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Multipel skleros är en autoimmun sjukdom som genom en inflammatorisk process bryter ner myelinet runt nerverna i centrala nervsystemet och leder till ärrbildning på nerverna. Sjukdomen utvecklas under många år och leder till olika grad av funktionsnedsättningar. Den drabbar kvinnor oftare än män och är vanligare i Nordamerika och norra Europa än i världen övrigt. Syftet med litteraturstudien var att studera hur personer med multipel skleros upplever att sjukdomen påverkar livskvaliteten. Metoden för litteraturstudien inspirerades av Goodmans sju steg för litteratursökning. Sökningen efter artiklar gjordes i Pubmed och Cinahl. Trettioen artiklar granskades och detta ledde till att tio artiklar inkluderades i resultatet. Av de tio artiklar som inkluderades i studien var åtta av kvantitativ art och två av kvalitativ. Resultatet visar att livskvaliteten påverkas av symtom relaterade till multipel skleros, av inre och yttre hinder samt av bekymmer till följd av olika symtom på sjukdomen. Slutsatser Personer med multipel skleros upplever att sjukdomen påverkar de fysiska, psykiska, sociala och existentiella aspekterna av deras livskvalitet. För att kunna hjälpa denna patientgrupp till bättre upplevd livskvalitet måste sjuksköterskan skapa en relation med personen och verkligen förstå hur denne upplever att livskvaliteten påverkas av sjukdomen. För att bättre kunna förstå hur denna patientgrupp upplever att deras sjukdom påverkar livskvaliteten behövs mera kvalitativ forskning på detta område. / Multiple sclerosis is autoimmune disease that which, through an inflammatory process, breaks down the myelin surrounding the nerves in the central nervous system leading to the buildup of scar tissue around the nerves. This disease develops over many years and leads to different types of disabilities. It effects women more often than men and is more common in North America and Northern Europe than in the rest of the world. The aim of this study was to examine how people with multiple sclerosis experience that the disease affects their quality of life. The method for this study was inspired by Goodman’s seven steps for literature search. The search for the articles was done in Pubmed and Cinahl. Thirty one articles were examined and this led to ten articles being included in the result. Of these ten articles that were included in the result eight were quantitative and two were qualitative. The results show that the quality of life is affected by symptoms relating to multiple sclerosis, by inner and outer barriers and by worries that are caused by different symptoms of the disease. Conclusions People with multiple sclerosis experience that the disease affects the physical, psychological, social and existential aspects of their quality of life. To be able to help this group of patients experience better quality of life the nurse must form a relationship with the person and truly understand how their quality of life is affected by the disease. To be able to better understand how this patient group experiences how the disease affects their quality of life there is a need for more qualitative research in this field.

The aim of this study was to examine if the leaving of an abuse could be understood as a process, that incorporates both psychological and sociological parts. We collected our data through a qualitative method of reading autobiographies. The selection of materials was based on the autobiographies that dealt with substance abuse issues, where the selection was delimited to the autobiographies where the individuals had had an alcohol, drug or gambling abuse. The chosen material was written in Swedish, by the addict and after the individual had come out of their abuse. The reading of the material was based on a number of reading questions based on the study’s questions. Following the patterns we found from the reading, we formed a division of our results where eight themes were identified that seemed to play an important role when leaving an abuse: questioning, unsuccessful attempts, insight, turning point, a struggle, important help, new self and awareness. Our result was then analyzed against both psychological and sociological research to give different explanatory models of what we saw in the material. The psychologically oriented research talked about how an individual leaves addiction and how, for example, cognitive changes and turning points are central parts. The sociologically oriented research consisted of a theoretical explanation model about how an individual makes a role exit when, for example, he leaves an abuse where social factors such as environmental impact plays an important role. One of the study’s conclusions was that leaving an abuse could be understood as a process. Another conclusion was that the eight different steps of the process could include both sociological and psychological parts. Thus, through our study, we distinguished that leaving an abuse was not only influenced by one or the other approach, but that studies that illuminate and merge both psychological and sociological perspectives are needed. The study also shows the importance of bringing these two directions together in order to reach a full understanding of what the individual undergoes during his or her journey from an abuse.

This thesis aims to highlight the relevance of patients engaging with their patient narratives as a tool in recovery from illness and in regaining their sense of agency. / This thesis aims to rename the term ‘illness narrative’ to a more disclosive writing called the ‘patient narrative’ as a means to focus on the patient as a person who experiences illness, instead of the illness label. Exploring patient narratives, such as Susannah Cahalan’s Brain on Fire: My Month of Madness, as a form of disclosive writing will highlight the need for this tool to act as a more personal and effective communication between patients, healthcare professionals, and caregivers. The thesis is presented in two parts: a critical essay and my patient narrative. Part One is a critical essay that explores how engaging with patient narratives contributes to the patient reclaiming their agency and sense of identity. In three subsections, the essay highlights the difficulties patients go through with illnesses or rare medical events, as well as the emotional and physical impacts that they experience, going beyond medical symptoms. The essay focuses on three points separated into three sections. The sections are: Recognizing Pathologies and Injuries, Communication and Language in the Patient Experience, and Reclaiming Agency. Part Two is my autopathography centring on the complications encountered while seeking a common surgery. After general anaesthesia, I develop Postoperative Cognitive Changes of unknown aetiology. This greatly complicates the situation when surgery is needed, and the ensuing cognitive impairments have lasting impacts on me academically, personally, emotionally, and socially. While both parts are distinct, together they mirror how patient narratives have the iv potential to bridge the communication gap between medicine and humanities. As such, patient narratives can communicate connections between patients, medical communities, and a broader audience which acts to underscore the need of a deeper awareness for the importance of compassion and empathy for those experiencing any form of health challenge. / Thesis / Master of Arts (MA) / Patient narratives are a form of expressive writing that enables the patient to regain their sense of identity and agency following a health illness. When a person first becomes a patient, they leave their known world of familiarity and comfort and enter into a new one on their health journey. Their language and ways of communicating are required to adapt to the world of medicine. The patient loses their sense of identity and agency as a result of their illness. This thesis is presented in two parts, a critical essay and my brief patient memoir, and will explore how the patient, when engaging with patient narratives such as Susannah Cahalan’s Brain on Fire: My Month of Madness, can reclaim their agency and sense of identity. The first part is an essay exploring the contributions of patient narratives. The second part is my memoir, exemplifying a patient narrative.

Abstract There are multiple factors simultaneously affecting speech perception in elderly people. These factors include hearing acuity, aging of the auditory system, and changes in both perception and cognitive processes, all of which can interfere with speech comprehension, especially in cognitively demanding situations. The aim of this study is to clarify which factors influence the use of an automatic phone service system designed for elderly (N = 36) people. More specifically, the aim is to investigate whether it is the factors connected to the system itself or the factors connected to the elderly users and their actions with the system that are the most crucial for using the system successfully. Both quantitative and qualitative methods are used in the study. There were four people who performed as speakers in the system. Analysis of the prosodic features of their speech was performed using acoustic analysis software. The variables connected to the elderly participants (n = 30) were investigated using interviews, pure-tone and speech audiometric tests, the Mini-Mental State Examination test (MMSE), and the Token Test for speech comprehension. Statistical analyses were used to explore whether there was a statistical connection between the acoustic measurements or the variables connected to participants themselves and their performance in usability test situation. In addition, the elderly participants’ actions in the test situation were observed using a material-based, qualitative video-analysis. The individuals who performed as speakers in the system were observed to use features of elderspeak in their speech. However, these speaker characteristics had little effect on the participants’ performance in the tasks. It was the voice-menu that contained the most semantically complex text structure that proved to be the most difficult for participants. Both low scores in the Token test and poor word recognition were connected to poor performance in the tasks. It was found based on the qualitative analysis that in addition to speech comprehension, there were other cognitive processes that were important for completing the tasks successfully, i.e. remembering the instructions given (memory), and the ability to direct, divide and maintain attention during the tasks. Poor performance in the tasks and in the Token Test, as well as problems in executive functions observed in the test situation, were found to be factors predicting dropping out of the next phase of the study the following year. Qualitative analysis of language use in cognitively demanding situations can be used in evaluation of high-level language performance. It may be useful for detecting mild changes in language skills that can be symptomatic of early stages of memory disorders. The results of this study can also be utilized when designing voice-based interfaces. In addition, it is important to consider both advantages and disadvantages of using elderspeak in the fields of nursing and speech therapy. / Tiivistelmä Ikääntyvien ihmisten puheen vastaanotossa vaikuttavat samanaikaisesti monet tekijät: kuulokyky, auditiivisen järjestelmän ikääntymismuutokset sekä havaintotoimintojen ja kognitiivisten toimintojen muutokset. Nämä voivat vaikeuttaa puheen ymmärtämistä erityisesti kognitiivisesti vaativassa tilanteessa. Tämän tutkimuksen tavoitteena on selvittää ikääntyneille osallistujille (N = 36) suunnitellun automaattisen puhelinpalvelujärjestelmän käyttöön liittyviä tekijöitä. Tavoitteena on selvittää se, missä määrin toisaalta kokeiltuun järjestelmään liittyvät tekijät ja toisaalta käyttäjien ominaisuudet sekä heidän toimintansa tutkimustilanteessa olivat yhteydessä järjestelmän menestykselliseen käyttöön. Tutkimuksessa käytetään kvantitatiivisia ja kvalitatiivisia menetelmiä. Järjestelmässä kokeiltiin neljän eri puhujan äänillä nauhoitettuja toimintaohjeita. Heidän puheensa prosodisia piirteitä analysoitiin äänen ja puheen analyysiohjelmilla. Ikääntyneisiin osallistujiin (n = 30) liittyviä muuttujia tutkittiin haastattelulla, kuulon tutkimuksilla (äänesaudiometria ja puheaudiometria), kognitiivisella seulontatestillä (Mini-mental state examination = MMSE) ja puheen ymmärtämistä mittaavalla Token-testillä. Mittaustulosten ja muuttujien yhteyttä tehtävistä suoriutumiseen tarkasteltiin tilastollisesti. Osallistujien toimintaa havainnoitiin järjestelmän käyttötilanteessa aineistolähtöisellä laadullisella videoanalyysillä. Järjestelmän puhujilla havaittiin ikääntyneille suunnatun puheen piirteitä. Tehtävistä suoriutuminen oli kuitenkin hyvin samanlaista puhujasta riippumatta. Semanttisesti monimutkaisin tekstivalikko oli osallistujille vaikein äänite. Matala Token-testin pistemäärä ja heikko puheen tunnistuskyky liittyivät heikkoon tehtävistä suoriutumiseen. Laadullisen analyysin perusteella puheen ymmärtämisen ohella keskeisiä kognitiivisia prosesseja tehtävissä menestymisen kannalta olivat seuraavat: ohjeiden muistaminen, huomion suuntaaminen, jakaminen ja ylläpito. Heikko suoriutuminen tehtävissä ja Token-testissä sekä tutkimustilanteessa havaitut toiminnan ohjauksen ongelmat ennustivat toisesta tutkimusvaiheesta poisjääntiä seuraavana vuonna. Kognitiivisesti vaativista kielen käyttötilanteista tehtävillä laadullisilla analyyseilla voidaan arvioida monimutkaisia kielellis-kognitiivisia toimintoja ja löytää mahdollisesti alkaviin muistisairauksiin liittyviä lieviä kielellisiä muutoksia. Tuloksia voidaan hyödyntää ääneen perustuvien käyttöliittymien suunnittelussa. Ikääntyneille suunnatun puheen etuja ja haittoja on tärkeää pohtia myös hoitotyön ja puheterapian näkökulmasta.