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  • 1
    Online Resource
    Online Resource
    Det Kgl. Bibliotek/Royal Danish Library ; 2022
    In:  Tidsskrift for Forskning i Sygdom og Samfund Vol. 19, No. 36 ( 2022-06-25), p. 39-57
    In: Tidsskrift for Forskning i Sygdom og Samfund, Det Kgl. Bibliotek/Royal Danish Library, Vol. 19, No. 36 ( 2022-06-25), p. 39-57
    Abstract: Med indførslen af sundhed.dk har borgere i Danmark fået digital adgang til deres egne helbredsoplysninger såsom test- og screeningsvar, journalnotater osv. Den stigende trans- parens i sundhedsvæsenet påstås at fremme medinddragelse og mulighed for at engagere sig i eget helbred. I denne artikel fokuserer vi derfor på, hvad der sker i praksis, når forskellige mennesker tilgår deres helbredsoplysninger på sundhed.dk. Sammensat af to etnografiske studier og et interviewstudie viser vi, hvordan testsvar for deltagerne er svære at forstå, og hvordan abnorme testsvar, selv uden klinisk betydning, skaber bekymring og angst – også længe efter at svaret er givet og en eventuel behandling ovre. Med udgangspunkt i en teoretisk diskussion af hvordan det postmoderne informationssamfund beror på troen på oplysning, argumenterer vi for, at målet om at skabe mere tryghed gennem adgang til egen helbredsjournal, faktisk for nogle i stedet kan skabe utryghed, og ligefrem skade den enkelte, det vi kalder informationens ironi. Ved at bruge dette begreb diskuterer vi, hvordan di- gitale helbredsjournaler som sundhed.dk ikke i sig selv fremmer demokratiske rettigheder som inddragelse og adgang til egne data, men ligefrem kan skade. Vi argumenterer derfor for, at digitale helbredsinitiativer også underlægges en etisk afvejning af gavn og skade.
    Type of Medium: Online Resource
    ISSN: 1904-7975 , 1604-3405
    Language: Unknown
    Publisher: Det Kgl. Bibliotek/Royal Danish Library
    Publication Date: 2022
    detail.hit.zdb_id: 2649795-5
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  • 2
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2022
    In:  Journal of Patient-Reported Outcomes Vol. 6, No. 1 ( 2022-12)
    In: Journal of Patient-Reported Outcomes, Springer Science and Business Media LLC, Vol. 6, No. 1 ( 2022-12)
    Abstract: Multimorbidity is both an individual and societal problem. For society, patients with multimorbidity increase healthcare costs. For the individual, living with multimorbidity is complex, and there is an inverse relationship between a patient's Quality of Life (QoL) and their number of chronic conditions. Numerous intervention studies target these problems, yet there is no multimorbidity-specific patient-reported outcome measure (PROM) developed specifically for this group with adequate measurement properties to assess QoL. This study explores what overall needs regarding QoL are affected by living with multimorbidity through qualitative interviews. With this, we conceptualise Needs-based QoL specifically for this group, ensuring high content validity (regarding relevance and comprehensiveness) of using the Needs-based approach to measure their QoL. This is essential as this preliminary study leads to the development of the MultiMorbidity Questionnaire (MMQ), a PROM measuring QoL among patients with multimorbidity. Methods This study draws upon qualitative interviews with fifteen patients with multimorbidity based on a semi-structured interview guide following the Needs-based approach. This approach allowed the patients to cover needs relevant for their QoL in relation to the complexities of living with multimorbidity. The transcribed interviews were thematically analysed, inspired by Braun and Clarke’s reflexive approach. Results Analysis of the interviews resulted in the construction of six intertwined domains relevant to patients with multimorbidity, covering their Needs-based QoL; “Physical ability”, “Self-determination”, “Security”, “Partner and social life”, “Self-image”, and “Personal finances”. “Physical limitations” and “Personal finances” were stated as core needs implicating the other domains. Conclusion This study shows six intertwined overall domains relevant for patients with multimorbidity regarding their Needs-based QoL; “Physical ability”, “Self-determination”, “Security”, “Partner and social life”, “Self-image”, and “Personal finances”. These needs are relevant in a Danish context, with a generally high standard of living. Based on this conceptual framework of Need-based QoL for patients with multimorbidity, we will develop items for a new patient-reported outcome measure called the MMQ.
    Type of Medium: Online Resource
    ISSN: 2509-8020
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 2906081-3
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  • 3
    In: Journal of Patient-Reported Outcomes, Springer Science and Business Media LLC, Vol. 7, No. 1 ( 2023-09-18)
    Abstract: Multimorbidity is a burden for the individual and to the healthcare sector worldwide, leading to a rising number of intervention studies towards this patient group. To measure a possible effect of such interventions, an adequate patient-reported outcome measure (PROM) is essential. The aim of this study was to assess the draft MultiMorbidity Questionnaire (MMQ), a PROM measuring needs-based quality of life and self-perceived inequity in patients with multimorbidity, for its psychometric properties and to adjust it accordingly to create a content- and construct valid measure. Methods The draft MMQ was sent to 1198 eligible respondents with multimorbidity. Modern test theory and classical test theory were used to analyse data. Dimensionality of the suggested domains and invariance of the items were assessed through item analysis, examining the fit to a psychometric model. Results The psychometric analyses were based on responses from 390 patients with multimorbidity. In the MMQ1, measuring needs-based QoL, evidence of six unidimensional scales was confirmed: physical ability (6 items), worries (6 items), limitations in everyday life (10 items), my social life (6 items), self-image (6 items), and personal finances (3 items). The psychometric analyses of the MMQ2 outlined four unidimensional scales measuring the feeling of Self-perceived inequity in patients with multimorbidity: experiences of being stigmatised (4–5 items), Experiences of insufficient understanding of the burden of disease (3 items), Experiences of not being seen and heard (4 items), Experience of powerlessness (5 items). These scales are relevant for patients’ with multimorbidity encounters with (1) their general pratitioner, (2) staff at their general practitioner’s surgery, (3) healthcare professionals, (4) staff at the local authorities and (5) friends, family, and others. Conclusion The MMQ, a QoL measure for patients living with multimorbidity has been validated: the MMQ1 is a condition-specific PROM with adequate psychometric properties designed to measure needs-based QoL. The MMQ2 measuring Self-perceived inequity, has also been found to possess adequate measurement properties; however due to the risk of type 2 error a revalidation of MMQ2 is suggested.
    Type of Medium: Online Resource
    ISSN: 2509-8020
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2023
    detail.hit.zdb_id: 2906081-3
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  • 4
    Online Resource
    Online Resource
    SAGE Publications ; 2019
    In:  Qualitative Inquiry Vol. 25, No. 9-10 ( 2019-11), p. 956-964
    In: Qualitative Inquiry, SAGE Publications, Vol. 25, No. 9-10 ( 2019-11), p. 956-964
    Abstract: In this article, I argue that ethnodramatic monologue is a valuable method for producing knowledge complementary to current research on living with chronic diseases. Inspired by discussions on ethnographic representations, I present the monologue of an older woman with chronic diseases. The monologue has been performed for a live audience, and several future performances are also booked; however, this article is an experiment on the textual presentation of a theatrical monologue. The protagonist’s voice is based on three interlocutors from my doctoral anthropological fieldwork, which was conducted among older people with chronic diseases in rural Denmark. Drawing on earlier training as a method actor, I consolidated notes, interviews, and observations to create a piece of art displaying my research. This article thus blends social sciences and the arts, building on the tradition of ethnographic theater.
    Type of Medium: Online Resource
    ISSN: 1077-8004 , 1552-7565
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2019
    detail.hit.zdb_id: 2029972-2
    SSG: 3,4
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  • 5
    In: BMJ Open, BMJ, Vol. 13, No. 5 ( 2023-05), p. e069974-
    Abstract: The number of people living with visual impairment is increasing. Visual impairment causes loss in quality of life and reduce self-care abilities. The burden of disease is heavy for people experiencing visual impairment and their relatives. The severity and progression of age-related eye diseases are dependent on the time of detection and treatment options, making timely access to healthcare critical in reducing visual impairment. General practice plays a key role in public health by managing preventive healthcare, diagnostics and treatment of chronic conditions. General practitioners (GPs) coordinate services from other healthcare professionals. More involvement of the primary sector could potentially be valuable in detecting visual impairment. Methods We apply the Medical Research Council framework for complex interventions to develop a primary care intervention with the GP as a key actor, aimed at identifying and coordinating care for patients with low vision. The development process will engage patients, relatives and relevant health professional stakeholders. We will pilot test the feasibility of the intervention in a real-world general practice setting. The intervention model will be developed through a participatory approach using qualitative and creative methods such as graphical facilitation. We aim to explore the potentials and limitations of general practice in relation to detection of preventable vision loss. Ethics and dissemination Ethics approval is obtained from local authority and the study meets the requirements from the Declaration of Helsinki. Dissemination is undertaken through research papers and to the broader public through podcasts and patient organisations.
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    Language: English
    Publisher: BMJ
    Publication Date: 2023
    detail.hit.zdb_id: 2599832-8
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  • 6
    Online Resource
    Online Resource
    Wiley ; 2017
    In:  Anthropology News Vol. 58, No. 3 ( 2017-05)
    In: Anthropology News, Wiley, Vol. 58, No. 3 ( 2017-05)
    Type of Medium: Online Resource
    ISSN: 1541-6151 , 1556-3502
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2017
    detail.hit.zdb_id: 2212985-6
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  • 7
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2020
    In:  International Journal of Mental Health Systems Vol. 14, No. 1 ( 2020-12)
    In: International Journal of Mental Health Systems, Springer Science and Business Media LLC, Vol. 14, No. 1 ( 2020-12)
    Abstract: Patients with severe mental illness (SMI) have shorter life expectancy than people without SMI, mainly due to overmortality from physical diseases. They are treated by professionals in three different health and social care sectors with sparse collaboration between them, hampering coherent treatment. Previous studies have shown difficulties involved in establishing such collaboration. As the preparatory phase of an intervention to improve physical health of people with SMI and increase collaboration across sector borders, we explored different actors’ experiences of barriers for collaboration. Method We collected qualitative data from patients, professionals in general practice, psychiatry and social psychiatry involved in the treatment of these patients. Data consisted of notes from meetings and observations, interviews, focus groups and workshops. Analysis was by Interpretative Phenomenological Analysis. Results The study revealed many obstacles to collaboration and coherent treatment, including the consultation structures in general practice, sectors being subject to different legislation, and incompatible IT systems. Professionals in general practice and social psychiatry felt that they were left with the responsibility for actions taken by hospital psychiatry without opportunity to discuss their concerns with psychiatrists. There were also cultural differences between health care and social psychiatry, expressed in ideology and language. Social psychiatry had an existential approach to recovery, whereas the views of health professionals were linked to symptom control and based on outcomes. Meanwhile, patients were left in limbo between these separate ideologies with no leadership in place to promote dialogue and integrate treatments between the sectors. Conclusion Many obstacles to integrated trans-sectoral treatment of patients with SMI seem related to a lack of an overriding leadership and organizational support to establish collaboration and remove barriers related to legislation and IT. However, professional and ideological barriers also contribute. Psychiatry does not consider general practice to be part of the treatment team although general practitioners are left with responsibility for decisions taken in psychiatry; and different ideologies and treatment principles in psychiatry and municipal social psychiatry hamper the dialogue between them. There is a need to rethink the organization to avoid that the three sectors live autonomous lives with different cultures and lack of collaboration.
    Type of Medium: Online Resource
    ISSN: 1752-4458
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2020
    detail.hit.zdb_id: 2382266-1
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  • 8
    Online Resource
    Online Resource
    Wiley ; 2023
    In:  Ethos Vol. 51, No. 3 ( 2023-09), p. 237-254
    In: Ethos, Wiley, Vol. 51, No. 3 ( 2023-09), p. 237-254
    Abstract: In this article, we examine the subjective experiences of people who, according to their education level and income, belong to the lowest social classes—indicators that are commonly associated with poor health behaviors and poor health status. Drawing on 18 months of fieldwork among white, working‐class people in Denmark, we draw attention to the negative stereotypes connected to health inequities and how people attempt to navigate and mitigate perceived bias. We draw particular attention to the proposed concept of tuning , which we identify as acts intended to mitigate practitioner bias and secure higher esteem and adequate care by differentiating oneself from stereotypes. Ultimately, we aim to contribute to more nuanced conversations on health inequity and how it is conceptualized and acted upon by individuals through the concept of tuning.
    Type of Medium: Online Resource
    ISSN: 0091-2131 , 1548-1352
    URL: Issue
    Language: English
    Publisher: Wiley
    Publication Date: 2023
    detail.hit.zdb_id: 2097742-6
    SSG: 0
    SSG: 5,1
    SSG: 5,2
    SSG: 10
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  • 9
    In: Patient Related Outcome Measures, Informa UK Limited, Vol. Volume 14 ( 2023-10), p. 269-282
    Type of Medium: Online Resource
    ISSN: 1179-271X
    Language: English
    Publisher: Informa UK Limited
    Publication Date: 2023
    detail.hit.zdb_id: 2586660-6
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  • 10
    Online Resource
    Online Resource
    SAGE Publications ; 2022
    In:  Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine
    In: Health: An Interdisciplinary Journal for the Social Study of Health, Illness and Medicine, SAGE Publications
    Abstract: Through anthropological fieldwork among people with severe mental health disorders, this article focuses on these service users’ interactions and relations with the professionals and with other service users at recovery-oriented housing facilities in Denmark. We discuss how recovery-oriented spaces designed for the service users may feel out of reach to them, hence making the service users feel awkward and reluctant to participate. The study shows how service users, initially recognized as “unengaged,” rather are to be understood as active actors involved in their recovery and forming social bonds. The research seeks to put forward new perspectives on recovery as a concept in psychosocial rehabilitation, arguing that recovery and healing may take up different forms in different spaces and that recognizing services users’ enactment of reluctancy and disengagements could serve as an important part of recovery work in rehabilitation.
    Type of Medium: Online Resource
    ISSN: 1363-4593 , 1461-7196
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2022
    detail.hit.zdb_id: 2034459-4
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