Hostname: page-component-586b7cd67f-gb8f7 Total loading time: 0 Render date: 2024-11-22T18:34:41.424Z Has data issue: false hasContentIssue false

Disclosing a Diagnosis in the Workplace: Perspective of People With Multiple Sclerosis

Published online by Cambridge University Press:  17 February 2021

Laura Gill
Affiliation:
School of Health Sciences, National University of Ireland Galway
Sinéad M. Hynes*
Affiliation:
School of Health Sciences, National University of Ireland Galway
*
Address for correspondence: Dr Sinéad Hynes, E-mail: [email protected]

Abstract

Background:

Early withdrawal from the workforce is associated with a diagnosis of multiple sclerosis (MS), with employment retention rates also lower than in the general population. Despite legal requirements, equality in the workplace for people with MS has not been achieved. Disclosure of multiple sclerosis at work is essential for the implementation of accommodations enabling employment retention.

Method:

An interpretive descriptive study explored participants’ decision to disclose or not disclose their diagnosis of multiple sclerosis and the implications this had on work participation and working relationships. Semistructured interviews were used to collect data from 6 participants.

Results:

Three themes were identified, using a reflective approach to analysis, from the data: (a) Accommodations; (b) Workplace Relationships; and (c) Balancing Work and Home Life. Participants had mixed experiences of disclosing their diagnosis. Findings supported the implementation of workplace accommodations including physical, cognitive, and structural supports. Concealment of MS was associated with fear of workplace stigmatisation.

Conclusion:

Disclosure is multidimensional and subjective. It is based on personal, systematic, and social factors. This study was limited by the small number of participants and not including stakeholders in the creation of the topic guide. The results are important for those involved in supporting people with multiple sclerosis to remain in the workplace.

Type
Article
Copyright
© The Author(s), 2021. Published by Cambridge University Press

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Footnotes

Social media: Twitter handle @OTNUIGalway and @sineadnieidhin

References

Bøe Lunde, H.M., Aae, T.F., Indrevåg, W., Aarseth, J., Bjorvatn, B., Myhr, K.M., & , L. (2012). Poor sleep in patients with multiple sclerosis. PloS one, 7(11).10.1371/journal.pone.0049996CrossRefGoogle Scholar
Bradbury-Jones, C., Breckenridge, J., Clark, M.T., Herber, O.R., Wagstaff, C., & Taylor, J. (2017). The state of qualitative research in health and social science literature: a focused mapping review and synthesis. International Journal of Social Research Methodology, 20(6), 627645.CrossRefGoogle Scholar
Braun, V., & Clarke, V.. (2019a). Reflecting on reflexive thematic analysis. Qualitative Research in Sport, Exercise and Health, 11(4), 589597. doi: 10.1080/2159676X.2019.1628806 CrossRefGoogle Scholar
Braun, V., & Clarke, V. (2019b). To saturate or not to saturate? Questioning data saturation as a useful concept for thematic analysis and sample-size rationales. Qualitative Research in Sport, Exercise and Health. doi: 10.1080/2159676X.2019.1704846 CrossRefGoogle Scholar
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3(2), 77101.10.1191/1478088706qp063oaCrossRefGoogle Scholar
Cancelliere, C., Donovan, J., Stochkendahl, M.J., Biscardi, M., Ammendolia, C., Myburgh, C., & Cassidy, J.D. (2016). Factors affecting return to work after injury or illness: best evidence synthesis of systematic reviews. Chiropractic & Manual Therapies, 24, 123.CrossRefGoogle ScholarPubMed
Cleary, M., Horsfall, J., & Hayter, M. (2014). Data collection and sampling in qualitative research: ‘Does size matter?’. Journal of Advanced Nursing, 70(3), 473475.CrossRefGoogle Scholar
Council of the European Union. (2000). Directive 2000/78/EC of 27 November 2000 establishing a general framework for equal treatment in employment. https://eur-lex.europa.eu/legal-content/EN/ALL/?uri=celex:32000L0078 Google Scholar
Darawsheh, W. (2014). Reflexivity in research: Promoting rigour, reliability and validity in qualitative research. International Journal of Therapy and Rehabilitation, 21(12), 560568.10.12968/ijtr.2014.21.12.560CrossRefGoogle Scholar
D’Arcy, C. (2012). Multiple sclerosis: Symptom management. Nursing and Residential Care, 14(8), 405409.10.12968/nrec.2012.14.8.405CrossRefGoogle Scholar
Dennison, L., Moss-Morris, R., & Chalder, T. (2009). A review of psychological correlates of adjustment in patients with multiple sclerosis. Clinical Psychology Review, 29(2), 141153.10.1016/j.cpr.2008.12.001CrossRefGoogle ScholarPubMed
Dyck, I., & Jongbloed, L. (2000). Women with multiple sclerosis and employment issues: A focus on social and institutional environments. Canadian Journal of Occupational Therapy, 67(5), 337346.10.1177/000841740006700506CrossRefGoogle ScholarPubMed
European Agency for Safety and Health at Work. (2019). Directive 2000/78/EC – Equal Treatment. https://osha.europa.eu/en/legislation/directives/council-directive-2000-78ec Google Scholar
European Foundation for the Improvement of Living and Working Conditions – Employee (2019). https://www.eurofound.europa.eu/observatories/eurwork/industrialrelations-dictionary/employee Google Scholar
Forslin, M., Fink, K., Hammar, U., von Koch, L., & Johansson, S. (2018). Predictors for employment status in people with multiple sclerosis: A 10-year longitudinal observational study. Archives of Physical Medicine & Rehabilitation, 99(8), 14831490.10.1016/j.apmr.2017.12.028CrossRefGoogle ScholarPubMed
Frndak, S.E., Kordovski, V., Cookfair, D., Rodgers, J., Weinstock-Guttman, B., & Benedict, R. (2014). Disclosure of disease status among employed multiple sclerosis patients: Association with negative work events and accommodations. Multiple Sclerosis Journal, 21(2), 225234.10.1177/1352458514540971CrossRefGoogle ScholarPubMed
Glanz, B.I., Dégano, I.R., Rintell, D.J., Chitnis, T., Weiner, H.L., & Healy, B.C. (2012). Work productivity in relapsing multiple sclerosis: Associations with disability, depression, fatigue, anxiety, cognition, and health-related quality of life. Value in Health, 15(8), 10291035.10.1016/j.jval.2012.07.010CrossRefGoogle ScholarPubMed
Graneheim, U.H., & Lundman, B. (2004). Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Education Today, 24(1), 105112.10.1016/j.nedt.2003.10.001CrossRefGoogle ScholarPubMed
Grytten, N., & Maseide, P. (2005). What is expressed is not always what is felt: coping with stigma and the embodiment of perceived illegitimacy of multiple sclerosis. Chronic Illness, 1(3), 231243.Google Scholar
Houghton, C.E., Casey, D., & Murphy, K. (2012). Approaches to rigour in qualitative case study research. Nurse Researcher, 20(4), 1217.10.7748/nr2013.03.20.4.12.e326CrossRefGoogle Scholar
Hunt, M.R. (2009). Strengths and challenges in the use of interpretive description: Reflections arising from a study of the moral experience of health professionals in humanitarian work. Qualitative Health Research, 19(9), 12841292.CrossRefGoogle ScholarPubMed
Irvine, A., Drew, P., & Sainsbury, R. (2013). ‘Am I not answering your questions properly?’ Clarification, adequacy and responsiveness in semi-structured telephone and face-to-face interviews. Qualitative Research, 13(1), 87106.CrossRefGoogle Scholar
Jellie, B., Sweetland, J., Riazi, A., Cano, S., & Playford, E. (2014). Staying at work and living with MS: A qualitative study of the impact of a vocational rehabilitation intervention. Disability and Rehabilitation, 36(19), 15941599.CrossRefGoogle ScholarPubMed
Johnson, K., Yorkston, K., Klasner, E., Kuehn, C., Johnson, E., & Amtmann, D. (2004). The cost and benefits of employment: A qualitative study of experiences of persons with multiple sclerosis. Archives of Physical Medicine and Rehabilitation, 85, 201209.10.1016/S0003-9993(03)00614-2CrossRefGoogle ScholarPubMed
Jootun, D., Mcghee, G., Campus, H., Lanarkshire, G.R., & Marland, G.R. (2009). Reflexivity: promoting rigour in qualitative research. Nursing Standard, 23(3), 4246.Google ScholarPubMed
Kirk-Brown, A., & Van Dijk, P. (2014). An empowerment model of workplace support following disclosure, for people with MS. Multiple Sclerosis Journal, 20(12), 16241632.CrossRefGoogle ScholarPubMed
Kirk-Brown, A., Van Dijk, P., Simmons, R., Bourne, M., & Cooper, B. (2014). Disclosure of diagnosis of multiple sclerosis in the workplace positively affects employment status and job tenure. Multiple Sclerosis Journal, 20(7), 871876.10.1177/1352458513513967CrossRefGoogle ScholarPubMed
Korstjens, I., & Moser, A. (2018). Series: practical guidance to qualitative research. Part 4: trustworthiness and publishing. European Journal of General Practice, 24(1), 120124.10.1080/13814788.2017.1375092CrossRefGoogle ScholarPubMed
Krause, I., Kern, S., Horntrich, A., & Ziemssen, T. (2013). Employment status in multiple sclerosis: impact of disease-specific and non-disease-specific factors. Multiple Sclerosis Journal, 19(13), 17921799.10.1177/1352458513485655CrossRefGoogle ScholarPubMed
Li, J., Rumrill, P.D., Wang, F., Roessler, T., & Leslie, M. (2016). Predictors of return to work intention among unemployed adults with multiple sclerosis: A reasoned action approach. Journal of Rehabilitation, 82(2), 1424.Google Scholar
Mattarozzi, K., Casini, F., Baldin, E., Baldini, M., Lugaresi, A., Milani, P., Pietrolongo, E, Gajofatto, A., Leone, M., Riise, T., Vignatelli, L., & D’Alessandro, R. (2015). Assessing subjective quality of life domains after multiple sclerosis diagnosis disclosure. Health Expectations, 19(2), 437447.CrossRefGoogle ScholarPubMed
Meade, M., Rumrill, P., Krause, J.S., Reed, K.S., & Aust, R. (2016). Perceptions of quality of employment outcomes after multiple sclerosis: A qualitative study. Journal of Rehabilitation, 82(2), 3140.Google Scholar
Moore, P., Harding, K., Clarkson, H., Pickersgill, T., Wardle, M., & Robertson, N.P. (2013). Demographic and clinical factors associated with changes in employment in multiple sclerosis. Multiple Sclerosis Journal, 19(12), 16471654.CrossRefGoogle ScholarPubMed
Morse, C.L., Schultheis, M.T., McKeever, J.D., & Leist, T. (2013). Multitasking in multiple sclerosis: Can it inform vocational functioning? Archives of Physical Medicine & Rehabilitation, 94(12), 25092514.10.1016/j.apmr.2013.06.033CrossRefGoogle ScholarPubMed
MS International Federation. (2016). Global multiple sclerosis employment report. Available at https://www.msif.org/wp-content/uploads/2016/05/Global-MS-Employment-Report-2016.pdf Google Scholar
NVivo Qualitative Data Analysis Software. (2014). NVivo, Version 12.2. Melbourne, Australia: QSR International Pty Ltd.Google Scholar
Pack, T.G., Szirony, G.M., Kushner, J.D. & Bellaw, J.R. (2014). Quality of life and employment in persons with multiple sclerosis. Work, 49(2), 281287.10.3233/WOR-131711CrossRefGoogle ScholarPubMed
Patejdl, R., Penner, I.K., Noack, T.K., & Zettl, U.K. (2016). Multiple sclerosis and fatigue: A review on the contribution of inflammation and immune-mediated neurodegeneration. Autoimmunity Reviews, 15(3), 210220.10.1016/j.autrev.2015.11.005CrossRefGoogle Scholar
Pearson, A. (2010). Evidence-based healthcare and qualitative research. Journal of Research in Nursing, 15(6), 489493.10.1177/1744987110380580CrossRefGoogle Scholar
Power, R., & Williams, B. (2001). Checklists for improving rigour in qualitative research. British Medical Journal, 323(11), 514515.10.1136/bmj.323.7311.514bCrossRefGoogle ScholarPubMed
Raggi, A., Covelli, V., Schiavolin, S., Scaratti, C., Leonardi, M., & Willems, M. (2016). Work-related problems in multiple sclerosis: A literature review on its associates and determinants. Disability and Rehabilitation, 38(10), 936944.10.3109/09638288.2015.1070295CrossRefGoogle ScholarPubMed
Reed, S., Meadeb, M., Jarneckea, M., Rumrill, P., & Krause, J. (2017). Disclosing disability in the employment setting: Perspectives from workers with multiple sclerosis. Journal of Vocational Rehabilitation, 47(2), 175184.CrossRefGoogle Scholar
Roessler, R., Rumrill, P., Hennessey, M., & Nissen, S. (2011). The employment discrimination experience of adults with multiple sclerosis. Journal of Rehabilitation, 77(1), 2030.Google Scholar
Roessler, R.T., Rumrill, P., Li, J., & Leslie, J. (2015). Predictors of differential employment statuses of adults with multiple sclerosis. Journal of Vocational Rehabilitation, 42(2), 141152.10.3233/JVR-150731CrossRefGoogle Scholar
Rumrill, P., Roessler, R., Vierstra, C., Hennessey, M. & Staples, L. (2013). Workplace barriers and job satisfaction among employed people with multiple sclerosis: An empirical rationale for early intervention. Journal of Vocational Rehabilitation, 20(3), 177183.Google Scholar
Ryan-Nicholls, K.D., & Will, C.I. (2009). Rigour in qualitative research: mechanisms for control. Nurse Researcher, 16(3), 7085.CrossRefGoogle ScholarPubMed
Schiavolin, M., Leonardi, M., Giovannetti, M., Antozzi, M., Brambilla, M., Confalonieri, M., Mantegazza, M., & Raggi, M. (2013). Factors related to difficulties with employment in patients with multiple sclerosis: a review of 2002–2011 literature. International Journal of Rehabilitation Research, 36(2), 105111.CrossRefGoogle ScholarPubMed
Schwartz, C., & Gronemann, O.C. (2009). The contribution of self-efficacy, social support and participation in the community to predicting loneliness among persons with schizophrenia living in supported residences. The Israel Journal of Psychiatry and Related Services, 46(2), 120129.Google ScholarPubMed
Silverman, D. (2014). Interpreting qualitative data. London, England: Sage.Google Scholar
Suri, H. (2011). Purposeful sampling in qualitative research synthesis. Qualitative Research Journal, 11(2), 6375.10.3316/QRJ1102063CrossRefGoogle Scholar
Thorne, S., Kirkham, S.R., & MacDonald-Emes, J. (1997). Interpretive description: A noncategorical qualitative alternative for developing nursing knowledge. Research in Nursing & Health, 20(2), 169177.3.0.CO;2-I>CrossRefGoogle ScholarPubMed
Thorne, S., Kirkham, S.R., & O’Flynn-Magee, K. (2004). The analytic challenge in interpretive description. International Journal of Qualitative Methods, 3(1), 111.10.1177/160940690400300101CrossRefGoogle Scholar
United Nations Convention of the Rights of Persons with Disabilities, December 13, 2006, https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-with-disabilities.html Google Scholar
Van der Meide, H., Gorp, D., Van Der Hiele, K., & Visser, L. (2018). ‘Always looking for a new balance’: Toward an understanding of what it takes to continue working while being diagnosed with relapsing-remitting multiple sclerosis. Disability and Rehabilitation, 40(21), 25452552.10.1080/09638288.2017.1342278CrossRefGoogle Scholar
Vicker, M. (2012). Antenarratives to inform health care research: exploring workplace illness disclosure for people with multiple sclerosis. Journal of Health and Human Services Administration, 35(2), 170206.Google Scholar
Wiberg, M., Friberg, E., Stenbeck, M., Alexanderson, K., Norlund, A., Hillert, J., & Tinghög, P. (2015). Sources and level of income among individuals with multiple sclerosis compared to the general population: A nationwide population-based study. Multiple Sclerosis Journal, 21(13), 17301741.10.1177/1352458515570767CrossRefGoogle ScholarPubMed