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. / 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.

Syfte: Syftet med litteraturstudien var att beskriva allmänsjuksköterskans palliativa omvårdnadsarbete med cancersjuka patienter. Metod: Deskriptiv litteraturstudie baserad på 15 artiklar som sökts i databaserna PubMed och Cinahl. Analysen identifierade fyra huvudkategorier som ligger till grund för resultatet. Huvudresultat: Att arbeta med palliativ vård är ett arbete som sjuksköterskor anser påverkar patienter inom flera olika aspekter, både fysiskt, psykiskt, socialt och andligt. Ett sätt som sjuksköterskan kan hjälpa patienten är att informera och utbilda patienter vilket har visat ge en viss lindring hos patientens symtom. Sjuksköterskan har även en viktig roll i att koordinera omvårdnadsarbetet och framförallt se till att patienten har det så bra som omständigheterna tillåter. Stöd av erfarna kollegor ansågs vara ett bra hjälpmedel och sambandet mellan erfarenhet och trygghet i yrkesrollen bidrog till en trygghet som förs vidare till patienten. Slutsats: De viktigaste perspektiven som framkom inom palliativ vård var fysiskt, psykiskt och socialt. Det andliga perspektivet skiljer sig dock från olika kulturer och behöver studeras mer i Sverige för att kunna tillämpa riktlinjer och arbetssätt. Det framkom även att utbildning behövs för att känna sig trygg i sin arbetsroll när sjuksköterskor arbetar med döende människor som vårdas palliativt. / Aim: The aim of this study was describe nurses’ palliative care with patients who suffer from cancer. Method: Descriptive study based on 15 articles sought in the databases PubMed and Cinahl. The analysis identified four main categories underpinning for the results. Main result: Working with palliative care is a task that nurses believe affects patients in various aspects, physically, mentally, socially and spiritually. One way that the nurse can help the patients is to inform and educate them, which has been shown to give some relief of the patient's symptoms. The nurse also has an important role in coordinating nursing care and, above all, to ensure that the patient is as comfortable as circumstances permit. The support of experienced colleagues was considered a great tool and the relationship between experience and confidence in the professional role led to a security that is passed on to the patient. Conclusion: Within palliative care it is revealed that the strongest perspectives were physically, mentally and socially. The spiritual perspective differs from different cultures and needs to be studied more in Sweden to be able to apply guidelines and procedures. It also emerged that education is needed to feel secure in the role as a nurse when working with dying people who are cared for palliative

This study utilized a combination of intrinsic and instrumental case studies to describe the experience of four dying persons and their significant relations, as they engaged in music therapy sessions designed with the goal of facilitating relationship completion. The four primary participants were inpatients of the Baycrest palliative care program who were diagnosed with a terminal illness and a life expectancy of less than six months. Two spouses who were involved in music therapy sessions were co-participants. I developed four case studies to represent each of the rich and detailed stories. Through the use of narrative research methods I was able to describe, interpret, and understand the complexity held within the multiple data sources that informed each case study. Data sources included: music created, utilized, recorded, and/or discussed in music therapy sessions; discussions during music therapy sessions; the researcher’s field notes; formal notes placed in the participant’s medical charts; the formal written assessment; transcriptions of audio-taped music therapy sessions; interviews; interview transcriptions; artistic pieces crafted by myself that emerged from the experiences of the participants as reflected in their interviews, and weekly participation in sessions which were verified by the participants; and other artistic material. The rich knowledge that emerged from the individual case studies informed a cross-case analysis where global themes were identified from a thematic analysis of participants’ experiences; and process motifs arising from the progression of participant engagement in music therapy are described. Global themes included: love; loss; gratitude; growth/transformation; courage/strength; and goodbye. The five process motifs that emerged were: (1) music therapy helps and was valued as a means of sharing the participants’ perceptions of their situation. (2) music therapy provides a safe place to become aware of, explore, and express feelings. (3) music enhances communication. (4) music therapy techniques provide creative avenues for self-expression. (5) music therapy provided a vehicle for revisiting and reminiscing. The thesis concludes with a summary of the knowledge revealed and a discussion of implications for music therapists and health care professionals, as well as a presentation of final thoughts and reflections on my role as researcher in this study.

Bakgrund: I Sverige är det 31000 stycken människor som har palliativ vård. Cancer är oftast den vanligaste orsaken till palliativ vård. Palliativ vård handlar om att vårda hela människan och lindra symptom. Hopp är motiverande impuls som driver människan till att hantera svåra och stressiga situationer. Syfte: Syftet med litteraturstudien är att belysa upplevelser av hopp i palliativ vård vid cancer ur ett patientperspektiv. Metod: Studien är gjord som en allmän litteraturstudie med systemisk ansats. Till hjälp används 14 artiklar. Resultat: Fynden som hittades var överlevnad, mål, framtiden, meningen med livet, relationer till andra, symptom kontroll och självkänsla. Slutsats: Patienten bör få vara delaktig i sin vård och känna tillit till vårdpersonalen. Vårdpersonalen kan hjälpa till med det genom att vara ärlig. / Background: In Sweden it is 31000 persons who have palliative care. Cancer is usually the most common cause palliative care. Palliative care is about nurturing the whole person and relieves symptoms. Hope is the motivating impulse that drives man to deal with difficult and stressful situations. Purpose: The purpose of literature is to illuminate the experience of hope in palliativ care for cancer from a patient perspective. Method: The study is designed as general literature review with a systematic approach. For help using 14 items. Results: The findings that were found were survival, goals, future, meaning of life, relationships with others, symptom control and self-esteem. Conclusion: Patients should be involved in their care and have confidence in caregivers. Health professionals can help with that by being honest.

This study utilized a combination of intrinsic and instrumental case studies to describe the experience of four dying persons and their significant relations, as they engaged in music therapy sessions designed with the goal of facilitating relationship completion. The four primary participants were inpatients of the Baycrest palliative care program who were diagnosed with a terminal illness and a life expectancy of less than six months. Two spouses who were involved in music therapy sessions were co-participants. I developed four case studies to represent each of the rich and detailed stories. Through the use of narrative research methods I was able to describe, interpret, and understand the complexity held within the multiple data sources that informed each case study. Data sources included: music created, utilized, recorded, and/or discussed in music therapy sessions; discussions during music therapy sessions; the researcher’s field notes; formal notes placed in the participant’s medical charts; the formal written assessment; transcriptions of audio-taped music therapy sessions; interviews; interview transcriptions; artistic pieces crafted by myself that emerged from the experiences of the participants as reflected in their interviews, and weekly participation in sessions which were verified by the participants; and other artistic material. The rich knowledge that emerged from the individual case studies informed a cross-case analysis where global themes were identified from a thematic analysis of participants’ experiences; and process motifs arising from the progression of participant engagement in music therapy are described. Global themes included: love; loss; gratitude; growth/transformation; courage/strength; and goodbye. The five process motifs that emerged were: (1) music therapy helps and was valued as a means of sharing the participants’ perceptions of their situation. (2) music therapy provides a safe place to become aware of, explore, and express feelings. (3) music enhances communication. (4) music therapy techniques provide creative avenues for self-expression. (5) music therapy provided a vehicle for revisiting and reminiscing. The thesis concludes with a summary of the knowledge revealed and a discussion of implications for music therapists and health care professionals, as well as a presentation of final thoughts and reflections on my role as researcher in this study.

Bakgrund: Palliativ vård är en globalt växande specialitet inom hälso- och sjukvård vilken ställer höga krav på sjuksköterskan både personligt och professionellt. Sjuksköterskans roll inom den palliativ vården är omfattande och ett flertal aspekter påverkar sjuksköterskans upplevelser av att vårda en döende människa. Syfte: Att beskriva sjuksköterskors upplevelser av att vårda en döende människa. Metod: En litteraturöversikt baserad på tio kvalitativa vårdvetenskapliga artiklar, publicerade mellan år 1997-2012. Sökningar i databaserna CINAHL, PubMed och SweMed+ har kompletterats med manuella sökningar. De valda artiklarna analyserades utifrån Fribergs metod för dataanalys. Resultat: Tre övergripande teman identifierades; det professionella, det personliga och privata samt det komplexa vårdandet. Det som genomgående belysts i resultatet är att sjuksköterskors upplevelser av att vårda en döende människa beskrivits som krävande men samtidigt stimulerande. Sjuksköterskor i samtliga granskade studier uttryckte att de sett döden som en naturlig del av livet och att vården av en döende människa påverkat dem i deras yrkesutövande och även väckt tankar och reflektioner kring det egna livet.  Diskussion: Resultatet diskuterades utifrån människosyn och vårdandets olika delar, att ansa, leka och lära. Det som vi funnit relevant och valt att diskutera vidare är olika aspekter som påverkat sjuksköterskans möjligheter att erbjuda optimal vård, hur sjuksköterskans professionella och personliga förhållningssätt uppmärksammats vid vård av döende människor samt den palliativa vårdens komplexitet. / Background: Palliative care is a globally growing specialty in health care which places high demands on nurses, both personal and professional. Nurse's role in palliative care is extensive, and several aspects both control and determine nurses' experiences of caring for a dying human being.  Aim: To describe nurses' experiences of caring for a dying human being. Method: A literature survey based on ten qualitative nursing research articles, published between the years 1997-2012. Used databases are CINAHL, PubMed and SweMed + with complements of manual searches. The selected articles were analyzed with Friberg's method of data analysis. Result: Three main themes have been identified; the professional, the personal and private, and the complexity of caring. The main themes are further described and developed with help of subthemes. The consistently highlighted in the results is that the nurses' experiences of caring for a dying human being are described as demanding but stimulating. Nurses in all reviewed studies expressed that they saw death as a natural part of life and to care for a dying human being influenced them in their profession and also brought thoughts and reflections on their own lives. Discussion: The results have been discussed on the basis of humanity and the various parts of caring; grooming, play and learn. What we have found relevant and have decide to further discuss is the different aspects that influenced nurses ability to provide optimal care, the nurse's professional and personal approach highlighted in the care of dying human being and the complexity of palliative care.

Americans often face end-of-life with ineffective pain/symptom control. While hospice care prevents suffering for the terminally ill, only around 40% of individuals access services. Although few studies describe differences in terms of cancer vs. non- cancer diagnoses, hospice utilization/access disparities appear to exist. Analyzing 14 sociodemographic and clinical variables for 3,905 hospice discharge cases, this study highlights observed disproportions between cancer and non-cancer groups, identifying significant relationships amongst patient characteristics and hospice diagnosis. Factors found significantly related to diagnosis include components of the following: age, primary payment source, mortality status at discharge, hospice initiation location, length of stay, physical function, cognitive function, and presence of pain symptoms. Results confirm low overall hospice utilization rates, while validating diagnosis-specific differences driven by individual and population-based characteristics. In order to increase utilization/access rates and eliminate current disparities, patients presenting with certain terminal diseases may require greater provider flexibility in terms of hospice eligibility requirements.

Årligen avlider ca 92 000 personer i Sverige av dessa avlider ca 35 % på sjukhus eller på annan institution. Arbetet som sjuksköterska inom palliativ vård innebär nära kontakt med döden och insikten om sin egen dödlighet. Palliativ vård inriktar sig på att förbättra eller upprätthålla den sjukes livskvalitet men verkar inte för att vare sig påskynda eller fördröja döden. Syftet med denna litteratur studie var att belysa sjuksköterskans upplevelser av att vårda en patient i livets slutskede. Arbetet utfördes som en litteraturstudie där 16 vetenskapliga artiklar granskades. I resultatet framkom två kategorier, Sjuksköterskors upplevelser av relationer i vårdandet samt sjuksköterskors upplevelser av yrkeserfarenheter. Resultatet påvisade att sjuksköterskans relationer till patienter, kollegor och patientens anhöriga var viktiga. Relationerna kunde vara svårdefinierade men de gav bra stöd åt sjuksköterskan. Det framkom även att bristen på tid kunde vara ett stort problem. Hur sjuksköterskan upplevde att det var att vårda en patient inom palliativ vård påverkades av egna erfarenheter samt yrkeserfarenheter. Önskvärt är mer utbildning för sjuksköterskan kring vården av en patient i livets slutskede. / Every year about 92 000 people dies in Sweden, about 35% of these deaths occur in a hospital or at another institution. To work as a nurse in palliative involves close contact with death and the realization of the nurses own mortality. Palliative care focuses on improving or maintaining the patient's quality of life, but neither to hurry or slowdown death. The purpose of this scientific work was therefor to highlight nurses’ experiences of caring for patients at the end of life. The study was conducted as a literature review, 16 research articles were examined. The results revealed two categories, nurses' experiences of relationships in caring and nurses' experience of professional experience. The results demonstrate that nurses' relationships with patients, colleagues and relatives of the patients were important. Relations could have varied forms but they often gave support to the nurse. It was also found that lack of time could be a major problem. How the nurse came to experience nursing in palliative care was influenced both by personal experience and professional experience. More education is desirable for the nurses that are caring for patients at the end of life.

Erfarenheter av den palliativa vården har studerats, men i huvudsak ur ett anhörig- och sjuksköterskeperspektiv och mindre fokus har lagts på att studera patientens perspektiv på vården som erbjuds. Syftet med litteraturstudien var att belysa erfarenheter av palliativ vård ur ett patientperspektiv. Fjorton vetenskapliga artiklar valdes för granskning, analysering och bearbetning för att svara på föreliggande studies syfte. Bearbetningen resulterade i fem resultatkategorier, erfarenheter av; kommunikationen, informationen, bemötandet, tillgängligheten och vårdplatsen. Patienterna som var i behov av palliativ vård tyckte framförallt att kommunikationen var tillfredsställande. Brister i kommunikationen mellan olika vårdinstanser och professioner upplevde patienten som negativt. Sjuksköterskan upplevdes som en källa för information och kunskap. Erfarenheter av bristfällig information resulterade i nedsatt självbestämmande. Sjuksköterskans bemötande och tillgänglighet påverkade erfarenheten av vården. Vårdplatsen för patienterna var sjukhus, hospice eller hemmet och en gemensam nämnare var att alla platser skapade trygghet hos patienterna. Under yrkeskarriären möter sjuksköterskan patienter i behov av palliativ vård och för att få en grund att stå på i mötet med patienten behöver grundutbildningen för sjuksköterska innefatta obligatorisk undervisning om palliativ vård. Ett ökat samarbetet mellan vårdprofessionerna och en fortlöpande forskning kan bidra till att förbättra patienters erfarenheter av och livskvalitet i den palliativa vården. / The experience of palliative care have been studied, but mainly from a next of kin and nursing perspective and little has been devoted to study the patient perspectives of the care offered. The purpose of this study was to illustrate experiences of palliative care from a patient perspective. Fourteen scientific articles were selected for review, analysis and processing in order to answer the present study purpose. The processing resulted in five categories, experiences of; communication, information, treatment, accessibility and place of care. Patients’ in need of palliative care experienced the communication as satisfactory. Deficiency in communication between care professions and the patient was experienced as negative. The nurse was perceived as a source of information and knowledge. Lack in given information experienced to result in decreased self-determination. The nurse treatment and availability affected the experience of care. The place of palliative care was at hospital, in hospice or at home and one common denominator was that all sites created safety for the patients. Nurses will during their careers face patients in need of palliative care. The nurses need a foundation to stand on in the meeting with the patient and it requires that the basic education includes mandatory education about palliative care. Greater cooperation between health professions and an ongoing research may help improve patients' experiences and quality of life in palliative care.

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.