Vývoj hospicové paliativní péče se zaměřením na Německo a Českou Republiku Development of hospice-palliative care with focus on Germany and the Czech Republic Ruth Kubíčková The aim of the thesis was to map the development, crucial moments and current .shape of hospice-palliative care and simultaneously confirm the thesis that the care of spiritual feature of dying persons has been an integral part of organized development of hospice care since its beginning and nowadays, it is still one of its principal themes. The first chapter deals with branch terminology since its clear definition is essential, not only for dialogue inside the system of palliative care providers and experts, but for interdisciplinary communication and cooperation which is - according to the definition of palliative care - the foundation of its holistic approach to patients. The second and third chapters are concerned with the development of nursing care since the ancient times to the diversification of modern hospice-palliative care at the end of the twentieth century. They deduce that the Christianity, with its central commandment to love thy neighbour as thyself, has changed the attitude to care of suffering persons, both in the nursing care and in shapes and ways of providing care. In the response to revolutionary changes in...

Bakgrund: Patienter med obotlig cancer har ofta kontakt med den palliativa vården, och kan mer eller mindre lida av oro och ångest. Sjuksköterskans ansvar och arbete för att tillgodose patientens behov och verka för en god omvårdnad anses vara viktigt. Omvårdnadsteoretikern Katie Eriksson har använts som grund i litteraturöversikten för att belysa upplevelsen av lidande, däribland oro och ångest. Syfte: Syftet var att belysa sjuksköterskans attityder till att bemöta oro och ångest, innefattande existentiella problem, hos patienter med obotlig cancer och vilka åtgärder som identifieras för att kunna främja ett gott bemötande inom palliativ vård. Metod: En litteraturöversikt baserad på 13 artiklar med både kvalitativ och kvantitativ metod. Resultat: Resultatet påvisade att vikten av en trovärdig och delaktig kommunikation var betydande för att möjliggöra patientdelaktighet. Sjuksköterskor uttryckte behov av utbildning om hur de skall kunna bemöta patientens oro och ångest samt existentiella frågor. Attityden till att utföra åtgärder ansågs ha en avgörande roll för hur behov och känslor bemöts. Konklusion: Efterfrågan av vidare utbildning kring hur sjuksköterskorna bland annat skall bemöta oro och ångest identifierades hos patienterna. Sjuksköterskan har därför en central och viktig roll i den palliativa vården. / Background: Patients with severe cancer often have contact with the palliative care, and can suffer from anxiety more or less. Nurses job and responsibility to meet the patients needs and act for a good care. Nursing theorist Katie Eriksson has been used in this study to illuminate the experience of suffering, among them anxiety. Purpose: The purpose of this study was to illuminate nurses attitudes toward meeting anxiety, including existential issues, among patients with cancer, and relevant interventions, within palliative care. Method: A litterature review based on 13 scientific articles with both quantitative and qualitative methods. Result: The result showed the importance by a truthfulness and accessory communication was meaningful to enable patient accessory. The nurses indicate a need of further education on how to meet anxiety and existential issues among the patients. Their attitudes to perform different interventions finds to have a settling role on how needs and feelings are being treated. Conclusion: The need of further education and training on how the nurses shall treat anxiety was identificated among the patients. Nurses therefore have a central and important role in the palliative care.

Palliative Notfälle nehmen einen nicht unerheblichen Anteil an der Gesamtzahl von Rettungsdiensteinsätzen ein. Die vorliegende Arbeit beschäftigt sich mit der Thematik von Einsätzen und Patientenverfügungen bei Palliativpatienten im rettungsdienstlichen Alltag.  Im Rahmen dieser Arbeit wurden Rettungsdienstmitarbeiter der Berufsfeuerwehr Essen vor und nach einer Schulungsmaßnahme zur Thematik von Patientenverfügungen und Palliativversorgung befragt.  Es zeigte sich, dass Handlungsunsicherheit im Umgang mit Palliativpatienten und Patientenverfügungen besteht. Wünschenswert ist daher die Aufnahme des Faches Palliativmedizin in die Ausbildungscurricula der rettungsdienstlichen Berufe.  Weiterhin konnte festgestellt werden, dass die gesetzlichen Rahmenbedingungen zur Feststellung der Verbindlichkeit von Patientenverfügungen für nichtärztliches Personal nicht geklärt scheinen und dass hier Nachbesserungsbedarf besteht.

<p>For most parents there is no imaginable event more devastating than the death of their child. Nevertheless, while bereaved parents grieve they are also expected to carry on with their life. The day-to-day activities that were once routine for these parents may now be challenging due to the emotional turmoil they are experiencing. To date parental bereavement has been described as complex, intense, individualized, and life-long and their grief responses are interwoven with their daily activities, but the nature of their daily life challenges are not known. </p><p>This dissertation highlights the significance of how parents respond to their bereavement challenges because bereaved parents have higher morbidity and mortality rates than non-bereaved parents or adults who have lost their spouse or parents. Many bereaved parents in their daily routines include activities that allow them to maintain a relationship with their deceased child. These behaviors have been described as “continuing bonds”, but with this dissertation the continuing bonds concept is analyzed to provide a clear conceptual definition, which can be used for future research.</p><p>Using the Adaptive Leadership Framework as the theoretical lens and a mixed method, multiple case study design, the primary study in this dissertation aims to provides knowledge about the challenges parents face in the first six months following the death of their child, the work they use to meet these challenges, and the co-occurrence of the challenges, and work with their health status. Bereaved parents challenges are unique to their individual circumstances, complex, interrelated and adaptive, as they have no easy fix. Their challenges were pertaining to their everyday life without their child and classified as challenges related to: a) grief, b) continuing bonds, c) life demands, d) health concerns, f) interactions, and g) gaps in the health care system. Parents intuitively responded to the challenges and attempted to care for themselves. However, the role of the healthcare system to assist bereaved parents during this stressful time so that their health is not negatively impacted was also recognized. This study provides a foundation about parental bereavement challenges and related work that can lead to the development and testing of interventions that are tailored to address the challenges with a goal of improving bereaved parents health outcomes.</p> / Dissertation

Bakgrund: Behovet av palliativ vård i världen är beräknat till 40 miljoner människor varje år. Palliativ vård ska förbättra livskvaliteten, lindra lidande samt se döden som en naturlig del av livet. Anhörigvårdare spelar ofta stor roll för personer med obotlig sjukdom, vilket gör att de är en viktig tillgång i palliativ vård. Syfte: Syftet med litteraturstudien var att beskriva anhörigvårdares upplevelser av att ge palliativ vård till en familjemedlem med cancer. Metod: En litteraturstudie baserad på nio kvalitativa studier framsökta i databaserna Cinahl och PubMed.  Resultat: Tre kategorier och sju subkategorier fastställdes med grund i litteraturstudiens resultat. Huvudkategorierna var: Sätta sitt eget liv på paus, Samverkan med vårdpersonal och En värdefull sista tid.  Konklusion: Anhörigvårdare behöver stöd från vårdpersonal för att inte lämnas ensamma med ansvaret över vårdandet av sin familjemedlem. Ansvarsfördelningen mellan anhörigvårdare och vårdpersonal behöver därmed tydliggöras. Stöd från vårdpersonal behövs också för att anhörigvårdare ska känna trygghet i vårdandet, samt få individuellt anpassad information och kommunikation. / Background: 40 million people are in need of palliative care each year worldwide. Palliative care should improve quality of life and relieve suffering. Family caregivers are often important for people with incurable disease, which makes them an important asset in palliative care.  Aim: The aim was to describe family caregivers’ experiences of providing palliative care to a family member with cancer. Methods: A literature study based on nine qualitative studies found in two databases: Cinahl and PubMed. Results: Three main categories were defined from the results of the literature study: Putting their own life on pause, Cooperation with healthcare professionals and A valuable last time. Conclusion: Family caregivers need support from healthcare professionals in order not to be left alone with the responsibility for the care of the family member. The distribution 0f responsibility between family caregivers and healthcare professionals also needs to be clarified. The support from healthcare professionals is also needed for family caregivers to feel secure in caring for the family member. Family caregivers also need individually adapted information and communication.

The thesis deals with the effects of professional failure and helplessness experienced by nurses working in palliative care. The objectives of this thesis were to find out whether nurses often suffer from the negative feelings, to examine the influence of the job on their personal lives, to identify the most common problems related to their jobs and to find out if they regret choosing this type of job. To achieve these objectives, the following questions were asked: What is the influence of palliative care environment on nurses' lives and personalities? What factors influence nurses' professional performance? Why did they choose this type of job? What are the most stressful situations they experience? Does the workload make them feel helpless? What helps the nurses cope with stressful situations? We used qualitative research methods and conducted half structured interviews with fifteen research participants; eight of them work in non-hospice palliative care and seven participants work in hospices. The research results showed that palliative care has an influence on nurses' personal lives to a large extent; however, not only in negative ways. The research participants find their jobs mentally demanding and hard to separate from personal lives but they do not regret choosing the job. The participants responded that they often feel helpless but not hopeless. The feeling of failure is rather rare and occurs only under specific conditions. The most common and serious problems the participants encounter were characterized as conflicts at work, work stress, patient´s worsening state of health or patient's death, communication with family of a patient who passed away, big responsibility, misunderstandings with patients or their families, taking care of confused or aggressive patients and of patients with persisting pain, death of a young patient, patient's inability to find reconciliation with their condition or patient's unawareness of their state of health. This thesis also outlines a close relationship between high demands of palliative care and burnout syndrome and could be used for further research on this topic. Simultaneously, the data received from the research participants provides an analysis of palliative care nurses' feelings and work satisfaction and will be communicated to the management of given facilities. The findings of this work could be also presented at a conference in the future.

Att vårda palliativa barn är en utmaning för sjuksköterskan. En viktig del i sjuksköterskans roll är att se till att barnet uppnår livskvalitet, att lindra lidande samt finnas som stöd både för barnet och barnets familj. En annan betydande del är att göra barnet delaktig i sin vård. Den palliativa vården för barn är lik den som ges vuxna men skiljer sig åt i hur barns tillstånd uppfattas och skillnader finns inom etik och självbestämmande. Syftet med studien är att undersöka sjuksköterskors upplevelser av att vårda barn i ett palliativt skede. Studien är en litteraturöversikt som är baserad på nio kvalitativa vetenskapliga artiklar och en vetenskaplig tvärsnittsstudie. Resultatet är uppdelat i fem teman. I resultatet framkommer det att sjuksköterskor upplever sorg, empati samt bristande kommunikation. Dessa är några av de största utmaningarna sjuksköterskan ställs inför. Utmaningarna kan leda till att sjuksköterskor uppfattar att deras yrkesprofession kan påverkas. Betydelse av stöd samt definitionen av kunskap och kompetens lyftes fram. Den palliativa vården är psykiskt påfrestande för sjuksköterskor och behovet av stöttning är omfattande. Kunskap inom palliativ vård är av stor betydelse för sjuksköterskan och bidrar till en god och säker omvårdnad.

The study investigated the experiences of formal caregivers within a community setting, and the emotional experiences of the individual caregiver. There is insufficient research into the subjective experiences and perceived role of the formal caregiver, as previous studies have concentrated on quantifying the role of the family or informal caregiver. Eleven interviews were conducted with participants from a community-based palliative care institution. The interviews explored areas of interest that surround caregiving, considering both the positive and negative factors that caregivers consider influential within the emotional experience, as well as the role of a formal caregiver. The study investigated the emotional challenges, motivations, support mechanisms and the perceived effectiveness of the coping strategies employed. The data was analysed through thematic content analysis, allowing for the selection of the most salient themes and subthemes, which converged around notions of caregiving and the positive and the negative elements within the caregiving experience of formal caregivers. The data was considered in relation to an interpretative phenomenological perspective, which allowed for the contextualisation and interpretation of the knowledge obtained through the study, and the augmentation of this knowledge with the knowledge already existing in the field of caregiving. The themes were able to provide an understanding of how caregivers construct their role as a formal caregiver, in comparison to the informal caregiver, and their perception of the importance of formal knowledge within caregiving. The themes also provided an understanding of the coping mechanisms and the contextual factors that interrelate with a caregiver’s ability to manage the difficulties within caregiving and their emotional reactions. These findings illustrated that community-based caregiving, although subject to significantly more stressors, also has significant positive aspects that could be fostered to operate as protective mechanisms.

Bakgrund: Hjärtsvikt är en folksjukdom som förekommer i slutet av livet vid de allra flesta hjärtsjukdomarna. Symtom som andnöd skapar ångest och lidande för patienten vilket ställer krav på sjuksköterskan att hitta lindrande omvårdnadsåtgärder. Som teoretisk referensram valdes Kari Martinsens omvårdnadsteori som inriktar sig på de svagaste med stort behov av omsorg och hjälp med omvårdnad. Syfte: Att beskriva sjuksköterskors uppfattningar av god omvårdnad till patienter med hjärtsvikt i sent palliativt skede.   Metod: Studien genomfördes som en kvalitativ intervjustudie med fenomenografisk forskningsmetod.  Resultat: Sjuksköterskors uppfattningar om god omvårdnad är att lindra symtom med hjälp av läkemedel, genom att utföra omvårdnadshandlingar samt att ge omsorg genom mänsklig närvaro. Information till och från patienten och anhöriga var viktigt för en god vård. Sjuksköterskor visade en vilja att ge den bästa vården och arbeta tillsammans i team med en helhetssyn för patienten. Hinder för den goda omvårdnaden var brist på mänsklig närvaro, tid och kunskap hos omvårdnadspersonal om sjukdomens symtom. Slutsats: En organisation som gör det möjligt för sjuksköterskan att vara mer närvarande hos patienten lindrar symtom och ger ett mindre lidande. Utbildning av dem som utför omvårdnad ger kunskap och en större förståelse för patienten. / Background: Heart failure is a common disease that occurs at the end of life in most heart diseases. Symptoms such as shortness of breath create anxiety and suffering for the patient, which requires the nurse to find relieving nursing actions. The theoretical framework was the nursing theory of Kari Martinsen that focus on the weakest with a great need of care and help with nursing. Purpose: To describe nurses' perceptions of good care to patients with heart failure in late palliative stages. Method: The study was conducted as a qualitative interview study with phenomenographic research method. Result: Nurses' beliefs about good nursing are to alleviate symptoms with the help of drugs, to perform nursing actions and to provide care through human presence. Information to and from the patient and relatives was important for good care. Nurses showed a willingness to provide the best care and work together in teams with a holistic view of the patient. Obstacles to the good nursing care were lack of human presence, time and knowledge of nursing staff about the symptoms of the disease. Conclusion: An organization that allows the nurse to be more present at the patient relieves symptoms and gives less suffering. Education of those who perform nursing provides knowledge and a greater understanding of the patient.

Os Cuidados Paliativos (CPs) são imprescindíveis para o tratamento integral e humanizado de pessoas com doenças crônico-degenerativas potencialmente fatais. As avaliações, além de direcionarem a prática clínica dos profissionais, também revelam o impacto da doença no cotidiano dos pacientes; as avaliações de Qualidade de Vida (QV) tornam-se necessárias no contexto dos CPs e podem ser feitas por meio da utilização de instrumentos de medidas de construtos que sejam válidos e confiáveis. A escala Palliative care Outcome Scale (POS), desenvolvida na Inglaterra e amplamente difundida na literatura internacional, mostrou-se válida e confiável para avaliar a QV de pacientes em CPs. Logo, o objetivo deste estudo foi validar, para o português do Brasil, a versão self (destinada ao paciente) da POS (a POS-Br). Trata-se de um estudo metodológico, do tipo transversal, de caráter quantitativo e descritivo, com pacientes oncológicos em CPs. Foram realizadas as etapas de adaptação cultural, validação semântica, teste piloto e etapa de campo. O cenário de estudo foi um hospital público, universitário, de elevada complexidade, localizado no interior do Estado de São Paulo. A coleta de dados contou com 21 participantes no pré-teste, 50 participantes no teste piloto e 200 participantes na etapa de campo. Foram aplicados os instrumentos: POS-Br (versão self adaptada), questionário de caracterização clínica e sociodemográfica e o European Organization for Research and Treatment of Cancer Quality of Life Questionnarie Core 30 (EORTC QLQ-C30); além desses, foram aplicados também questionários de validação semântica e de avaliação geral da POS-Br (pré-teste). A fidedignidade foi avaliada por meio da consistência interna da escala total (alfa de Cronbach); a estrutura fatorial da escala foi verificada pela Análise Fatorial Confirmatória (AFC); e a validade de construto foi avaliada através da validade convergente (assumindo correlações entre a POS-Br e o EORTC QLQ-C30). Durante a validação semântica (pré-teste), podem-se perceber a aceitação e a compreensão dos pacientes acerca da POS-Br. Todos os pacientes consideraram os itens da POS-Br relevantes para a sua situação/condição clínica. A fidedignidade da escala foi comprovada pelo alto grau de consistência interna, com valor do coeficiente alfa de Cronbach de 0,82. A escala POS-Br manteve sua estrutura fatorial de dois fatores, nomeados fator 1 -POS-Br - Psicológico? e fator 2 -POS-Br - Atendimentos nos CPs?, com valores de RMSEA = 0,072, CFI = 0,992 e TLI = 0,987. Em relação à validade de construto, foi observada validade convergente adequada (correlações superiores a 0,4) para o fator 1 e o domínio -funcionamento emocional?, fator 1 e os sintomas -fadiga? e -dor?, o fator 2 e os domínios -funcionamento social? e -desempenho de papel?. O modelo de risco proporcional de Cox mostrou que, a cada ponto obtido na escala POS-Br, o risco de morte aumentou em 12,6%. Os resultados encontrados apontam que a POS-Br é um instrumento válido e fidedigno que poderá ser incluído na prática clínica e nas pesquisas com pacientes em CPs / Palliative Care (PC) is essential for the comprehensive and humanized treatment of people with potentially fatal chronic-degenerative diseases. The evaluations, besides directing the clinical practice of the professionals, also reveal the impact of the disease in the daily life of the patients; Quality of life (QoL) assessments are necessary in the context of PC, and they can be made through the use of valid and reliable construct measurement instruments. The Palliative care Outcome Scale, developed in England and widely disseminated in the international literature, proved to be valid and reliable for assessing the QoL of patients in PC.Therefore, the purpose of this study was to validate, for the Portuguese of Brazil, the self version (intended for patient) of the POS (the POS-Br). This is a validation study of scale, cross-sectional, quantitative and descriptive, with oncology patients in PC. The cultural adaptation, semantic validation, pilot study and the field phase were undertaken. The study setting is a public, tertiary university hospital care in the state of São Paulo. Data collection included 21 participants in the pre-test, 50 participants in the pilot test and 220 participants in the field phase. The following instruments applied was: POS-Br (revised), clinical and sociodemographic characteristics questionnaire and the European Organization for Research and Treatment of Cancer Quality of Life Questionnarie Core 30 (EORTC QLQ-C30); apart from these questionnaires, the semantic validation and general evaluation of POS-Br (pre-test) were also applied. Reliability was assessed by the internal consistency of the full scale (Cronbach\'s alpha); the factorial structure of the scale was verified by Factorial Confirmatory Analysis (AFC); and construct validity was assessed by convergent validity (assuming correlations between the POS-Br and the EORTC QLQ-C30). During the semantic validation (pre-test), the patient\'s acceptance and understanding of the POS-Br. 100% of the patients considered POS-Br items relevant to their clinical situation / condition. The reliability of the scale was evidenced by the high degree of internal consistency, with Cronbach\'s alpha coefficient value of 0.82. The POS-Br scale maintained its factorial structure of two factors, named factor 1 \"POS-Br - Psychological\" and factor 2 \"POS-Br - Attendance in PC\", with RMSEA values = 0,072, CFI = 0,992 and TLI = 0,997. Regarding construct validity, adequate convergent validity (correlations bigger than 0.4) for factor 1 and the \"emotional functioning\" domain, factor 1, and \"fatigue\" and \"pain\" symptoms, factor 2 and \"Social functioning\" and \"paper performance\" domains. The Cox proportional hazards model showed that at each point obtained on the POS-Br scale the risk of death increased by 12.6%. The results point to validity and reliability of the POS-Br, an instrument that can be included in clinical practice and research with patients in PC