Bakgrund och problemformulering: Palliativ vård är en av de mest prioriterade vårdformer som svensk hälso- och sjukvård förväntas att bedriva. Den vilar på en speciell vårdfilosofi som bör ligga till grund för planering och genomförande av vården i livets slutskede. Denna filosofi genomsyras bland annat av WHO:s definition vilket innebär en aktiv helhetsvård i ett skede då patienten inte svarar på en botande behandling. Studier har visat brist på kontinuitet och skillnader i kvalitet och tillgänglighet för den enskilda patienten i livets slut. Mot denna bakgrund har ett vårdprogram i palliativ vård arbetats fram som ska ligga till grund för palliativ vård i Södra Älvsborg. Denna uppsats gjordes i ett tidigt skede av implementering av det aktuella vårdprogrammet.Syfte: Studien syftar till att beskriva personalens upplevelser av palliativ vård på avdelningar där det huvudsakligen bedrivs kurativ vård i ett tidigt skede av implementering av vårdprogram i palliativ vård vid livets slut. Vidare syftar studien till att beskriva personalens definition av palliativ vård.Metod: Sju öppna intervjuer gjordes med sjuksköterskor och undersköterskor verksamma vid olika sjukhusavdelningar vid Södra Älvsborgssjukhus. Materialet analyserades enligt kvalitativ innehållsanalys.Resultat och diskussion: Studiens resultat visar på möjligeter samt hinder i vården av palliativa patienter. Personalens upplevelser av hinder har sin grund i bland annat konflikter, bristande kontinuitet samt okunskap om den palliativa vårdens innehåll. Möjligheter definieras som individuell anpassad vård samt ett vårdande vårdkultur. Diagnosen spelar en avgörande roll för att få tillgång till en helhetsvård som den palliativa vårdens filosofi förespråkar. Alla informanter är överens om definitionen palliativ vård, men det föreligger skillnader i vilket innebörd personal respektive organisation tillskriver denna vårdform. Vårdande vårdkultur samt synen på döendet är viktiga faktorer som påverkar genomförandet samt utformningen av den palliativa vården. Handledningens betydelse diskuteras och belyses i diskussionen / <p>Program: Fristående kurs</p><p>Uppsatsnivå: D</p>

Bakgrund: Årligen avlider cirka 560 barn i Sverige. Sjuksköterskor har en central roll i omvårdanden av barn i palliativt skede. En familjecentrerad omvårdnad kan hjälpa till att skapa ett meningsfullt avslut av livet. Här har sjuksköterskor ett ansvar för att tillmötesgå patienter och anhörigas värderingar, önskemål och känslor. Vårdandet av palliativa barn står i direkt kontrast till förväntningarna om ett långt och lyckligt liv, vilket kan bidra till stora emotionella utmaningar för sjuksköterskor. Syfte: Belysa sjuksköterskors upplevelser av att vårda barn i palliativt skede. Metod: En litteraturöversikt med kvalitativ utgångspunkt. Resultat: Ur analysen av insamlade data framgick fyra teman; att skapa ett meningsfullt slut, kommunikation och att skapa relationer, en kamp mot bristande organisatoriska förutsättningar och att acceptera ett barns bortgång - en problematisk process. Slutsats: Sjuksköterskor upplever att vårda barn i ett palliativt skede är ett emotionellt krävande arbete där målet är att skapa ett meningsfullt avslut av livet. Det råder brist i utbildning, kompetens och organisationens förmåga. För att hantera den känslomässiga bördan är sjuksköterskor i behov av hanteringsstrategier. Det krävs vidare utbildning och forskning för att öka kunskap om ämnesområdet. / Background: Annually about 560 children pass away in Sweden.  Nurses have a central role in the care of palliative children. Through their care, nurses should strive for a family-centered nursing method and meet the patients and family’s values and emotions in order to create a satisfactory and meaningful end of life. The care of a palliative child stands in direct contrast to the image of a long and happy life, which contributes to great emotional challenges for nurses. Purpose: To illuminate nurses' experience of caring for children in the palliative stage. Method: A literature-based study with a qualitative approach. Results: Four themes emerged from the collected data; to create a meaningful end of life, communication and to create a connection, a struggle against lack of organizational conditions and to accept a child's passing - a problematic process. Conclusion: Nurses feel that it´s an emotionally demanding job where it´s desirable to be able to create a satisfactory and meaningful end of life. However, there is a lack of education and competence for nurses to be able to provide the desired care and to handle their emotional burden. Further education and research are required to improve the nurse's knowledge of the subject.

Alltfler människor har en önskan om att få leva sina sista dagar i hemmet. Att vara närstående till en döende person innebär ofta en enorm påfrestning och en krisartad livssituation. Närstående ställs inför svåra utmaningar och upplever en börda i att upprätthålla vardagen och utföra praktiska göromål i vården av den sjuke. Samtidigt får de hantera både den egna och den sjukes sorg och förtvivlan. De närstående ser sin insats som ett sätt att ge tillbaka något av den kärlek de själva fått och har en önskan om att patientens sista vilja ska respekteras. I många fall beskriver närstående att de varit i behov av stöd för sin egen skull, men också stöd för att klara av det dagliga livet och vården av den sjuke. Sjuksköterskor inom ett palliativt hemsjukvårdsteam kan i ett tidigt skede etablera en god kontakt med både patient och närstående. Denna vårdrelation är ytterst värdefull för närståendes upplevelse av trygghet och delaktighet, men ligger också till grund för deras gemensamma arbete kring vården. Syftet med studien är att beskriva vad närstående upplever som betydelsefullt i mötet med det palliativa teamet, när vården utförs i hemmet. Detta arbete bygger på en litteraturstudie enligt Axelsson (2012) och baseras på kvalitativa studier. Vårt resultat bildar två teman och fem underteman. Resultatet visar närståendes behov av trygghet och stöd. Det visar också på vilket sätt sjuksköterskan i teamet kan lindra närståendes lidande och medverka till en ökad trygghet i en svår situation. / Program: Sjuksköterskeutbildning

Palliativ vård förekommer på olika arbetsplatser för sjuksköterskor. Av den anledningen var det angeläget att genom en allmän litteraturstudie av vetenskapligt granskade originalartiklar undersöka vilka känslor sjuksköterskor påverkas av inom palliativ vård. Syftet var att beskriva känslor som sjuksköterskor påverkas av i arbetet inom palliativ omvårdnad. Resultatet resulterade i tre kategorier Sårbarhet, Vanmakt och Arbetsglädje. Sjuksköterskors sårbarhet utgjordes av känslor av osäkerhet, okunskap och sorg kring arbetet inom palliativ vård och de upplevde bristande stöd i känslorna som uppstod. Sjuksköterskors vanmakt utgjordes av känslor av frustration och hjälplöshet kring att inte kunna tillgodose god omvårdnad eller värdig död samt när de inte kunde tillmötesgå krav som patienters närstående hade som ansågs gå emot patienters intresse. Sjuksköterskors arbetsglädje utgjordes av känslor av tillfredsställelse kring att veta att de utförde ett värdefullt arbete och att patienter och patienters närstående var i centrum samt ett välfungerande team i vården. Resultatet visar att det behövs vidare forskning för att tydliggöra arbetsglädjen inom palliativ vård och sjuksköterskeutbildningen behöver vara mer omfattande för att förbereda sjuksköterskor på känslor de kan påverkas av i arbetet inom palliativ vård. / Palliative care occurs in various workplaces for nurses. For this reason, it was important through a general literature study of scientifically reviewed original articles to investigate which emotions nurses are affected by in palliative care. The purpose was to describe feelings that nurses are affected by in the work of palliative care. The result resulted in three categories of Vulnerability, Powerlessness and Job satisfaction. Nurses' vulnerability consisted of uncertainty, ignorance and grief in the palliative care and the lack of support in the feelings that arose. Nurses' powerlessness consisted of frustration and helplessness about not being able to cater for good nursing or dignified death and when they could not meet demands that patients’ relatives considered to be in the interests of patients. Nurses' job satisfaction consisted of feelings of satisfaction about knowing that nurses performed a valuable job and patients and patients' relatives were in the center and a well-functioning team in the care. The findings suggest that further research is needed to clarify the job satisfaction in palliative care and nursing education need to be more comprehensive in order to prepare nurses for feelings they can be affected by in the field of palliative care.

O envelhecimento populacional associado ao aumento progressivo da ocorrência do câncer tem mudado o perfil da mortalidade da população, o que exige do Sistema Único de Saúde uma organização para o oferecimento de cuidados a pessoas com câncer avançado, em cuidados paliativos. O objetivo deste estudo foi conhecer a assistência prestada a pessoas com câncer avançado e seus familiares, na rede de atenção à saúde de Ribeirão Preto, a partir de suas histórias de vida e na perspectiva dos próprios usuários. Trata-se de um estudo com abordagem qualitativa desenvolvido com pessoas com câncer avançado e seus familiares, cujos dados foram coletados em encontros individuais, previamente agendados, com base na modalidade de história de vida. A pesquisa foi aprovada pelo Comitê de Ética em Pesquisa com Seres Humanos da Escola de Enfermagem de Ribeirão Preto da Universidade de São Paulo (CAAE: 51204015.0.0000.5393). Foram 18 pessoas entrevistadas, sendo que a seleção dos participantes se deu por amostragem \"não probabilística\", dentre a população atendida pela Associação Brasileira de Combate ao Câncer Infantil e Adulto (ABRACCIA), pelos Núcleos 1 e 2 da Estratégia de Saúde da Família e pelo Serviço de Assistência Domiciliar, de Ribeirão Preto/SP; a seleção dos familiares foi por indicação do paciente, por serem seus principais cuidadores. As entrevistas foram audiogravadas e transcritas de modo literal e integralmente. A análise dos dados foi realizada de acordo com a Análise de Conteúdo Temático. Os resultados foram organizados em duas grandes unidades de análise - uma referente ao sistema de saúde e outra sobre a vivência pessoal e familiar no processo de cuidado. Dentre essas unidades, foram abordados temas como a importância que o oferecimento de um serviço de qualidade acarreta na história de vida das pessoas com câncer e seus familiares, envolvendo tanto questões relacionais e de comunicação, como estruturais e ambientais do próprio serviço onde é cuidado. Embora se tenha observado uma falta de informação sobre possibilidades terapêuticas, como o cuidado paliativo, os relatos indicaram que os participantes sentem-se gratos pela oportunidade do tratamento contra o câncer. Portanto, há a necessidade de que seja implantada uma política de saúde específica de cuidado paliativo, sendo esta de forma eficaz e proveitosa, tanto para os profissionais de saúde como para os as pessoas adoecidas e seus familiares / Population aging in Brazil and the progressive increase in cancer occurrence have changed the mortality profile in the population, which requires the Brazilian National Healthcare System to manage the offering of proper health care to patients with advanced cancer and in need of palliative care. The objective of this study was to gain an understanding of the health care provided to people with advanced cancer and to their families, from their life stories and their own perspective as users of the Ribeirão Preto healthcare network. Qualitative study of people with advanced cancer and their families in which the data collection was based on the life story approach and was carried out in scheduled individual meetings. The study was approved by The Human Subjects Research Ethics Committee from Ribeirão Preto Nursing School - University of São Paulo, under number \'CAAE:51204015.0.0000.5393\'. We interviewed 18 subjects who had been selected by non-probability sampling from the population which is assisted by 3 institutions: The Brazilian Association for the Combatting of Child and Adult Cancer (ABRACCIA); The Family Health Strategy Units 1 and 2; and The Ribeirão Preto Home Healthcare Service. The selection of family members was based on the patients\' recommendations, since those are their main caregivers. The interviews were audio recorded and transcribed verbatim and in full. Data analysis was conducted by Thematic Content Analysis. The results were organized into two main units - one on the healthcare network and another on the personal and family life in the home care process. Within these units we addressed themes like the impact of the health service quality on the life stories of people with cancer and their families, involving not only the relationship and communication issues but also the structure and environment of the health service itself. Even though we observed a lack of information on therapeutic possibilities, such as palliative care, the reports indicate that the participants feel grateful for the opportunity of cancer treatment. Therefore, a specific health policy on palliative care needs to be implemented and this must be done in an effective and beneficial way for both the health professionals and for the patients and their families

A linfangite pulmonar neoplásica (LPN) é a disseminação intrapulmonar de células neoplásicas metastáticas via vasos linfáticos, englobando 6 a 8% das metástases pulmonares. Seu desconforto sintomático tem grande impacto na qualidade de vida (QdV) e seu prognóstico é muito reservado. Nosso objetivo foi avaliar os aspectos clínicos, o tratamento, a QdV e a sobrevida em LPN, em um estudo prospectivo. O seguimento mediano foi de 32 dias; 79% dos pacientes foram seguidos por menos de 6 meses, devido a evolução desfavorável e óbito. A idade mediana dos pacientes foi de 60,5 anos; 65% eram mulheres. A maioria dos sítios primários de neoplasia foram pulmão e mama (88%). A QdV estava comprometida, mas podiam ter algum benefício terapêutico, especialmente com corticosteróides, e a quimioterapia melhorou a sobrevida. Algumas variáveis foram estatisticamente significantes para predizer o status de sobrevida em um mês: Karnofsky performance scale (KPS)>=60%, hemoglobina(Hb)>=10 g/dL, LPN unilateral, PO2>=60 mmHg, tratamento oncológico sistêmico e sem necessidade de ventilação assistida não-invasiva. Preditores significantes de maior sobrevida mediana foram: KPS>=60%, SpO2>=90%, Hb>=10 g/dL, sem hipoxemia (PO2>=60 mmHg), sem necessidade de oxigenioterapia, tratamento com opióide fraco, tratamento oncológico sistêmico e ausência de ventilação assistida. O tratamento sintomático deve ser ativo, oferecendo melhor QdV aos pacientes e familiares e o tratamento etiológico é importante. As avaliações de QdV facilitam a relação médico-paciente, além da informação prognostica ser crucial para ajudar na definição e planejamento terapêuticos, uma vez que análises de parâmetros de custo-benefício e metas realistas são essenciais para cuidados oncológicos paliativos de boa qualidade, especialmente em síndromes com prognóstico reservado, tal como a LPN. / Our objective was to evaluate clinical aspects, treatment, QoL, and survival, in NPL in a prospective study. Median follow-up was of 32 days; 79% percent of patients were followed for less than 6 months, due to bad outcome. Median age was 60.5 years; 65% were female. Most primary tumor sites were lung and breast cancers (88%). QoL was compromised, but could have treatment benefit, especially with corticosteroids, and chemotherapy improved survival. Some variables were statistically significant for predicting survival status in one month, such as: Karnofsky performance scale (KPS)>=60%, hemoglobin>=10 g/dL, unilateral NPL, PO2>=60 mmHg, oncological systemic treatment, and no need for noninvasive assisted ventilation. Significant predictors of longer median survival were: KPS>=60%, SpO2>=90%, hemoglobin>=10 g/dL, without hypoxemia (PO2>=60 mmHg), no need for oxygen therapy, weak opioid treatment, systemic oncological treatment, and absence of assisted ventilation. Symptomatic treatment must be active, offering better QoL to patients and their families, and etiological treatment is important. QoL evaluation facilitates patient-physician relationship, and prognostic information is crucial to help in defining treatment plan, since cost-benefit parameter analysis and realistic goals are essential in good-quality palliative cancer care, especially for syndromes with poor prognosis, such as NPL.

Bakgrund: Palliativ vård i livets slutskede bör så långt som möjligt verka för att personen får dö på den plats som överensstämmer med uttryckt önskan, i närvaro av för den sjuka personen betydelsefulla personer. De flesta som drabbats av en allvarlig obotlig sjukdom önskar att få vårdas och dö i sitt eget hem. Trots det dör de flesta på sjukhus. Syfte: Att beskriva sjuksköterskans erfarenheter av varför den palliativa vården i hemmet avbryts.  Metod: Kvalitativa intervjuer genomfördes med 11 sjuksköterskor verksamma i palliativ hemsjukvård. Materialet analyserades med induktiv innehållsanalys.  Resultat: Vid analysen bildades tre kategorier. Förändrade förutsättningar, som innebär att personen som är sjuk och närstående behöver uppleva trygghet, orka och vara införstådda i situationen. Hemmet blir arbetsplats. Att skapa plats för vård och ha flera, ibland okända personer i hemmet kan vara svårt av integritetsskäl. Vårdens otillräcklighet innefattar kompetens och tillgänglighet inom hemsjukvården, men också organisationens struktur och samverkan med andra vårdgivare.  Slutsats: Ska personer i palliativ vård kunna kvarstanna i hemmet behövs mycket resurser och stöd från hemsjukvård och läkare. Orsakerna till att personer i palliativ vård lämnar sina hem är att de söker mer vård och stöd. Det borde vara av intresse att stärka hemsjukvårdens förutsättningar. / Background: Palliative end of life care should facilitate for sick persons to die in a place complied with expressed desire, in presence of significant people. Most people affected by serious incurable diseases, wish to be cared for and die at home. Despite this, most people die in hospitals. Aim: To describe nurses' experiences of why palliative care in the home gets interrupted. Methods: Qualitative interviews were conducted with 11 nurses in palliative care. The material was analyzed with inductive content analysis. Results: The analysis formed three categories. Changed conditions, meaning that the person and the relatives need to experience security, have strength and need to be aware. The home becomes a workplace. To create room for care and have multiple, sometimes unknown people present, can affect the privacy. Inadequacy of care includes skills and availability within the care, but also the organization's structure and collaboration with other health care providers. Conclusion: If people in palliative care should be able to remain at home, much resources and support are needed from home care and physicians. The reason that people in palliative care leave their homes is that they are seeking for more care and support. It should be of interest to strengthen home care conditions.

The emotional impact of serious illness in families is recognised. To enhance well-being in families living we must understand how distress is experienced within families; from this, evidenced-based systemic distress interventions can be derived. However, the success of systemic intervention programmes is reliant on whether families will seek help (or not) for distress. This PhD by publication explores emotional distress and help-seeking in families living with advanced cancer. Papers one and two used systematic review techniques. Paper one evidenced distress as a systemic construct and proposes the tiered model of distress to convey current understandings. Paper two offers the attaining normality model to convey why some people seek help for distress to achieve a new normality whereas some choose not to seek help to maintain normality. Together, these papers evidence gaps in systemic understandings of distress and help-seeking; from this an exploratory cross-sectional multiple case study of families was proposed. Papers three and four provided methodological underpinning to this research through the development of the DESCARTE model: The Design of Case Study Research in Healthcare (paper three) used in the case study design; paper four reflects on multi-perspective interviewing methods used. Distress and help-seeking are conceived as systemic relational phenomena, occurring within the family system and arising from relational interaction with healthcare. Distress is conveyed through four themes: interdependent distress, living in uncertainty, unnecessary distress and oscillatory distress; from this, possible systemic intervention designs are offered (paper five). Non-help-seeking for distress was the predominant response in families. The mutuality model of help-seeking is proposed to synthesise current understandings (paper six). Families describe how healthcare interactions cause unnecessary distress and shapes families’ help-seeking behaviours. Findings indicate significant gaps between the rhetoric of palliative care policy and families’ experience. To improve families’ wellbeing, relational care must be embedded in policy and practice.

Background: The use of telemedicine was gaining momentum. Although the strength of the therapeutic alliance (TA) correlated with treatment outcomes, there was no research exploring the skills, attitudes and behaviours that enhanced the TA during Skype consultations in palliative care. Aims: This study identified the skills, attitudes and behaviours that affected the TA between palliative care patients and health care professionals during Skype consultations and identified strategies that enhanced the TA. Study Design: Two cycles of action research engaged the participants in self-reflective inquiry and encouraged the identification of strategies that enhanced the TA and the Skype experience. Participants: Six health professionals and nine patients were recruited from a Hospice out patient service in one Health Authority in England. Data Collection: Data from the audio-recorded consultation were managed quantitatively and the TA was measured using the Working Alliance Inventory (S). Qualitative data were collected from participant interviews and focus groups attended by the professionals. Data Analysis: The analysis ran in parallel with the data collection, started after the first consultation and all sources of data were cross-referenced. Thematic analysis was used to sequentially code the qualitative data to help identify, examine and record patterns within the data set. Findings: The findings suggested that it was possible to establish and a positive therapeutic alliance between health professionals and palliative care patients when using Skype. There was a shift in perception for those health professionals who had reservations about their ability to establish a therapeutic alliance (TA) via a computer link. It was demonstrated that advanced communication skills were transferrable between face to face and video consultations. No additional communication skills training was needed to enable a strong TA when using Skype. Including some social talk, working with the patient’s as opposed to the professional’s agenda and actively offering solutions improved the Skype experience for the patients. The strategies that health professionals promoted to enhance the TA included using Skype with appropriately selected patients to complement the existing Service. Mandatory training in the effective use of Skype was recommended even for those health professionals who used Skype socially. Clarification to address the challenge of clinical governance was recommended. In keeping with an action research design the change impacted on both the health professionals own practice and the Organisation’s approach to telemedicine. The potential for using action research to engage nurses and doctors in critical self-reflective inquiry and to empower them to be change facilitators was demonstrated. Conclusion: Although a small sample size, this study identified strategies that enhanced the TA during Skype consultations. The findings were significant because they added to the current body of knowledge about using Skype to facilitate consultations within the palliative care population. Additionally, the findings may be transferable to different populations and healthcare contexts.

Background: In Sweden many people are in need of palliative care in end of life. The goal with palliative care is to create conditions to improve quality of life when disease can no longer be cured. A natural step in the dying process is that the patients stop eating and this can be difficult to handle for both the patient and their close relatives. Here, the nurse becomes a key to motivate and support. Aim: The aim was to highlight the experience of nutrition in palliative care for patients and close relatives. Method: A literature-based study based on analysis of nine qualitative scientific studies. Results: Themes that emerged in the new result was A desire for extended life, A change in everyday life and Food as a consideration, and associated subthemes. Close relatives often used food as a way of showing love and nursing while patients eat to reduce the anxiety of their close relatives, they ate to please. Conclusion: Common to the result was that both patients and close relatives experienced a reduced quality of life related to nutrition and as a reminder that death was approaching. Food was seen as a central and health promoting part of everyday life and a significant part of the social community. / Patienter kan få behov av palliativ vård när de drabbats av en obotlig sjukdom. Detta påverkar både patienten och dess närstående. Denna studies syfte är att belysa patienters och närståendes upplevelser av nutrition inom palliativ vård. Resultatet i denna studie bygger på vårdvetenskapliga artiklar och visar att patienter och närstående upplever en önskan om att förlänga livet. Patienter och närstående ser mat som en symbol för deras hälsa och ett sätt att hålla kvar vid livet, de upplevde också en maktlöshet och förnekelse kring sjukdom och den oundvikliga döden. De upplever en förlorad gemenskap och en annorlunda inställning till mat vilket resulterade i en förändrad vardag. Mat beskrivs som omtanke, det framkommer att patienter inte äter för sin egen skull utan för att behaga närstående och för närstående är mat ett sätt att visa sin kärlek. Resultatet visar att det kan uppstå konflikt mellan närståendes oro och patienters självbestämmande. I sjuksköterskans roll är det viktigt att förstå och respektera deras tankar och känslor för att kunna lindra lidandet.