Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based survey
BackgroundPeople 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 as...
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2024-02-01
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| Series: | Frontiers in Public Health |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fpubh.2024.1331746/full |
| _version_ | 1797244408443174912 |
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| author | Jessica Dervish Victoria Mailen Arfuch Victoria Mailen Arfuch Chantelle Murley Kyla A. McKay Alejandra Machado Agneta Wennman-Larsen Agneta Wennman-Larsen Emilie Friberg |
| author_facet | Jessica Dervish Victoria Mailen Arfuch Victoria Mailen Arfuch Chantelle Murley Kyla A. McKay Alejandra Machado Agneta Wennman-Larsen Agneta Wennman-Larsen Emilie Friberg |
| author_sort | Jessica Dervish |
| collection | DOAJ |
| description | BackgroundPeople 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.ObjectivesTo explore the reasons PwMS report for disclosing and/or concealing their MS diagnosis in the workplace, as well as the consequences they have experienced.MethodsA 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.ResultsIt 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.ConclusionPwMS often described the question of disclosure as challenging and navigated it with caution, as both disclosure and concealment can yield favorable and unfavorable outcomes. |
| first_indexed | 2024-03-07T21:42:22Z |
| format | Article |
| id | doaj.art-424cb29040d7482e80051d36db83483e |
| institution | Directory Open Access Journal |
| issn | 2296-2565 |
| language | English |
| last_indexed | 2024-04-24T19:10:32Z |
| publishDate | 2024-02-01 |
| publisher | Frontiers Media S.A. |
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| series | Frontiers in Public Health |
| spelling | doaj.art-424cb29040d7482e80051d36db83483e2024-03-26T10:57:18ZengFrontiers Media S.A.Frontiers in Public Health2296-25652024-02-011210.3389/fpubh.2024.13317461331746Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based surveyJessica Dervish0Victoria Mailen Arfuch1Victoria Mailen Arfuch2Chantelle Murley3Kyla A. McKay4Alejandra Machado5Agneta Wennman-Larsen6Agneta Wennman-Larsen7Emilie Friberg8Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenDivision of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenPsychiatry, Department of Medical Sciences, Uppsala University, Uppsala, SwedenDivision of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenDivision of Neuro, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenDivision of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenDivision of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenDepartment of Nursing Science, Sophiahemmet University, Stockholm, SwedenDivision of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, SwedenBackgroundPeople 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.ObjectivesTo explore the reasons PwMS report for disclosing and/or concealing their MS diagnosis in the workplace, as well as the consequences they have experienced.MethodsA 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.ResultsIt 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.ConclusionPwMS often described the question of disclosure as challenging and navigated it with caution, as both disclosure and concealment can yield favorable and unfavorable outcomes.https://www.frontiersin.org/articles/10.3389/fpubh.2024.1331746/fullmultiple sclerosischronic diseasedisclosureconcealmentwork environmentsurvey |
| spellingShingle | Jessica Dervish Victoria Mailen Arfuch Victoria Mailen Arfuch Chantelle Murley Kyla A. McKay Alejandra Machado Agneta Wennman-Larsen Agneta Wennman-Larsen Emilie Friberg Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based survey Frontiers in Public Health multiple sclerosis chronic disease disclosure concealment work environment survey |
| title | Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based survey |
| title_full | Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based survey |
| title_fullStr | Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based survey |
| title_full_unstemmed | Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based survey |
| title_short | Disclosing or concealing multiple sclerosis in the workplace: two sides of the same coin—insights from a Swedish population-based survey |
| title_sort | disclosing or concealing multiple sclerosis in the workplace two sides of the same coin insights from a swedish population based survey |
| topic | multiple sclerosis chronic disease disclosure concealment work environment survey |
| url | https://www.frontiersin.org/articles/10.3389/fpubh.2024.1331746/full |
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