Research Study 2, Research Brief 6, 2018
Barriers and Facilitators to Employment Among People with Multiple Sclerosis
by James S. Krause, PhD; Clara E. Dismuke-Greer, PhD; and Melinda Jarnecke
Available formats: Word
While multiple sclerosis (MS) is unique to each person, common symptoms include cognitive and memory issues and fatigue. Onset of MS may be gradual and typically occurs between ages 20-40, during the most active employment years (Hirst et al., 2009). Although employment is of great importance to adult life, the onset of MS presents challenges to employment. In reviewing literature on employment status among those with MS, Schiavolin et al. (2013) found that 59% of adults with MS worldwide were unemployed. Other studies have found that there seems to be a sharp decline in employment, stemming from the illness progression. In a study by Pearson et al., more than 90% of individuals with MS had worked at some point, but 54% were not working at the time of the study (2016). A study by Krause et al. yielded similar results, with most people with MS being employed prior to their diagnosis and then the majority being unemployed at the time of the study, before typical retirement age (2013). It is clear that the onset of MS and its corresponding symptoms can present barriers to maintaining current employment or obtaining new employment.
The intent of this research brief is to answer questions about barriers and facilitators to obtaining or maintaining quality employment after a diagnosis of MS. The brief presents some of the findings from a study on quality employment outcomes conducted by the Rehabilitation Research and Training Center (RRTC) on Employment of People with Physical Disabilities. Data were collected via mailed and web self-report assessment, and 1,324 participants completed the study.
For the purpose of comparing barriers and facilitators to employment among those with MS to another population, references will be made to a similar, yet separate study on spinal cord injury (SCI) (NIDILRR grant number 90DP0050). Both the MS study and the SCI study assessed barriers and facilitators to employment using five-point rating scales for 30 items. This aids us in identifying barriers that may be common across disability group and barriers which may be more specific to individuals who have MS.
Desire to work
Previous research has found that those with MS value work highly (Johnson et al., 2004). In the assessment of barriers and facilitators to employment, only a small percentage of the participants in our study (19.5%) disagreed or strongly disagreed with the statement, “I prefer not to work”. The majority (63.6%) indicated that working a job is important to them. Another item measured how much people with MS know about jobs available to people with disabilities (“I do not know much about jobs available to people with disabilities”), and over half of participants (55%) agreed that they do not know much about jobs available to people with disabilities. This reveals that people want to work, but maybe do not feel that they have the knowledge about available jobs to do so.
In comparing the responses in this study with responses from the similar study that focuses on SCI, the researchers overwhelmingly found that people with MS are having more difficulty with memory and confusion. While 21.8% of those with SCI agreed that memory problems or confusion make working difficult, more than double of the individuals with MS agreed (54.4%). Another common symptom of MS, fatigue, is also cited as a difficulty to maintaining employment in 54.52% of participants (compared to 34.28% in those with SCI, p-value of <.0001). Multiple other studies have shown that these symptoms have a significant, negative impact on employment status in individuals with MS that leads to exiting the workforce prematurely, reducing working hours, or changing jobs (Moore et al., 2013; Boe Lunde et al., 2014; Paltamaa, Sarasoja, Wikstrom, & Malkia, 2006).
The impact of MS symptoms on employment can be profound, but there are assistive technologies and accommodations available for when symptoms interfere with employment or daily living activities. However, when participants who were not currently employed were asked about accommodations received at their most recent job, only 31.4% agreed that accommodations were provided (“My employer provided necessary accommodations for successful employment”). This may speak to the fact that more emphasis needs to be placed on educating both employees and employers on available technologies. Appropriate technologies may help people to tele-communicate or otherwise find ways of reducing the factors leading to work related fatigue and contributing to cognitive issues.
In a study by the American Psychological Association (APA) investigating stress, it was found that work is one of the most common sources of stress in the general population (2017). In the MS population, many participants do feel that work is stressful, with over half of the participants in our study (50.52%) agreeing that they are concerned that working is too stressful. The APA also looked at coping mechanisms for stress, and while some unhealthy coping mechanisms were reported (smoking, 14%), 53% of individuals used exercise and 12% used yoga or meditation to manage stress (2017). The healthy coping mechanisms may be useful for individuals with MS to employ as a means of managing work stress.
According to this study, 82.11% of participants reported having the proper education to work (“I have the proper education and/or training to work”). For comparison, 72.43% of individuals with SCI agreed that they had the proper education to work. In addition to individuals with MS feeling more confident about their education, in looking at average years of education, those with MS actually tend to be more highly education than those with SCI. Those with MS had an average of 15.21 years of education, whereas those with SCI had an average of 13.89 years of education.
Studies have found that education is a predictor for employment. One study found that 56.5% of patients with MS who had higher levels of education were employed compared to 40.4% of patients with lower levels of education (Boe Lunde et al., 2014). Another study cited low educational attainment as being related to the increased risk of work loss (Julian et al., 2008). Not surprisingly, the participants in our MS study not only reported having the proper education to work, but also had higher rates of employment compared to the participants in the SCI study. Among MS participants, 83.4% were employed at onset, with 44.8% currently employed at the time of the study. In comparison, 82.3% of SCI participants were employed at injury but only 35.1% were employed at the time of the study.
View of Government Programs
The majority of individuals with MS reported that they do not see government programs as particularly helpful. The RRTC researchers do not have an evaluation of a listing of government programs, but rather the participants’ overall perspective regarding governmental supports. Less than 10% agreed that government programs are available to help acquire a job, and 17.45% cited that government programs are more helpful in getting a job rather than keeping a job. However, one study found that of individuals with MS who left the workforce, most did so voluntarily (75%), although most believe they are able to work and would like to re-enter the workforce (Roessler et al., 2003; Rumrill, 2006). This may speak to the fact that government programs should identify the specific needs of this population and provide available supports. Vocational rehabilitation programs may be less likely to capture individuals with MS since the onset is gradual, often fluctuating over time, rather than the distinctive point in time of occurrence as with traumatic SCI. Therefore, their needs may be less apparent, yet no less important.
If researchers are to improve employment outcomes for individuals with MS, it is important to identify and address these barriers. This RRTC research findings emphasize that there are several major barriers to employment among those with MS. The findings reinforce the importance of management of MS symptoms, since many symptoms of MS are associated with poor employment outcomes. This highlights the need for those with MS and their healthcare providers to understand consequences of symptoms and address them. More research is needed that develops interventions to decrease common barriers (i.e. MS symptoms, education, stress, and lack of knowledge of available resources and government programs) to employment and improve quality employment outcomes.
- American Psychological Association (APA). (2017). Stress in America: The State of our Nation. Stress in America Survey.
- Bøe lunde, H.M., Telstad, W., Grytten, N., et al. (2014). Employment among patients with multiple sclerosis-a population study. PLoS One, 9(7):e103317.
- Hirst, C., Ingram, G., Pickersgill, T., Swingler, R., Compston, D.A., Robertson, N.P. (2009). Increasing prevalence and incidence of multiple sclerosis in South East Wales. J Neurol Neurosurg Psychiatry, 80, 386-391.
- Johnson, K.L., Yorkston, K.M., Klasner, E.R., Kuehn, C.M., Johnson, E., Amtmann, D. (2004). The cost and benefits of employment: a qualitative study of experiences of persons with multiple sclerosis. Arch Phys Med Rehabil, 85, 201-209.
- Julian, L.J., Vella, L., Vollmer, T., Hadjimichael, O., Mohr, D.C. (2008). Employment in multiple sclerosis. Exiting and re-entering the work force. J Neurol, 255(9), 1354-60.
- Krause I, Kern S, Horntrich A, Ziemssen T. (2013). Employment status in multiple sclerosis: impact of disease-specific and non-disease-specific factors. Mult Scler, 19(13), 1792-9.
- Moore, P., Harding, K.E., Clarkson, H., Pickersgill, T.P., Wardle, M., Robertson, N.P. (2013). Demographic and clinical factors associated with changes in employment in multiple sclerosis. Mult Scler, 19(12), 1647-54.
- Paltamaa, J., Sarasoja, T., Wikstrom, J., Malkia, E. (2006). Physical functioning in multiple sclerosis: a population-based study in central Finland. J Rehabil Med, 38, 339-345.
- Pearson, J.F., Alla, S., Clarke, G., et al. (2016). Multiple sclerosis impact on employment and income in New Zealand. Acta Neurol Scand, 136(3), 223-232.
- Roessler, R.T. & Rumrill, P. (2003). Multiple sclerosis and employment barriers: A systemic perspective on diagnosis and intervention. Work, 21(1), 17-23.
- Rumrill, P. (2006). Help to stay at work: Vocational rehabilitation strategies for people with multiple sclerosis. Multiple Sclerosis in Focus, 7(14-18).
- Shiavolin, S., Leonardi, M., Giovannetti, A.M., Antozzi, C., Brambilla, L., Confalonieri, P., & Raggi, A. (2013). Factors related to difficulties with employment in patients with multiple sclerosis: A review of 2002-2022 literature. Int J Rehabil Res, 36(2), 105-111.
Information for this research brief was developed for the VCU-RRTC on Employment of People with Physical Disabilities by collaborative partners at the Medical University of South Carolina (MUSC). Questions on this fact sheet should be directed to Dr. James Krause at email@example.com or by calling 1-866-313-9963. Questions on the VCU-RRTC, or accommodations should be directed to Dr. Katherine Inge, Project Director at [firstname.lastname@example.org] or (804) 828-5956. For more information on the VCU-RRTC, please visit https://pd.vcurrtc.org/index.cfm.
Virginia Commonwealth University, Rehabilitation Research and Training Center on Employment of People with Physical Disabilities (VCU-RRTC) is an equal opportunity/affirmative action institution providing access to education and employment without regard to age, race, color, national origin, gender, religion, sexual orientation, veteran's status, political affiliation, or disability. The VCU-RRTC is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant number #90RT503502). NIDILRR is a Center within the Administration for Community Living (ACL), Department of Health and Human Services (HHS).