The overall purpose of this thesis is to illuminate meanings of living with severe chronic heart failure (CHF) in palliative advanced home care (PAHC) as disclosed through patients’, close relatives’ and nurses’ narratives. This thesis comprises four papers that illuminate the phenomenon from various perspectives and with different focus. In paper I four patients with severe CHF in PAHC were interviewed. In paper II three of their close relatives were interviewed. In paper III one man and his wife in PAHC were interviewed at 3-5 month intervals over a 4.5-years period. In paper IV 11 nurses in PAHC were interviewed. In all papers narrative interviews were conducted and the text was interpreted using a phenomenological-hermeneutic method. The result shows that meanings of living with severe CHF in PAHC is to be ‘knocking on death’s door’ yet surviving. This means never knowing what to expect of tomorrow as one suffers from a complex array of unpredictable, interwoven symptoms. The course of the illness forces sufferer to ride a symbolical ‘roller coaster’, an ongoing oscillation between ‘ups and downs’. Being offered a safety belt in the ‘roller coaster’ by the PAHC team means feelings of safety (I). Meanings of being a close relative of a person with severe CHF in PAHC is to be following the life- threatening ups and downs that the ill person goes through. It is like being a fellow passenger on the ‘roller coaster’ ride that is their loved one’s disease, with burdensome responsibility for easing the ‘downs’ and supporting the ‘ups’. This means being on primary call, always on standby to mediate security and pleasure. In the deepest downs it is also to call for the back-up call i.e. the PAHC team (II). Meanings of living the ‘ups and downs’ over time is being captive in a roller-coaster ride, side by side, with the ‘ups and downs’ caused by the illness. Living close to death is inescapable when recurrent periods of deepest ‘downs’ force one to face that one’s life together is coming to an end. The relationship between the spouses is severely tested but seems to withstand the strain and meaning is found in togetherness in life. Sharing the safety belt on the ‘roller coaster’, offered by the PAHC team, evokes feelings of security. However, the safety belt is adjusted to the man with severe CHF leaving the wife partly without comfort and at times uncertain, especially in the deepest ‘downs’ (III). Meanings of being a palliative nurse for patients with severe CHF in PAHC is being firmly rooted and guided by the values of palliative culture. Being a facilitator for the patient with CHF to live his/her everydaylife in the best way possible is difficult, challenging but overall positive. The nurses get into a tight corner when palliative culture values clash and do not correspond to nurses’ interpretation of what is good for the patient with severe CHF. There is a limit to nurses’ pliability to patients’ and close relatives’ will, as they are strongly convinced that resuscitation is not an option. Nurses have already made up their mind about that they do not perform heart- lung resuscitation (IV). The comprehensive understanding is that meanings of living with severe CHF in PAHC is being captive in a ‘roller-coaster’ life with varying periods between unpredictable improvement and deterioration of the body, for the rest of life. Living with the unpredictable, deteriorated body means to oscillate between enduring the suffering in ‘downs’ and enjoying life in ‘ups’ (I-III). Living with death so close over and over again i.e. being in a limit situation evokes feelings of uncertainty (I-IV) and confidence (I-III). Being positive dependent on PAHC facilitates a life as normal as possible in togetherness at home (I-IV). The comprehensive understanding of the four papers (I-IV) are discussed in the light of a theoretical framework from the German psychiatrist and philosopher Karl Jaspers thoughts about limit situation, the Danish philosopher K.E Lögstrup thoughts about the ethical demand, palliative theories and relevant empirical studies.

Congestive heart failure (CHF) is a disease with increasing incidence, which requires an adequate and costly management. Repeated hospitalisations due to decompensated CHF contribute to disease progression and herald dismal prognosis. An important goal of heart failure clinics is reduction in number of hospitalizations due to decompensated CHF. The main approaches to reach this aim seem to be effective diagnostics and treatment of CHF, and importantly, education of patients and their families. We aimed to evaluate knowledge of CHF patients regarding self-care in secondary prevention of CHF. We constructed three hypotheses and three research questions to reach the goal of the project. The theoretical part described recommended life-style interventions, pharmacologic and non-pharmacologic CHF management, and specifically, the role of nurses in education of patients with CHF. The practical part described the methods of analysis, the study group and the process of evaluation. To fulfil the study goal, we performed collection of data using qualitative and quantitative methods of research. The qualitative part of the research project included a non-standardized questionnaire for patients with CHF. A total of 260 questionnaires were distributed in six heart failure clinics. 183 completed questionnaires were returned and analysed. The obtained data were evaluated using descriptive statistical methods. Pearson´s chi-test and Student´s t-test were applied to test the hypotheses. Collection of qualitative data was performed using the technique of a semi-structured interview based on pre-prepared questions. The study respondents included general nurses from out-patient heart failure clinics. Six of nine contacted nurse respondents agreed to participate. Answers were recorded on Dictaphone. Data were analysed using the method of "card display". The quantitative part tested the following hypotheses: 1. CHF patients know symptoms and signs of decompensated CHF. 2. CHF patients follow the life-style recommendations. 3. CHF patients perform daily self-monitoring of their weight, blood pressure and pulse. Our study revealed insufficient knowledge of patients regarding symptoms of possible CHF decompensation. This finding was alarming because suboptimal knowledge of symptoms of decompensated CHF may cause inadequate response of the patient and may delay initiation of treatment. Assessment of compliance with life-style measures revealed that most patients did not use tobacco products and had a limited alcohol consumption. Most individuals reported a regular use of heart failure medication and knew the timing of the next follow-up in their heart failure clinic. Life-style measures included also some dietary restrictions modified by the current nutritional status. Respondents preferred recommended food over inappropriate foodstuffs, however, they did not follow neither the salt restriction nor the optimal frequency of meals. Most respondents did not report a regular exercise A significant ignorance was found in the process of self-monitoring. Most respondents did not monitor their body weight, blood pressure and pulse. The qualitative assessment evaluated the following questions: 1. Do we educate the CHF patients appropriately? 2. Are we able as nurses to pass correct information to CHF patients? 3. How is the process of education implemented in practice? Based on the above mentioned methods, we found that the process of education is a domain of doctors. Nurses have only a limited role in education of CHF patients...

Die chronische Herzinsuffizienz ist ein schwerwiegendes progredientes Krankheitsbild, das sich neben Dyspnoe und abnehmender Leistungsfähigkeit in einer nachgewiesenen Verschlechterung der HDL-Funktion manifestiert. In zahlreichen Studien, in denen der Einfluss von körperlichem Training auf die Progredienz der chronischen Herzinsuffizienz untersucht wurde, korrelierte dauerhaftes Ausdauertraining mit einer Verbesserung der eNOS-Aktivität und damit der HDLFunktion in Gefäßen. Ein Regulationsmechanismus von Endothelzellen besteht in der Expression von angiogenen microRNAs, die über negative Regulation die Proteinexpression beeinflussen. Ziel dieser Studie ist es nun, einen möglichen Zusammenhang zwischen der HDL-Funktionalität und der microRNA-Expression in Endothelzellen zu prüfen und damit die Funktionsänderung von HDL bei Herzinsuffizienten auf molekularer Ebene nachzuweisen. Zudem soll eine Beeinflussung der HDL-Funktion durch körperliches Training geprüft werden. Dafür wurde das HDL von gesunden und herzinsuffizienten Probanden (NYHAIII-Stadium) vor und nach einem vier- bzw. zwölfwöchigen Trainingsprogramm aus dem Plasma isoliert. Anschließend erfolgte mit dem gewonnenen HDL die 24-stündige Inkubation von HAEC-Kulturen. Nach Isolation der microRNAs aus dem gewonnenen Zelllysat konnte die Menge ausgewählter proangiogener miRs über RT-PCR quantifiziert werden. Die molekularbiologische Analyse der Proben zeigte eine, im Vergleich zu den Kontrollzellen, signifikant verringerte Menge an miR-21, -126 und -222 in den, mit HDLNYHAIII-inkubierten, Endothelzellen. Die miR-Expression der Endothelzellen zeigte nach dem Trainingsprogramm eine Annäherung an das Expressionsniveau der Kontrollen. Aus der dargelegten Studie wird so ersichtlich, dass das HDL von Herzinsuffizienten die Expression von proangiogenen microRNAs in Endothelzellen hemmt, was scheinbar in Korrelation mit der Ausbildung von endothelialen Dysfunktionen bei Herzinsuffizienz steht. Zudem konnte gezeigt werden, dass körperliches Training mit einer verbesserten Endothelfunktion über die Erhöhung der miR-Expression in Endothelzellen einhergeht.

Bakgrund: Hjärtsvikt är ett globalt hälsoproblem som ständigt ökar. Detta hälsoproblem påverkar patienters förmåga att kunna utföra dagliga aktiviteter samt utförandet av egenvård för att minska påverkan av symtomen. Orems egenvårdsteori användes som teoretisk utgångspunkt. Syfte: var att beskriva patienters upplevelser av daglig egenvård vid kronisk hjärtsvikt. Metod: I litteraturöversikten användes vetenskapliga artiklar med kvalitativ metod som analyserades enligt Fribergs (2017) analys. Resultat: Genom 13 vetenskapliga artiklar presenteras resultatet i tre huvudteman med respektive subteman: Emotionella utmaningar (förändrade känslor), Fysiska begränsningar (dyspné & fatigue), Stöd genom egenvård (resurser). Slutsats: Patienter upplevde att negativa känslor påverkade deras förmåga att utföra egenvård. Socialt stöd från familjen hade både positiv och negativ påverkan. Samtal med olika professioner var värdefullt för patienterna då de fick ökad kunskap om hjärtsvikt för att hantera sin egenvård. Kunskapsbrister hos vårdpersonalen resulterade till att behövlig information inte förmedlades till patienter med hjärtsvikt vilket kunde orsaka egenvårdsbrist. / Background: Heart failure is a global health problem that is constantly increasing. Symptoms of heart failure affects the performance in activities of daily living and the ability to perform self-care. Proper self-care can decrease symptoms, increase self-esteem and well-being. Orem's theory Self-care deficit nursing theory was used as a theoretical framework. Aim: was to describe chronic heart failure patients experiences of daily self-care. Method: The literature review had scientific articles with a qualitative method which was analyzed by Friberg's (2017).   Results: A total of 13 scientific articles were selected for the results and presented in three main categories with respective subcategories: Emotional challenges (changed emotions), Physical limitations (dyspnea & fatigue), Support through self-care (resources). Conclusion: Patients experienced that negative emotions affected their ability to perform self-care. Social support from the family had both a positive and negative impact. Conversations with various professions were valuable for patients as they gained increased knowledge about heart failure to manage their self-care. Inadequacy in healthcare staff resulted in incorrect information being communicated to patients with heart failure and causing inefficient self-care.

L’assistance ventriculaire constitue une voie thérapeutique prometteuse de l’insuffisance cardiaque terminale. En dépit des progrès, notamment dans le développement des assistances de type shunt ventriculo-aortique, les écueils relatifs à l’encombrement, à l’alimentation et/ou aux interactions avec le sang de ces dispositifs limitent leur application clinique. Récemment, le concept de Compression Cardiaque Directe (DCC) apparaît comme une piste prometteuse en palliant les difficultés sus-citées. Dans ce travail de thèse, nous avons mis l’accent sur la conception et le test de faisabilité d’une solution de Compression Cardiaque Directe de type mécanique et entièrement implantable appelée l’Exosquelette Cardiaque. Notre travail expérimental a porté, dans un premier temps, sur la conception assistée par ordinateur et sur la modélisation numérique permettant ainsi d’optimiser et de prédire (i) les interactions tissus myocardiques/dispositifs et (ii) les pressions ventriculaires générées. Ensuite, un prototype fonctionnel a été réalisé par fabrication additive (titane, polymères) en s’appuyant sur les données issues de la modélisation et en respectant les contraintes énergétiques, mécaniques et architecturales anatomiques. Enfin, nous avons conduit une phase d’évaluation du potentiel de ce dispositif original sur un modèle de cœur ex vivo. Nous avons pu concevoir et valider un modèle numérique fondé sur le principe des éléments finis. Ce modèle à la fois simple et robuste, a permis de simuler (i) l’impact des points de fixation du dispositif sur le tissu cardiaque, (ii) l’efficacité de la compression externe sur la genèse des pressions intraventriculaires et (iii) l’influence de la compression mécanique externe sur le tissu cardiaque. Le prototype issu de ce travail de thèse a pu produire des résultats prometteurs concernant (i) la restauration physiologique de la pression intraventriculaire, (ii) la consommation énergétique suffisamment basse et (iii) le design compatible avec les contraintes anatomiques thoracique. L’ensemble de ces résultats esquissent la possibilité d’une implantation totale de l’Exosquelette Cardiaque chez le patient / Ventricular assistance is a promising therapeutic pathway for terminal chronic heart failure. Notwithstanding the progress made for the development of aorto-ventricular shunt pump among other things, the difficulties relatives to footprint, power supply and/or blood-device interactions are somehow limiting their clinical applications. Recently, direct cardiac compression (DCC) was suggested as a promising lead to overcome the difficulties mentioned above. In this work, we focused on the design and the feasibility of an implantable and mechanical Direct Cardiac Compression device called: The Cardiac Exosqueleton. Our experimental work used Computer Assisted Design (CAD) and numerical modeling to optimize and predict (i) tissue-device interactions and (ii) pressure generation inside ventricular cavities. Then, a functional prototype was realized by additive manufacturing (titanium, polymer) with the help of modeling data and with respect to the anatomical, mechanical and energetical limitations. Finally, we conducted an evaluation of the ability of our device on both in vitro setup and ex vivo heart. We were able to conceive and validate a numerical model based on finite element techniques. This simple yet robust model allowed us to study (i) the impact of suture fixation of a device at the apex of the heart, (ii) the influence of the direct cardiac compression on intracardiac pressures and (iii) overall and local tissue stress in the myocardium. Our prototype showed promising results concerning (i) the restoration of physiological intraventricular pressures, (ii) a low energy consumption and (iii) a shape that is compatible with the thoracic anatomical constraints. All of these results allow us to envision a total implantation of the cardiac exoskeleton into the patient

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Chronic heart failure (CHF) is defined as a complex clinical syndrome that is frequently, but not exclusively, characterised by objective evidence of an underlying structural abnormality or cardiac dysfunction. CHF affects up to 3% of the adult population and this rate is consistent throughout the developed world. In spite of the proven efficacy of treatments, there is a common theme of low implementation rates for recommended therapeutic guidelines. In Australia, where access to specialist CHF management is limited, the burden of care, for the 40% of CHF patients living outside capital cities falls predominantly onto community-based general practitioners (GPs). Unfortunately, there are diminishing numbers of GPs in rural and remote regions and this has created an apparent dual deficit in terms of equitable access to primary and specialist care for the CHF population living in these areas. The purpose of this research was to determine, in a series of themed studies, the population distribution, management and potential information technology solutions for CHF in rural and remote Australia. Appropriate methods were utilised for each study and included epidemiological studies, a quantitative analysis of a large practice audit, geo-mapping, a systematic review, a case study review and a qualitative analysis of participant feedback and clinical notes.

L’insuffisance cardiaque chronique est une maladie systémique où des dysfonctions périphériques viennent s’ajouter à l’incapacité du cœur à assurer un débit cardiaque adéquat aux tissus métabolisants. Parmi des dysfonctions périphériques, l’atrophie ainsi que la perte de force et d’endurance musculaire jouent un rôle primordial et contribuent largement à la genèse des symptômes majeurs de l’insuffisance cardiaque chronique, c’est à dire la fatigue, la dyspnée et l’intolérance à l’effort.<p>Ce n’est que depuis le début des années 1990 que des études ont montré que le réentraînement à l’effort pouvait être bénéfique pour le patient insuffisant cardiaque chronique; auparavant, il était considéré comme contre-indiqué.<p>La méthodologie d’entraînement proposée à cette époque aux patients était un entraînement de l’endurance cardio-vasculaire, le renforcement musculaire n’y avait pas sa place car on craignait que l’impact hémodynamique de ce type d’entraînement risquerait de détériorer la fonction cardiaque encore plus. Des études menées sur des contractions musculaires de type isométrique montraient en effet une diminution de la fonction cardiaque pendant l’entraînement. Cependant, les contraintes imposées pendant les exercices de renforcement musculaire dynamique (encore appelés « résistifs ») ne correspondent nullement à celles du renforcement isométrique. Des études sur des personnes saines ont montré que le renforcement musculaire est plus adapté à induire des améliorations du volume et de la force musculaire que l’entraînement de l’endurance cardio-vasculaire.<p>Le but de nos travaux a donc été de vérifier si l’introduction du renforcement musculaire, en complément de l’entraînement cardio-vasculaire ou bien comme entraînement à part entière, pouvait apporter un bénéfice supplémentaire chez l’insuffisant cardiaque chronique par son aptitude, du moins théorique, à mieux corriger certains aspects des dysfonctions musculaires.<p><p><p>Il s’agissait, dans les différentes études que nous avons menées, de vérifier qu’un entraînement composé de renforcement musculaire (au moins partiellement) chez le patient insuffisant cardiaque chronique:<p>-\ / Doctorat en Sciences de la motricité / info:eu-repo/semantics/nonPublished

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Made available in DSpace on 2015-07-22T20:50:43Z (GMT). No. of bitstreams: 0 Previous issue date: 2010-11-24. Added 1 bitstream(s) on 2015-08-11T03:26:10Z : No. of bitstreams: 1 Publico-12685a.pdf: 1258050 bytes, checksum: 53b17db1fdfbd3e4583d4358e7515aed (MD5). Added 1 bitstream(s) on 2015-08-11T03:26:10Z : No. of bitstreams: 2 Publico-12685a.pdf: 1258050 bytes, checksum: 53b17db1fdfbd3e4583d4358e7515aed (MD5) Publico-12685b.pdf: 2009901 bytes, checksum: 92f9b67aa48fc3b5890595ab949a78a4 (MD5). Added 1 bitstream(s) on 2015-08-11T03:26:10Z : No. of bitstreams: 3 Publico-12685a.pdf: 1258050 bytes, checksum: 53b17db1fdfbd3e4583d4358e7515aed (MD5) Publico-12685b.pdf: 2009901 bytes, checksum: 92f9b67aa48fc3b5890595ab949a78a4 (MD5) Publico-12685c.pdf: 2013198 bytes, checksum: 64df6a7e1d8d760785004ef7cb8107b9 (MD5) / Na insuficiencia cardiaca (IC) o comprometimento do fluxo sanguineo muscular na transicao do exercicio leve para o intenso pode reduzir temporariamente a pressao microvascular de O2 e diminuir a oferta de O2 do capilar para a mitocondria. No entanto, os avancos no tratamento medicamentoso da IC (por exemplo, os inibidores da enzima conversora de angiotensina e ƒÀ-bloqueadores de terceira geracao) poderiam ter melhorado a oferta microvascular de O2 a um ponto em que a lentidao da maquinaria metabolica intramuscular passaria a ser o fator limitante da resposta cinetica do consumo de oxigenio ( O2). O objetivo do presente estudo foi investigar a relacao dinamica entre oferta e utilizacao microvascular de O2 na transicao do exercicio leve (sem carga) para o intenso, em portadores de IC com tratamento otimizado e nao treinados, comparado a um grupo controle de individuos saudaveis. Foram incluidos 10 pacientes com IC com tratamento clinico otimizado (fracao de ejecao = 29 } 8%) e 11 controles pareados por idade. Avaliou-se as respostas cineticas da captacao pulmonar de O2 ( O2p), da extracao tissular de O2 no musculo vasto lateral, como estimada pela variacao na concentracao relativa de deoxihemoglobina + mioglobina (~ƒ¢[deoxi-Hb+Mb]), mensurada pelo metodo de espectroscopia de raios quasi-infravermelhos (NIRS) e do debito cardiaco (DC), durante exercicio de alta intensidade ate o limite de tolerancia (Tlim). A cinetica da O2p e do DC foram mais lentas nos pacientes com IC em comparacao aos controles e correlacionaram-se significativamente com menores valores de Tlim (P = 0,05). A cinetica total da ƒ¢[deoxi-Hb+Mb] foi mais rapida nos pacientes do que nos controles (tempo medio de resposta (MRT) = 15,9 } 2,0 s vs. 19,0 } 2,9 s; P = 0,05), com uma resposta de "overshoot" presente apenas nos pacientes (7/10). Alem disso, a razao t O2p/MRT-ƒ¢[deoxi-Hb+Mb] foi maior nos pacientes (4,69 } 1,42 s vs. 2,25 } 0,77 s; P < 0,05) e correlacionou-se com a cinetica do DC e o Tlim (R = 0,89 e 0,78, respectivamente; P = 0,01). Conclui-se que apesar dos avancos no tratamento medicamentoso da IC, os disturbios nos ajustes circulatorios "centrais" e "perifericos" continuam a desempenhar um papel proeminente na limitacao da cinetica da O2p e tolerancia a exercicio de alta intensidade em pacientes nao treinados com IC. / Impaired muscle blood flow at the onset of heavy-intensity exercise may transiently reduce microvascular O2 pressure and decrease the rate of O2 transfer from capillary to mitochondria in chronic heart failure (CHF). However, advances in the pharmacological treatment of CHF (e.g., angiotensin-converting enzyme inhibitors and third generation of â-blockers) may have improved microvascular O2 delivery to an extent that intramyocyte metabolic inertia might become the main locus of limitation of O2 uptake ( O2) kinetics. We included 10 optimally treated sedentary patients (ejection fraction = 29 ± 8%) and 11 age-matched controls. We assessed the rate of change of pulmonary O2 ( O2p), tissue O2 extraction in the vastus lateralis estimated by concentration of deoxy-hemoglobin+myoglobin (~Ä[deoxy-Hb+Mb]) measured by near-infrared spectroscopy (NIRS), and cardiac output ( T) during highintensity exercise performed to the limit of tolerance (Tlim). Sluggish O2p and T kinetics in patients were significantly related to lower Tlim values (P = 0.05). The dynamics of Ä[deoxy-Hb+Mb] were faster in patients than controls (mean response time (MRT) = 15.9 ± 2.0 s vs. 19.0 ± 2.9 s; P = 0.05) with a subsequent response “overshoot” being found only in patients (7/10). Moreover, t O2p/MRT-Ä[deoxy- Hb+Mb] ratio was greater in patients (4.69 ± 1.42 s vs. 2.25 ± 0.77 s; P = 0.05) and related to T kinetics and Tlim (R = 0.89 and 0.78, respectively; P = 0.01). We conclude that despite the advances in the pharmacological treatment of CHF, disturbances in “central” and “peripheral” circulatory adjustments still play a prominent role in limiting O2p kinetics and tolerance to heavy-intensity exercise in nontrained patients. / TEDE / BV UNIFESP: Teses e dissertações