Bakgrund   Hjärtsvikt är ett allvarligt medicinskt tillstånd som påverkar miljontals människor över hela världen. Det är inte bara en sjukdom i sig själv, utan snarare ett komplex syndrom som uppstår när hjärtats pumpförmåga är nedsatt, vilket leder till otillräcklig blodcirkulation till kroppens vävnader. Symtomen på hjärtsvikt är varierande och inkluderar tryck över bröstet, andfåddhet, trötthet och ödem. Egenvård spelar en avgörande roll i hanteringen av kronisk hjärtsvikt. Genom att ge patienter kunskap och verktyg att ta hand om sig själva kan deras livskvalitet förbättras och risken för sjukhusinläggningar minskas. Dorothea Orem teori om egenvård ger en ram för att förstå patientens roll i sin egna vård och betonar vikten av att anpassa vården efter patientens individuella behov och förmågor. Syfte Att belysa patienters upplevelser av egenvård vid kronisk hjärtsvikt. Metod En icke-systematisk litteraturöversikt baserad på 13 vetenskapliga artiklar med kvalitativa ansatser, hämtade från databaserna CINAHL och PubMed genom olika sökkombinationer. Artiklarna har kvalitetsgranskats utifrån Sophiahemmet Högskolas bedömningsunderlag för vetenskaplig klassificering och kvalitet och resultatet analyserades med integrerad dataanalys. Resultat Resultatet sammanställdes i två huvudkategorier och fem underkategorier. Den första huvudkategorin “En utmanande upplevelse” inkluderar underkategorierna “Emotionella reaktioner” “Att hantera symtom” och “Egenvårdsstrategier”. Den andra huvudkategorin “Upprätthålla egen hälsa” omfattar underkategorierna “Sociala stödets roll” och “Informationsbehov”. Resultatet från litteraturöversikten visade att patienter med hjärtsvikt står inför betydande utmaningar i sin egenvård, där en av de mest framträdande aspekterna var hanterandet av symtomen och den emotionella påverkan. Slutsats Denna litteraturöversikt visar att upplevelsen av egenvård vid hjärtsvikt är en utmaning som kräver anpassning till en ny livssituation. Utförandet av egenvård kan väcka starka emotionella reaktioner hos den enskilde. Genom att förstå hur dessa patienter påverkas av sin sjukdom, kan sjuksköterskan på ett professionellt sätt möta individens behov. / Background Heart failure is a serious medical condition that affects millions of people worldwide. It is not merely a disease in itself but rather a complex syndrome that occurs when the heart's pumping capacity is impaired, leading to insufficient blood circulation to the body's tissues. The symptoms of heart failure vary and include chest pressure, shortness of breath, fatigue, and edema. Self-care plays a crucial role in the management of chronic heart failure. By providing patients with the knowledge and tools to care for themselves, their quality of life can be improved, and the risk of hospital admissions can be reduced. Dorothea Orem's theory of self-care offers a framework for understanding the patient's role in their own care and emphasizes the importance of tailoring care to the patient's individual needs and capabilities Aim To describe patients' experience of self-care in chronic heart failure. Method A non-systematic literature review based on 13 scientific articles with qualitative approaches, retrieved from the databases CINAHL and PubMed through different search combinations. The articles have been quality-checked based on Sophiahemmet University's assessment tool for scientific classification and quality, and the results were analyzed with integrated data analysis. Results The results were compiled into two main categories and five subcategories. The first main category “A challenging experience” includes the subcategories “Emotional reactions”, “To manage symptoms” and “Self-care strategies”. The second main category "Maintaining one's own health" includes the subcategories "The role of social support" and "Information needs”. The results from the literature review showed that patients with heart failure face significant challenges in their self-care, where one of the most prominent aspects was managing the symptoms and the emotional impact. Conclusions This literature review shows that the experience of self-care in heart failure is a challenge that requires adaptation to a new life situation. The performance of self-care can arouse strong emotional reactions in the individual. By understanding how these patients are affected by their illness, nurses can meet the individual's needs in a professional manner.

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.

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.