Aim: The overall aim of the thesis was to illuminate the meanings of intensive care units’ patient rooms as a place of care for critically ill patients and their loved ones. Moreover, it was aimed to develop photovoice as a data collection method for research in ICU context. Methods and materials: Data has been collected using photovoice methodology in combination with research interviews for all three empirical studies. In total 37 people participated. Nine patients, fourteen loved ones and fourteen nurses from three ICU settings. Study I examined the perspective of loved ones, for this purpose a phenomenological hermeneutic method rooted in the philosophy of Ricoeur was chosen. Study II and III examined patients’ respectively nurses’ perspective. Both studies are phenomenologically orientated guided by a reflective lifeworld approach rooted in continental philosophy. Study IV is a theoretical paper focusing on employing photovoice as a data collection method in ICU context. Main findings: The tone and touch of caring is vital for how ICU patient room is materialized for patients. The interior design and furnishing has a great impact on the wellbeing of the loved ones and also the support they can offer the critically ill patient. One major finding is that the ICU patient room is a taken for granted place for health care providers and the impact of it upon caring, patients’ and loved ones wellbeing is not reflected over. It also seems unclear who is responsible for the environment of ICU once it has been built. The environment of ICU affects nurses’ ability to care for the patients and their family in a genuine way and to promote their wellbeing during a fragile time in life. Conclusions: There is an urgent need to translate research findings into clinical practice in order to improve the environment of ICU patient rooms. There is also need of further research and policies for transforming the hostile environment of the patient rooms to a healing environment more conductive to people’s recovering process. / <p>Akademisk avhandling som för avläggande av filosofie doktorsexamen vid Linnéuniversitetet försvaras vid offentlig disputation, 13 juni 2014, klockan 14.00 i sal Wicksell, Hus K, Växjö</p>

Nursing research has been performed during the last 20-30 years, about the next of kin’s vulnerability. Despite this, the health care system has had difficulties to integrate the next of kin in a way that gives support. The overall aim of the thesis was to describe and further explore the life situation of the next of kin to persons who are long-term ill, disabled, and/or older, and in need of care. Method: Multiple methods were used. Study I had a descriptive design, 44 next of kin of patients with multiple sclerosis were interviewed, latent content analysis was used for the analysis. Study II had a mixed method approach; the descriptive core study was analyzed with directed content analysis. The supplementary study with descriptive, correlative design was analyzed with descriptive and correlative statistics. Forty-four next of kin of patients with multiple sclerosis were interviewed; thereafter 37 of them answered a questionnaire about Quality of Life. Study III had a descriptive, explorative design. Twelve next of kin of older persons were interviewed with repeated informal conversational interviews, analyzed with latent content analysis. Study IV was cross-sectional with a descriptive, correlative design. Eighty-four next of kin of persons who were long-term ill, disabled, and/or older answered two questionnaires about Burden and Quality of Life that were analyzed with descriptive and correlative statistics. Results and Conclusions: Next of kin described a balance/imbalance in their relations to others and a high burden, but in general a good Quality of Life. Some next of kin also experienced chronic sorrow. Significant correlations were found between interpersonal relations and Quality of Life as a whole. Love and obligations were two anchor points on a continuum, describing the next of kin’s relationship to the ill/disabled person. The relationship with the health care personnel was described through cooperation and obligations. Good communication was seen as the key to balance the relationship with others. One possibility to achieve symmetrical communications is to adapt the Partnership Model, as a tool for creating good relationships. Honest and specific communication between the health care personnel, the next of kin, and the care receiver are necessary.

Understanding dispersal is a central aim of evolutionary ecology. Theoretical analyses of dispersal have been crucial in identifying key variables which contribute to its evolution and maintenance, but the supporting empirical data remains elusive. Microbes offer a powerful model system on which ecological and evolutionary theory can be experimentally tested with controlled and replicated experiments, and with the convenient malleability of selective pressures and bacterial genomics. Pseudomonas aeruginosa is an ubiquitous, opportunistic pathogen that is able to induce acute or chronic infections in a broad array of hosts. As well as in vivo environments, P. aeruginosa can be found in a range of ecological habitats, from solid to aqueous, and as such requires a variety of dispersal mechanisms (including swimming, gliding on a surfactant and ‘crawling’) for effective colonisation and infectivity. In this thesis, I present a collection of papers which outline empirical ecological and evolutionary experiments to identify the abiotic and biotic forces that shape the evolution of these different dispersal mechanisms, with particular focus on the theoretically important role of kin competition and the structure of the abiotic environment.

In this thesis, I explore four different ways in which relatedness affects sexual interactions in the red junglefowl Gallus gallus ssp., and the fruit fly Drosophila melanogaster. First, I show that in both species, inbreeding depression is sex-specific and modulated by parental age and gametic age. However, the sex that suffers higher inbreeding depression was trait- and species-dependent. Second, I examined patterns of inbreeding avoidance. I found no evidence of inbreeding avoidance in the fruit fly, but in the red junglefowl both males and females avoided mating with relatives, independently from sex-ratio of the social group. Third, I investigated whether relatedness amongst members of one sex affects mate choice in members of the opposite sex. Male fruit flies preferentially courted females unrelated to females with whom they had previously mated, while female flies displayed a weak preference for males related to their previous mates. In the red junglefowl, females exposed to male trios of two males related to each other and one unrelated male, displayed a marked preference for mating with the male unrelated to the other two males, and might also bias postcopulatory sperm utilization in favour of the unrelated male. Fourth, I explored the implications of male relatedness on the intensity of male-male competition. Male red junglefowl were less aggressive towards related competitors, but invested more sperm in females that had previously mated with a related male rather than with an unrelated male. In fruit flies, male relatedness had a strong impact on female life-history and offspring viability, although I found no evidence that these effects were modulated by changes in male-male competition. Collectively, the findings of these studies demonstrate the complex relationship between relatedness and other important biological phenomena as such senescence and sexual conflict.

Aim: The overall aim of the thesis was to explore and describe the concepts of guilt and shame and gain a greater understanding of the next-of-kin’s experiences of guilt and shame in end-of-life care. Methods: Study I was a qualitative secondary analysis of 47 interviews with next-of-kin searching for experiences of guilt and shame. In study II a semantic concept analysis of the two concepts guilt and shame was performed. In studies III and IV a hermeneutic approach inspired by Gadamer was used to analyze next-of-kin’s experiences of guilt (Study III), and shame (Study IV) in end-of-life care. Main findings: The concept of guilt focus on behaviour and the concept of shame on the influence on the self.  The situation of being next-of-kin in end-of-life care involves a commitment to make the remaining time for the loved one as good as possible. When, for some reason, the commitment cannot be accomplished there is a risk that the next-of-kin experience guilt such as not having done enough, not having been together during important events, not having talked enough to each other, or not having done the right things. Aspects such as not having fulfilled a commitment, omission, and being the cause of can be present in these experiences. The guilt experience has a focus on what the next-of-kin has, or has not done. The experiences of shame are also linked to a perception that the remaining time for the loved one should be as good as possible. Shame can occur when the next-of-kin is involved and actually causes harm to the loved one as well as in situations that are beyond their control. Shame that the next-of-kin experience can also emanate from being put in situations by other people. Feelings of inferiority and powerlessness, second order shame, and family conflicts that are brought into the open are experiences of shame found in the studies as well as ignominy, humiliation, and disgrace. The shame experience has a focus on the next-of-kin’s self. Conclusion: The situation of being next-of-kin in end-of-life care is complex and demanding, something that health professionals should be aware of. Acknowledgement of experiences of guilt and shame can help the next-of-kin in their adaptation to the end-of-life situation as a whole and maybe also give useful tools to support next-of-kin during bereavement.

Background: A growing number of older people, mainly women, live in single households. They represent avulnerable group as staying at home may turn out challenging when care needs increase, particularly at the end oflife. Non-kin-carers can play an essential role in supporting individuals' preferences to stay at home. In research Little attention has been paid to non-kin-carers, such as friends and neighbors, yet. Thus, the Older People Living Alone (OPLA) study will evaluate whether non-kin support is robust enough to enable care dependent people to stay athome even at the end of life. This paper aims to introduce the research protocol. Methods: We plan to apply a qualitative longitudinal study to better understand how older people living aloneand their non-kin-carers manage to face the challenges with increased care needs towards the end-of-life. We willconduct serial interviews with the older persons living alone and their non-kin-carers. A total of 20-25 completedata sets and up to 200 personal interviews were planned. These will be complemented by regular telephonecontacts. All interviews will be analysed following the grounded theory approach and strategies for reconstructingcase trajectories, supported by MAXQDA software. In the course of the study, inter- and transdisciplinary workshopsshall assure quality and support knowledge transfer. Discussion: This study protocol aims to guide research in a field that is difficult to approach, with regard to itstopic, methodology and the interdisciplinary approach. As this study introduces longitudinal qualitative Research methodology in the field of home care in Austria, a deeper understanding of (end-of-life-) care trajectories will beenhanced, which is of major relevance for future care planning. With investment in additional reflexivity andcommunication procedures innovative results and robust knowledge are expected outcomes.

Med palliativ vård menas att inriktningen på vården är att lindra symptomen, möjligheten att bota sjukdomen finns inte längre. Läkaren ska då försäkra sig om att livsuppehållande behandlingar inte längre kan påverka sjukdomsförloppet, ta största möjliga hänsyn till patientens önskemål och ta det avgörande beslutet att avsluta eller avbryta en livsuppehållande behandling. Palliativ vård är på många områden numera utbyggd till avancerade hemsjukvårdsteam. Tidigare studier har i huvudsak fokuserat på anhöriga eller vårdpersonal och då särskilt sjuksköterskans upplevelser av att vårda palliativa patienter. Därför är det viktigt att tydliggöra patientperspektivet. Syftet med denna litteraturstudie var att beskriva befintlig forskning om hur patienter inom palliativ vård upplever den sista tiden i livet. Metoden som använts är litteraturstudie och resultatet är funnit i 10 vetenskapliga artiklar. Resultatet redovisas med hjälp av fyra kategorier; Hopp och hopplöshet, Mening och maktlöshet, Tillgänglighet och ensamhet samt Acceptans. Slutsatsen är att den som är allvarligt sjuk och står inför döden bör mötas och behandlas av palliativ vård som grundas i hopp, mening, tillgänglighet och acceptans. För att förbättra den sista tiden i livet för patienten inom palliativ vård när det gäller bevarad värdighet finns det, med stöd i studiens resultat, specifika aspekter att beakta. Patienten bör delta i sin vård så långt det är möjligt; Hopp är inte alltid kopplat till bot; Vårdarna bör underlätta sociala kontakter; Vårdarna bör vara tillgängliga, även när det inte finns något att säga; Allvarlig information bör ges stegvis; och Teamarbete med flera olika professioner.

Bakgrund: Donationsprocessen är en del av intensivvården som ställer stora krav på de närstående, som förutom att ha drabbats av plötslig förlust, också har ett beslut om donation att ta ställning till. Intensivvårdssjuksköterskor har en stor roll i denna process men upplever ofta det svårt att veta hur de ska bemöta de närstående på ett bra sätt. Syfte: Att identifiera och sammanställa hur närstående till potentiella organdonatorer upplever transitionerna de genomgår under donationsprocessen. Metod: Studien utfördes som en litteraturöversikt med kvalitativ design. En deskriptiv innehållsanalys utfördes av 17 stycken studier som baserats på intervjuer med närstående kring deras upplevelser av donationsprocessen. Resultat: De närståendes transitioner sammanfattades i tre huvudkategorier: från liv till död, insikt och acceptans och från död till liv. Beskrivningarna av deras upplevelser kretsade i huvudsak kring bemötande från vården, samtyckesprocessen och förståelse för situationen. De flesta upplevde ett gott empatiskt bemötande men många hade svåt att ta till sig och förstå information kring framför allt hjändödsbegreppet. Att ta ett beslut om samtycke till donation upplevdes för vissa som en tröst då det gav förlusten en mening, medan andra upplevde det som ett omöjligt och fruktansvärt beslut att ta. Slutsats: Viktiga områden för näståendes upplevelser under donationsprocessen var bemötandet, det emotionella stödet, informationen och beslutsfattandet. Kunskapen om närståendes upplevelser är relevant för intensivvården och intensivvårdssjuksköterskan för att vården skall kunna ge den omvårdnad som behövs under processen. / Background: The process of organ- and tissue donation is a part of the critical care that puts a lot of pressure on the next of kin who as well as being victims of a sudden loss, need to make a decision about donation. Intensive care nurses play a major role within this process and often experience it difficult to know how to respond to the next of kin in a good way. Aim: To identify and compile how next of kin to potential organ donors experience the transitions they go through during the donation process. Method: This study has been conducted as a review of previous literature and with a qualitative design. A descriptive content analysis was performed of 17 studies which were based on interviews with next of kin and their experiences with the donation process. Results: The next of kin transitions were compiled into three main categories: from life to death, insight and acceptance and from death to life. The description of their experiences through these transitions mainly focused on reception from hospital staff, the decision-making process and their perception of the situation. The reception in the majority of the cases was considered good and empathetic. A number of them had a difficult time understanding the information given to them, in particular about the meaning of brain death. Some of the next of kin did experience making the decision about donation as a comfort that gave them a deeper meaning to their loss, while others experienced it as an impossible and dreadful decision to make. Conclusion: Important aspects recognized by the next of kin during the donation process were; the personal treatment, the emotional support, the received information and the decision-making. The knowledge surrounding experiences of the next of kin, is relevant to the intensive care and the intensive care nurse, to reassure that they provide the care needed during the process.

In the care for the critically ill patient the next of kin is of great importance. Their support, love and care for the patient, increases the wellbeing and makes a connection to the patient’s normal lifeworld. For the next of kin to be able to be that support the next of kin needs to be helped to maintain the basic need of for example their sleep, food, hygiene and psychosocial support. The critical care nurse must see to the patient’s whole lifeworld which includes their next of kin.The aim of the study was to identify the resources available for the next of kin in intensive care units in Sweden. The study has its origin in a quantitative approach and a multiple choice questionnaire survey was selected as the data collection method. The respondents were intensive care employees from all over Sweden. At the time of the study, there were 86 intensive care units in Sweden which all were invited to participate in the study. Answers were received from 53 respondents representing ~62 % of ICUs in Sweden.The findings revealed that the resources for next of kin among the responding units were overall good to maintain the basic needs. The units mainly provided 1-2 rooms for the next of kin to use for resting and recovery while staying at the hospital. All the units were available to telephone 24 hours a day but there were some units that had restrictions when it came to visiting the critically ill patient. All ICUs in Sweden were invited to participate in the study but there were 38 % which chose not to participate. The outcome of the study could therefore have been different if the nonparticipant ICUs had different resources and opinions when it came to the care for the next of kin of patients staying at ICU. The conclusion is that intensive care units in Sweden has overall good resources to care for next of kin while visiting and staying at ICUs. / Program: Specialistsjuksköterskeutbildning med inriktning mot intensivvård

Idag finns möjligheten för svårt sjuka människor att få dö i sitt hem, ofta med hjälp och stöd av närstående och av andra professionella vårdgivare. I den palliativa vården och vid vård i livets slutskede är närstående betydelsefulla i omvårdnaden och behöver stöd från distriktssjuksköterskan. För att det ska bli så bra som möjligt för de närstående att vårda i hemmet behöver distriktssjuksköterskan veta vilka stödåtgärder som de närstående behöver.Syftet med studien var att beskriva närståendes upplevelse av att vårda en närstående som är i en palliativ fas eller i livets slutskede i hemmet.Metoden som användes var en litteraturstudie. Tretton kvalitativa artiklar som motsvarade syftet analyserades med hjälp av kvalitativ innehållsanalys.Ur resultatet framkommer närståendes upplevelser som sammanställts i åtta kategorier. Dessa är att uppleva trygghet, att uppleva otrygghet, att bli bekräftad, att bli negligerad, att uppleva glädje och tillfredställelse i vårdandet, att uppleva vårdandet som en börda, att försöka bevara det invanda samt att uppleva förändrad livssituation.Resultatet visar att närståendes upplevelser av att vårda i hemmet kan skilja sig från individ till individ. För att närstående ska kunna få rätt stöd och support från distriktssjuksköterskan är det viktigt att kommunikationen fungerar mellan parterna. Kommunikation är grundläggande för att kunna bygga en bra relation mellan distriktssjuksköterskan och närstående för att möjliggöra att rätt stödåtgärder sätts in. Närståendes behov av stöd varierar, vilket kan ha många orsaker. En av dessa orsaker kan bero på vilket genus den närstående har. Därför vore det värdefullt att framtida forskning fokuserar på män respektive kvinnors upplevelser som närståendevårdare. / Program: Specialistsjuksköterskeutbildning med inriktning mot distriktssköterska