Årligen beräknas upp till 30.000 personer primärinsjukna i stroke.  I samband med en allt äldre population samt ökad förekomst av ohälsa drabbas landets befolkning i allt större omfattning av sjukdom. Riskfaktorer för stroke ses både hos den yngre och äldre generationen vilket tenderar till att fler drabbas av stroke. Detta i sin tur påverkar familjekonstellationer och närståendekretsar i större omfattning än tidigare. Strokeinsjuknandet ger funktionsnedsättningar som även påverkar närståendes vardag och livsvärld. Syftet med studien var att belysa närståendes upplevelser av vardagen när en familjemedlem drabbats av stroke. Studien genomfördes som en litteraturstudie där tolv artiklar bildade resultatet. I resultatet framkom det att stroke sågs som ett trauma och upplevdes som ett existentiellt kaos. Insjuknandet sågs ha många negativa effekter på familjens funktion på grund av bland annat oönskade roller och orättvisa förväntningar. Stora påfrestningar inom relationerna framkallade känslor av främlingskap. Familjefokuserad omvårdnad kan tänkas vara ett vetenskapligt redskap att fånga upp hela familjens och närståendes hälsa och lindra onödigt lidande. Vidare forskning kring informering samt långsiktig psykologisk uppföljning skulle kunna hjälpa familjen bearbeta traumat. / Up to 30,000 people annually suffers primary stroke. Due to an older population and enlarged incidence of illness, sickness are increasingly tending to affect family and close relatives. Stroke incidence generally results in impairments which also may affect relatives’ everyday life and lived world. The purpose of this study was to illuminate the experiences of close relatives of everyday life by the time a family member suffered stroke. The study was conducted as a literature review in which twelve articles formed the result. The result showed that stroke incidence was seen as a trauma and chaos of existential meaning. The incidence was seen to have many negative effects on family functioning such as unwanted roles and unfair expectations. High stress in relationships evoked feelings of alienation. Family focused nursing might be a tool of scientific support to capture the whole family and kindred health and alleviate unnecessary suffering. Further research on information sharing and long-term psychological follow-up could help family to process the trauma.

Children need help to understand and manage when a close relative is critically ill or dying. The purpose of the literature study was to highlight children’s reactions when a close relative is gravely ill. The method used was a general literature study where ten scientific articles where analyzed and reviewed. The results were compiled in two themes: Experiences when life is threatened and To cope when life is threatened. Children with a critically ill relative are in great need of being met and supported by nurses in a professional manner. This is based  on knowledge and understanding of how children can experience, and how children cope in difficult situations like these. The results show that children take on great responsibility and often set themselves aside to help the ill and that many of the children experience the threat of loss as a constant fear. The result of the study can be used by nurses, in the clinical setting, who meet children with a critically ill family member to increase knowledge about the subject.

Syftet med studien var att beskriva hur närstående till intensivvårdspatienter upplevde en intensivvårdsavdelning (IVA) med fokus på delaktighet och omvårdnad. I studien intervjuades fem närstående. Intervjuerna analyserades med hjälp av en förenklad variant av meningskodning och tre kategorier som beskrev de närståendes upplevelser av IVA utvecklades. Kategorierna benämndes: "Första intrycket av IVA", Att leva med osäkerhet" och "Att vara delaktig". De närstående upplevde ett inre kaos när deras anhörig vårdades på IVA och använde sig av olika copingstrategier. De närstående beskrev intensivvårdssjuksköterskornas omvårdnad och bemötande på ett positivt sätt men vissa upplevde att läkare och kurator var frånvarande. Den största oron handlade om hur patienten skulle återhämta sig och hur framtiden skulle bli. Att få vara delaktig på IVA var ingen självklarhet och några anhöriga hade själva krävt att få vara med. / The aim of this study was to describe the experience of the close relatives of patients in an intensive care unit (ICU) with focus on participation and nursing care. In the study five persons who were close relatives were interviewed. The analysis of the interviews was done with a simplified version of code-of-meaning and three categories that showed experiences of importance of the relatives in the ICU emerged. The categories were called: "The first impression of the ICU", "To live with uncertainty" and "To be involved". The close relatives of the patient experienced inner chaos when the patient was in the ICU and they used different coping strategies. The close relatives of the patients described the nursing care provided by the intensive care nurses and the way they had been treated in a positive way but some lacked contact with physicians or a counselor. Their biggest concern was whether the patient would recover and how their future would turn out to be. It was not obvious for the close relatives to bee involved in the care of the patient, some felt they have had to demand it.

Bakgrund: Palliativ vård handlar om att ge stöd till patienten och anhöriga under och efter vårdtiden. De ”6 s:n” är en arbetsmodell inom palliativ vård där patienten har rätt till självbestämmande och att upprätthålla sina sociala relationer, även stöd till anhöriga ingår. Anhöriga har en betydelsefull roll i den palliativa vården, deras närvaro skapar möjlighet för den döende att vara hemma i livets slutskede. Syfte: Syftet var att beskriva anhörigas upplevelse av palliativ vård i hemmet under livets slutskede. Metod: Litteraturöversikt baserad på 15 vetenskapliga artiklar från fem olika länder med kvalitativ ansats. Resultat: Fem kategorier identifierades kopplade till anhörigas upplevelser: Palliativa teamets inträde i hemmet, anhörigas vårdansvar, den medicintekniska utrusningens inverkan på vardagslivet, känslor och konsekvenser för anhöriga samt förbättringsmöjligheter och anhörigas uppfattning om palliativ vård. Slutsats: Anledningen till anhörigas vårdansvar var löftet att få dö hemma, uppgiften upplevdes krävande och gav konsekvenser på sömnen och deras fysiska och psykiska mående. Detta var genomgående i hela litteraturöversikten. Vården i hemmet sågs som den rätta platsen att dö på för alla parter, endast en anhörig uttryckte avsky för situationen. Enligt anhöriga var stödet bra dock fanns det ett ökat behov av mer resurser för fullständig trygghet. / Background: Palliative care is about providing support to both the patient and family during and after the time of care. The “6 s:n” is a working model in palliative care where the patient has the right to self-determination and to maintain their social relationships, which includes support to relatives. Relatives have an important role in palliative care, their present creates opportunity for the dying person to be at home in the final stages of life. Aim: The aim of this study was to describe relative’s experiences of palliative home care during the final stage of life. Methods: A literature review based on 15 scientific articles from five different countries with a qualitative approach. Results: Five categories were identified related to relatives experiences: The entry of palliative home care, relatives caring role, the impact of medical technology on everyday life, feelings and consequences for relatives and also improvement opportunities and relatives comprehend about palliative home care. Conclusions: The promise was the reason for relatives caring role, the caring role was an demanding task and gave impacts on their sleep and their physical and mental needs. This was consistently throughout the whole literature review. For all parties the home was seen as the right place to die, only one relative expressed disgust for the situation. According to relatives the support was good, but to complete full security for them it was an increased need for more resources.

I denna kvalitativa studie har enkäter insamlats från barn och unga som deltagit i stödgruppsverksamhet för barn och unga med en avliden nära anhörig i Dalarnas län. Syftet med studien har varit att beskriva deltagarnas erfarenheter av stödgrupperna. Genom kvalitativ innehållsanalys har tre kategorier identifierats; bearbetning, gemenskap och strukturens betydelse. Studien visar främst på betydelsen av att få träffa andra barn och unga i liknande situation samt indikerar till att deltagarnas KASAM (känsla av sammanhang) förhöjts genom deltagandet i stödgruppen. / In this qualitative study, questionnaires were collected from children and adolescents who had participated in a support group in Dalarnas län for children and adolescents with a deceased close relative. The purpose of this study was to enhance knowledge of children and adolescents’ experiences of participating in support groups through their descriptions in qualitative questionnaires. Qualitative content analysis was conducted and three categories were identified; kinship, processing and the significance of structure. The result highlights the importance of having the opportunity to meet other children and adolescents in similar situations, and indicates that the participants Sense of coherence enhanced through the participation in the support group.

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: Kroniskt obstruktiv lungsjukdom (KOL) orsakar inflammerade celler i luftrör och lungvävnad. Personer med KOL upplever att kroppen inte orkar och känner sig begränsade i vardagen. Syfte: Belysa anhörigas upplevelser att vårda en närstående med kroniskt obstruktiv lungsjukdom. Metod: Kvalitativa literaturstudier baserade på intervjuer av anhöriga till personer med kroniskt obstruktiv lungsjukdom. Resultat: Tolv artiklar användes, 183 personer deltog, 25 till 90 år. Artiklar från Sverige, Kanada, Portugal, Danmark, USA, Norge, Island, Nordirland England. Anhöriga till personer med KOL upplever stress, hopplöshet, oro och trötthet. Oron är kopplad till den närstående med KOL och deras försämring av sjukdom. Både anhöriga och närstående upplever brist på utbildning och kunskap från sjukvården. Slutsats: Att vårda en närstående tar mycket energi, för att hushållssysslor och omvårdnadsysslor tar långt tid och tar mycket kraft i vardagen. Vid försämring av den närståendes tillstånd upplever anhöriga en kraftig oro vilket ger en nedsatt omvårdnad till den närstående. Bristen av kontakt till sjukvården gör att anhöriga inte kan få tips och råd om den närståendes sjukdomsutveckling. Det framkommer även att anhöriga behöver stöd från sjukvården för att bibehålla en positiv roll som informell vårdare. / Background: Chronic obstructive pulmonary disease (COPD) causes inflamed cells in the trachea and lung tissue. People with COPD experience less body strength and feel limited in everyday life. Purpose: To shed light on relatives’ experiences of caring for related parties with chronic obstructive pulmonary disease. Method: Quantitative interview-based literature study of relatives experiences. Results: Includes twelve articles, 183 participants in age 25-90. Articles originate from Sweden, Canada, Portugal, Denmark, USA, Norway, Iceland, and Northern Ireland England. Relatives caring for related parties with COPD experience stress, hopelessness, anxiety, and fatigue. Anxiety is linked to worsening of the related parties COPD condition. Both parties experience lack of education from healthcare services. Conclusion: Caring for a close relative takes a lot of energy, because household chores and nursing chores take a long time. Furthermore, it takes a lot of energy in everyday life. In the event that the close relative condition deteriorates, experience the related caretaker severe anxiety, which results in reduced care of the close relative. Lack of healthcare contact can limit advice of the close relatives' illness development. It also emerged that relatives’ need support from healthcare services to maintain a positive role as an informal caretaker.