Palliative care is founded on a holistic attitude, with the goal to alleviate suffering when a cure is no longer possible. Palliative care affirms life and regards dying as a normal process, providing possibilities of a quality time for the patient and family. Studies show that an increasing number of people choose to live the final phase of their life in their own home. A requirement for end of life care is an effective team work, where the nurse is responsible for more advanced care, and the caregiver’s provides the immediate care. The purpose of this study was to gain insight of caregiver’s experiences with patients in end of life care. An interview was conducted with seven caregivers, where the material is processed by a content analysis with qualitative approach. The results showed that the caregivers were engaged in meeting with dying patients and their families. Three themes emerged: to prioritize, to give and receive support, and to care with dignity. The following conclusions were found; Time and continuity is an essential constituent of the care for patients in palliative care. Caregivers should be given time for support and reflection. Skilled personnel with education and good knowledge of palliative care are needed in the care of palliative patients and their families.

Abstract   Back ground: Home based care is a meaningful activity giving patients and their families a chance to live their lives as close to normal as possible. Advanced palliative care is today provided at home, although geography does play a role in shaping that care. A rural setting can mean that conditions for such care differ from those in urban areas. Purpose: To describe the experiences of district nurses in palliative home care settings in a rural community. Method: Semi structured interviews with seven district nurses. The interviews were recorded digitally and transcribed in a precise fashion. A method of qualitative analysis of the contents, inspired by Burnard, was used to analyze the material. Results: Palliative care places high demands on the competency and experience of district nurses. The conditions of a rural setting contribute to the structure of such care in so far as its organization and prioritization. The work of the district nurses involved was marked by cooperation and peer support. The fact that the care for patients varied between communities was however, seen as unfair. Conclusion: The study expands the body of knowledge of the experiences of district nurses. It also clarifies the conditions that influence palliative care in a rural community. Hopefully this study will contribute to further development of palliative home care, and enable those affected to receive care on more equal terms.

Döden angår oss alla och vår kulturella bakgrund har stor betydelse för hur vi möter den. Palliativ vård fokuserar på att ge stöd och lindring till döende patienter för att öka deras livskvalitet. Av Sveriges invånare har var sjätte utländsk bakgrund och detta ställer andra och delvis nya krav på sjukvården. Syftet med studien var att belysa faktorer som påverkar sjuksköterskans palliativa omvårdnad till patienter från andra kulturer. Studien är en litteraturöversikt där tolv artiklar analyserats utifrån syftet. I resultatet finns många olika faktorer som påverkar sjuksköterskans omvårdnadsarbete av palliativa patienter i en mångkulturell vårdsituation. Resultatet delades upp i tre huvudkategorier: kulturell kommunikation, kulturell medvetenhet/kunskap och kulturella skillnader/behov. För att kunna ge patienter med annan kulturell bakgrund en palliativ omvårdnad med hög kvalitet behövs medvetenhet och kunskap hos sjuksköterskan om deras specifika behov. Utvidgad utbildning och diskussion behövs i ämnet och svenska empiriska studier som belyser dessa patienter och anhörigas behov. Det är nödvändigt att både den specialiserade palliativa vården och övrig vård tar del i både forskning och utbildning, eftersom palliativa patienter från andra kulturer finns inom de flesta specialiteter.

Purpose: The purpose of this study is to highlight what is perceived as- and what is not perceived as- supportive and comforting, by the sick child in palliative care, and by its family. Method: Systematic literature review in which only scientific articles from the years 2001-2010 have been included. Analysis: A method inspired by qualitative content analysis was used. Results: The analysis revealed five categories of what the sick child and its family experienced as supportive and comforting - and what was perceived negatively - in the context of palliative care for children. The results showed that it was very important to have competent, dedicated and compassionate staff that not only care for the child but also see to the whole family. Recurrence factors were the importance of straight and honest information and communication and to be close and involved in the child's care. Discussion: The results summarized available research on comfort to families in the palliative care for children and may be of importance in clinical practice due to the lack of depth in the available literature. Conclusion: For a nurse to be present and accessible, appears to be the greatest help for grieving families.

Background: The need for palliative care at home hasincreased in recent years as more people wish to die in their own homes. Toperform good palliative care by addressing patients' needs and desires of lifecare requires a better understanding of how nurses experience palliative careat home.   Aim: The aim of the study was todescribe nurses experiences of caring for patients in palliative care in homecare.   Method: The method was asystematic literature review and the article search resulted in elevenqualitative articles. An inductive qualitative approach was used where nursesdifferent experiences was identified.   Results: Our results are reportedunder two themes:Opportunities and Barriers. Palliative carein home care experiencedby nurses in variousways in which personalgrowth, experience, guidance,trustful communication, cooperation and self-knowledgewas opportunies thatemerged. Barriers experienced by nurseswas ineffective communication,lack of time and abuseof power in palliative care at home. A trusting relationship betweennurses, patients andrelatives, continuous mentoring and reflectionwas considered by nurses to be equippedto carry out worthy of-life care.   Conclusion: This literature review shows the need for knowledgeabout how societynurses perceive opportunitiesand barriers inpalliative care in order toeventually be able to develop and assure the quality of care.

Smärta i livets slutskede behöver inte bara innebära det fysiska obehaget, utan kan även ha psykiska, sociala och existentiella dimensioner. Existentiell smärta har en stor plats i den palliativa vården, kropp och själ hör ihop. Tankar kring livets mening, skuld och vad som händer efter döden kan ge existentiell smärta. De existentiella behoven är enligt många studier försummade. Vårdpersonal undviker ofta dessa frågor.Syftet med studien var att beskriva existentiell smärta hos patienter med cancer i palliativt skede. Metod: En allmänlitteraturstudie genomfördes med kvalitativa artiklar. Resultatet visade att existentiell smärta förekom i stor omfattning. Informanterna upplevde ensamhet och skuldkänslor och smärtan beskrevs ofta i fysiska termer. Smärtan hade också samband med förlust av olika funktioner. Det fanns även tankar kring andlighet och rädsla för den okända framtiden.Diskussion: Det är viktigt att sjuksköterskan är uppmärksam på patientens behov av närhet eller ensamma stunder. Vårdpersonal kan även hjälpa patienten att återfinna sin autonomi genom att identifiera de funktioner som faktiskt finns kvar. Genom samtal kan patienten få stöd att orka leva de sista dagarna samt att möta den okända framtiden. Slutsatsen är att det krävs god kunskap i kommunikation och smärtbehandling för att kunna identifiera och lindra existentiell smärta. / Pain in the end of life means not only the physical discomfort, but can also have psychological, social and existential dimensions. Existential pain plays a major role in palliative care. Dealing with the meaning of life, guilt and death can provide existential pain. The existential needs are as many studies indicate neglected. Health professionals often avoid these issues. The purpose of this study was to describe the existential pain in cancer patients in a palliative setting. Method: A literature review was conducted with qualitative articles. The results showed that existential pain was widespread. The informants experienced loneliness and guilt and the pain was often described in physical terms. The pain was also associated with loss of various functions. There were also thoughts about spirituality and fear of the unknown future. Discussion: It is important that the nurse is attentive to patient’s needs for closeness or lonely moments. Medical professionals can also help patients regain their autonomy by identifying the features that actually exist. Through conversation, the patient may receive strength to live the last days and to face the unknown future. The conclusion is that in order to identify and alleviate existential pain it requires a good knowledge in communication and pain management.

<p>Bakgrund: Vid palliativ vård ligger fokuset på patienten, medan anhöriga kommer i andrahand. Det är viktigt att de inte åsidosätts eftersom de utgör ett stort stöd och ger trygghetoch kärlek till den sjuke. I Sverige har det blivit vanligt att familjen tar hand om den döende i hemmet med stöd från hälso- och sjukvård. För många är detta en självklarhet,medan det för andra kan innebära stora uppoffringar. Syfte: Syftet med studien var att belysa anhörigvårdarens upplevelser av att vårda en närstående med cancer i livetsslutskede i hemmet. Metod: Metoden var en litteraturstudie. Studien resulterade i femhuvudkategorier: (1) Vill vara närvarande, (2) Osäkerhet och rädsla en del av vardagen, (3)Otillräcklig information, (4) Stöd från vårdpersonalen är betydelsefullt och (5) Upplevelser av psykisk och fysisk påfrestning. Resultat: Resultatet visar att anhörigvårdare i allmänhetär outbildade inom området, vilket kan leda till att de känner sig osäkra och rädda för att göra fel. Anhörigvårdarna upplever att informationen som ges angående den sjukessjukdom och behandling som otillräcklig. Information och stöd från vårdpersonalenuppfattas som mycket viktig.</p> / <p>Background: In palliative care the focus is on the patient, while relatives are perceived as being of secondary importance. It is, however, important that they are not set aside as they are a great support and provide security and love for the sick. In Sweden, it has become common for the family to take care of the terminally ill at home with support of health care services. For many, this is a natural choice, while for others it can mean big sacrifices. Aim: The aim of this study was to illustrate the experience that the carers have in caring for terminal cancer patients in the final stages of their illness in the home. Method: The method was a qualitative literature review. The study resulted in five main categories: (1)Want to be present, (2) Uncertainty and fear in day to day work, (3) Insufficient information, (4) Support from health professionals is important and (5) Experiences of mental and physical stress. Result: The result shows that carers are generally uneducated in the field, which can lead to feelings of insecurity and fear of making mistakes. Carers often feel that the information provided about the relatives’ illness and treatment is inadequate and that the information and support from health professionals is perceived as very important.</p>

Pediatric cancer imposes a threat on the child’s life and approximately every fifth child diagnosed with cancer will die due to his or her disease. The overall aim of this thesis was to explore palliative care of children with cancer and bereaved family members. The thesis includes data collected retrospectively from medical records, a nationwide questionnaire directed to bereaved parents, a nationwide questionnaire for bereaved siblings and individual interviews with children in cancer care. Most children dying from cancer were recognized as being beyond cure at time of death; for some this recognition occurred close to death, leaving little time for potential personal preferences (Paper I). Bereaved parents and siblings noticed extensive suffering in the child close to death (Paper II, VI), with physical fatigue being the most commonly reported symptom irrespectively of age and diagnosis of the child (Paper II). Bereaved parents’ psychological well-being appears to be closely related to experiencing suffering in the dying child (Paper III) but also to high-intensity treatment (with bone marrow transplant as the example) of a child that still dies from his or her disease (Paper IV). Bereaved siblings experience a lack in information at the end of their brother’s or sister’s life and report feeling poorly prepared for the loss. An increased risk of anxiety was seen in siblings whom nobody talked to about what to expect at the time of death of their brother or sister (Paper VI). When caring for children with cancer it is vital to take the individual child’s awareness and preferences regarding information into consideration. Bereaved parents who have communicated with their child about death expressed that this often occurred at the child’s own initiative (Paper V) and simple means such as fairy tales could be used to facilitate communication. Ill children themselves expressed in interviews wanting honest, but still hopeful information regarding bad news (Paper VII). The results of this thesis stress the importance of striving to achieve good communication and keeping a family perspective throughout care of children with cancer.

Humor är så integrerad i mänskliga interaktioner att det ofta uppstår spontant och utan eftertanke eller planering. Humor förknippas vanligtvis med skratt, glädje och känslor av gemenskap och välbefinnande. Forskning visar att det är patienter som initierar mest humor i vårdrelationer. Denna litteraturstudie är en metasyntes och består av tio vetenskapliga artiklar. Syftet var att belysa obotligt sjuka patienters upplevelse av humor i den palliativa vården.  Det visade sig att humor var viktig och tjänade otaliga funktioner. Enligt patienterna var humor en värdefull del av kommunikationen generellt och den medkännande personliga omvårdnaden i synnerhet. Humor var närvarande igenom alla studiers intervjuer och observationer. En stor majoritet av patienterna värderade humor mycket både före och under sin sjukdom. Humor beskrevs av patienter som en bro till deras friska identitet. När vårdpersonalen använde humor kände sig patienter sedda som människor inte bara som mottagare av vård. Mild humor var den mest utbredda och bestod av leenden, spontana kommentarer, godmodiga skämt, stunder av värme och lättsam lekfullhet. Den empatiska, respektfulla, terapeutiska användningen av humor som personalen skapade genom sitt sätt att vara, skyddade patienternas integritet, självkänsla och känsla av värde. Humor hade en stor betydelse i vårdrelationer som blev djupare och mera personliga. Humor visade sig vara en viktig del i den medkännande och mera personliga omvårdnaden. Kombinerat med professionell skicklighet och empati, är humor för värdefull för att förbises.

Background: It is becoming increasingly common in health care that relatives have a significant role in palliative care at home. Some patients receiving care in a palliative phase choose to pass away at home, which implies that relatives need to take on a great responsibility for the patient's care. Aim: To describe the experiences and needs of relatives that provide support from the nurse in palliative care at home. Additionally the aim was to examine the method of data collection of all articles included in the thesis. Methodology: The applied methodology is a literature study of descriptive character based on fourteen scientific articles, searched and found on the Cinahl and PubMed databases, as well as through manual research. Result: Relatives provide care around the clock, resulting in limitations in their own daily activities and ignoring their own needs. The nurse’s support was portrayed both as deficient and satisfactory. Support to the relative in terms of relief facilitated the role for the relative as nurturers and reduced feelings of tiredness, demand, loneliness, and isolation. Decent availability and a good relationship with the nurse could reduce feelings of insecurity and fear with the relative. For the nurse to give the right information and communication to the relative could facilitate for the relative, and reduce feelings of confusion and frustration as well as the burden of the care. To get good bereavement support in the form of phone calls, letters and home visits could strengthen the entire family. Conclusions: Relatives need for various forms of support from nurses during and after the palliative care. Emotional support, bereavement support, accessibility, good relationship with nurses, information, and communication are essential for maintaining well-being of the caregiving relative. / Bakgrund: Det blir allt vanligare inom hälso- och sjukvården att närstående får en betydande roll inom den palliativa vården i hemmet. De patienter som har sin sista önskan om att få dö hemma ger sina närstående ett stort ansvar. Syfte: Att beskriva närståendes erfarenheter inom palliativ vård i hemmet samt beskriva närståendes behov av stöd från sjuksköterskan inom palliativ vård i hemmet. Vidare var syftet att beskriva de inkluderade artiklarnas datainsamlingsmetod. Metod: Litteraturstudien använde sig av en beskrivande design baserad på fjorton vetenskapliga artiklar som söktes fram via databaserna Cinahl och PubMed samt genom manuell sökning. Resultatet: Visade att närstående kände ansvar dygnet runt, vilket resulterade i begränsning i vardagen då de satte sig själva och sina behov åt sidan. I de granskade artiklarna framställdes stödet från sjuksköterskan både som bristande och tillfredsställande. Vidare framkom att stöd i form av avlastning underlättade rollen som närståendevårdare och minskade känslor av trötthet, krav, ensamhet och isolering. God tillgänglighet och en bra relation med sjuksköterskan kunde minska känslor av osäkerhet och rädsla. Att ge rätt information och kommunikation kunde underlätta för närstående och reducera känslor av förvirring, frustration samt underlätta vårdtyngden. Att få bra efterlevandestöd i form av telefonsamtal, brev och hembesök kunde stärka hela familjen. Slutsats: Närstående har ett behov av stöd från sjuksköterskan under och efter vårdtiden genom avlastning, emotionellt stöd, tillgänglighet, god relation med sjuksköterskan, information och kommunikation samt bra efterlevandestöd.