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.

Bakgrunn og hensikt: For mennesker som blir akutt/kritisk syk blir livet oftest endret på kort tid fra å værevelfungerende i hverdagen til innleggelse i intensivavdeling hvor selveste livet kan stå på spill. Tradisjonelt settblir intensivpasienter tatt vare på gjennom medisinsk kunnskap og et naturvitenskapelig kunnskapsparadigme. Åvære akutt/kritisk syk innebærer å få spesielle opplevelser og erfaringer som går ut over hverdagserfaringene, oghvordan disse erfaringene trer fram i situasjonen. Denne kunnskapen pasientene bærer i seg er ikke bareindividuell og privat kunnskap, den representerer også en form for viten som trenger å forskes fram og løftes inni det offentlige rom både folkehelsevitenskapelig og sykepleievitenskaplig, nettopp fordi den omhandler viktigeforutsetninger for at pasientene skal bli sett og møtt også eksistensielt. Denne kunnskapen representerer en annenontologi og epistemologi enn den naturvitenskapelige kunnskapen og representerer derfor et annetkunnskapsperspektiv, også når det gjelder kunnskapsformidlingen i en klinisk veiledningssammenheng. Avhandlingens overordnede mål er å øke forståelsen av det å være alvorlig syk og hvordan kunnskap ut fraerfaringer har betydning i kunnskapsformidling i en intensivkontekst. Data og metoder: Avhandlingen har en kvalitativ tilnærming. I delstudie I ble det gjort en review avartikler for å se på stress relatert til kropp, rom og relasjon. I delstudie II ble det gjennomført intervju medtidligere intensivpasienter om opplevelsen av kropp, kraft og bevegelse under kritisk sykdom. I delstudie III bletidligere intensivpasienter intervjuet angående deres opplevelse av kroppsnærværet til pårørende under kritisksykdom. I delstudie IV ble det gjort observasjoner med påfølgende intervjuer av intensivsykepleiere om deresformidling av erfart og fortolket kunnskap i en klinisk veiledningssituasjon. I alle fire delstudiene benyttes detfenomenologisk-hermeneutiske analyser. Funn: I delstudie I kommer det fram at pasientene opplever stress knyttet til kropp, rom og relasjon.Kroppen påvirkes gjennom søvnavbrudd, smerter, angst og pasientene mister kontrollen over kropp og situasjon.Stress knyttet til rom framkommer gjennom at rommet blir et speil av situasjonen ved at den både representererlivet, men også redselen for døden. Gjennom det horisontale leie opplever pasientene at situasjonen utgjør enform for makt og de selv settes i avmakt. Relasjonelt stress framkommer oftest knyttet til sammenhenger hvordet utføres observasjoner, stell og behandling. Travelhet og organisering i avdelingen påvirker det relasjonellesamværet i form av stress. I delstudie II opplever intensivpasientene at kropp kraft og bevegelse trer fram bådegjennom ”tapet” av kroppen, hvordan de handterer situasjonen og hvordan de gjenerobrer kropp, kraft ogbevegelse. De opplever kraftløshet og bevegelsesbergrensninger. Dette innvirker på avhengigheten til andre ogskaper konflikter til pårørende. Pasientene handterer det kroppslige tapet gjennom mobilisering av familiengjennom å involvere dem. Samtidig blir de selvbeskyttende og utestenger familiesammenhengene. Kampen forlivet håndterer de gjennom galgenhumoren og skriket om hjelp som siste nødrop. Gjenerobringen av kroppen erknyttet til små framskritt, gjennom personalets motivasjon og gjennom drømmen om å utrette noe i livet. Idelstudie III opplever pasientene konflikt mellom nærheten og distanse til pårørende. De kjenner seg utestengt,samtidig som de bekreftes med gaver. Pasientene opplever det konfliktfylt når de sammenligner pårørendesreaksjoner og egen situasjon. De er redd at fellesskapet med pårørende skal opphøre, samtidig må de begrensesamværet. Å ikke kunne kommunisere med pårørende i kroppsnærværet oppleves motsetningsfullt. I delstudieIV formidler sykepleierne kunnskap til intensivstudentene gjennom meningsskapende kunnskapsbevegelser. Deformidler inntrykk fra situasjonen for å skape oversikt, de formidler kunnskap om fenomenene som framtrer ogde formidler hvordan de kan hjelpe kroppens egne prosesser. De vurderer og formidler også pasienteneskroppslige uttrykk og hvordan disse kan forstås og imøtekommes. Sykepleierne er også opptatt å formidlekunnskap for at studentene skal utvikle og få egne erfaringer i kroppen. Konklusjon: Gjennom fire delstudier løfter avhandlingen fram kunnskap som står i klar kontrast til dennaturvitenskapelige kunnskapen. Pasientene utsettes for store opplevelsesmessige belastninger i situasjonen somakutt/kritisk syke som setter de i en avmaktssituasjon ved at sykepleierne ikke fanger opp og handterer kroppensegen kunnskap i situasjonen. Pasientene befinner seg ofte i en eksistensiell situasjon som er preget avmarginalitet og eksistensiell væren. Pasientene viser at de har forutsetninger for å mestre situasjonen, menhjelpes lite til slik mestring. Intensivsykepleierne formidler ulikt faglig innhold til studentene for å skapeerfaringer og forståelse i situasjonen. Erfaringskunnskapen fra intensivkonteksten må derfor sees som et viktigkunnskapssupplement til folkehelsearbeidet. / Background and purpose: Acute/critically ill patients have had their life-conditions severely altered from awell-functioning everyday situation to a situation in which they struggle to survive. Traditionally the knowledgeparadigmfrom natural sciences together with medical expertise constitutes the framework for treatment. To beacute/critically ill involves experiences and events and phenomena typical to the situation. The patients’embodied knowledge is not limited to the personal and private sphere, it refers to highly relevant preconditionsfor visibility and reception, also on an existential level; it represents knowledge which needs to be researchedand discussed openly within the public health and nursing sciences. This knowledge represents a differentontology and epistemology from the natural sciences and thus a different perspective, also with regards toclinical tutoring. The dissertation’s primary target is to increase the knowledge about how critical illness isexperienced and how experience based knowledge is significant to teaching in an intensive care context. Data and methods: The dissertation is based on qualitative methods. Sub-study I includes reviews ofarticles on stress in a perspective of body, space and relationship. Sub-study II contains interviews with formerICU patients relating to their experience of body, strength and movement during critical illness. Sub-study III isbased on former ICU patients’ experience of the physical presence of their significant others during criticalillness. Sub-study IV contains observations and interviews of ICU nurses on how they teach experience basedand interpretation based knowledge in clinical tutoring. Phenomenological-hermeneutic analysis method isapplied to all four sub-studies. Findings: Sub-study I describes how patients experience stress in a perspective of body, space andrelation. The body is influenced by sleep deprivation, pain and anxiety. Patients experience loss of control withtheir bodies as well as with the situation. The room mirrors the situation patients are in, creating stress by itsrepresentation of life as well as fear of dying. The patient’s horizontal position reflects disproportionate powerinducing a sense of disempowerment. Relational stress situations usually appear in contexts involvingobservation, care or treatment. The organizational structure and activity on the ward affects stress levels. In substudyII the ICU patients experience how power and movement is affected by a sense of loss of body, how theymanage to respond to the situation and how they eventually reclaim the body, power and movement. Theyexperience disempowerment and limitations to movement. This causes dependency and creates conflicts withtheir significant others, especially with regards to proximity and distance. The patients address their loss of bodyby drawing on resources from their significant others, yet refrain from allowing themselves involvement infamily matters. The struggle for survival is characterised by gallows humour and the cry for help as their finalcry. Reclaiming the body happens stepwise with the aid of staff combined with a need to achieve. Sub-study IIIdescribes problems related to proximity to, and distance from, the significant others. A sense of exclusion iscontradicted by being showered with gifts. It is unsettling for patients to have their situation compared to theirsignificant others’. They fear the loss of community with loved ones, yet they need to limit visits fromsignificant others. The lack of ability to communicate when others are physically present is unsettling. Sub-studyIV describes how ICU nurses tutor students in practise by demonstrating knowledge in meaningful actions. Theyconvey their impressions of situations to provide an overview, convey knowledge of observable phenomena, andteach skills to assist the body’s own processes. They also assess and evaluate physical expressions in the patientand how these can be read and addressed. Nurses are also concerned with conveying embodied knowledge totheir students. Conclusion: In four sub-studies this dissertation highlights a form of knowledge which clearly contraststhat of the natural sciences. During acute critical illness patients experience severe stress and disempowermentcaused by a lack of response and action from nurses who are unable to interpret the body’s own knowledge inthe situation. Patients are often facing life and death questions characterised by marginality and existentiality.Patients demonstrate ability to cope with the situation, but are rarely assisted with coping. Intensive care nursesdisseminate a variety of professional skills and knowledge to their students in order to provide comprehensionand understanding of situations. Experience based knowledge from an intensive care context thus becomes asignificant supplementary factor in the public health perspective

Living Disability: Ways Forward from Decontextual Models of Disability consists of six articles that provide both theoretical and pragmatic commentaries on decontextual approaches to vulnerability and disability. In What Contemporary Models of Disability Miss: The Case for a Phenomenological Hermeneutic Analysis I argue many commonly accepted models for understanding disability use a vertical method in which disability is defined as a category into which people are slotted based on whether or not they fit its definitional criteria. This method inevitably homogenizes the experiences of disabled people. A hermeneutic investigation of commonly accepted models for understanding disability will provide an epistemological tool to critique and to augment contemporary models of disability. In A Phenomenological Hermeneutic Resolution to the Principlist- Narrative Bioethics Debate Narrative, I note narrative approaches to bioethics and principlist approaches to bioethics have often been presented in fundamental opposition to each other. I argue that a phenomenological hermeneutic approach to the debate finds a compromise between both positions that maintains what is valuable in each of them. Justifying an Adequate Response to the Vulnerable Other examines the possibility of endorsing the position that I, as a moral agent, ought to do my best to respond adequately to the other’s vulnerability. I contend that, insofar as I value my personal identity, it is consistent to work toward responding adequately to the vulnerability of the other both ontologically and ethically. Who Can Make a Yes?: Disability, Gender, Sexual Consent and ‘Yes Means Yes’ examines the ‘yes means yes’ model of sexual consent, and the political and ethical commitments that underpin this model, noting three fundamental Ph.D. Thesis – C. Kavanagh; McMaster University - Philosophy v disadvantages. This position unfairly polices the sexual expression of participants, particularly vulnerable participants such as disabled people, it demands an unreasonably high standard for defining sexual interaction as consensual, and allows perpetrators of sexual violence to define consent. In Craving Sameness, Accepting Difference: The Possibility of Solidarity and Social Justice I note realist accounts typically define solidarity on the basis of a static feature of human nature. We stand in solidarity with some other person, or group of people, because we share important features in common. In opposition to such realist accounts, Richard Rorty defines solidarity as a practical tool, within which there is always an ‘us’, with whom we stand in solidarity, and a ‘them’, with whom we are contrasted. I argue that by understanding Rorty’s pragmatic solidarity in terms of the relational view of solidarity offered by Alexis Shotwell, it is possible to conceptualise solidarity in a manner that allows for extending the boundaries of the community with whom we stand in solidarity. In Translating Non-Human Actors I examine Bruno Latour’s position that nonhuman things can be made to leave interpretable statements, and have a place in democracy. With the right types of mediators, the scientist can translate for non-humans, and those voices will allow for nonhuman political representation. I wish to suggest that, like scientists, people with disabilities are particularly capable of building networks that facilitate translation between humans and non-humans. / Thesis / Doctor of Philosophy (PhD) / Living Disability: Ways Forward from Decontextual Models of Disability consists of six separate articles that provide both theoretical and pragmatic commentaries on decontextual approaches to vulnerability and disability. The first three articles examine contemporary approaches to understanding vulnerability and disability, and explore what a contextual theoretical approach, one that puts the experiences of people with disabilities at the centre, might look like. The second three articles provide a bioethical examination of practical ethical questions associated with the treatment of people with disabilities when it comes to social and political positions on disability and sexuality, solidarity with people with disabilities, and the relationship between people with disabilities and objects.