Patients are living longer with many types of cancer; however, often they face sudden possibilities of dying, not only due to their advancing illness but due to complications of their treatment. Consequently, they can express substantial existential distress. Nurses’ close proximity to patients puts them in an ideal place to assess and engage with patients’ existential distress; yet this kind of research has been scarce. The purpose of this doctoral thesis was to explore nurses’ experiences of being with patients facing the threat of mortality. Yalom describes this threat as the fear of death, isolation, anxiety and responsibility about freedom, and meaninglessness. The study took place in a cancer setting where care is highly technological and goals of cure dominate, specifically, two bone marrow transplant units of one institution in Canada. Benner’s methodology of interpretive phenomenology guided data collection and analysis of focused observations and interviews with 19 registered nurses. The experience of fighting cancer while preparing for the possibility of letting go was the main theme. Letting go did not reflect nurses’ intents to abandon life but to release patients (if only briefly) from perceived norms of the curative culture. More specifically, the main theme was characterized by: 1) working within the culture of cure and the possibilities of patients dying, 2) concern about “bursting the bubble of hope,” 3) whether to and how to respond to patients’ distress and dying, and 4) coping with patient involvement. In the context of responsive relationships (patients and their families, and healthcare colleagues), nurses reported engaging in communication about the threat of patients’ mortality, and responding with letting be and supporting families to let go, the management of technology and prevention of technological intrusions, and striving for patients to have “easier” deaths. Results indicate a potential to enhance nurses’ supportive care constituted by their perceived responsibility to engage and respond to patients’ existential distress. Moreover, this study suggests that more attention is warranted not only to policy, education, and research that focuses on patients’ existential well-being, but to the well-being of nurses working within tensions of curing and comforting.

Patients are living longer with many types of cancer; however, often they face sudden possibilities of dying, not only due to their advancing illness but due to complications of their treatment. Consequently, they can express substantial existential distress. Nurses’ close proximity to patients puts them in an ideal place to assess and engage with patients’ existential distress; yet this kind of research has been scarce. The purpose of this doctoral thesis was to explore nurses’ experiences of being with patients facing the threat of mortality. Yalom describes this threat as the fear of death, isolation, anxiety and responsibility about freedom, and meaninglessness. The study took place in a cancer setting where care is highly technological and goals of cure dominate, specifically, two bone marrow transplant units of one institution in Canada. Benner’s methodology of interpretive phenomenology guided data collection and analysis of focused observations and interviews with 19 registered nurses. The experience of fighting cancer while preparing for the possibility of letting go was the main theme. Letting go did not reflect nurses’ intents to abandon life but to release patients (if only briefly) from perceived norms of the curative culture. More specifically, the main theme was characterized by: 1) working within the culture of cure and the possibilities of patients dying, 2) concern about “bursting the bubble of hope,” 3) whether to and how to respond to patients’ distress and dying, and 4) coping with patient involvement. In the context of responsive relationships (patients and their families, and healthcare colleagues), nurses reported engaging in communication about the threat of patients’ mortality, and responding with letting be and supporting families to let go, the management of technology and prevention of technological intrusions, and striving for patients to have “easier” deaths. Results indicate a potential to enhance nurses’ supportive care constituted by their perceived responsibility to engage and respond to patients’ existential distress. Moreover, this study suggests that more attention is warranted not only to policy, education, and research that focuses on patients’ existential well-being, but to the well-being of nurses working within tensions of curing and comforting.

Abstract "Man vill ibland ge svar, och så har man inte de svaren"  Sjuksköterskors föreställningar om existentiell omvårdnad, och upplevelsen av hur utbilningen rustade dem för det uppdraget.  Syftet med denna uppsats är att undersöka sjuksköterskors föreställningar om existentiell omvårdnad, och hur de upplevt att grundutbildningen rustat dem för den existentiella dimensionen av helhetsperspektivet som betonas inom vården. Några av de frågor som behandlas är vad begreppet existetiell omvårdnad innebär och vilket utrymme den har i praktiken. Andra frågor som uppsatsen belyser är hur grundutbildningen rustat de blivande sjuksköterskorna för den existentiella omvårdnaden och om det finns ett upplevt behov av fortbildning efter grundutbildningen. Tidigare forskning visar att existentiell omvårdnad upplevs vara ett eftersatt område, både i sjuksköterskeutbildningen och i praktiken. Denna uppsats bygger på semistrukturerade intervjuer med sex sjuksköterskor, utifrån fenemenlogisk ansats. Resultatet i studien överensstämmer i stor utsträckning med tidigare forskning. Det pekar på en samstämmighet om att helhetsperspektivet i vården betonas under utbildningenoch i praktiken, men upplevelsen är att den existentiella dimensionen ändå tenderar att få för lite utrymme. Uppsatsen belyser faktorer som bidrar till denna upplevda brist. Vidare lyfter den fram utvecklingsområden gällande existentiell omvårdnad - i utbildningskontexten och i praktiken. Den relationella pedagogiken lyfts fram som en möjlighet när det handlar om utbildning och fortbildning i existentiell omvårdnad.  Keywords: Nurse, Education, Spiritual care, Teaching, Existential care, Sjuksköterska, Utbildning, Andlig vård, Undervisning, Existentiell omvårdnad "Sometimes you want to give answers, and then you don´t have those answers..." Nurses´ideas about spiritual care, and the experience of how the education equipped them for that task.

Syrén, Susanne (2010). Det outsagda och ohörsammade lidandet. Tillvaron för personer med långvarig psykossjukdom och deras närstående (Being in the world with long term psychotic illness – the unspoken and unheard suffering), Linnaeus University Dissertations No 6/2010. ISBN: 978-91-86491-07-9. Written in Swedish with a summary in English. Aim: The overall aim of the thesis was to describe the lived experience of being in the world with long term psychotic illness. This is described from three perspectives; the perspective of persons diagnosed with long term psychotic disorder; the perspective of their relatives; and a family perspective. Method: Three studies were conducted guided by a reflective lifeworld approach grounded in phenomenology. The data were generated through individual, group, and family interviews. Data were analyzed for essential meanings of being in the world. Results: Persons with long term psychotic illness live in a borderland of paradoxes between the usual and unusual. For the ill persons the existence is incomprehensible and defenceless with feelings of not being at home in the body and in the world. They search for themselves in a care context that is contradictory, simultaneously good and hostile. These experiences are mostly unspoken, a struggle with doubts about having health or illness, what is good or evil, and about being usual or unusual. The relatives exist in a dilemma of the possible and impossible, a continual infinite struggle. Co-existing with their ill family member is a communion and a longing for togetherness is prominent. Relatives struggle with responsibilities for themselves and for their ill family member. In these unheard struggles the relatives yearn for participation in the formal care context. Family interviews with persons with long term psychotic illness and their relatives revealed a co-existence hovering between chaos and boredom while striving for a peaceful and quiet life. Thefamilies search for constancy and predictability in the presence of incomprehensible and threatening dangers. The experience of being a We balances the unshared meanings of being in the world and the loss of being able to experience and do things together. The experience of being a We keeps their individual existence and co- existence from falling apart.Conclusion: Persons with long term psychotic illness and their relatives have to withstand extensive existential suffering, which is unspoken and unheard. Formal caring should be existential caring, supporting the ill person’s comprehensibility and understanding of life, and feelings and experiences of being at home. Further, relatives should be acknowledged both as persons and carers and invited to participate in formal care. These results also point to the importance of strengthening feelings of togetherness and of being a We through systemic oriented existential conversations, where the ill person, their relative and a formal carer converse together.

Background: Mental illness is a major challenge to the global burden of health care. In order to improve and develop the experience of nurses global, it is thus important to gain an increased understanding of existential dimension. Aim: The aim of this study was to illuminate the experiences of psychiatric nurses in existential care. Method: A general literature review following the Evans model (2002), a descriptive synthesis based on already 10 published qualitative articles. Results: Two main themes were formulated in the result: Caring relationship and Lack of knowledge. Four subthemes were constructed from these. To openness to the existential drive (strength), To identify the existential suffering, Need for knowledge development and Nurse approach to own spirituality. These had an impact on psychiatric nurses' experience of existential nursing. Conclusion: Nursing relationships and knowledge play an important role in nurses' experience of existential nursing in psychiatry. This study highlights that further research on existential nursing in psychiatry is recommended in order to improve the experience of nurses, to reduce suffering, and thereby improve healthcare. / Bakgrund: Psykiska sjukdomstillstånd är en stor utmaning till den globala sjukvården. För att förbättra och utveckla sjuksköterskors erfarenhet globalt, är det således av vikt att få en ökad förståelse för den existentiella dimensionen. Syfte: Syftet med studien var att belysa sjuksköterskors erfarenheter av existentiell omvårdnad vid psykiatrisk vård. Metod: En allmän litteraturstudie som analyserades med hjälp av Evans model (2002), en beskrivande syntes baserade på 10 publicerade artiklar. Resultat: Två teman formulerades i resultatet: Vårdande relation och Bristande kunskap. Fyra subteman konstruerades från dessa teman: Vårdande relation har två subteman - Öppenhet för den existentiella driftkraften och Att identifiera det existentiella lidandet. Bristande kunskap har två subteman - Behov av kunskapsutveckling och Sjuksköterskans förhållningsätt till egen andlighet. Dessa hade en inverkan på psykiatrisjuksköterskors erfarenhet av existentiell omvårdnad. Slutsatser: Vårdrelation och kunskap har en viktig roll i sjuksköterskans erfarenheter av existentiell omvårdnad inom psykiatri. Denna studie visar att ytterligare forskning om existentiell omvårdnad inom psykiatri rekommenderas för att kunna förbättra erfarenheter hos sjuksköterskor, minska lidandet och därmed förbättra sjukvården.

Bakgrund: Hur människor hanterar vetskapen att livet är på väg mot sitt slut kanskilja mycket. Gemensamt för många palliativa patienter är en andlig och existentielloro. Andlig vård kan öka både livskvalitet och välbefinnandet hos dessa patientersamt minska den ångest som många upplever inför den stundande döden. Genom attsprida kunskap inom andlig vård för vårdpersonal kan den palliativa vårdenförbättras. Syfte: Syftet med denna studie är att beskriva vårdpersonals erfarenheter av attstödja det andliga och existentiella välbefinnandet hos patienter i livets slutskede. Metod: En litteraturstudie baserad på 8 kvalitativa artiklar. Sökningarna gjordes idatabaserna Cinahl, PubMed och PsycInfo. Analysen av datan följde Fribergsfemstegsmodell. Resultat: Analysen ledde fram till tre teman och nio underteman. Teman var:‘Bidragande faktorer till god vård’, ‘Hindrande faktorer till god vård’ och‘Erfarenheter av att möta svåra symtom’. Konklusion: Som palliativ vårdpersonal bör man vara medveten om att verktygsåsom samtal, tystnad, delegering och särskilda vårdinterventioner kan förbättrapatientens andliga och existentiella välbefinnande. Flera deltagare efterfrågadeutförligare utbildning inom ämnet och detta är något som bör utredas vidare. Detfinns även behov av ytterligare forskning generellt inom andlig och existentiell vård,särskilt med kvantitativ design då sådan forskning är en bristvara. / Background: How people deal with the notion that life is coming to an end candiffer. But common for a lot of palliative patients is spiritual and existential distress.Spiritual care can increase both quality of life and wellbeing and decrease the level ofanxiety that plenty experience in front of the impending death. By spreadingknowledge on spiritual care, the palliative care could improve. Aim: The aim of this study is to describe healthcare professionals’ experiences ofsupporting the spiritual and existential well-being in end of life care. Methods: A literature study based on 8 qualitative articles. The database searcheswere made in Cinahl, PubMed and PsycInfo. The data analysis followed Friberg’s fivestep-model. Results: The analysis led to three themes and nine subthemes. The themes were:‘Contributory factors to good care’, ‘Obstructive factors to good care’ and ‘Experiencesof meeting difficult symptoms’. Conclusion: Palliative healthcare professionals should be aware that tools likeconversation, silence, delegation and care interventions can increase patientsspiritual and existential well-being. Many participants requested more education onthis subject and that should be investigated further. There is also a need foradditional research on spiritual and existential care, especially with a quantitativedesign.