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- Dervish, Jessica, et al.
(författare)
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Disclosing or concealing multiple sclerosis in the workplace : two sides of the same coin-insights from a Swedish population-based survey
- 2024
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Ingår i: Frontiers In Public Health. - : Frontiers Media S.A.. - 2296-2565. ; 12
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Tidskriftsartikel (refereegranskat)abstract
- Background: People with multiple sclerosis (PwMS) face health and social challenges of living with a chronic and potentially disabling condition. To disclose or conceal MS at work may critically affect individuals' work situation, career opportunities, and health. PwMS may experience a dilemma when assessing if the possible benefits of disclosing the diagnosis outweigh the possible risks. However, concealing in the long-term may have health implications and prevent opportunities for support and work adjustments. Few studies have examined what drives PwMS to disclose or conceal MS at work and the consequences of these ways of managing MS.Objectives: To explore the reasons PwMS report for disclosing and/or concealing their MS diagnosis in the workplace, as well as the consequences they have experienced.Methods: A web-based survey of PwMS was conducted in 2021. All individuals aged 20-50 listed in the Swedish MS registry were invited to participate. The response rate was 52% and among these participants, 3,810 (86%) completed questions regarding workplace disclosure and/or concealment of MS. Free-text responses on these topics were analyzed using inductive content analysis.Results: It was common to disclose MS in the workplace (85%). Identified drivers for disclosure and concealment related to four categories: Work-related, Social, Personal and Circumstantial. Work-related drivers focused on employment or protecting one's career, and changing one's work situation versus maintaining it. Social drivers included the need for support, addressing or preventing stigma, and being considerate of others. Personal drivers were linked to moral values/personal beliefs and processing of the diagnosis. Circumstantial drivers related to involuntary or unforeseen events, timing factors, one's medical condition and external opinion/advice. Identified consequences for disclosure and concealment related to three categories: Work-life, Social, and Personal. Work-life consequences included work arrangements, and career opportunities. Social consequences were linked to MS awareness, stigma, interactions and social support, as well as dynamics of work relationships. Personal consequences involved levels of disease acceptance, and attitudes toward managing MS.Conclusion: PwMS often described the question of disclosure as challenging and navigated it with caution, as both disclosure and concealment can yield favorable and unfavorable outcomes.
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- Persson, Carina, 1961-, et al.
(författare)
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Assessing informal caregivers' experiences : a qualitative and psychometric evaluation of the Caregiver Reaction Assessment Scale.
- 2008
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Ingår i: European Journal of Cancer Care. - : Hindawi Limited. - 0961-5423 .- 1365-2354. ; 17:2, s. 189-99
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Tidskriftsartikel (refereegranskat)abstract
- With the aim to evaluate the Swedish version of the Caregiver Reaction Assessment Scale (CRA), informal caregivers (n = 209) to individuals with a malignant disease, dementia or a physical impairment were recruited. The CRA was developed in the USA and is a self‐rating questionnaire consisting of five subscales, measuring family members' reactions to the experience of caring for a relative with mental or physical illnesses. Data were analysed using psychometric and qualitative methods. Findings indicated good internal consistency, and a factor analysis confirmed the structure with five subscales; however, an overlap of items between the subscales was found. A content analysis of respondents' comments indicated that there were problems due to presuppositions inherent in the questions and with the meaning of words. Problems regarding inclusion/exclusion aspects in some concepts were also found. Two aspects of caregiver reactions were found to be missing or only partly covered: worrying and positive experiences. Results from this study suggest that the Swedish version is useful for assessment of caregiver reactions but needs further refinement.
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