Publikationer från Umeå universitet
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    Between ideals and reality : District nurses’ experiences of working in a person-centered way within disability service

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    Bakgrund: Sverige har en stark lagstiftning med betoning på jämlik vård samt patientens rätt till delaktighet. Trots detta har personer med en funktionsnedsättning sämre tillgång till vård och en sämre hälsa. Detta ses både i Sverige och ur ett globalt perspektiv. Personcentrerad vård har blivit ett centralt begrepp inom hälso- och sjukvård och möjliggör inflytande och delaktighet i den egna vården.  Motiv: Distriktssköterskan bör arbeta personcentrerat inom funktionshinderomsorgen, det finns dock begränsad forskning om hur detta arbetssätt tillämpas.  Syfte: Syftet med studien var att beskriva distriktssköterskors erfarenheter av att arbeta personcentrerat inom funktionshinderomsorgen.  Metod: I studien användes kvalitativ metod. Semistrukturerade intervjuer med distriktssköterskor, analyserades med tematisk analys, användes för att identifiera och analysera meningsfulla mönster i deras erfarenheter.   Resultat: Intervjuerna resulterade i fyra huvudteman: Brukaren i centrum, Relationen inom personcentrerad vård, Organisatoriska förutsättningar samt När olika kompetenser möts-teamsamarbete och samsyn i vården. Distriktssköterskor beskriver personcentrerad vård som självklar och grundläggande i funktionshinderomsorgen. Delaktighet möjliggörs av relation, tillit och individanpassad kommunikation, men är inte jämlikt fördelad: brukare med komplexa behov riskerar att reduceras till passiva mottagare. Organisatoriska hinder, begränsande resurser försvårar arbetet. Nätverket kring brukaren anses viktigt, men brukarens egen röst får inte överskuggas av anhöriga eller boendepersonal. Konklusion: För att möjliggöra det personcentrerade idealet behövs kontinuitet, tid och interprofessionellt samarbete, distriktssköterskan behöver också ett rationellt och reflekterande förhållningssätt. Personcentrerad vård behöver förstås som ett förhållningssätt för att möjliggöra en jämlik, kvalitativ och etisk hållbar vård. Fortsatt forskning bör belysa hur personer med funktionsnedsättningar själva upplever delaktighet och hur personcentrerad vård kan utvecklas för att stärka deras inflytande och därmed möjliggöra jämlik vård.

    Calendar time trends in synchronous metastatic urinary bladder cancer before and after the introduction of immune checkpoint inhibitors : a nation-wide population-based cohort study

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    Introduction:  For the 3-5% of patients diagnosed with urinary bladder cancer presenting with distant metastases, the five-year survival probability remains below 10% (1–3). Since the late 1980s, platinum-based combination chemotherapy has been the cornerstone of treatment for metastatic urinary bladder cancer (mUBC) (4, 5). For cisplatin-ineligible patients, carboplatin-gemcitabine was established as an alternative in 2011 (6, 7), and is currently used as first-line chemotherapy in approximately half of the patients treated systemically for mUBC (8). However, platinum-based regimens are associated with a high incidence of serious adverse events (5, 7). Consequently, a substantial proportion of patients with mUBC do not receive any systemic chemotherapy (9). Vinflunine was approved in Europe in 2009 as second-line chemotherapy, though with limited clinical benefit (10, 11). A new era in the systemic treatment of mUBC was marked by the approval of immune checkpoint inhibitors (ICI) 2017 (12, 13). ICIs demonstrated not only an improved overall survival but also a more favorable toxicity profile. Recent population-based studies have reported improved survival among systemically treated patients with mUBC following the introduction of ICI (14). Given the historically low uptake of systemic therapy in the real-world setting of mUBC, it remains unclear whether the introduction of immune checkpoint inhibitors (ICI) has translated into improved survival at the population level. As the treatment landscape for mUBC continues to evolve rapidly, benchmarking treatment patterns and survival outcomes in real-world populations is essential to guide clinical practice and policy. We used the Bladder Cancer Data Base Sweden (BladderBase) 2.0 (15) to investigate survival trends among patients diagnosed with synchronous mUBC between 1997 and 2019 across calendar periods defined by the introduction of novel systemic therapies. We hypothesized that survival in the overall mUBC population improved after the introduction of ICI (2017–2019), due to both the availably of a novel treatment option and an increased proportion of patients eligible for systemic treatment due to ICIs favorable toxicity profile

    Health-enhancing physical activity induce beneficial skeletal muscle mitochondrial adaptations in individuals with rheumatoid arthritis

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    Objective: Rheumatoid arthritis (RA) is a common chronic systemic inflammatory disease that causes musculoskeletal impairments and fatigue. Physical activity is recommended for individuals with RA, and health-enhancing physical activity (HEPA) has been shown to improve health perception and physical fitness in this group. However, the molecular adaptations of skeletal muscle in response to an exercise intervention are still unexplored in individuals with RA. This study aimed to assess the skeletal muscle response to a 2-year HEPA intervention in individuals with RA. Methods: Thirteen individuals with RA (65 ± 2 years old, 13 ± 2 years disease duration) participated. The 2-year HEPA intervention involved 150 min of weekly moderately intense aerobic activity and twice-weekly circuit training. Practical and theoretical physiotherapist support was available the first year, but not the second year. Skeletal muscle biopsies, functional assessments, and mass spectrometry-based proteomics analysis were conducted. Results: Compliance was high the first year but dropped significantly the second year. Functional improvements in strength, endurance, and lower extremity muscle function (TST) were observed after year 1. Proteomics analysis revealed significant enrichment of mitochondrial proteins including COX8A, citrate synthase, M2OM, NDUFA6, NDUFS2, and VDAC3 after year 1, indicating positive muscle adaptations. However, these changes regressed to baseline levels by year 2. Conclusion: HEPA can induce beneficial mitochondrial adaptations in skeletal muscle of individuals with RA. However, insufficient compliance and progression in HEPA exercise load led to a reversal of these adaptations. Continuous support and motivation are crucial for maintaining and progressing exercise levels and muscle health in individuals with RA. (Table presented.

    The role of siblings and family environment in the development of anti-immigrant attitudes in adolescence

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    Family as the main socialization environment involves mainly parents and siblings. The importance of parents for attitudinal development in adolescence is well-researched. Theoretically, other family members like siblings are also expected to play a role in attitudinal formation. Still, and primarily due to data limitations, siblings are rarely accounted for in empirical studies. In this study, we examine the role of siblings in the development of anti-immigrant attitudes in adolescence (10–17 years), with a particular focus on how sibling effects vary depending on family environment. Using three waves of data from the Czech Household Panel Survey (2016–2018), and mixed multilevel repeated measurement models, we find that siblings’ attitudes towards immigrants are related over time. Moderation effects show that younger siblings are particularly influential under less optimal family conditions. More specifically, we find that younger siblings’ anti-immigrant attitudes influence their older siblings primarily when the family economy is strained and when parents rarely engage in political discussions with their children. Older siblings on the other hand affect their younger siblings’ anti-immigrant attitudes to a similar extent regardless of the family environment

    Ultra-hypofractionated radiotherapy with focal boost for high-risk localized prostate cancer (HYPO-RT-PC-boost) : in silico evaluation with histological reference

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    BACKGROUND AND PURPOSE: The study aims to evaluate dosimetric properties of hypofractionated treatment plans integrating focal boost, using registered whole-mount histopathology (WMHP) as reference standard. METHODS: Fifteen men from the PAMP trial (EudraCT: 2015-005046-55) were included. Participants had ≥ 1 ISUP Grade group ≥ 4 lesion and underwent [68Ga]prostate-specific membrane antigen (PSMA) positron emission tomography/multiparametric magnetic resonance imaging (PET/mpMRI) and [11C]Acetate-PET/computed tomography before radical prostatectomy. Four radiation oncologists delineated gross tumor volumes (GTVs) on PSMA-PET/mpMRI. Sixty treatment plans were optimized, one per GTV and patient. Prostate planning target volumes were prescribed 42.7 Gy in seven fractions, with a simultaneous GTV boost up to 49.0 Gy, prioritizing organs at risk (OARs). Digital WMHP provided Gleason grading and was co-registered with in-vivo imaging. Target coverage for GTVs and voxels sharing Gleason patterns (GPs) was assessed via dose-volume histogram (DVH) analysis. Interobserver agreement in GTV-delineations was quantified with Fleiss' kappa. RESULTS: The median GTV dose per plan (D50) ranged from 48.3 to 49.1 Gy. For voxels with the highest GP, D50 was 42.9-49.2 Gy, exceeding 47.2 Gy in all except one plan. In lowest pattern voxels, D50 was 42.5-49.3 Gy, and below 43.4 Gy in over half the plans. Significant positive correlations between Fleiss' kappa and DVH parameters appeared only for GP 5 regions, specifically for Fleiss' kappa and D50 for two observers and the average D50 across observers. INTERPRETATION: The histologically confirmed tumor was only partially boosted. Regions with more aggressive disease received better coverage. These findings provide a rational for prioritizing OARs in treatment planning

    Placental intervillous blood harbors NK cells with distinct tissue-resident characteristics

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    The placental intervillous space is a unique immunological niche where circulating maternal immune cells come into direct contact with the fetal syncytiotrophoblast. While adaptations in immune cell composition are known to occur in the maternal decidua throughout pregnancy, it remains unclear whether similar changes take place in the intervillous space. Here, we demonstrate that the intervillous immune cell composition undergoes dynamic changes during pregnancy, with a decreased proportion of NK cells and an increased proportion of T cells from second trimester to term pregnancy. Interestingly, second-trimester intervillous NK cells were predominantly CD56brightCD16- with high expression of CD49a, CD103, and CD69. This phenotype more closely resembled tissue-resident decidual NK (dNK) cells than peripheral NK cells. Conditioned medium from fetal villous tissue did not induce changes in peripheral NK cell phenotype, suggesting that the observed phenotypic alterations are not driven by soluble factors from the villous microenvironment. Analysis of predicted ligand-receptor complexes suggested that NK cells may provide important growth signals to the syncytiotrophoblast. In conclusion, immunological adaptations occur in the intervillous space throughout pregnancy and the presence of dNK-like cells in the intervillous space underscores a potential role for these cells in maintaining a balanced immune environment at the maternal-fetal interface

    Lull : designing crip pacing technologies for rest

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    Energy limiting conditions (ELC), such as long COVID and ME/CFS, require the careful monitoring and pacing of activity and rest to avoid over-exertion. Commercially available fitness tracking technologies are currently being “misused” to manage these conditions. Based on co-design research with people with ELC, we conducted a research-through-design process to ideate upon what ELC pacing technologies could be. Our ongoing design process is informed by crip theories that highlight the social and political, rather than medical, aspects of disability and chronic conditions. In an attempt to offer non-medicalising pacing technologies, we explored integrating bronze casting as a jewelry making technique within the prototyping process. We also explore how we can present quantitative pacing data gathered from wearable sensors through felt vibrations on the body in a way that can be therapeutic and allow for the user to calibrate the quantitative data with their own felt sense of fatigu

    Hybrid human policy modeling : enhancing decision-making using social simulations

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    Healthcare policy making is complex, requiring both human expertise and data-driven support. Agent-based Social Simulations (ABSS) provide a powerful tool for testing the potential consequences of healthcare policy interventions in a controlled environment. By integrating computational modeling with expert knowledge, ABSS enable hybrid-human policy collaborations, where simulation results support human decision-making. This approach facilitates policy refinement and scenario analysis through participatory modeling, leading to more adaptive and socially sustainable policies. We argue that ABSS enhances decision-making by complementing simulation-based insights with qualitative expertise, enabling more sustainable and evidence-based healthcare policies

    Exploring body image awareness with a large language model–based conversational agent : qualitative study with young adults

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    Background: Body image plays a crucial role in both physical and mental health, influencing self-esteem, eating behaviors, and psychological well-being. Young adults are particularly vulnerable to body dissatisfaction, defined as negative thoughts or feelings about one’s appearance. The benefits of positive body image, characterized by body appreciation and acceptance, are widely recognized, but few digital interventions are designed to support it for young adults. Objective: We designed a conversational artificial intelligence (AI) agent integrating biomedical information on eating disorders and the principles of cognitive behavioral therapy to enable open-domain conversations on body image. The study explores young adults’ strategies to maintain a positive body image without the agent, the characteristics of conversations with the agent, and the advantages and drawbacks of having a conversation for body image concerns. Methods: A qualitative study consisting of in-depth interviews with young adults was conducted among 15 young adults (aged 20-30 years) who used the AI agent in their homes for a 1-week period. Data comprise preinterviews exploring young adults’ maintenance of body image without the AI agent, text-based conversations with an AI agent (n=933 messages), and postinterviews on the perceived impact of conversations on body image awareness. Interview transcripts were analyzed through thematic analysis. Content analysis was applied to analyze the conversations with the AI agent. Results: Young adults’ body image awareness was connected to self-acceptance, confidence, and valuing body functionality. Participants used several strategies to maintain body image without the AI agent, ranging from social support networks to exercise and positive self-talk. The conversations with the AI agent were categorized into (1) body image awareness, (2) body image–related eating and behavioral regulation, (3) body-focused mindfulness, and (4) social conversation with the agent. Three themes of perceived advantages and drawbacks regarding the conversations with the agent were identified as (1) facilitating body image awareness and self-reflection, (2) availability of conversational support, and (3) discontinuities in user engagement. Conclusions: Young adults’ body image awareness is closely linked to self-acceptance and self-appreciation. In this context, the AI agent was perceived as an available, accessible, and nonjudgmental conversational support in raising body image awareness through self-reflection and self-compassion. Challenges remain in sustaining long-term user engagement, which address the need for multidimensional personalization of the agent

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    Publikationer från Umeå universitet
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