Avhandlingens övergripande syfte är att tolka och beskriva innebörder av stöd, utifrån att vara förälder till barn med funktionsnedsättning och att vara professionella stödjare. Datainsamling har skett i form av berättande intervjuer med 39 föräldrar (23 mödrar och 16 fäder) och 9 professionella (7 kvinnor, 2 män) från olika verksamheter. Samtliga intervjuer har analyserats med hjälp av fenomenologisk hermeneutisk metod. Innebörder av att vara förälder till barn med funktionsnedsättning (studie I) har tolkats som en medvetenhet om viktiga värden i livet. Barnet har ett inneboende värde som en unik person och föräldrarna strävar efter att göra sitt bästa för barnet. Denna strävan innebär att konfrontera oro, osäkerhet och rädsla i vården av barnet och andra personers nedvärdering av barnet. I föräldrarnas strävan att tillmötesgå barnets olika behov, ingår också att anpassa egna behov efter barnets. Den fördjupade förståelsen av studiens resultat är, att det handlar om en strävan att möjliggöra för barnet att leva ett gott liv. Innebörder av att få stöd av professionella (studie II) har tolkats som att föräldrar och barn blir bekräftade som värdefulla personer och att föräldrarna uppnår trygghet och kompetens i föräldraskapet och får ett hopp för barnets framtid. Erfarenheter av att inte få stöd, medför en kamp mot de professionella, för att kräva det stöd som föräldrarna anser att de och barnet behöver. Innebörder av att vara professionell stödjare (studie III), består av att ha personlig filosofi, som är integrerat i sättet att vara och handla som stödjare. Det innebär att vara trygg i hoppet om att det alltid går att göra något för att hjälpa, genom att söka unika lösningar i den aktuella situationen. Tillit till föräldrar som partners och att få deras tillit, samt att möjliggöra för föräldrarna att uppnå kompetens och trygghet i vården av sina barn är andra innebörder. Detta har tolkats som en frihet från att vara bunden av byråkrati och prestige och en möjlighet att vara äkta, följa sin filosofi och att vara i samklang med barn och föräldrar. Innebörder av informellt stöd (studie IV) har tolkats som en livsberikande gemenskap, där barnet, innefattas i kärleksfulla relationer med närstående och har en naturlig plats i samhället. Att som föräldrar kunna dela glädje, oro och sorg med andra personer och att få möjlighet att uppleva lättnad och spontanitet i det dagliga livet, är andra innebörder av informellt stöd. Helhetsförståelsen av de fyra studierna är, att stöd av professionella i sin tur är ett stöd i föräldrars etiska förpliktelse i deras strävan att möjliggöra för barnet att leva ett gott liv. Informellt stöd betyder att föräldrar och barn är inneslutna i trofasta och berikande relationer med andra. / The overarching aim of this thesis is to interpret and describe the meanings of support for parents from the context of being a parent of a child with disability. The data collection is based on narrative interviews with 39 parents (23 mothers and 16 fathers) and nine professionals (seven women and two men) from various areas in the health care system and local authority. A phenomenological hermeneutic method guided the text analyses. The meanings of being a parent of a child affected by disability (study I) have been interpreted as awareness about important values in life. The child has an intrinsic value as a unique person and the parents are striving to do their best for their child. This striving means confronting worries, unsafeness and fear in the care of the child and confronting other persons’ devaluation of the child. Adjusting the parents’ own needs to those of the child and orchestrating the child’s various needs are other meanings. The deepened understanding of the result of the study is that the parents are striving to enable the child a good life. Being supported by professionals (study II) means experiences of the child and oneself as being confirmed as valuable persons. Moreover, it enables parents to gain confidence and competence in their parenthood and hope for the child’s future. Experiences of lack of support give rise to a struggle against the professionals, aimed at getting the support the parents regard as necessary for their own and their child’s needs. The meanings of being a supporter (study III) were interpreted as being and acting according to a personal philosophy, which is integrated in the professional task, and believing that it is always possible to help by searching for unique solutions in the current situation. Trusting the parents as partners and enabling the parents to gain competence and confidence in the care of their children are further meanings. The deepened understanding of being a professional supporter is to be in tune with one’s philosophy and the child’s and parents’ needs. The meanings of informal support (study IV) were interpreted as experiences of being involved in true relationships with other persons. This enables the child and the parents to be in a life enriching togetherness. The interpreted whole of the studies is that being a parent of a child affected by disability means to strive for the fulfilment of the ethical obligation to enable the child to have a good life. To be supported by professionals means receiving help to fulfil the ethical obligation. Being a professional supporter means to be and act in accordance to the unique child and parent and the present situation. Informal support means to be involved in a natural human togetherness.

This thesis is focusing on the lived experience of dementia. Both living with a partner as well as living alone. There is no unequivocal picture of how it is to live with dementia and few studies have been carried out in homes of afflicted persons. A deeper understanding of how it is to live with dementia can be a good starting-point for caring and the organisation of care.    The aim of this thesis is to describe, clarify and explain the lived experience of dementia from a lifeworld theoretical point of view. Another aim is to illuminate how decision makers look upon persons with dementia, their life and their care. Interviews and observations have been used to collect data. Participating informants have been couples with one partner suffering from dementia, persons with dementia living alone, politicians, administrators and social workers. Data was analysed with a phenomenological and a hermeneutical approach.   To live as a couple where one part has dementia (study 1) implies to live in a heteronomous existence where both the person with dementia and the partner become strangers in a world that should be the most well-known and familiar. The couple’s existence is narrowed and controlled by the impact of the dementia disease and the existence  is characterised of hopelessness and homelessness.   To live alone with dementia (study 2) means to live with a broken identity when the person with dementia gradually loses the memory of himself and his life. It becomes a life where the world of the individual is reduced to a quiet background that does not demand attention. The person with dementia does not longer know how he or she should relate to the world. The existence is characterised by a strong sense of loneliness and only a vague knowledge of the situation. The person with dementia longs for other people and gets a sense of boredom in the existence.   The comprehensive interpretation (study 3) shows that life with dementia is characterised by a gradual loss of meaning in life due to a disturbed intentionality. With disturbed intentionality the person with dementia gets increasingly more difficulties in understanding the meaning of the use of everyday objects. The person with dementia fights this and tries to create meaningfulness in the existence – something which gets very difficult and strenuous in time, since even the easiest everyday chores have to be thought through to make sense and even to be accomplished. The effort can in time become overpowering for the person with dementia who then stops doing the chores and becomes passive.   Politicians, administrators and social workers (study 4) are well aware that dementia gives suffering to the afflicted and the partner. The care is not designed to meet their needs for home care, and the decision makers don’t know how to change this. The person with dementia becomes like an object when the social workers don’t includes them in a dialogue about their needs and care. The partner is left alone in solving difficult problems and in making difficult decisions.   The theory of intentionality can help the professionals in the care of persons with dementia. By helping the cared-for-person to ‘stretch the intentional threads’ the caregivers can give the person a possibility to be rooted in the world. A care that supports intentionality and identity and reaches all the way in to the homes of the person with dementia would improve their situation and increase their well-being. This is possible when engaging the person in every-day chores that promote meaning. This kind of care contributes to the possibility for the person with dementia to be rooted in language, time and space.

Supervision has a strong impact on students` professional development. It is during clinical education that students will receive help in linking theory and practice. This study aimed to describe the meaning of good supervision among nursing students in clinical practice. A qualitative design was used. Nine nursing students in western Sweden, who had all experienced good supervision in clinical practice, were interviewed.The interviews were analyzed using a descriptive phenomenological methodology.The meaning of the phenomenon, good supervision in clinical education among nursing students, was shown as the students were gradually piloted to increased responsibility. The students felt secure with their supervisor and the environment in which supervision takes place, and have continuously moments for communication and reflection with their supervisor. A prerequisite is that the supervisor is involved and actively present. Good supervision also means that students have confidence to act independently, and have the opportunity to prepare for new situations. Finally good supervision means that the supervisor shows an understanding attitude to the students` lack of clinical experience. / Handledning har en stark påverkan på studentens professionella utveckling. Det är under den verksamhetsförlagda utbildningen som studenten ska få hjälp att knyta samman teori och praktik. Syftet med studien var att beskriva innebörden av god handledning bland sjuk­- sköterskestudenter i verksamhetsförlagd utbildning. En kvalitativ design användes. Nio sjuksköterske­studenter i västra Sverige intervjuades, som alla hade erfarenhet av god handledning i verksamhetsförlagd utbildning. Intervjuerna analyserades med en deskriptiv fenomenologisk metod. Fenomenet god handledning i verksamhetsförlagd utbildning visade sig som att studenten successivt lotsas till ett ökat ansvar. Studenten kände sig trygg med handledaren och i den miljö där handledningen skedde, och hade kontinuerligt möjlighet till kommunika­tion och reflektion med handledaren som var engagerad och aktivt närvarande. Studenten hade möjlighet att agera självständigt och förbereda sig inför en omvårdnadssituation. Slutligen visade sig god handledning när handledaren visade förståelse för studentens bristande erfarenhet.

The landscape of cancer care is evolving and as a result nursing care continues to develop and respond to the changing needs of oncology patients and their families. There is a paucity of qualitative research examining the experience of being an oncology nurse on an inpatient unit. Therefore, a qualitative study using an interpretive phenomenological approach has been undertaken to discover the lived experience of being an oncology nurse. In-depth tape recorded interviews has been conducted with six oncology nurses who worked on two adult inpatient oncology units. Van Manen’s (1990) interpretive phenomenological approach has been used to analyze the data by subjecting the transcripts to an analysis both line by line and as a whole. The overarching theme of the interviews is: Investing to Make a Difference. The themes that reflect this overarching theme are: Caring for the Whole Person, Being an Advocate, Walking a Fine Line, and Feeling Like You are Part of Something Good. Oncology nurses provide care for their patients through a holistic lens that further enhances how they come to know their patients. Over time, relationships with patients and families develop and these nurses share that balancing the emotional aspects of their work is key in being able to continue to invest in their work and in these relationships. Their investment is further evident as oncology nurses continuously update their knowledge, for example, of treatment regimes, medication protocols, and as they champion their patients wishes and needs. As nurses develop their own identities as oncology nurses, they in turn enhance the team with their emerging skill and knowledge. These research findings serve to acknowledge the meaning of oncology nurses’ work and inform the profession’s understanding of what it means to be an oncology nurse.

Rooted in a critical dialogue that endeavours to theorize experience in contrast to the colonial impetus, this dissertation explores the lived experience of Appalachian Trail thru-hikers. As a result of this disposition, the purpose of this dissertation is to expose the dynamics associated with colonized experiences and empirically research the lived experience of thru-hikers from an ecophenomenological perspective. The subsequent approach views the activities of the lived human body as the process through which the world comes into being. Building on Merleau-Pontian phenomenology, ecophenomenology provides the foundation of the experiential self, and thus underlies the representation of the trail environment as a sensuous field of human activity where one is merged with one's socio-ecological surroundings. Explication of empirical materials from 27 participant interviews resulted in a wide range of thru-hiking experiences representing the operative essence of Appalachian Trail thru-hiking. The operative essence was identified across 4 broad dimensions: Perseity, Sojourning, Kinship, and Wild Imbrication. Each dimension comprised a dialectic which emerged from interview excerpts both congruent with and in contrast to wilderness ideology. Further exploration of wilderness ideals resulted in thru-hikers negotiating tensions related to ideological wilderness meanings and their own actual thru-hiking experiences. This negotiation allowed a broader conception of wilderness to be illustrated as a continuum of meaningful experiences. In addition, ecoliteracy emerged as an experientially driven learning process whereby thru-hikers negotiate alternative meanings of wilderness with ideological meanings. The implications for experiential and wilderness related research along with management concerns are discussed.

According to the Crohn’s and Colitis Foundation of Canada, there is approximately 1 in every 200 individuals who is living with inflammatory bowel disease (IBD). Many of those living with IBD also need to have an ostomy. The literature on the effects IBD and an ostomy has on adolescents and young adults lacks consensus. Therefore, the purpose of this phenomenological study was to try to understand the lived experiences of adolescents and young adults (N=6) living with IBD and an ostomy. Sociodemographic information was collected, and the participants were interviewed in person using a semi-structured interview guide. The work of van Manen (1990) was used as a guide for data collection, analysis and interpretation of this study. Analysis revealed the essence of the adolescents’ and young adults’ lived experience as being “Concealing and Revealing the Self”. Three themes communicate the essence of their lived experience: (a) Uneasy feelings, (b) “It’s hard…”, and (c) A renewed sense of self. The needs of the adolescents and young adults, along with their recommendations to health care providers, are addressed. The study findings inform nurses in the areas of practice, education and research. Practice recommendations include being cognizant that these individuals need holistic care that addresses their psychological, psychosocial and physical needs. This study forms the basis for future research to explore some of the themes in greater detail, as well as a recommendation for a longitudinal study. / February 2008

Rooted in a critical dialogue that endeavours to theorize experience in contrast to the colonial impetus, this dissertation explores the lived experience of Appalachian Trail thru-hikers. As a result of this disposition, the purpose of this dissertation is to expose the dynamics associated with colonized experiences and empirically research the lived experience of thru-hikers from an ecophenomenological perspective. The subsequent approach views the activities of the lived human body as the process through which the world comes into being. Building on Merleau-Pontian phenomenology, ecophenomenology provides the foundation of the experiential self, and thus underlies the representation of the trail environment as a sensuous field of human activity where one is merged with one's socio-ecological surroundings. Explication of empirical materials from 27 participant interviews resulted in a wide range of thru-hiking experiences representing the operative essence of Appalachian Trail thru-hiking. The operative essence was identified across 4 broad dimensions: Perseity, Sojourning, Kinship, and Wild Imbrication. Each dimension comprised a dialectic which emerged from interview excerpts both congruent with and in contrast to wilderness ideology. Further exploration of wilderness ideals resulted in thru-hikers negotiating tensions related to ideological wilderness meanings and their own actual thru-hiking experiences. This negotiation allowed a broader conception of wilderness to be illustrated as a continuum of meaningful experiences. In addition, ecoliteracy emerged as an experientially driven learning process whereby thru-hikers negotiate alternative meanings of wilderness with ideological meanings. The implications for experiential and wilderness related research along with management concerns are discussed.

Att befinna sig i ett terminalt skede i livet kan innebära en känsla av oro och ångest inför sjukdomen och döden. Möjligheten att då få tillbringa sin sista tid i hemmiljö med nära och kära kring sig genererar för många en trygghet. Syftet med denna uppsats är att belysa vuxna människors erfarenheter av att i livets slutskede vårdas av anhöriga i hemmiljö. Metoden som använts är systematisk litteraturstudie där aktuell forskning inom området sammanställts. Databaser som använts för sökningen var PsycINFO, Medline, Cinahl, Elin@kalmar och SweMed+. Artiklar som syftade till problemformuleringen kvalitetsgranskades och resultatet bygger på tio vetenskapliga artiklar. Resultatet visade att sociala relationer och stöd från familjen genererar livskvalitet och trygghet hos människan som vårdas i livets slutskede. Delaktighet i sin vård och känsla av att inte förlora kontrollen över sina symtom gjorde att människan kände hopp och att de klarade av situationen. Slutsatserna var att möjligheten att få bo kvar hemma ansågs mycket betydelsefullt. Sociala relationer bidrog till att människor hemma kände en lägre grad av symtom. Den sjuke uppskattade stödet från familjen men ville inte bli en börda för anhöriga. Information om stöd och en realistisk planering samt insikt i situationens allvar bidrog till att hon kände delaktighet och bättre kunde hantera situationen.

Syfte: Syftet med litteraturstudien var att beskriva brännskadade personers upplevelser av livet efter en brännskada. Bakgrund: En brännskada är ett trauma för både kropp och själ och ett stort lidande för den drabbade. Fysiska förändringar och psykologisk kris gör vägen tillbaka svår. Genom medicinskt kunnande och genom att vara ett medmänskligt stöd har sjuksköterskan en viktig roll under både den fysiska och psykiska läkningsprocessen. Metod: Studien är en allmän litteraturstudie baserad på fem kvalitativa vetenskapliga artiklar samt en självbiografi, publicerade mellan år 2003-2008. Analysen innebar att meningsbärande enheter togs ut och sammanfördes till tre huvudkategorier med tillhörande underkategorier. Resultat: De brännskadade upplevde att livet efter brännskadan innebar stort lidande och gjorde att de inte längre kunde vara självständiga. De upplevde bristande tillit till sin egen kropp vilket ledde till ett försämrat självförtroende. För att kunna gå vidare i livet var det viktigt att finna vägar för att acceptera och hantera det som hänt. Efter hand kunde livet ses positivt och värderas högre. Flera olika faktorer hade stor betydelse för att de skulle kunna känna trygghet i sitt förändrade liv. Slutsats: För att sjuksköterskan ska finnas där som stöd för den brännskadade behövs djupare kunskap inom området, vilket gör att ytterligare forskning är betydelsefull. Kunskapen skulle kunna spridas vidare genom att brännskadade föreläser om sina upplevelser och att de som är insatta i ämnet handleder personal inom hälso- och sjukvård utifrån casemetodik. / Aim: The purpose was to describe how people with burn injuries experience their life after a burn injury. Background: A burn injury is a trauma for both body and soul and a big suffering for the person who is affected. Physical changes and psychological crisis makes it hard to recover. By medical knowledge and through human support nurses have an important role during the physical and psychological healing process. Method: This study is a literature overview, based on five qualitative scientific articles and one biography, published between the years 2003-2008. In the analysis meaning units were identified and brought together into main categories and sub categories. Result: People with burn injuries experiences that life after the injuries meant a great deal of suffering as well as a loss of independence. They experienced lacking trust in their own body, which lead to impaired self-confidence. To be able to move on in life, they had to find ways to accept and deal with what had happened. Several different factors were of importance to make them feel safety in their changed life. Conclusions: For the nurse to be able to be there for people with burn injuries, more knowledge of the subject is needed, which makes further research important. The knowledge could spread by the burn injured holding lectures about his or hers experiences, and by the well-informed tutoring health care staff and students using case methodology.

Patienter som genomgått kirurgi på grund av övre gastrointestinal (GI) cancer drabbas oftast av olika postoperativa besvär som starkt påverkar patientens livssituation. Syftet: Att undersöka hur patienter som opererats för en misstänkt eller diagnostiserad övre GI-cancer upplever den tidiga postoperativa tiden i hemmet innan första återbesöket. Metod: Kvalitativ metod med tolkande fenomenologisk ansats. Tio patienter intervjuades och den transkriberade texten analyserades enligt Interpretative Phenomenological Analysis (IPA). Resultat: Fem överordnade teman framträdde: mat och ätande, kroppsfunktioner, återhämtning, stöd och oro inför framtiden. Informanterna upplevde att de hade en helt ny livssituation att anpassa sig till. Maten och ätandet var ett stort problem som de hade svårt att hantera, likaså var tröttheten dominerande. De flesta upplevde ett gott stöd från sina anhöriga men de saknade stöd från professionen. Informanterna uttalade önskemål om kontinuerlig kontakt med sjukvården som initieras av densamma. Konklusion: Patienter som opererats på grund av övre GI-cancer befinner sig i en mycket sårbar tid i livet och behovet av stöd är av största betydelse. Riktad information till både patient och anhöriga preoperativt, samt kontinuerlig och strukturerad uppföljning av kontaktsjuksköterska och dietist postoperativt behövs för att kunna förbättra livskvaliteten, öka välbefinnandet och samtidigt höja kvaliteten på vården för dessa patienter.