionals need to have good knowledge in order to improve patient quality of life and to give them as good a life as possible in the final stages of life. Aim: The purpose of this overview study is to describe the experiences of quality of life in patients with incurable cancer. Method: We conducted an overview study that was based on ten scientific articles. All articles are qualitative studies, from the year 1995 - 2011, and are from Sweden, Finland, UK, Canada and the USA. Qualitative analysis was used to group the various themes and subthemes for overview study purpose. As a theoretical framework served Katie Erikson’s theory of caring, suffering, and health. Results: Four themes with a total of eleven subthemes were distinguished; the importance of relationships for the perceived quality of life, experiences that affect quality of life positively, experiences that affect quality of life negatively and impact of care environment on perceived quality of life. The first theme includes three subthemes: relationship to family and friends, higher power and personnel. The second theme includes four subthemes: to feel hope, to accept, to take responsibility and to be independent. The third theme includes two subthemes: to feel anxiety, shame and guilt, and to lose functions and roles. In the final theme, there are two subthemes: to being cared for at home and to be cared for in health care. Discussion: The method was discussed including the selection of keywords, databases, and how we came up with relevant articles on the result including manual search. The results were discussed on how patients' experiences affect their quality of life from the point of view of Katie Erikson's theories of caring, suffering and health. The fact that patients experience high or low quality of life depends on various factors connected to how patients themselves experience their health and the reactions from people around them. Keywords: Cancer, quality of life, palliative care, experience / Sammanfattning Bakgrund: Cancer är en ledande orsak till dödsfall i världen och svarade för 7,6 miljoner dödsfall, cirka 13 % av alla dödsfall, år 2008. Flera olika faktorer påverkar patienters livskvalitet såsom olika symtom, både fysiska och psykiska, relationer till omgivningar samt vårdmiljö. I palliativ vård bör vårdpersonal ha goda kunskaper om hur man kan höja patientens livskvalitet för att ge dem ett så bra liv som möjligt i livets slutskede. Syfte: Syftet med denna översiktstudie är att beskriva upplevelser av livskvalitet hos patienter med obotlig cancersjukdom. Metod: Vi har genomfört en översiktstudie som har baserats på tio vetenskapliga artiklar. Alla artiklar är kvalitativa studier, från år 1995 – 2011, och är från Sverige, Finland, Storbritannien, Kanada och USA. Kvalitativ analysmetod har använts för att gruppera i olika teman och subteman utifrån översiktstudiens syfte. Som teoretisk utgångspunkt valdes Katie Erikssons teorier om vårdande, lidande och hälsa. Resultat: Fyra tema med sammanlagt elva subtema urskiljdes; relationers betydelse för upplevelse av livskvalitet, upplevelser som påverkar livskvalitet positivt, upplevelser som påverkar livskvalitet negativt och vårdmiljöns betydelse för upplevelse av livskvalitet. Första temat innehåller tre subteman; relation till familj och vänner, högre makt och personal. Det andra temat innehåller fyra subteman; att känna hopp, att acceptera, att ta ansvar och att vara oberoende. Tredje temat innehåller två subteman; att känna oro, skam och skuld samt att förlora funktioner och roller. I det sista temat finns två subteman; att vårdas i hemmet och att vårdas på vårdenhet. Diskussion: I metoddiskussionen diskuterades bland annat valet av sökord, databaser och hur vi fick fram relevanta artiklar till resultatet. Resultaten diskuteras utifrån patienters upplevelser av deras livskvalitet med hjälp av Katie Erikssons teorier om vårdande, lidande och hälsa. Att patienterna upplever hög eller låg livskvalitet beror på olika faktorer som patienterna själva upplever, deras hälsotillstånd och omgivningens reaktioner. Nyckelord: Cancer, livskvalitet, palliativ vård, upplevelse

Bakgrund: Palliativ hemsjukvård är en växande vårdform i Sverige som ställer höga krav på involveringen av anhöriga. De anhöriga inom palliativ hemsjukvård befinner sig i en utsatt och omvälvande situation där vårdbördan kan upplevas mycket stor. Stödet från vården har en stor del i hur de anhöriga upplever situationen och ifall den sjuke kan erhålla vård i sitt hem. För att vården ska kunna stödja de anhöriga på ett lämpligt sätt krävs insyn i hur de anhöriga upplever sin situation. Syfte: Att beskriva anhörigas upplevelse av att ha en svårt sjuk närstående som vårdas med palliativ hemsjukvård. Metod: En litteraturstudie baserad på åtta kvalitativa studier publicerade mellan år 2002-2010. Använda databaser är CINAHL, PubMed, Academic Search Premier samt Nursing &amp; Allied Health Source. Även en manuell sökning gjordes. Dataanalysen utfördes enligt metoden beskriven av Friberg som är inspirerad av metaanalys. Resultat: Fem övergripande teman identifierades. Dessa är upplevelsen av en påverkad självbild och identitet, upplevelsen av stöd, upplevelsen av att sätta sig själv i andra hand, upplevelsen av att bli sviken av hemsjukvården samt upplevelsen av att vara tillsammans i dödens närhet. Huvudfyndet som är genomgående i alla teman är de anhörigas påverkade självbild. Diskussion: Resultatet diskuterades utifrån värdighetsbegreppets fyra delar meritvärdighet, den moraliska resningens värdighet, identitetsvärdighet och den universella mänskliga värdigheten. I resultatet blir de anhöriga inte sedda som en egen person, de upplever sig inte ha något val och de tvingas sätta sig själva i andra hand när de vårdar den sjuke. Författarna diskuterar hur detta kan påverka den anhörigas meritvärdighet, identitetsvärdighet och moraliska resningsvärdighet. / Background: In Sweden palliative home care is expanding rapidly and implies high demands on the next of kins’ involvement. Next of kin of relatives enrolled in palliative home care often find themselves in a demanding position and the burden of the care is experienced as heavy to bear. The support from professional caregivers’ can have an influence on how the next of kin experience his or her situation and if the sick relative can receive care at home. It is important for professional caregivers to understand how the next of kin can experience their situation to be able to support them adequately. Aim: To describe lived experiences as narrated by the next of kin of a relative with a severe condition who is cared for by palliative home care. Method: This article is a literature review based on eight qualitative studies published 2002-2010. The studies were found in the databases CINAHL, PubMed, Academic Search Premier and Nursing &amp; Allied Health Source and by a manual search. A data analysis inspired by meta analysis described by Friberg was performed. Result: In the result five main themes were identified; the experience of one’s affected self image and identity, experiences of support, the experience of putting yourself second, the experience of being let down by professional caregivers and the experience of being together close to death. The key finding in the result is the next of kins’ affected self image which can be found in all themes. Discussion: The concept dignity and its four components merit dignity, identity dignity, morale dignity and human dignity led the way in the discussion of the result. In the result the next of kin is not seen as an individual person, they experience that they do not have a choice whether to care or not and they always put themselves second. The writers discuss how these experiences can affect the next of kins’ merit dignity, identity dignity and morale dignity.

Bakgrund: Det beräknas att nästan var tredje person i Sverige kommer att få en cancerdiagnos i framtiden. Ungefär 40 % utav cancerfallen går inte att bota. Det finns en ökad förståelse för att den palliativa omvårdnaden är viktig för att fullända obotligt sjuka patienters välbefinnande. Syfte: Syftet med litteraturstudien var att beskriva hur patienter med obotlig cancer upplever palliativ omvårdnad. Metod: Studien har genomförts som en allmän litteraturstudie. Litteraturstudien baserades på tio vetenskapliga artiklar som valts ut systematiskt, granskats och analyserats för att slutligen ge en bild över valt område. Resultat: Patienter som fick delta i sin palliativa omvårdnad och ha ett nära samarbete med sjuksköterskorna upplevde ett bättre humör, minskad oro och bättre livskvalité. Informationen från vårdpersonalen upplevdes ofta som intensiv. Patienterna uttryckte att de upplevde flera olika aspekter av lidande. Dessa var både fysiska och psykosociala. Patienterna upplevde att deras psykosociala behov var otillräckligt uppfyllda utav vårdpersonalen. Konklusion: För att uppnå en god palliativ omvårdnad är det betydelsefullt att som vårdpersonal skapa en fungerande kommunikation, bekräfta patienternas psykiska lidande och inte överge patienterna. Patienterna bör få uppleva att de är värdefulla individer även om de inte kan botas. / Background: It’s an estimation that nearly one third of the Swedish population will get a cancer diagnosis in the future. About 40% of these cancer cases are incurable. There’s an increased understanding that the palliative care is important to improve the wellbeing of terminally ill patients. Purpose: The purpose of this study was to describe how patients with incurable cancer experience palliative care. Method: The study has been conducted as a literature review, based on ten scientific articles that have been systematically selected, reviewed and analyzed to give an image of the selected area. Results: Patients that were allowed to participate in their palliative care and work closely with nurses experienced an improved mood, reduced anxiety and better quality of life. The information from the medical staff was often perceived as intense. The patients expressed that they experienced various aspects of suffering. These were both physical and psychosocial. The patients felt that their psychosocial needs werein adequately met by the nursing staff. Conclusion: To achieve good palliative care it’s important with an appropriate communication, confirmation of the psychological suffering and to not abandon patients. Patients should experience that they are valued individuals even if they can not be cured.

Bakgrund: Palliativ vård bygger på ett förhållningssätt där målet är att förebygga och lindra lidande samt förbättra livskvalité hos patienter och närstående. Vården tillhandahålls utifrån ett helhetsperspektiv vilket innefattar andliga och existentiella frågor. Dessa frågor kan vara komplexa att hantera för sjuksköterskan. Arbetet kan därför kännas slitsamt och påfrestande men samtidigt vara berikande och utvecklande. Förmåga att bemästra svåra situationer underlättas av att sjuksköterskan har goda kunskaper om existentialfilosofi och livsfrågor samt får stöd i yrkesrollen. Hur sjuksköterskan själv ser på sjukdom, lidande och död påverkar i sin tur mötet med patienterna. Syfte: Att beskriva sjuksköterskors erfarenheter av att möta döende patienter med existentiella och andliga behov inom palliativ vård Metod: Litteraturbaserad studie med grund i kvalitativ forskning utifrån 12 vetenskapliga artiklar. Resultat: Tre kategorier med tillhörande underkategorier utgör resultatet: Bygga en tillitsfull relation; Främja personlig växt; Hantera känslomässigt påfrestande situationer. Slutsats: Det krävs en tillitsfull relation för att sjuksköterskor ska kunna identifiera patienters andliga och existentiella behov. Sjuksköterskor utvecklar personlig växt utifrån relationer med patienter men upplever samtidigt att de ställs inför känslomässigt påfrestande situationer, vilket kräver stöd och handledning i yrkesrollen samt en balans i tillvaron. / Background: Palliative care is based on an approach where the purpose is to prevent and palliate suffering and improve quality of life for patients and their relatives. The care is based on holism, which means that both spiritual and existential aspects are included. This can be very complex to handle for the nurse. Therefore, nurses can experience their work situation as strenuous and trying at the same time as enriching and developing. An ability to handle difficult situations is, together with professional support, facilitated by the fact that nurses have sound knowledge of existential philosophy and existential questions. Significant when meeting the patients is the nurse’s own experience concerning illness, suffering and death. This relation influences the contact with patients. Aim: To describe nurses’ experience of meeting dying patients with existential and spiritual needs in palliative care. Method: Literature-based study on qualitative research from 12 scientific articles. Result: Three main categories with subcategories emerged; Developing a trusting relationship; Promote personal development; Dealing with emotionally stressful situations. Conclusion: A relation based on trust is required if nurses shall be able to identify a patient’s spiritual and existential needs. Nurses gradually increase personal development from relations with patients but simultaneously experience that they are confronted with emotionally stressful situations which require support and professional guidance together with a balanced life.

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No description available.

Bakgrund: Palliativ vård betyder lindrande vård där döden ses som en normal och naturlig process. Det innebär att varken påskynda eller skjuta upp döden för patienten, samt att ge en god omvårdnad utifrån ett helhetsperspektiv. Omvårdnaden av patienter i livets slutskede på sjukhus kan vara påfrestande för sjuksköterskor. Syfte: Syftet med studien var att få ökad förståelse för sjuksköterskors upplevelser av att vårda patienter i livets slutskede på sjukhus. Metod: Metoden som användes var en litteraturöversikt där tretton artiklar analyserades. Resultat: Resultaten presenteras utifrån fyra kategorier; faktorer som bidrar till en god pallia-tiv vård, faktorer som påverkar sjuksköterskan negativt, kommunikationen ett viktigt verktyg och när dödsfallet är ett faktum samt tretton underkategorier. Sjuksköterskor upplevde att när de bidragit till en värdig död hade de lyckats i sin omvårdnad. Delar av den palliativa vården kan upplevas som berikande för sjuksköterskor, men den innebär också stora påfrestningar. Påfrestningarna ansågs kunna minskas med hjälp av mer tid, samt kunskap och utbildning inom palliativ vård. Konklusion: Sammanfattningsvis visade denna studie att sjuksköterskor har en viktig uppgift i samband med att vårda patienter livets slutskede, samt att många fakto-rer spelar in för att sjuksköterskor ska känna att de ger en god palliativ vård till patienter i livets slutskede. / Background: Palliative care means relieving care where death is seen as a normal and natural process. It means that either hurry up or postpone death for the patient, and to provide good health care from a holistic perspective. Nursing care of patients dying in hospital can be stressful for nurses. Purpose: The purpose with the study was to increase the understanding for nurses experiences of the caring for dying patients in hospital. Method: The used method was an systematic literature summary were thirteen articles has been analyzed. Result: The result is presented on the basis of four main category: factors that contribute to a good pallia-tive care, factors that affect nurses negatively, communication a major instrument and when death is a fact, together with thirteen subcategories. Nurses felt that when they contribute to a dignified death, they had succeded in their care. Parts of the palliative care feels rewarding for the nurses, but it also involve great strains. The strain was considered to be reduced by using more time, knowledge and training in palliative care. Conclusion: The study concludes that nurses has an important role in the care for dying patients, and many factors is involved when they provide a good palliative care.