| 1. |
- Olsson, Louise
(author)
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Hopp hos döende patienter med cancer i palliativ hemsjukvård
- 2011
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Licentiate thesis (other academic/artistic)abstract
- Hope is meaningful and very important for people – even for people at the last days of their lives. Health professionals can sometimes describe hope in terms of hope for a cure, which may lead to feelings of hopelessness or empty hope for a patient with an incurable disease. In research, there is very little written about hope in the palliative home care context, even more so from the patient’s perspective. The aim of this project was to study how hope changes over time in cancer patients at the palliative phase, and to study the strategies used to cope with these changes. This was studied from the patients’ own perspective and in a home care context, but with the ambition of developing the results into a model or theory.Grounded Theory was the chosen research approach. Two sets of tape-recorded interviews were made with 11 patients in specialized palliative home care – a total of 20 interviews. The patients were also asked to write diaries about changes in their everyday feelings of hope within a 4-week period. Measurements of hope (HHI-S) and symptoms (ESAS) were also made at three occasions. Constant comparison of data was made during the analysis.The results showed that patients’ hope changed over time. Hope was described as a process involving a glimmering core of hope untouched by external circumstances (Study I). Hope was described in different processes, creation of a convinced hope, creation of simulated hope, collection and maintaining moments of hope and gradually extinct hope. The dying patient’s hope can be described as a gradual and successive adaptation process. Strategies for maintaining life were expressed to preserve the meaning in life, to communicate with others about life and death, to involve "fellow travelers" and to change focus. The strategy of preparing for death involved; taking responsibility for the future and seeing possibilities of living on even after death (Study II). The strategies were parallel to, and dependent on each other. It is important that health professionals understand the patient’s own strategies for maintaining life/hope, as well as the patient’s own preparations for death, so that hope is never taken away despite preparations at the end of life.In summary, hope can be interpreted as a changing process over time – a process that can change quickly, but is based on an inviolable core that is not easily moved by external circumstances. It is important that the health care personnel realize that patients simultaneously prepare for their deaths even as they try to maintain hope. Deeper understanding of what hope can mean for a patient can decrease the risk of hope being taken away during one’s final days.
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| 2. |
- Broström, Magnus, 1969-
(author)
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Äldre människors föreställningar om den egna framtiden, döendet och döden
- 2014
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Doctoral thesis (other academic/artistic)abstract
- Syftet med avhandlingen är att utforska äldre människors föreställningar om och förhållningssätt till den egna framtiden, döendet och döden. Det är ämnen som hittills har fått begränsad uppmärksamhet. En bakomliggande orsak till detta är att äldreforskning och dödsforskning sällan har förenats. Dessutom synliggörs äldres döende och död nästan inte alls i offentlig debatt, trots att ålderdomen är den fas i livet då döden normalt inträffar. Studien bygger på kvalitativa intervjuer med 27 äldre kvinnor och män i åldrarna 70–91 år, vilka alla bodde i ordinärt boende och betraktade sig själva som relativt friska. Genomförande, analys och tolkning av intervjuerna har utgått från ett livsloppsperspektiv, där både en abduktiv och en hermeneutisk ansats tillämpades. I analys och tolkning framkom kontrasterande mönster i de intervjuades funderingar på den egna framtiden och döden, i deras samtal med någon om döden, i deras erfarenheter av döende och död, och i vad de trodde hände efter döden. Resultaten visar också att funderingar och agerande inför en krympande framtid utgjorde centrala inslag i de äldres vardag och att de intervjuade laborerade med olika tidshorisonter. Ett annat resultat handlar vad som är rätt tidpunkt i livet för att fundera på döden, samtala med andra om döden, för att planera inför döden och för ett ”efter döden”. Det är en komplex bild av äldres föreställningar om den egna framtiden, döendet och döden som framkommit, där teman som åldersmönster, ett förlängt livslopp, ansvar, kontroll och värdighet är centrala inslag. Avhandlingens resultat kan bidra till en bättre förståelse för äldre människors situation i ljuset av en krympande framtid, döende och död.
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| 3. |
- Claeson, Lisbeth, 1946-
(author)
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Tid och existentiellt meningsskapande : Kvinnors berättelser om sitt liv med allvarlig sjukdom
- 2010
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Doctoral thesis (other academic/artistic)abstract
- Being affected by a serious or life-threatening illness implies an existentially changed situation that is accompanied by a number of questions about the illness itself, consequences of the illness in an everyday context and implications for the future. The purpose of this dissertation is to examine people’s meaning-making when they are affected by a serious illness and to determine how the illness acquires meaning in the context of their lives. The dissertation thus deals with what can be referred to as existential meaning-making. A hermeneutical approach was adopted, drawing more specifically on Paul Ricoeur’s narrative theory that emphasises the importance of different dimensions of time and memory in the understanding of narratives. An empirical study was carried out of illness narratives collected in research interviews with six women who had been diagnosed with serious illnesses, such as cancer, stroke and heart attack. The analysis reveals that the discovery of the illness and the period following was characterized by chaos and a lack of time perspective, feelings of lack of freedom and thoughts about death, but also feelings of responsibility towards the family. Experiences of the health services were also important in accounts of this early period, particularly wishes for more empathic encounters with the professionals. In the women’s accounts of the long term living with the illness, death continues to emerge as a back drop to their everyday experiences of the illness, but gradually more as confronting the problem of death rather than giving up life. Over time, relationships to significant others and the importance of everyday life also constitute increasingly important themes. In their expectations for the future, the women account for some experiences that have been important in creating a sense of hope and heightened vitality, and thus a new ‘wholeness’, such as being close to nature as well as their religious or spiritual experiences. These results are discussed in terms of how memories of significant events or places play an important role in existential meaning-making, and also how reflections on these memories can be seen as a process of existential ‘learning’.
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| 4. |
- Forssell, Emilia
(author)
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Skyddandets förnuft : en studie om anhöriga till hjälpbehövande äldre som invandrat sent i livet
- 2004
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Doctoral thesis (other academic/artistic)abstract
- This dissertation aims to examine and deepen the knowledge of family member caregiving where the care recipient is an elderly person who immigrated late in life. It also aims to contribute to the knowledge of the complexities underlying informal care giving and add to our understandings of what it means to be an immigrant in Sweden. The caregiver is in focus. The research conducted is explorative and partly inductive. The main material used is a qualitative interview study carried out with family members from different countries who are providing informal care to elderly immigrant relatives. The analysis gives three patterns of caregiving. One shows help from informal caregivers only who are not compensated economically. Another shows help from family members who are compensated. The third shows help from family members and staff from the public care system. Three ideal-typical informal caregiver roles show different positions vis-à-vis the new: “guardian”, “filter” and “reinterpreter of traditional care ideals”. Swedish born and immigrated informal caregivers are also compared through analysis of data gathered in telephone interviews with a representative selection of inhabitants in the County of Stockholm.A philosophy of action together with theory on integration and multiculturalism serves as theoretical frameworks to understand discrepancies and ambiguities in the data. Young immigrants experience different integration processes than do the older ones. They strive to protect older family members from changes linked to the migration experience. Talk about dependence on culture underlines family feelings and legitimates the processes of protection. Preconceptions about great differences between Swedish born and immigrant families are not supported by quantitative data. A conclusion is that protection can be understood in relation both to the traditional and the new, the latter in the forms of meetings with Swedish society where unequal relations prevail. It is a kind of counter-strategy where the range of actions is diminished, and thus it has its own logic. Protection can be loosened up when the circumstances change and the range of actions grow.
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| 5. |
- Strandberg, Thomas, 1965-
(author)
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Vuxna med förvärvad traumatisk hjärnskada - omställningsprocesser och konsekvenser i vardagslivet : en studie av femton personers upplevelser och erfarenheter av att leva med förvärvad traumatisk hjärnskada
- 2006
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Doctoral thesis (other academic/artistic)abstract
- The overall purpose of this study is to illuminate the changeover process experienced by individuals who as adults acquired a traumatic brain injury (TBI), to increase the knowledge and the understanding of this process, and describe the meaning of support in every day life.Persons who acquired a TBI as adults were administered a semi-structured interview covering six areas: consequences of TBI, family and social networks, working life and occupation, life-changes, support from society and everyday life. The interviews were qualitative and in-depth. A total of 15 informants participated, aged between 19-53 years when injured. Data were structured and underwent two phases of analysis. In the first phase, data underwent latent content analysis, underpinned by a hermeneutic approach, and in the subsequent phase, reanalysed within a framework derived from the theory of social recognition.Findings from the first phase of inductive analysis elicited key themes: (i) the meaning of care, a question of formal and/or informal support; (ii) the meaning of action, a question of activity versus inactivity; (iii) autonomy, a question of dependence versus independence; (iv) social interaction, a question of encounter and/or treatment; (v) the theme of changes, a question of process versus stagnation; and (vi) emotions, an oscillation between hope versus hopelessness. After the construction of the six themes each of them were, through a discursive analysis, connected with theories, earlier studies in the field of brain injuries and important interview quotations from the empirical material. During this phase, an interest developed to study the material from a new theoretical point of view. The second phase of analysis therefore involved the development of a framework derived from Honneth’s (1995) theory of social recognition. The central construct of ‘recognition’ was analysed from three different dimensions proposed by Honneth: the individual dimension, the legal dimension, the value dimension. Using this framework, the data were reanalysed. The scientific term for this process of re-contextualisation and re-description of data is abduction inference.Reported consequences were negative as well as positive. Significant others (e.g. next of kin) had an important function as a driving force for training and preparation for life-situation after injury. A majority of the informants were satisfied with support from society, such as hospital-care, rehabilitation and community support. Such support, initially, proceeded without problems but as time passed, the responsibility shifted to the person with TBI to take the initiative in arranging longer-term services. Long-term support which addresses physical, cognitive as well as psychosocial consequences of the TBI is important for outcomes. The majority of the informants had difficulties in returning to working life after the injury. The outcomes and recovery seemed to be a prolonged process, probably never ending, but which gradually over time becomes integrated as a part of life. The informants gave varying accounts of the extent to which they experienced social recognition.
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| 6. |
- Taghizadeh Larsson, Annika, 1961-
(author)
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Att åldras med funktionshinder : Betydelser av socialt och kronologiskt åldrande för människor som under lång tid levt med fysiska funktionsnedsättningar
- 2009
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Doctoral thesis (other academic/artistic)abstract
- Ålderns och åldrandets betydelser för människor som under lång tid har levt med fysiska funktionsnedsättningar har hittills fått begränsad uppmärksamhet såväl i forskning som i andra sammanhang. Samtidigt pekar såväl åldersgränser i det offentliga stödsystemet som tidigare forskning mot att ålder och åldrande kan få speciella innebörder för människor som lever med funktionshinder. Syftet med den här avhandlingen är att tolka innebörder av åldersnormer och upplevd ålder för människor som i dagens Sverige befinner sig i de kronologiska åldrarna kring 65 med fysiska funktionsnedsättningar som funnits med under minst 30 år. Med åldersnormer avses ”enhetliga uppfattningar om de ’typiska’ åldrar då man innehar vissa roller under livsloppet”. Subjektiv ålder syftar på ”hur gammal man känner sig”. Åldrarna kring 65 har valt därför att det är en del av livsloppet då ålder, åldrande och åldersnormer kan förväntas få särskilt stor betydelse.En intervjustudie med 20 personer i åldrarna 56-72 har genomförts. Planeringen, genomförandet och analysen av intervjuerna har utgått från ett livsloppsperspektiv.Tolkningen av de intervjuades utsagor visar bland annat hur människor kan anamma ”äldrenormer” som ofta beskrivs som negativa i andra sammanhang på ett sätt som resulterar i något för individen positivt. Till skillnad från befintliga teorier om hälso- och funktionstillståndets betydelse för människors subjektiva ålder pekar studien också mot att det kan finnas en rad olika möjligheter att känna sig ung eller ”inte gammal” med funktionsnedsättningar och sjukdomar. Mot bakgrund av intervjupersonernas beskrivningar av sina dagliga liv framstår det därtill inte som orimligt att en ålderspensionär med omfattande funktionsnedsättningar med hjälp av ett individuellt anpassat stöd och hjälpmedel kan tillägna sig ett modernt och fritidsaktivt pensionärsideal på ett sätt som får som konsekvens att hon utformar sitt liv på ett ”tredje-ålder-likt” sätt. Ålder och åldrande framträder emellertid inte som betydelsefullt för alla aspekter av de intervjuades liv med funktionshinder. Särskilt inte för hur vissa förändringar av det egna funktionstillståndet upplevs.
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| 7. |
- Torgé, Cristina Joy
(author)
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Ageing and Caring as Couples with Disabilities
- 2014
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Doctoral thesis (other academic/artistic)abstract
- In gerontology and care research, care is often studied in ways in which older people and people with disabilities are portrayed as dependent on the care of younger or non-disabled people. This thesis, in contrast, studies care provided by people that are both old and have physical disabilities. The thesis explores how care is actualized and experienced by older couples who both have long-term or lifelong disabilities, and investigates the implications of this caring in the couples’ lives. Nine couples between 60 and 84 years old, of whom most had had disabilities for over 20 years, were interviewed as dyads; a process also conjoint interviewing. These interviews were analysed using grounded theory methods of coding and constant comparison. The results of the thesis confirm that it can make sense to be a carer even if one also needs care in everyday life. The analysis considers how conjoint interviewing resulted in relational and performative data about mutual care. The study helps explain the significance helping a partner despite having other sources of formal support and the difficulties of providing this help oneself. Finally, in a study whose participants are growing old together with disabilities, the results also show that the couples could regard themselves as ageing advantageously compared to other groups. Through its focus on caring for and by older people with disabilities, this thesis is at the intersection of social gerontology, care research and disability studies. However, from its interdisciplinary perspective, it can also challenge established discourses in these fields. Specifically, the study problematizes the absence of a care discourse in disability studies and the mostly age- and function-coded ways in which care is discussed in care research. The thesis problematizes dichotomies used in understanding care, such as roles of carers/care receiver and caring/servicing. It also challenges established ways of thinking about successful ageing. Lastly, the thesis contributes to the still growing literature on ageing with a disability.
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| 8. |
- Karlsson-G, Sofie
(author)
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Tillsammans men var för sig : Om särboenderelationer mellan äldre kvinnor och män i Sverige
- 2006
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Doctoral thesis (other academic/artistic)abstract
- Contemporary family life and intimate relationships today are characterised by increasing heterogeneity. In the growing body of research on this differentiation, the role of the elderly people has largely been ignored. But to an increasing extent the "young old" (65-74 years of age), in particular, are active participants in the process of the differentiation of intimate relationships. One of the least researched contributions of the elderly to the restructuring of contemporary intimate relationships is the establishment of lastint intimate relationships that do not include a mutual home, i.e. an alternative to marriage or other forms of cohabition. This type of relationship is referred to as Living Apart Together (henceforth LAT-relationships. In Swedish: särboende). The aim of this thesis is to examine LAT-relationships among elderly heterosexual individuals in Sweden, focusing in particular on the influence of this type of relationship on commitments, intimacy and autonomy. A major dilemma is the question of who should provide the care and service that ageing often demands. A pluralistic methodological approach has been adopted in the four differnt papers in this thesis, whick includes the use of a qualitative pilot study, a broad quantitative questionnaire study, a qualitative interview study and finally a qualitative study with a lifestory perspective.
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| 9. |
- Schön, Ulla-Karin, 1970-
(author)
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Kvinnors och mäns återhämtning från psykisk ohälsa
- 2009
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Doctoral thesis (other academic/artistic)abstract
- The overall aim with this thesis is to describe and analyze women’s and men’s recovery processes. More specifically, the aim is to determine what women and men with experience of mental illness describe as contributing to the personal recovery process. The point of departure for the studies was 30 in-depth interviews conducted with 15 men and 15 women. The selection of interview subjects was limited to individuals who had been treated in 24-hour psychiatric care and diagnosed as having schizophrenia, psychosis, a personality disorder, or a bipolar disorder. Four studies have been carried. Study 1 was a baseline article that examined what people in recovery from mental illness outline as facilitating factors to their recovery. The results that emerged from that study indicated areas for further analysis to condense the understanding of the recovery process. In study 2 the similarities and the differences in recovery described by women and men were examined. In Study 3 women’s and men’s meaning-making with reference to severe mental illness facilitate the recovery process were studied. The forth study explored how peer-support contribute to women’s and men’s recovery from mental illness. The results emphasize recovery from mental illness as a social process in which relationships play a key role in creating new identities beside the mental illness. For a majority of the participants meeting peers facilitated the recovery process. The participants described how peer support meant an end to isolation and became an arena for identification, connection, and being important to others. Throughout these recovery processes the impact of gender has been emphasized. The results from this thesis provide new insight into gender as an important factor in understanding the recovery processes. The results from the four studies emphasize the mental patient, the psychiatric interventions and the individual recovery strategies as being influenced by gender constructions.
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| 10. |
- Whitaker, Anna
(author)
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Livets sista boning : Anhörigskap, åldrande och död på sjukhem
- 2004
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Doctoral thesis (other academic/artistic)abstract
- This thesis is based on an empirical study carried out as a case study at a nursing home ward in the region of Stockholm. The aim of this study is to describe and analyse the conditions of ageing and dying for the old persons living in a nursing home, as well as for their relatives. Different methods were used: participant observations, informal conversations with the elderly residents, with the staff and with visiting relatives. Furthermore, twenty-one (in-depth) interviews with eighteen relatives were also conducted. From the results it became clear that the two major features embedded in the overall experience of the nursing home setting were: a sense of waiting and the presence of dying and death. For the residents a major part of daily life was marked by their dependency on others and on their bodily decline. It is argued that the institutional features contribute to reinforcing the images/pictures of bodily decline. As such, the nursing home also had a significant impact on the experiences of the relatives. The compact environment of frailty and death could arouse feelings of anxiety and worries among the relatives about their own ageing and death. Analyses of the data based on the interviews with relatives indicated a number of central patterns: accompanying each other, understanding the old person’s health and needs, recreating roles, sharing the care and preparing for dying and death. These also form the theoretical structure of the thesis. A finding of the study was that the relationship between the old person and the relative underwent important changes. Not only the placement in itself but also the poor health of the old person contributed to this change. As a consequence new roles emerged within the relationship, as well as with the staff. Many relatives continued to visit and also contributed to the care even though this care work could vary and mostly was quite limited in both content and extent. One group among the relatives not only visited, but they truly shared the old person’s daily life. It was found that relatives, irrespective of the caring role, try to guard and maintain the identity and dignity of the old person. Based on an analysis of the different themes/processes found in the data, four core categories emerged: time, space, body and dignity. They all constitute the existential condition that affects the lives of the old persons and their relatives in an institutional setting. They also embrace the complexity and contradictions that characterise the data. Therefore, in the concluding chapter, the spatial and temporal contradictions of the nursing home are discussed. Another issue concerned the bodily themes found in the data and how these illuminate the diverse meanings and the, sometimes, contradictory images of the body. These themes led to the conclusion that it is not death, but the bodily disintegration and unboundedness that the old persons and their relatives fear most. Finally, it is argued that the “light care work” carried out by the relatives is so much more than sporadic visits. Instead, these visits can be seen as 1) rituals contributing to a sense of continuity and coherence, 2) representations of the relationships and 3) a way in which relatives can maintain and guard the old person’s identity and dignity.
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