Introduktion: Smärta är ett vanligt symtom hos patienter som vårdas palliativt den sista tiden i livet. Obehandlad smärta leder till onödigt lidande för patienten. Syfte: Syftet med studien var att beskriva distriktssköterskans erfarenheter av smärtbehandling hos patienter som vårdas palliativt den sista tiden i livet i kommunal hemsjukvård. Metod: Studien är en kvalitativ intervjustudie där datainsamlingen inspirerades av Kritisk Incident Teknik. Data samlades in genom intervjuer med elva distriktssköterskor verksamma i kommunal hemsjukvård. Analysen utfördes enligt kvalitativ innehållsanalys i enlighet med Lundman och Hällgren Granheim. Resultat: Resultatet redovisades utifrån tre huvudkategorier och åtta subkategorier. Huvudkategorierna var: Att bedöma och utvärdera smärta, Att behandla smärta samt Att samarbeta vid behandling av smärta. Smärtbedömningen gjordes med skattningsinstrument, kliniska blicken eller utifrån patientens egna ord. Distriktssköterskan erfarenhet var att det fanns brister vid utvärdering. Morfin ansågs som den vanligaste och effektivaste behandlingen vid smärta. Ett gott samarbete med andra professioner samt anhöriga ansågs vara av betydelse för smärtbehandlingen hos patienter som vårdas palliativt. Konklusion: Studiens resultat visar att distriktssköterskan hade en viktig roll vid smärtbehandling hos patienter som vårdas palliativt den sista tiden i livet. / Introduction: Pain is a common symptom in patients in palliative care. Untreated pain has a profound impact on quality of life and causes unnecessary suffering. Aim: The aim of the study was to describe the district nurse’s experiences of pain relief in end of life in municipal home care. Method: The study is a qualitative interview study where the data collection was inspired by Critical Incident Technology. Data was collected through interviews with eleven district nurses employed in municipal home care. The analysis was performed in line with qualitative content analysis according to Lundman and Hällgren Granheim. Result: The results were presented in three main categories and eight subcategories. The main categories were: assessment and evaluation of pain, management of pain and cooperation in the management. The pain assessment was carried out using estimation instruments, clinical views or based on the patient's own words. The district nurse experienced a lack of evaluation. Morphine was considered the most common and effective treatment of pain. Good cooperation with other professions and relatives was considered to be important for pain management in patients in palliative care Conclusion: The study's findings show that the district nurse had an important role in pain management in patients in end of life care.

Bakgrund: Genom en tidig identifiering av lidande så ska den palliativa vården ge en lindring från smärta och tillkommande problem som fysiska, psykosociala och andliga. Den palliativa vården syftar inte till att varken påskynda eller skjuta upp döden utan att stödja patienten att leva så aktivt och bra som möjligt i slutskedet av livet. Sjuksköterskan inom den palliativa vården ska vara professionell och visa lyhördhet, medkänsla, respektfullhet, integritet och trovärdighet.                                                                                                                 Syfte: Syftet i den studien var att få kunskap om vilken erfarenhet sjuksköterskor har av den palliativa vården inom slutenvård samt att beskriva hur undersökningsgruppen i de valda artiklarna presenterades.                                                                       Metod: Denna litteraturstudie har en deskriptiv design och baseras på tolv vetenskapliga studier med både kvalitativ och kvantitativ ansats publicerade mellan år 2008–2018. De vetenskapliga studierna söktes i databaserna Pubmed och Cinahl.                                                                                                Huvudresultat: I resultatet framkom det att sjuksköterskorna ansåg att kommunikationen i palliativ vård är avgörande för att kunna skapa förtroende och bedöma problem. Sjuksköterskorna upplevde att det var viktigt att bry sig om och tillgodose anhörigas och patientens behov samt erbjuda dem support och vägledning. Sjuksköterskorna ansåg att de är patienternas förespråkare och att de har ett viktigt ansvar. Brister i det palliativa vårdsystemet gjorde att de upplevde att vården blev försämrad då detta ledde till att sjuksköterskorna inte hade tid att kunna ge tröst till patientens anhöriga när patienten hade avlidit.                                                      Slutsats: Det var viktigt att sjuksköterskor upplevde arbetet inom den palliativa vården givande för att klara av sitt arbete. Det framkom i studien att sjuksköterskorna har många arbetsuppgifter inom den palliativ vården, de har inte bara ett ansvar för patienten utan även för de anhöriga. Den krävande vårdorganisationen gör att sjuksköterskorna inte kan spendera lika mycket tid med patienten och anhöriga som de annars skulle vilja, detta och bristfällig kommunikation med läkaren bidrar till påfrestningar som sjuksköterskorna hanterar genom hanteringsstrategier. / Background: Through an early identification of suffering, palliative care will provide ease from pain and additional problems such as physical, psychosocial and spiritual. The palliative care does not aim to accelerate or postpone death but supports the patient to live as actively and well in the final stages of life as possible. Nurses in palliative care should be professional, show responsiveness, compassion, respectfulness, integrity and credibility.                                                     Purpose: The purpose of the present literature study was to obtain knowledge about the experience nurses have in palliative care in end-care and to illustrate how the research group in the selected articles was presented.                                          Method: This literature study has a descriptive design and is based on twelve scientific studies with both qualitative and quantitative work published between the years 2008-2018. The scientific studies were found in the databases Pubmed and Cinahl.                                                                                                       Main Result: The results showed that nurses felt that communication in palliative care is crucial in order to create confidence and assess problems. Nurses felt that it was important to care for and cater for the needs of relatives and patients, and to offer them support and guidance. Nurses considered that they are the advocates of the patient and that they have an important responsibility. Deficiencies in the palliative care system led to the fact that healthcare deteriorated as this led to nurses not having time to give comfort to the patient's relatives when the patient had died.                                    Conclusion: It was of great importance that the nurse saw the work in the palliative care rewarding to cope with their work. It was found in this literature study that nurses have many tasks in palliative care, not only for the patient but also for the relatives and for the care organization. The demanding care organization does not allow the nurses to spend as much time with the patient and relatives as they would otherwise want, this and inadequate communication with the doctor contributes to the stresses that nurses handle through management strategies.

Bakgrund: Palliativ vård innebär att bekräfta livet och beakta döden som en normal process. Fysiskt, psykiskt och andligt lidande skall lindras och livskvalitet främjas hos patienten och hens anhöriga. Sjuksköterskors roll i den palliativa vården omfattade flera dimensioner av omvårdnad. Familjen till barn som vårdas palliativt menar att sjuksköterskor ska vara ärliga, genuina och arbeta självsäkert. Barn önskar bli respekterade som individ genom att sjuksköterskor skapar en relation med hen. Syfte: Syftet var att beskriva sjuksköterskors erfarenheter av att ge palliativ omvårdnad till barn. Metod: Litteraturstudien har en beskrivande design som baseras på 13 artiklar. Huvudresultat: Sjuksköterskor menade att för en god omvårdnad av hela barnet var relation till barnet och familjen viktig. Samt att främja relationer inom familjen. Sjuksköterskor beskrev emotionella erfarenheter såsom sorg, hjälplöshet, moralisk stress och etiska dilemman. De beskrev även att de fann inspiration och mening i den palliativa omvårdnaden av barn. Sjuksköterskor återgav olika strategier för att hantera död och döende. De upplevde en osäkerhet och kunskapsbrist i palliativ vård av barn samt berättade hur de inhämtade kunskap. Vidare beskrev sjuksköterskor deras professionella och privata roll samt deras erfarenhet av att hantera samtal om döden. Undersökningsgruppen granskades utifrån Undersökningsgruppens ursprungsland, Antal deltagare, Kön, Arbetsplats och Erfarenhet inom palliativ vård. Slutsats: För att ge god palliativ omvårdnad till barn krävdes en nära relation mellan sjuksköterskor, barnet och familjen. Vårdandet innebar emotionella påfrestningar för sjuksköterskor. Okunskap i att ge palliativ omvårdnad upplevdes. Genom mer kunskap kan sjuksköterskor ges förutsättningar att kunna ge en holistisk palliativ vård till barn. / Background: Palliative care means acknowledge to life and heed the death as a normal process of life. Physical, psychic and spiritual suffering shall be alleviated and foster the quality of life at the patient and the family. Palliative care comprises several dimensions of nursing. The dying child´s family mean that the nurse should be honest, genuine and work confidently. Children wish to be respected through the relationship the nurse establishes with the child. Aim: The aim of this literature study was to describe the experiences of nurses giving palliative care to children.   Method: A descriptive design was used based on thirteen articles to answer the aim and problem contention of the literature review. Main result: Nurses intended that the relationship to the child and the family were important to provide good care to the child. And promote relations within the family. Nurses witnessed emotional experiences as sadness, helplessness and moral stress. They described the ability to find inspiration and meaning. They described strategies to handle death and uncertainty and lack of knowledge about palliative care and how they obtained knowledge. Nurses described their professional and private role and how they manage conversations about death. The group examination was examined as follow; Country of origin, Number of participants, Gender, Workplace and Experience in palliative care. Conclusion: To provide a good palliative care for the child a close relationship between the nurse, child and family were required. The nursing implies emotional stress and lack of knowledge in giving palliative care were experienced. Through more knowledge nurses can be given prerequisites to give holistic palliative care.

Background Nurses work to promote health, prevent disease, restore health and relieve suffering. However, when the patient transitions into end of life care, the goal is no longer to cure, but to relieve. End-of-life care is about seeing the patient and helping them move on by doing what favors the patients’ well-being. Aim The aim of this study was to describe how nurses can preserve the patients’ dignity in end of life care. Method This study is based on a method to contribute to evidence-based nursing with foundation in analysis of qualitative research. 7 qualitative and 2 articles with mixed methods were analyzed using a five step model described by Friberg. Results Through the analysis three main themes and five sub-themes were developed. The main themes were: Involving the patient, Preserving the patient’s quality of life, Seeing the patient. Conclusion Through the actions performed by the nurse, dignity can be preserved. By protecting the patients’ integrity and autonomy through a person-centered care, the best conditions for giving a worthy death are created.

Working as a nurse means close contact with dying patients and mourning relatives. To care for severely ill and dying patients is part of the nursing profession and this places great expectations on the nurse to meet the needs of all individual patients and their relatives. Therefore, it is essential that the healthcare professionals have a deeper understanding of all the various needs a human being can have at the end of time. / Att arbeta som sjuksköterska innebär nära kontakt med döende patienter och sörjande anhöriga. Att vårda svårt sjuka och döende patienter kan ses som en del av sjuksköterskeprofessionen och innebär ett stort krav på sjuksköterskan som ska tillgodose olika behov hos alla individuella patienter. Vi tror därför att det är betydelsefullt att sjuksköterskan får kunskap om hur det kan vara att arbeta med människor som är i slutet av livet.

No description available.

Les soins palliatifs constituent un domaine du soin où la fin de vie des personnes est en question. Ces derniers ont émergé dans un contexte médical marqué par des innovations techniques et scientifiques sans précédent et en cela, ils s’inscrivent dans une ère où les avancées sont caractéristiques d’un système qui performe. Les soins palliatifs sont donc à appréhender en lien avec la clinique de l’extrême qu’ils portent, les ramenant au rang d’une spécialité médicale parmi d’autres. Pourtant, ils sont aussi et surtout à considérer dans toute leur singularité, une clinique de l’incertitude, notamment en raison de la confrontation permanente des soignants avec la mort des patients. L’incertitude fondamentale traversant les soins palliatifs est ainsi à interroger en rapport avec une pensée autour de la mort, nécessairement significative à la croisée des expériences de chacun en soins palliatifs. C’est en direction des écrits du philosophe Vladimir Jankélévitch que nous nous tournons pour approfondir cette pensée de l’incertitude en lien avec la mort. Abordant la thématique de la mort dans sa double dimension de phénomène et de mystère, ses développements permettent de considérer la mort dans sa dimension métaphysique, existentielle mais aussi morale. En raison de ses développements autour de la morale, il ouvre également la voie pour tenter de saisir les implications éthiques, organisationnelles et politiques de l’incertitude fondamentale, au cœur de l’accompagnement mis en œuvre dans la pratique palliative. / Palliative care is a field where end of life is a central subject. They emerged in a medical context caracterised by technical and scientifical innovations. So, they exist in a era where progress represents a powerful system. We can read palliative care as regard to their dimension of « clinical of the extreme of life ». In this, they take part of medical system as « medical speciality ». They also have to be considered in their deep specificity, in relation to their dimension of « clinical of uncertainty » because of the daily confrontation with death. The fundamental uncertainty which is the main caracteristic of palliative care can be analysed in connection with a thought of death. The latter has a deep meaning for the experience of each part of palliative care experience. We can deal with this theory of fundamental uncertainty thanks to the philosopher Vladimir Jankélévitch. He approaches death in its double reality of « event » and « mystery ». His theory allows for considering death in its metaphysical, existential and moral signification. Moreover, his moral considerations open the field for analizing ethics, institutionals and politics consequences of the theory of fundamental uncertainty in connexion with the importance of caring, in palliative medicine.

O objetivo deste estudo foi realizar a tradução e adaptação transcultural, para o português do Brasil, do instrumento Edmonton Symptom Assessment System (ESAS-r) para uso em Cuidados Paliativos. A ESAS-r é uma versão revisada do instrumento ESAS e foi desenvolvida no Canadá por pesquisadoras que estudam a temática dos Cuidados Paliativos. A ESAS-r consiste de uma escala visual numérica, com gradação de zero a 10, para avaliar nove sintomas (pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, shortness of breath, wellbeing) e um sintoma adicional considerado relevante para o paciente. Utilizou-se o referencial metodológico de Beaton et al (2000) para realização do estudo, composto de seis etapas: tradução, realizada por dois tradutores independentes; síntese das duas traduções; retrotradução, por outros dois tradutores; revisão por comitê de especialistas, com a intenção de avaliar as equivalências semântica, idiomática, experimental e conceitual; pré-teste, composto por 30 participantes, sendo eles 10 pacientes, 10 familiares e 10 enfermeiras; e submissão da versão traduzida aos autores do instrumento original. Como resultado foram realizadas algumas alterações no título, enunciado e em determinados termos do instrumento para adequação da gramática e vocabulário brasileiros. De forma geral, a maioria dos participantes entendeu o significado das palavras referidas na versão traduzida da ESAS-r. Houve somente uma dúvida com relação ao termo náusea. Foi sugerida a inserção de uma explicação sobre o significado da palavra náusea, assim como recomendada a padronização do termo Sem na coluna à esquerda do instrumento e a substituição da palavra depressão por tristeza. Esta Escala poderá ser utilizada tanto por pacientes, quanto por familiares e profissionais da saúde. Entretanto, para que isso ocorra, é necessária a validação do instrumento com a verificação das propriedades psicométricas. / The objective of this study was to realize the translation and the cross-cultural adaptation to Brazilian Portuguese, of the instrument Edmonton Symptom Assessment System (ESAS-r) for use in palliative care. The ESAS-r is a revised version of the instrument ESAS and it was developed in Canada by researchers who study the topic palliative care. The ESAS-r consists of a visual numeric scale, graded from zero a 10, to evaluate nine symptoms (pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, shortness of breath, wellbeing) and an additional symptom considered relevant to the patient. We used the methodological approach of Beaton et al (2000) for the study composed of six steps: translation, performed by two independent translators; synthesis of the two translations, back translation by two translators, review by the expert committee, with the intention of evaluating the semantic, idiomatic, experimental and conceptual equivalence, pre-test consisting of 30 participants, among them 10 patients, 10 relatives and 10 nurses, and submission of translated version to the authors of the original instrument. As result some changes were made in the title, statement and some terms of the instrument in order to assure adequacy to grammar and vocabulary. In general, most study participants understood the meaning of those words in the translated version of the ESAS-r. There was only one question regarding the term nausea. It was suggested the inclusion of an explanation of the meaning of nausea, as well as recommended the standardization of term No in the left column of the instrument and the replacement of the word Depression for Sadness. This scale can be used both by patients and by relatives and health professionals, but for this to occur it is necessary to validate the instrument, with verification of psychometric properties. / El objetivo de este estudio fue la traducción y adaptación cultural para el portugués de Brasil, del instrumento Edmonton Symptom Assessment System (ESAS-r) para su uso en los cuidados paliativos. El ESAS-r es una version revisada del instrumento ESAS y fue desarrollado en Canadá por los investigadores que estudian el tema Cuidados Paliativos. El ESAS-r es una escala visual, graduada de cero a 10, para evaluar nueve síntomas (pain, tiredness, nausea, depression, anxiety, drowsiness, appetite, shortness of breath, wellbeing) y un síntoma adicional que se considere relevante para el paciente. Se utilizó el marco metodológico de Beaton et al (2000) para el estudio, compuesto de seis pasos: traducción, realizada por dos traductores independientes; síntesis de las dos traducciones, retro traducción por dos traductores, la revisión por el comité de expertos, con la intención de evaluar las equivalencias semántica, idiomática, experimental y conceptual, previa a la prueba que consta de 30 participantes, entre ellos 10 pacientes, 10 familiares y 10 enfermeras, y la presentación de la versión traducida a los autores del instrumento original. Como resultado de ello se hicieron algunos cambios en el título, la declaración y el instrumento a ciertos términos de la adecuación de la gramática y el vocabulario. En general, la mayoría de los participantes en el estudio comprendió el significado de esas palabras en la versión traducida de la ESAS-r. Había una sola pregunta con respecto a las náuseas plazo. Se sugirió la inclusión de una explicación del significado de la palabra náuseas, así como recomienda la estandarización de la palabra Sin en la columna de la izquierda del instrumento y la sustitución de la palabra Depresión para la Tristeza. Esta escala puede ser utilizado tanto por los pacientes y familiares y profesionales de la salud, pero para que esto ocurra es necesario validar el instrumento, con la verificación de las propiedades psicométricas.

Bakgrund: Antalet cancerpatienter ökar. Stöd till närstående är en av fyra dimensioner av palliativ vård. Den redan tunga belastningen på närstående, som har en döende anhörig, förväntas öka i Sverige. Personal- och kompetensbrist kan innebära osäkerhet och ohälsa för närstående. All vårdpersonal, som kommer i kontakt med palliativ vård, behöver kompetensutvecklas. För att vårdpersonal ska kunna förebygga ohälsa behövs kunskap om hur närstående upplever den palliativa vården. Syfte: Syftet var att belysa närståendes upplevelse av palliativ vård hos cancersjuka. Metod: En litteraturöversikt baserad på resultaten från tio kvalitativa studier. Resultat: Symtomlindring var mest svårhanterligt för närstående. Avsaknad av kontroll upplevdes som ett känslomässigt kaos. Det psykiska- och fysiska välmåendet minskade hos närstående. Stöd från familjen och sjukvårdspersonalen gjorde närståendes mående bättre. Psykisk och fysisk avlastning var nödvändigtför närstående. Närstående upplevde delaktighet i vården som positivt. Kompetens och kunskap var grunden för trygghet. Kommunikation och information var nödvändigt. Samspelet mellan sjukvårdspersonalen var viktigt. Personalbrist, kompetensbrist samt dåligt bemötande bidrog till dåliga upplevelser av sjukvårdssystemet. Slutsats: När stöd, avlastning och delaktighet fungerade upplevde närstående en god palliativ vård. Kunskap och information bidrog till trygghet för närstående. När behov tillgodosågs, hos patienten och närstående, upplevdes en god palliativ vård. Adekvat symtomlindring bidrog till bättre livskvalitet för både patient och närstående. Kompetensutveckling för vårdpersonal är en förutsättning för att den palliativa vården ska utvecklas. Stöd till sjuksköterskors kan förbättras då forskning lyfter att sjuksköterskor kan bli utbrända och deprimerade av att vårda palliativt. Genom att öka stödet till sjuksköterskor optimeras deras möjlighet att ge stöd till patienter och närstående. / Background: The number of cancer patients is increasing. Palliative care contains four dimensions were the support for close relatives is one of them. The already heavy burden on close relatives, who has a dying relative, is expected to increase in Sweden. The shortage of staff and lack of competence can cause uncertainty and ill mental health for relatives. All healthcare professionals who come into contact with palliative care need to develop their skills. In order for healthcare professionals to prevent illness, knowledge about how relatives are experiencing palliative care is needed. Aim: The aim was to explore the relatives’ experience of palliative care of cancer patients. Method: Literature study based on the results of ten qualitative studies. Results: Relatives experienced the symptom relief as the most difficult to handle. Lack of control caused emotional chaos. The mental and physical health decreased for relatives. Support from family and the healthcare professionals contributed to better health for the relatives. Mental and physical relief was necessary for the relatives. Relatives experienced participation in health care as something positive. Competence and knowledge made relatives feel safe. Good communication and information was necessary. The interaction between healthcare professionals was important. The shortages of staff, lack of competence and poor treatment contributed to poor experiences of the healthcare system. Conclusion: Relatives experienced good palliative care when support, relief and participation were sufficient. Knowledge and information contributed to the relatives’ feeling of safety. When patients and relatives’ needs were fulfilled, a good palliative care was achieved. Adequate relief of symptoms contributed to better quality of life for both patient and relatives. Further education of healthcare staff is necessary for the development of palliative care. Nursing support can be improved because research emphasizes that nurses can be mentally exhausted and depressed when working in palliative care. By increasing the support for nurses, their possibilities to support the patient and relatives will increase.

The hospice social movement, which emerged as a new social movement based on the ideals of providing a more humane and natural approach towards death, illness, and grief, led to the creation of community-based hospice programs across Canada. This single case study explored the factors that influenced the life course of a small, community-based hospice (Hospice Orillia) from its beginning in 1987 to 2017. A preliminary timeline was created through a review of secondary data sources which identified milestones, events and individuals who were in leadership roles in the organization. This information was then used to recruit nine key informants who participated in semi-structured interviews. Through thematic analysis, the interviews identified that the organization’s geographic location, its relationship to the formal health care system, its ability to access funding, and issues regarding advocacy and awareness all played key roles in how it developed over the years, leading to its eventual decline. / Graduate