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.

Background: The common staff approach in psychiatric care has not been studied explicitly before. Earlier studies in related areas of social processes in psychiatric care highlight the importance of the interaction between the patient and the carer to understanding communication patterns and attitudes. Other studies on social order and power in psychiatric care shows carers and patients as taking part in a hierarchical system in which patients are subordinate to carers. Aim: The overall aim of this thesis is to study the phenomenon of the common staff approach in psychiatric care, how it emerges, and how it is used and experienced by both carers and patients. Method: In the first study, grounded theory was applied to data from observations and interviews carried out with carers and clients in two psychiatric care group dwellings. In the second and third studies, a phenomenological hermeneutic method was used to analyse narrative interviews conducted with nine careers working on psychiatric wards and nine patients with experience of psychiatric in-care, respectively. In the fourth study, qualitative content analysis was used to analyse data obtained by a vignette method from interviews with 13 carers with experience of working in psychiatric in-care. Results: A common staff approach can be understood as a social process in municipality-level group dwellings and psychiatric in-care, imposed by carers on clients or patients with the aim of restoring a predetermined order desired by the carers. When the order is disturbed the carers try to restore it by adopting a common and consistent approach towards the single patient perceived as the threat to order. Barriers to the success of a common staff approach, from the point of view of the carers, include the likelihood that colleagues will interpret situations differently, the chance that patients might succeed in dividing carers into “good” and “bad” camps, and the knowledge that the patient suffers under a common staff approach. The patients’ experiences partly confirm those of the carers – the dominant picture is that the patient feels persecuted and suffers under a common staff approach. However in some situations, patients can perceived the common approach as supportive and aimed to promote their recovery. Carers’ ethical reasoning about the common staff approach is usually applied on an individual basis; it can change depending upon the patient, the situation, and the proposed approach, as well as upon how the approach might affect other patients, staff members, or the carers themselves. Conclusions: The overall results from the four studies show that the common staff approach may meet carers’ needs, which under the approach take precedence over those of patients, but that the approach is more an exercise in asserting power and maintaining control than it is a therapeutic technique; that it is a difficult choice for the single carer to choose between the interests of the patient and the approval of colleagues; that the patient often suffers when a common staff approach is used; and that carers are seldom aware of the suffering experienced by the patient being managed by such an approach. A common staff approach has no part in a care-strategy; it is not an intentional care-plan; instead it appears to be a way for carers who feel vulnerable and under pressure to maintain order by controlling particular patients.

Background The definition of self-harm used in this project is repeated, impulsive behaviour causing tissue damage, yet not intended as a suicide attempt. Instead of wishing to die, the person who self-harms wishes to be relieved from anxiety. The thesis comprises four studies and the overall aim was to describe experiences of care among people who self-harm, professional caregivers, and close relatives (parents), and to explore interpretative repertoires that jointly construct the interaction between people who self-harm and their professional caregivers. Methods The participants were nine women who self-harmed (I), six nurses, three of each sex (II), five mothers and one stepfather (III), and six women who self-harmed in two psychiatric inpatient wards and their caregivers (IV). Data were collected through narrative interviews (I, II, III), participant observations (IV), and informal interviews (IV). The interviews lasted between 40 and 50 minutes (I), between 40 and 65 minutes (II), and between 30 and 85 minutes (III). The observations including informal interviews in study IV comprised 150 hours of descriptive observations and 40 hours of focused observations. The data were analysed using qualitative content analysis (I, II), phenomenological hermeneutics (III), and discursive psychology (IV). Results People who self-harmed experienced care as inferior, not satisfying their needs. The findings presented a paradox; on the one hand, the women realised that society considered self-harm an inappropriate way to alleviate mental suffering, and on the other hand, they experienced self-harm as the only way to survive and to foster hope in themselves (I). Caregivers felt powerless and burdened when unable to identify and satisfy the women’s needs. Feelings of fear, frustration, and abandonment created a significant burden for caregivers (II). Parents’ lived experience of the professional care and caregivers of their self-harming adult children could be described as a hostage drama. As in a hostage situation, parents felt held to emotional ransom by deficient care and sometimes hostile caregivers (III). The interpretative repertoires that jointly constructed the interaction between those who self-harmed and their professional caregivers, were for the caregivers a fostering and a supportive repertoire, and for the women who self-harmed a victim and an expert repertoire. The interactions between a fostering caregiver and a woman as expert or as victim, and between a supportive caregiver and a woman as victim, were complicated and promoted feelings of hopelessness among the participants. Interactions between a supportive caregiver and a woman as expert were more satisfying and raised hope among the participants (IV). Synthesis of findings Hope and hopelessness ran together as a thread of meaning throughout the studies. All participants experienced and expressed hope and hopelessness in various ways. The self-harming women hovered between hope and hopelessness, hoping for help and support, but led back to hopelessness by their experiences in care. The women used self-harm as a way to cope and to maintain hope in themselves. The parents initially had confidence in healthcare and hoped for help. However, their experiences of meeting deficient care often made them feel hopeless. Parents paid an emotional ransom when they accepted deficient care for their daughters. The caregivers felt frustrated, angry, and powerless, and their view of self-harm as an endless behaviour led to hopelessness. However, they struggled to see the women’s abilities, not only their difficulties, and described how they had to try to see self-harm in another way. Caregivers who were convinced that it was possible to stop self-harming and leave it behind were able to bring hope to themselves, to parents, and to the women who self-harmed. The present studies suggest that there is a difference between self-harm and suicide attempts or suicide. Other researchers echo these findings. Conclusions Paradoxically, self-harm usually seems to be a life sustaining act, a way of raising hope in oneself. The importance of caregivers who listen and try to understand people who self-harm, as well as their close family members, is evident. By asking open-ended questions and being non-judgemental, listening, and showing a genuine interest in the person’s lived experience; caregivers can inspire hope in people who self-harm. / Bakgrund Självskadebeteende definieras i denna avhandling som ett upprepat, impulsivt beteende där hudskada uppstår. Avsikten med handlingen är inte att begå självmord, stället har personen en önskan att lindra ångest. Avhandlingen består av fyra delstudier och det övergripande syftet var att beskriva erfarenheter av vård bland personer med självskadebeteende, professionella vårdare och närstående (föräldrar), samt att belysa tolkningsrepertoarer som konstruerar interaktionen mellan personer med självskadebeteende och deras professionella vårdare. Metod Deltagarna var nio kvinnor med självskadebeteende (I), sex sjuksköterskor, tre av vardera kön (II), fem mammor och en styvpappa (III) samt sex kvinnor med självskadebeteende som vårdades vid två psykiatriska slutenvårdsavdelningar och deras professionella vårdare (IV). Datainsamlingsmetoder var narrativa intervjuer (I, II, III), deltagande observationer samt informella intervjuer (IV). De narrativa intervjuerna varade mellan 40 och 50 minuter (I), mellan 40 och 65 minuter (II) samt mellan 30 och 85 minuter (III). Beskrivande deltagande observationer genomfördes, totalt 150 timmar, varav ca 40 timmar var fokuserade deltagande observationer. Data analyserades med hjälp av kvalitativ innehållsanalys (I, II), fenomenologisk hermeneutik (III) samt diskurspsykologi (IV). Resultat Personerna med självskadebeteende upplevde att vården var undermålig och att den inte tillfredställde deras behov. Resultaten visar en paradox, å ena sidan insåg kvinnorna att samhället i stort anser att självskadebeteende är ett oacceptabelt sätt att hantera psykiskt lidande, å andra sidan, upplevde kvinnorna att självskadandet var det som gjorde det möjligt att överleva och att inge sig själv hopp (I). Professionella vårdare kände sig maktlösa och tyngda när de inte kunde identifiera och tillfredsställa kvinnornas behov av vård. Vårdarnas rädsla, frustration och känsla av övergivenhet, vilka medförde en känsla av att vara belastad, framkom (II). Den levda erfarenheten av professionell vård och vårdare bland föräldrar till vuxna barn med självskadebeteende beskrevs som ett gisslandrama. Föräldrar till en dotter i en gisslansituation betalade en känslomässig lösensumma när de mötte en undermålig och ibland fientlig vård (III). De dominerande tolkningsrepertoarerna som tillsammans konstruerade interaktionen för vårdarna var en fostrande och en stödjande repertoar. För kvinnorna med självskadebeteende dominerade en offer och en expertrepertoar. Interaktionen mellan en fostrande vårdare och kvinna som expert eller offer, samt en stödjande vårdare och en kvinna som offer, var mer komplicerad och ingav hopplöshet bland deltagarna. Interaktionen mellan en stödjande vårdare och en kvinna som expert var mer tillfredsställande och främjade hopp bland deltagarna. Syntes av resultat Hopp och hopplöshet visade sig vara ”en röd tråd” genom delstudierna. Alla deltagare upplevde och uttryckte hopp och hopplöshet på olika sätt. Kvinnorna svävade mellan känslor av hopp och hopplöshet, med önskningar om hjälp och stöd men deras erfarenheter av vård ingav hopplöshet. Kvinnorna använde självskada som en hanteringsstrategi och som ett sätt att inge sig själv hopp. Föräldrarna hade initialt ett förtroende för vården och hade förhoppningar om hjälp, men deras erfarenheter av att möta en undermålig vård ingav istället en känsla av hopplöshet. Föräldrarna betalade en känslomässig lösensumma när de accepterade en dålig vård för sin dotter. Vårdarna kände sig frustrerade, arga och maktlösa och deras syn på självskadebeteende som något ändlöst ingav hopplöshet. Vårdarna kämpade för att se kvinnornas förmågor, inte bara deras svårigheter och försökte förstå självskadebeteende. Vårdare som var övertygade om att det var möjligt att sluta skada sig och lämna det bakom sig lyckades inge sig själv, föräldrarna och kvinnorna med självskadebeteende hopp. Resultaten från föreliggande studier tyder på en skillnad mellan självskadebeteende och självmordsförsök eller självmord, vilket även stöds av andra forskare. Slutsatser Paradoxalt nog verkar självskadebeteende vara ett livsuppehållande beteende, ett sätt att inge sig själv hopp. Betydelsen av vårdare som lyssnar och försöker förstå personen som skadar sig och närstående är tydlig. Genom att ställa öppna frågor och tala på ett icke dömande sätt, samt genom att lyssna och visa ett genuint intresse för personens upplevelser, kan vårdare förmedla hopp.

Inledning: Äldre personer med kognitiv svikt, exempelvis i form av demenssjukdom, delirium eller depression, är en vanligt förekommande population inom svensk sjukhusvård. Dessa äldre kan ha särskilda behov till följd av en försämrad kognition, men litteraturen tyder på att akutsjukhusens miljö, organisation och vårdprocesser inte alltid stödjer tillgodoseendet av dessa behov. Syfte: Det övergripande syftet med avhandlingen var att belysa vården av äldre personer med kognitiv svikt i sjukhusmiljöer. Metoder: Avhandlingen består av fyra delstudie. I studie I tillämpades en tvärsnittsdesign för att utforska personalens attityder till äldre patienter med kognitiv svikt, personalens tillfredsställelse med vården och arbetet samt upplevelsen av personcentrerat vårdklimat (n=391). I studie II användes en Grounded theory design för att undersöka hinder för personcentrerad vård för äldre personer med kognitiv svikt på en akutmedicinsk vårdavdelning. I studie III tillämpades en tvärsnittsdesign för att utforska de psykometriska egenskaperna i den svenska versionen av ”The Person-centred care of Older People with cognitive impairment in Acute Care scale” (POPAC) i ett urval av sjukhuspersonal (n=293). I studie IV användes en fenomenologisk hermeneutisk design för att belysa innebörder av att vårda äldre patienter med kognitiv svikt på akuta sjukvårdavdelningar utifrån vårdpersonals (n=13) berättelser. Resultat: Studie I visade att deltagande personal skattade en neutral attityd till äldre patienter med kognitiv svikt i spektret mellan negativa och positiva attityder, samt att faktorer som att vara yngre, undersköterska och att uppleva vården av de äldre som betungande, hade samband med mer negativa attityder. Resultaten visade också att vårdpersonal upplevde att äldre patienters kognition sällan utvärderades under vårdtiden, samt att man sällan baserade vården på evidensbaserade riktlinjer för vård av äldre med kognitiv svikt. Studie II belyste att ett organisatoriskt fokus på medicinska behov, åtgärder och rutiner bidrog till att personal hamnade steget efter i relation till att synliggöra och möta dessa äldre personers multidimensionella behov, och att detta kunde medföra tecken på vårdlidande för de äldre, utanförskap för närstående och frustration för personal. Studie III stödde en fortsatt användning av POPAC-skalan för skattningar av upplevd förekomst av personcentrerade vårdprocesser för äldre patienter med kognitiv svikt, men att ytterligare studier rekommenderades framförallt av skalans olika dimensioner. Studie IV belyste att ju större avstånd som upplevs mellan vad vårdpersonalen kan göra (verklig vård) och vad de vill göra (ideal vård) för äldre patienter med kognitiv svikt i akuta vårdmiljöer, desto meningslösare upplevs vården, och desto större blir hotet mot personalens personlig-professionella integritet. Den tolkade helheten visar på att vårda äldre patienter med kognitiv svikt inom akutsjukvård betyder att försöka ge omvårdnad i miljöer som inte stödjer vårdpersonalens personlig-professionella integritet Slutsatser: En rimlig konklusion av dessa resultat är att det i sjukhusmiljöer där äldre patienter ofta vårdas kan finnas anledning att diskutera och ytterligare studera hur attityder, synsätt på och målsättningar för vården och dess innehåll, åtgärder och interventioner kan främja eller motverka en god omvårdnad för de äldre med kognitiv svikt. Det kan också finnas anledning att se över hur personalen kan stödjas i att ge person-centrerad vård till de äldre, exempelvis genom riktlinjer för vård av äldre personer med kognitiv svikt, standardiserade skattningar av kognition, samt implementering av vårdprocesser som stödjer en personcentrerad vård för dessa patienter. Det kan också finnas behov av att ytterligare kritiskt granska hur organisatoriska och miljömässiga faktorer på avdelningar stödjer eller motverkar en personcentrerad vård för äldre patienter med kognitiv svikt. Därtill kan det finnas behov av att skapa ytterligare förutsättningar för vårdpersonalen att bevara och utveckla sin personlig-professionella integritet genom att utveckla miljöer som ger möjligheter för dem att ge en god omvårdnad till dessa äldre. / Introduction: Older people with cognitive impairment such as dementia, delirium or depression, are commonly cared for in acute hospital wards. These older people may have specific needs associated with a cognitive impairment. However, literature indicates that the milieu, organisation and care processes in acute care not always support in meeting these needs. Aim: The overall aim of the thesis was to illuminate care of older people with cognitive impairment in hospital environments. Methods: The thesis consists of four studies. Study I used a cross-sectional design to explore staff attitudes toward older people with cognitive impairment, staff satisfaction with care and work and perceived person-centeredness of the ward (n=391). Study II used a Grounded theory design to explore barriers to person-centred care for older people with cognitive impairment at an acute medical ward. Study III used a cross-sectional design to explore the psychometric properties of the Swedish version person-centred care for older people with cognitive impairment scale (POPAC) in a sample of acute hospital staff (n=293). Study IV used a phenomenological hermeneutic design to explore the meanings of caring for older people with cognitive impairment in acute hospital wards as narrated by nursing staff (n=13). Results: Study I showed that participating staff estimated a neutral attitude to older people with cognitive impairment in the spectrum between negative and positive attitudes, and that factors such as being younger, a nurse assistant and experiencing the care of older people with cognitive impairment as burdensome, were associated with more negative attitudes. The results also showed that healthcare professionals felt that older patients' cognitive ability was rarely evaluated during hospitalisation, and that care were rarely based on evidence-based guidelines for care of older people with cognitive impairment. Study II illuminated that an organizational focus on medical needs, interventions and routines contributed to staff falling behind in relation to meeting these older patients' multidimensional needs, and that this could lead to signs of suffering for older patients, feelings of being excluded for relatives, and a frustration for staff. Study III supported a continued use of the POPAC scale for ratings of perceived prevalence of person-centred care processes for older people with cognitive impairment, but further studies was recommended to explore scale dimensionality. Study IV illuminated that the greater a gap that is experienced between what nurses can do (real) and what they want to do (ideal) in caring for older patients with cognitive impairment in acute care settings, the more meaningless care is experienced and the greater a threat is experienced to the nurses personal-professional integrity. The comprehensive understanding indicated that caring for older people with cognitive impairment in acute care settings means to provide nursing care in an environment that does not support the nurses’ possibilities to protect and develop their personal-professional integrity. Conclusions: A reasonable conclusion from these studies is that there may be reasons to further discuss and study how attitudes, perspectives, and goals for care, together with the content, procedures and interventions that can support or obstruct good nursing care for older people with cognitive impairment in hospital settings. There may also be reasons to explore how staff can be supported to provide person-centred care to these older patients, for example through guidelines for care of older people with cognitive impairment, standardised assessments of cognitive ability, and implementation of care processes that supports person-centred care. In addition, to further critically examine how organisational and environmental factors in hospital wards can support or obstruct person-centred care for older patients seems needed. There may also be a need to further develop conditions that can support nursing staff to maintain and develop their personal-professional integrity, by developing environments that provides further possibilities to provide good care for these older patients. / <p>Centrum för personcentrerad vård vid Göteborgs universitet </p>