Background and Aims: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) remains a poorly understood condition, shrouded in uncertainty and dispute. Research suggests this context to have a profound bearing on those touched by the condition, impacting significantly on their experience and the narratives constructed thereof. However, no studies examining the narratives of partners of individuals affected by CFS/ME appear to have been carried out to date. Based upon this gap in the literature, this study sought to hear the narratives of partners of adults living with CFS/ME, giving particular consideration to the ways in which these narratives were told to an outsider, and how the outsider may have influenced the narrative. Methodology: This study drew on a qualitative approach. A purposive sample of six partners of adults affected by CFS/ME (4 men and 2 women) was recruited. Individual interviews were conducted that were audio-recorded and transcribed. Narrative analysis was used to analyse the transcripts, focusing principally on how participants narrated their accounts, as well as on the content of narratives and the narrative and discursive features that shaped the telling of the accounts. Analysis and Findings: Multiple readings of the narratives identified two areas of collective focus within participants' accounts - 'stories from then' and 'stories from now'. Some similarities in how 'stories from now' were told were seen to emerge down gender lines. Notably participants' storytelling could be seen to represent a form of response to wider narratives that purvey around CFS/ME, with participants' being observed to construct particular meanings around CFS/ME, as well as particular 'identities' of themselves, their partner, their relationship and 'others' who had played a key role in their story of living with the condition. The findings are discussed in terms of their potential bearing for clinical practice and future research endeavours. In addition, the strengths and the limitations of the research are considered.

京都大学 / 0048 / 新制・課程博士 / 博士(理学) / 甲第21544号 / 理博第4451号 / 新制||理||1639(附属図書館) / 京都大学大学院理学研究科数学・数理解析専攻 / (主査)准教授 星 裕一郎, 教授 向井 茂, 教授 望月 新一 / 学位規則第4条第1項該当 / Doctor of Science / Kyoto University / DGAM

Bakgrund: Befolkningen i världen förväntas att öka och bli allt äldre i framtiden, särskilt gruppen över 65 år. Denna demografiska förändring ställer höga krav på vårdens resurser. Skörhet, som kännetecknas av minskade fysiologiska resurser och ökad sårbarhet, spelar en viktig roll i denna fördelning. Internationellt har screeningprogram för att upptäcka skörhet hos äldre införts. Clinical Frailty Scale (CFS) har blivit ett ledande instrument för att bedöma skörhet hos äldre och har implementerats som ett gemensamt verktyg i sydvästra Sverige. Syfte: Syftet med studien var att beskriva distriktssköterskors erfarenheter av att skörhetsskatta äldre personer inom primärvård och kommunal hälso- och sjukvård. Metod: Data samlades in genom semistrukturerade intervjuer med nio distriktssköterskor. Insamlade data transkriberades och analyserades enligt Burnards innehållsanalys (2008). Resultat: Analysen utmynnande i tre kategorisystem; “Individanpassad vård ”, “Faktorer som inverkar” och “Distriktssköterskans roll” med innehållande kategorier. I individanpassad vård framgick en enighet bland distriktssköterskor om CFS användbarhet för ökad kännedom om äldre patienters hälsotillstånd. I Faktorer som inverkar skildras aspekter som samverkan, tid som aspekt och följsamheten till CFS. I Distriktssköterskans roll beskrivs betydelsen av kompetensutveckling, utbildning och kunskap i det dagliga arbetet. Slutsats: Studien visar att ett teambaserat tillvägagångssätt och användningen av CFS-bedömningar är av betydelse för att kunna erbjuda individanpassad vård. Distriktssköterskor kan spela en central roll i att potentiellt förbättra vården för sköra äldre personer genom att använda CFS för att erbjuda adekvat stöd.

Bakgrund: Intensivvården tillhandahåller avancerade och invasiva behandlingar till kritiskt sjuka patienter varav en del är sköra. Skörhet kan kvantifieras med Clinical Frailty Scale (CFS) och kopplas till mortalitet, komplikationer och förlängd återhämtning. Patienter som återinskrivs till IVA inom 72h löper större risk för komplikationer och död. I nuläget saknas verktyg för sjuksköterskor för att identifiera patienter som är i riskzonen för återinskrivning till intensivvårdsavdelning (IVA) inom 72h.Syfte: Att undersöka om det finns ett samband mellan patienters skörhet enligt Clinical Frailty Scale och återinskrivning till IVA inom 72h.Metod: Retrospektiv single-center kohortstudie med 118 patienter (kontrollgrupp n=60) på en IVA i Sverige mellan åren 2021 och 2022. Analys med kortsabulering, korrelation och logistisk regression samt Mann Whitney U Test.Resultat: I denna studie kunde inget signifikant samband mellan återinskrivning till IVA och CFS poäng konstateras. Det fanns däremot ett starkt samband mellan behandlingsbegränsningar och CFS i kontrollgruppen.Slutsats: CFS kan inte användas för att förutse återinskrivning till IVA inom 72h. Studiens design begränsar möjligheten att generalisera resultat.Intensivvårdssjuksköterskor bör fortsätta använda sig av helhetsbedömning och sin kliniska blick för en patientsäker vård. / <p>2023-05-29</p>

Assessment of diffuse brain disorders, where the brain may appear normal, has proven difficult to translate into personalized treatments. Previous methods based on brain magnetic resonance imaging (MRI) resting state blood oxygen level dependent (rs-BOLD) signal routinely rely on group analysis where large data sets are assessed using region-of interest (ROI) or probabilistic independent component analysis (PICA) to identify temporal synchrony or desynchrony among regions of the brain. Brain connectivity occurs in a complex, multilevel and multi-temporal manner, driving the fluctuations observed in local oxygen demand. These fluctuations have previously been characterized as fractal, as they auto-correlate at different time scales. In this study we propose a model-free complexity analysis based on the fractal dimension of the rs-BOLD signal, acquired with MRI. The fractal dimension can be interpreted as a measure of signal complexity and connectivity. Previous studies have suggested that reduction in signal complexity can be associated with disease. Therefore, we hypothesized that a detectable differences in rs-BOLD signal complexity could be observed between patients with diffuse or heterogeneous brain disorders and healthy controls. In this study, we obtained anatomical and functional data from patients with brain disorders where traditional methods have been insufficient to fully assess the condition. More specifically, we tested our method on mild traumatic brain injury, autism spectrum disorder, chemotherapy-induced cognitive impairment and chronic fatigue syndrome patients. Three major databases from the Neuroimaging Informatics Tools and Resources Clearinghouse (NITRC) project were used to acquire large numbers of age matched healthy controls. Healthy control data was downloaded from the the Autism Brain Imaging Data Exchange (ABIDE), the Alzheimer's Disease Neuroimaging Initiative (ADNI) and the Human Connectome Project specifically matching our experimental design. In all of our studies, the voxel-wise rs-BOLD signal fractal dimension was calculated following a procedure described by Eke and Herman et al. 2000. This method was previously used to assess brain rs-BOLD signal in small mammals and humans. The method consists of estimating the Hurst exponent in the frequency domain using a power spectral density approach and refining the estimation in the time domain with de-trended fluctuation analysis and signal summation conversion methods. Voxel-wise fractal dimension (FD) was then calculated for every subject in the control and patient groups to create ROI-based Z-scores for each individual patient. Voxel-wise validation of FD normality across controls was studied and non-Gaussian voxels, determined using kurtosis and skewness calculations, were eliminated from subsequent analysis. To maintain a 95 % confidence level, only regions where Z-score values were at least 2 standard deviations away from the mean were included in the analysis. In the case of chronic fatigue patients and chemotherapy induced cognitive impairment, DTI analysis was added to also determine whether white matter abnormalities were also relevent. Similar Z-score analysis on DTI metrics was also performed. Brain microscopic networks, modeled as complex systems, become affected in diffuse brain disorders. Z-scoring of the fractal rs-BOLD frequency domain delineated patient-specific regional brain anomalies which correlated with patient-specific symptoms. This technique can be used alone, or in combination with DTI Z-scoring, to characterize a single patient without any need for group analysis, making it ideal for personalized diagnostics. / Thesis / Doctor of Philosophy (PhD)

Bakgrund: Myalgisk encefalomyelit/kroniskt trötthetssyndrom är en neurologisk och kronisk sjukdom utan botemedel. Sjukdomen påverkar kroppens muskler, hjärnan och ryggmärg. Sjukdomen medför symtom som orsakar smärta samt känslor av otillräckighet och avsaknad av meningsfullhet. Detta resulterar i att de drabbade inte längre kan leva som tidigare, vilken kan påverka livskvaliteten. Då denna sjukdom inte har något medicinskt botemedel är omvårdnad en viktig del av behandlingen. Det är också av vikt att sjuksköterskan, den primära vårdgivaren, innehar kompetens och kunskap om ME/CFS för att bidra till en personcentrerad vård. En personcentrerad vård innebär att sjuksköterskan tar hänsyn till patientens individuella behov och förutsättningar, att bemöta denna patiengrupp med förståelse bidrar till en förbättrad livskvalitet för patienterna. Syfte: Att belysa patienters upplevelser av olika aspekter som påverkar livskvaliteten vid ME/CFS. Metod: En litteraturstudie som har analyserat vetenskapliga artiklar med kvalitativ metod. Studien var inspirerad av Fribergs metasyntes, Fribergs analysmetod och skriven med en induktiv ansats. Artikelsökningarna har genomförts i databaserna PubMed och CINAHL. Kvalitetsgranskningen av artiklarna resulterade i tolv artiklar som användes till resultatet. Resultat: Studien resulterade i tre huvudkategorier med fem underkategorier som kunde svara på syften om vilka aspekter som påverkade livskvaliteten. Den första huvudkategorin blev hälsorelaterade aspekter som påverkar livskvaliteten vid ME/CFS med underrubrikerna upplevelser av fysiska aspekter som påverkar livskvaliteten vid ME/CFS och upplevelser av psykiska aspekter som påverkar livskvaliteten vid ME/CFS. Den andra huvudkategorin blev socioekonomiska aspekter som påverkar livskvaliteten vid ME/CFS med underrubrikerna upplevelser av kunskap och missförstånd i mötet med vården vid ME/CFS, upplevleser av ekonomiska aspekter som påverkar livskvaliteten vid ME/CFS och upplevelser av sociala relationer vid ME/CFS. Den tredje huvudkategorin blev miljöaspekter som påverkar livskvaliteten vid ME/CFS. Slutsats: Studien visade att patienterna upplevde flera faktorer som påverkade livskvalitet och i de flesta fall till det sämre. Patienterna upplevde det svårt att anpassas till den nya livssituationen samt att kunskapsbristen hos både hälsosjukvårdsperonal och samhället var en stor faktor till den försämrade livskvaliteten. Den personcentrerade vården fallerar många gånger och den grundutbildade sjuksköterskan och annan vårdpersonal är i stort behov av att öka kompetensen kring sjukdomen. Detta för att kunna bidra till en bättre vård samt lindra lidandet för patienterna.

Background: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is a complex disease with unknown cause. It affects about 0.4 percent of the population. It is a chronic disease that manifests itself in an impairment fatigue that is impaired by physical exertion. Purpose: The purpose of the study was to illustrate how people diagnosed with ME/CFS experience the primary care treatment. Method: An empirical questionnaire with mixed method was used. Most questionnaires were quantitative, and one question was qualitative. Result: ME patients may wait several years and meet several doctors before they get their diagnosis. The result showed that most respondents felt that they did not receive good treatment in primary care. Conclusion: People with ME/CFS want to be treated with respect and want primary care to listen and take them seriously. In a partnership between the primary care and healthcare personnel, they could meet more equally, and the ME sufferers would not have to wait several years to meet several doctors before receiving the assistance and support they need in their illness. Clinical significance: New research on how healthcare professionals can help people with ME/CFS is needed. Research would also be needed on how the role of nurse could be extended to be a key part of primary care for people with ME/CFS.

Background: By the year 2030 the prognosis is that one fourth of the Swedish population will be 65 years or older. An age group that today stands for 40 percent of all the daily visits in the Swedish emergency departments. Nearly half of them are 80 years or older. The frail older adults are often low prioritized due to their diffuse symptoms whereby long waiting times and healthcare-related injuries may occur. As a complement to the standard prioritizing procedure, that triage stands for, some emergency departments have introduced screening tools for detecting those individuals that are older adults and frail. Unfortunately, the introduction of new guidelines, do not always imply that the implementation comes easy because there are factors that facilitate and inhibit their intended use. Aim: To illustrate factors that affect the nurses use of the screening tool Clinical Frailty Scale (CFS) which identifies frailty in elders during triage in the emergency department. Method: A descriptive quantitative cross-sectional study where data was collected through a web-based questionnaire. The data of the study was analyzed through descriptive and analytical statistics. Results: When it came to influencing factors regarding the use of CFS in the selected emergency department, CFS as a method with its practicalities constituted as facilitators, whilst the organizational and working cultural aspects constituted as barriers. The differences in the nurses' experience and education effected the perception of CFS in different ways. Conclusion: There is a need of a working culture where responsibility is shared between stakeholders to facilitate a guideline. Advanced nurse practitioners can have a crucial role in educating, motivating and creating space for discussion relating to organizational, theoretical and practical components of the process in identifying the frail older adults. / Bakgrund: Prognosen är att år 2030 kommer en fjärdedel av den svenska populationen vara 65 år eller äldre. Åldersgruppen utgör idag cirka 40 procent av alla besök på Sveriges akutmottagningar där nästan hälften av dem är 80 år eller äldre. De sköra äldre erhåller ofta låg prioritering på grund av sina diffusa symtom, där långa väntetider och vårdrelaterade skador kan uppstå som följd. Som komplement i den vanliga prioriteringsrutinen som triagering innebär har akutmottagningar infört screeningverktyg för att upptäcka de individer som är sköra äldre. Dessvärre innebär införandet av nya rutiner att de inte alltid lätt implementeras i verksamheten eftersom det finns faktorer som främjar och hindrar dess avsedda användning. Syfte: Att belysa faktorer som påverkar sjuksköterskors användning av screeningverktyget Clinical Frailty Scale (CFS) för att identifiera sköra äldre vid triagering på akutmottagningen. Metod: En kvantitativ tvärsnittsstudie där data samlades in genom en webbenkät. Studiens data analyserades deskriptivt samt med analytisk statistisk. Resultat: När det kom till faktorer som påverkade användningen av CFS på den valda akutmottagningen utgjorde CFS som metod med dess praktiska delar en främjande faktor, medan organisatoriska och arbetskulturella aspekter utgjorde hindrande faktorer. Skillnaderna i erfarenhet och utbildning hos sjuksköterskorna påverkade uppfattningen om CFS på olika sätt. Slutsats: Det behövs en arbetskultur med ett delat ansvar mellan organisation och medarbetare för att främja följsamheten till en rutin. Specialistsjuksköterskor kan ha en betydande roll i att utbilda, motivera och skapa forum för diskussion gällande organisatoriska, teoretiska och praktiska delar i processen av att identifiera sköra äldre.

This study examined the knowledge and perceptions of the Latino population in Southern California towards Children Protective Services (CPS). Modern representation of social workers from the Department of Children and Family Services (DCFS), or Child Protective Services (CPS) often do not complement, support, or value the profession. This is a quantitative study with a sample of 103 Hispanic/Latino individuals ranging from the ages of 18 to over 60. An online Qualtrics survey was disseminated through social media and in person. It included a total of 26 questions measuring knowledge and perceptions. The purpose of this study was to better understand the Latino population as it relates to CPS, and create positive changes in the Latino communities CPS serves, with the hope to bring awareness and better service delivery.

This research is the exploration of the lived experience of tertiary students in Australia with the medical condition usually known as ME/CFS (Myalgic Encephalomyelitis /Chronic Fatigue Syndrome) seeking to explore issues of equity and human rights from the perspective of the Disability Discrimination Act 1992. Students feel that their difficulties are not caused just by the illness itself but by the failure of the tertiary institutions to understand the effects of this illness on them, the student, especially within the areas of accommodations and assessments. Their lived experiences are studied to ascertain if their experiences differ from those of other tertiary students. Forty participants came from every state and territory of Australia and twenty -four of Australia's universities as well as eight Technical and Further Education/Open Training Education Network (TAFE/OTEN) colleges are represented. The selection of the chosen methodology, Critical Ethnography from a Habermasian perspective, has been circumscribed by the medical condition which placed limitations on methodology and also data gathering methods. Non-structured stories, in which the participants wrote of their lived experience as students, were considered the most appropriate source of data. These were transmitted by electronic mail (with some by postal mail) to the researcher. A short questionnaire provided a participant background to the stories and was also collated for a composite overview of the participants. The stories are analysed in a number of ways: six selected stories are retold and the issues arising from these stories have been weighed against the remainder of the stories. Four intertwined themes were constructed from the issues raised in each story. Apparent infringements of the Disability Discrimination Act (1992) which impact on quality of life, human rights and equity are found. No accommodations are being made by the academic institutions for the cognitive dysfunctions and learning difficulties. Students are stigmatised and lack credibility to negotiate appropriate academic accommodations. A possible means of improving the ability of students to negotiate appropriate accommodations is explored. Finally the researcher reflects on her own involvement in the research as an 'insider' researcher.