Palliative care for non-dominant ethnocultural groups is problematized in the palliative care literature, which often presents essentialist conceptions of cultural beliefs on death and dying. Death is often portrayed as a taboo topic within the Chinese community, and thus, the assumption is that dying at home may not be the preferred option. Beyond these stereotypical representations, little is known about what it is like for Chinese immigrants with terminal cancer to receive palliative home care. Home is a complex site where cultural “difference” becomes contextually salient when home care providers introduce palliative care. More is potentially at stake than the violation of a taboo, as Chinese immigrant care recipients, their family caregivers, and home care providers negotiate changes to the existing routines of the home. The purpose of this study was to examine how meanings of home condition negotiations of care between Chinese immigrants with terminal cancer receiving palliative home care, family caregivers, and home care providers. Postcolonial theory provided a critical lens for this focused ethnographic study of palliative home care for Chinese Canadian immigrants. The analysis drew on postcolonial concepts such as Othering, subjugation, and hybridity. The methods included interviews with 11 key informants, and observational visits and interviews were conducted in 4 cases of Chinese immigrant care recipients, their family caregivers, and home care nurses. Two major findings emerged: 1) colonization and distancing and 2) negotiating hybridity. The meaning of home was deeply altered as palliative home care occupied care recipients’ and family caregivers’ everyday lives and represented a form of micro-colonization - the home was metaphorically invaded. The ambivalent relationship between care recipients and home care providers was characterized by a mutuality of need, but care recipients used distancing as a way to resist colonization. Palliative care presented its own unique cultural influence, which was imbued with meanings, beliefs, and practices. For care recipients, the meaning of dying at home was fluid, situational, and contextually informed. Subsequently, differences were created and highlighted in the confrontation between the meaning of palliative care for home care providers and the meaning of dying at home for care recipients. It was in the meeting, blending, clashing, and grappling of differences where participants had to negotiate and generate new, hybrid meanings and practices so that particularized, personal approaches to dying could be achieved. The findings capture the realities and complexities of palliative home care, and highlight the sophisticated and evolving ways providers come to know and care for care recipients and families in their homes. Although culture was prominently featured in participant narratives, the pragmatics of dying at home were more pressing than was adherence to essentialized cultural beliefs of death and dying. A key implication is the need to move away from simplistic conceptualizations of culture to a critical approach that will enable providers to understand and find comfort in working with the fluid, dynamic, and contextually-driven nature of culture and dying at home.

Note: / Pain requiring treatment is experienced by many cancer patients at the end of life. When these patients stay at home, family caregivers are often directly implicated in pain management. There are few studies that examine the process that these family caregivers engage in when they take on the responsibility of pain management. This means we need information on whether or not these family caregivers are prepared for management to ensure proper support and optimal pain control. The purpose of this qualitative study was to study the process used by family caregivers at home to manage the pain of palliative cancer patients using a grounded theory approach. A total of 24 family caregivers with differing relationships to the patient and differing lengths of caregiver experience participated. Family caregivers were recruited using purposeful then theoretical sampling. The data sources were taped, transcribed (semi-structured) interviews, field notes, and memos. Data analysis used Strauss & Corbin’s (1998) suggestions for substantive coding: open, axial, and selective coding.[...] / Les patients atteints de cancer en fin de v1e eprouvent souvent des douleurs qui doivent etre traitees. Lorsque ces patients demeurent a la maison, ce sont plus souvent les proches-aidants qui sont impliques directement dans la gestion de cette douleur. Peu d’etudes existent sur le processus que les prochesaidants adoptent lorsqu’ils prennent la responsabilite de gerer la douleur. Il est done opportun d’accroltre nos connaissances afin d’outiller les proches-aidants a gerer de fac;on optimale la douleur et de mieux les soutenir dans leurs roles. Le but de cette etude qualitative est d’etudier le processus que les prochesaidants utilisent lorsqu’ils prennent soin a domicile d’une personne en fin de vie. Cette etude se base sur une approche de theorisation an ere e. L’ echantillon de I’ etude se compose de 24 proches-aidants ayant des types et des durees de relation differentes avec le patient. Les proches-aidants ont ete selectionnes selon une procedure d’echantillonnage a choix raisonne, suivi par une procedure d’echantillonnage theorique. Les donnees recueillies sont basees sur des entrevues (semi-structurees) enregistrees et transcrites, ainsi que sur des notes de terrain et des memos. Les analyses de donnees ont ete basees sur les recommandations de Strauss & Corbin ( 1998) pour le codage; c’ est-a-dire codage ouvert, axial et selectif.[...]

BAKGRUND: Bröstcancer är en av de vanligaste dödsorsakerna hos medelålders kvinnor i Sverige och varje år drabbas närmare 8500 kvinnor. Antalet kvinnor som avlider är ca 1400 per år. Recidiv av cancer kan bero på att alla cancerceller inte lyckats elimineras vid första behandlingen och istället återkommer i förökat antal. Tidigare forskning visar att lidandet hos cancerpatienter i det sena palliativa skedet omfattar psykiskt, socialt, existentiellt/andligt och fysiskt lidande. Den visar också att välbefinnande uppnås när kropp och själ fylls med meningsfulla upplevelser. Här har det sociala och professionella stödet en betydelsefull uppgift att fylla. SYFTE: Syftet är att identifiera faktorer som ökar upplevelsen av lidande respektive välbefinnande i det sena palliativa skedet hos kvinnor med recidiv av bröstcancer. METOD: Metoden som används är narrativ med berättelser i form av bloggar RESULTAT: Presenteras i två domäner med tillhörande kategorier. Domänen ökat lidande resulterade i två kategorier; Känslan av maktlöshet av att vara i sjukdomens grepp och tankar på att livet går mot sitt slut. Domänen ökat välbefinnande resulterade i en kategori; Att få stöd- en källa till trygghet, återhämtning, fortsatt livslust och kämparglöd. SLUTSATS: Kvinnor med recidiv av bröstcancer som befinner sig i det sena palliativa skedet upplever ökat lidande när känslan av maktlöshet och tankar på att döden står för dörren infinner sig. Genom stöd från nära och kära samt professionell hälso-och sjukvårdspersonal, upplever kvinnorna bland annat ökad trygghet, fortsatt livslust och kämparglöd, vilket skapar en upplevelse av ökat välbefinnande. / BACKGROUND: Breast cancer is the most common cause of death among middle age women in Sweden. Approximately 8500 women are affected annually and about 1400 women dies every year. Recurrence of cancer can be that all cancer cells failed to be eliminated on the first treatment and instead return in multiplied numbers. Previous research shows that the suffering of cancer patients in the late palliative phase includes the mental, social, existential/spiritual and physical suffering. Previous research also shows that well-being was reached when body and soul was filled with meaningful experiences. It turned out that social and professional support play an important role. PURPOSE The aim is to identify factors that increase the experience of suffering and well-being in the late palliative phase among women with recurrence of breast cancer. METHOD: Narrative method as blogstories. RESULT: Presented in two domains with associated categories. The domain increased suffering resulted in two categories; The feeling of powerlessness of being in the grip of sickness and thoughts that life is about to end. The domain increased well-being resulted in one category, which was named; Getting support- a source of security, recovery, continued lust for life and fighting spirit. CONCLUSION: Women with recurrence of breast cancer who are in the late palliative phase experience increased suffering when the feeling of powerlessness and thoughts of that death is near appears. An experience of increased well being appears when the women gets support from loved ones and from professional health and care workers. Through that support, the women experienced a feeling of security, recovery, continued lust for life and fighting spirit.

Bakgrund: Många patienter i palliativ vård rapporterar en minskad, eller förändrad, förmåga att känna smak och lukt. Smak-och luktförändringar (SoL-förändringar) kan innebära lidanden för den enskilde patienten, men kan även påverka näringsintag samt få negativa följder i det dagliga livet. Syfte: Syftet var att rapportera om cancerpatienters erfarenheter av smak- och luktförändringar och påverkan och hantering av dessa i det dagliga livet när de är i palliativ fas. Metod: Kvantitativ data samlades in från åtta deltagare, under tre mättillfällen per deltagare, via ett frågeformulär. Kvalitativ data beståendes av kommentarer till frågorna, redovisades som citat. Resultat: Det var fem huvudfynd som framkom i resultatet. Ett övergripande tema som kunde urskiljas var sårbarheten och lidandet i samband med SoL-förändringar.  Vidare framkom att SoL-förändringar rapporterades av samtliga deltagare, dock inte vid alla mättillfällen. En definitionssvårighet av SoL-förändringar uppmärksammades också bland svaren. Ytterligare var aptitnedsättningar lågt rapporterade bland deltagarna. Detta stod i kontrast till illamående som rapporterades av samtliga deltagare. Diskussion: Sårbarheten och lidandet som uppkom i samband med Sol-förändringar kunde ge en negativ påverkan på det dagliga livet. Drivkraften att tillgodogöra sig föda för sin överlevnad återges med insikten att det ofta inte är för njutningens skull som måltider intas.  Resultatet visade på vikten av att SoL-förändringar uppmärksammas inom den palliativa sjukvården.

Bakgrund: Sjuksköterskor som vårdar svårt sjuka döende patienter konfronteras dagligen av sorg, frustration och svårvärderade symtom, där även etiska och kulturella aspekter ingår. I en allt mer personcentrerad och mångkulturell vårdmiljö ökar förväntningar och krav på sjuksköterskans yrkeskunskap. Syfte: Syftet med studien är att belysa etiopiska sjuksköterskors erfarenheter av patienters uttryck för skuld och skam i palliativ hemsjukvård i Addis Ababa, Etiopien, samt illustrera efterföljande omvårdnadshandlingar. Metod: Studien baseras på sjuksköterskors erfarenheter. Fokusgruppsdata insamlades under våren 2013, i Addis Ababa i Etiopien. Ljudinspelad data transkriberades och analyserades med stöd av kvalitativ systematisk textkondensering.  Resultat: Sjuksköterskornas erfarenheter visar att skuld- och skamkänslor i samband med obotlig sjukdom hör nära samman med tidigare livshandlingar. Skuld-och skamkänslor kunde enligt sjuksköterskorna vara såväl kulturellt som individuellt betingat. Kval sågs ibland leda till social och existentiell isolering.  Sjuksköterskans roll var bekräftande och stödjande.  Slutsats: I den här studien visar Etiopiska sjuksköterskors erfarenheter att svårt sjuka och döende patienter uttrycker skuld-och skamkänslor som kan leda till isolering. Sjuksköterskors medvetenhet om existentiella kval ur kulturella perspektiv kan främja en personcentrerad omvårdnad vid livets slut. / Background: Nurses who care for terminally ill and dying patients are daily confronted with underlying emotions such as grief and frustration including ethical and cultural dimensions. In a more person-centered, multicultural healthcare environment, the expectations and demands on nurses' professional knowledge increases. Aim: The purpose of this study is to elucidate Ethiopian nurses' experiences of patients expressions of guilt and shame in palliative care in Addis Ababa, Ethiopia, and to illustrate subsequent nursing actions. Methods: The study is based on nurses' experiences. Focus group data were collected during the spring of 2013, in Addis Ababa, Ethiopia. Recorded audio data was transcribed and analyzed in accordance with qualitative systematic text condensation. Results: Nurses' experiences show that guilt and shame associated with incurable disease is closely related to past life deeds. Nurses' reported that patients often interpret diseases to their life choices and actions. Guilt and shame could, according to the nurses be both culturally and individually determined. The agony was sometimes seen to lead to social and existential isolation. The nurses’ role was confirmatory and supportive. Conclusions: This study shows Ethiopian nurses' experiences to seriously ill and dying patients expressing guilt and shame that can lead to isolation. Nurses' awareness of existential agony from the cultural perspective can promote a person-centered care at the end of life.

Palliativ vård syftar till att se patienten och dess närstående som en helhet där målet är att bidra till välbefinnande och värdighet i livets slut. För att underlätta de närståendes situation spelar vårdpersonalen en stor roll. Syftet var att beskriva närståendes upplevelser av den palliativa vården. Metoden som användes var litteraturstudie som grundades på tolv vetenskapliga artiklar. Resultatet visade att närstående är i stort behov olika stödjande insatser från vårdpersonalen. Tre teman framkom i resultatet; Närståendes upplevelser av information och kommunikation, Närståendes upplevelser av stöd samt Närståendes upplevelser av delaktighet. Fortsatt forskning behövs för att ytterligare belysa närståendes upplevelser av palliativ vård, då stor del av befintlig forskning främst inriktar sig på patienten eller sjuksköterskans upplevelser. / Palliative care aims to ensure patients and carers as a whole, where the goal is to contribute to the welfare and dignity in end of life. In order to facilitate the families’ situation caregivers plays a big role. The aim was to describe the families’ experiences of palliative care. The method used was literature study which was based on twelve scientific articles. The results showed that relatives are in great need of supportive action from the nursing staff. Three themes emerged in the results: Families’ experiences of information and communication, Families’ perceptions of support and Families’ experiences of involvement. Further research is needed to elucidate families’ perceptions of palliative care, where much of the existing research mainly focuses on the patient or the nurse’s experiences.

Att ett barn vårdas palliativt är en svår och komplex situation för barnets föräldrar. Föräldrarna kan känna sig hjälplösa samtidigt som de tar stor del i barnets vård. Syftet med litteraturstudien var att belysa föräldrars upplevelser av att vårda sitt barn palliativt. Elva artiklar valdes ut som sedan analyserades. I resultatet framkommer fyra olika teman: att fungera som förälder och familj efter det tuffa beskedet, att bibehålla föräldrarollen i barnets vård, att skydda barnet och att vara förälder när barnets död närmar sig. Temana beskrev bland annat föräldrarnas svårighet i att hantera sin egen sorg, samtidigt som vardagslivet fortsatte efter beskedet om barnets obotliga sjukdom. Föräldrarna ville ha kvar föräldrarollen samtidigt som de blev barnets vårdgivare, vilket ledde till att föräldrarna tvingades ta svåra beslut som ibland stred mot barnets vilja. Föräldrarna ville göra allt för barnet, inklusive att stötta, skydda och informera sitt barn. Föräldrarna hade också förhoppningar i samband med barnets död, till exempel att barnet skulle vara smärtfritt och vara bekvämt, dock beskrev föräldrarna att dessa önskningar ofta inte gick att uppfylla. Fortsatt forskning behövs för att sjuksköterskor ska kunna sätta sig in i familjens situation och för att kunna ge den bästa möjliga vården.

No description available.

Introduction There is a need in palliative care for development of structured methods to assess quality and support improvement. This need is present both within and outside specialised palliative care. Honest information from physicians is regarded as an important part of palliative care. Information about the transition to end-of-life care (ITEOL), conveyed by physicians to patients, has also been described as a ‘breakpoint conversation’. Quality registers enable monitoring and improvement of quality of care, and clinical research. The Swedish Register of Palliative Care (SRPC) is a Swedish national quality register that collects data from hospitals, hospices, nursing homes and home care, with an end-of-life questionnaire (ELQ) about palliative care content focusing on the last week of life. Aims Study I – The aim was to examine the validity of the ELQ from the SRPC. Study II – The aim was to examine whether participation in the SRPC increases the quality of palliative care over a three-year period regarding eight items in the ELQ. Study III – The aim was to examine whether an educational intervention for physicians and nurses in nursing homes and hospitals increases the proportion of patients who receive ITEOL. Study IV – The aim was to describe how patients with cancer perceive the information they receive from physicians during palliative chemotherapy. Methods Study I – Data from 100 medical records and data from the paper versions of the ELQ filled in at a specialised palliative unit were compared with data reported to the SRPC. Study II – Data from eight items in the ELQ reported to the SRPC from all healthcare units that had reported patients continuously during a three-year period were compared year-by-year with logistic regression. Study III – Two municipalities (in charge of nursing homes) and two hospitals were randomised to receive an interactive half-day course about ITEOL for physicians and nurses. Four hospitals and four municipalities were assigned matched controls. The proportion of patients who received ITEOL before and after the intervention was measured with the ELQ. The effect of the intervention was analysed with a multivariable logistic regression model. Study IV – Fifteen semi-structured interviews with patients with incurable cancer were conducted, transcribed verbatim and analysed with qualitative content analysis. Results Study I – The questions in the ELQ showed a congruity of 22% to 100% when comparing data from medical records with data reported to the SRPC. Eight questions fell below 80%. The paper versions filled in at the unit and the data reported to the SRPC showed a congruity of between 91% and 100%. Study II – The prevalence of six symptoms decreased. The prescription of PRN (pro re nata – ‘as needed’) medications for pain, nausea, anxiety and death rattle increased. A higher proportion of patients died in their place of preference. The patient’s next of kin was more often offered a follow-up appointment after the patient’s death. There was no change in the proportion of patients or next of kin who received ITEOL. Study III – The proportion of patients in the intervention group who received ITEOL increased from 35.1% (during a six-month period before the intervention) to 42.0% (during a six-month period after the intervention). The proportion in the control group increased from 30.4% to 33.7%. The effect of the intervention was significant (p=0.005) in the multivariable model. Study IV – Three categories were disclosed during the analytical process: ‘living with a death sentence’, ‘depending on chemotherapy’, and ‘living with uncertainty’. Conclusions A national quality register has the potential of contributing to quality improvement in palliative care. Study I showed varied validity in the ELQ, implying a need to modify the questionnaire. Study II showed that participation in the SRPC was covariant with quality improvements in end-of-life care over time. Study III showed that more patients received ITEOL after an educative half-day intervention directed to physicians and nurses. Study IV showed that patients undergoing palliative chemotherapy perceived that their disease was incurable and deadly, and that conditions for future treatment and survival were uncertain.

Bakgrund: Inom sjuksköterskeprofessionen är döden en oundviklig företeelse och omhändertagandet av patienter i det palliativa skedet är en del av yrket. Döden väcker också starka känslor som kan vara svåra för sjuksköterskan att hantera, vilket kan resultera i emotionell stress. Att vårda barn i livets slutskede medför att sjuksköterskan ställs inför flera emotionella utmaningar, vilket leder till att denne måste finna strategier för att hantera de uppkomna känslorna. Syfte: Att beskriva sjuksköterskors strategier för att hantera känslomässig stress vid omvårdad av svårt sjuka barn i livets slutskede. Metod: Systematisk litteraturöversikt av tolv vetenskapliga artiklar med kvalitativ ansats. Resultat: De strategier sjuksköterskorna beskrev identifierades och kategoriserades i följande fem teman: Utveckla motståndskraft, stöd, skifte mellan känslor, kontroll och egenvård. Slutsats: Sjuksköterskor använder sig av flera strategier för att hantera känslomässig stress. Strategierna utvecklades bland annat genom erfarenhet, reflektion och genom att finna mening. Sjuksköterskor upplevde också bristande kunskap att hantera sina känslor och att möta sörjande föräldrar. Förmågan att skapa en känsla av sammanhang, och vilka strategier de utvecklade påverkade hur de hanterade emotionell stress. Klinisk betydelse: En ökad förståelse av vilka strategier sjuksköterskor använder för att hantera känslomässig stress kan ge verktyg för att förbättra sjuksköterskans arbetssituation och ge dem mer stöd. Därtill torde många av de strategier sjuksköterskan utvecklar också kunna överföras till andra omvårdnadssituationer. / Background: In the nursing profession, death is an inevitable outcome and care of patients in the palliative phase is part of the occupation. Death also evokes strong feelings that may be difficult for the nurse to manage, which can result in emotional stress. Caring for children in palliative care causes the nurse to face several emotional challenges, which means that they must find strategies to deal with the resulting emotions. Aim: To describe nurses‟ strategies on how to handle emotional stress when caring for critically ill children in the final stages of life. Method: A literature review based on twelve studies with a qualitative approach. Findings: The strategies nurses described were identified and categorized into five themes: developing resilience, support, self-care, control and shift between emotions. Conclusion: Nurses use several strategies to cope with emotional stress. The strategies were developed through among other things experience, reflection, and by finding meaning. Nurses also experienced a lack of knowledge in managing their emotions and meeting grieving parents. Nurses' ability to create a sense of coherence, and the strategies they developed affected how they handled emotional stress. Clinical significance: The results of the study may provide an increased understanding of the strategies nurses use to cope with emotional stress and may provide tools to improve nurses' working conditions and give them more support. In addition, many of the developed strategies might be applicable to other contexts.