Women with Multiple Sclerosis and Employment Issues: A Focus on Social and Institutional Environments

Abstract

This paper examines employment issues for women diagnosed with multiple sclerosis (MS) and their workplace experiences, focusing analysis on the social and institutional dimensions of the environment. The analysis draws on data from a mixed method study using in-depth interviews and a survey. The findings indicate that although severity of symptoms affect employment status, non-medical factors, including modification of work conditions and understanding employers, and a supportive home environment with the possibility of delegating household tasks, can enhance women's ability to work. The specific focus in the paper on the experiences of women managing their disability in the workplace, from the qualitative phase of the study, acts as an analytic device to illustrate how context influences the way in which such factors play out. In high-lighting the issue of disclosure of diagnosis, and associated identity and income concerns for women, the paper demonstrates the importance of the social and institutional dimensions of environment in shaping occupational performance. The findings suggest that inclusion of environmental analysis in clinical practice broadens the range of intervention strategies to be considered and raises the issue of occupational therapists' role in advocacy.

Why do young adults with Type 1 diabetes find it difficult to manage diabetes in the workplace?

“…Subjectively, they seemed to feel that they were contravening the types of productive, time-driven identities (Mackian, 2000) and performance norms (Dyck and Jongbloed, 2000) that they felt that their workplace was implicitly or explicitly encouraging them to embody. The findings here support previous research which indicates that young adults with diabetes are just as likely to be as successful and employed as individuals without diabetes (Lloyd et al, 1992), though they may be more concerned than their counterparts without diabetes about the risk of losing their jobs (Griffiths et al, 1993).…”

Factors that influence the employment status of people with multiple sclerosis: a multi-national study

“…The majority of studies on employment and MS have focused on specific aspects related to disease, demographic or job characteristics [1,3,4,16,18,19,28]. The findings from these individual studies suggest that when assessed in isolation, disease severity or specific symptoms are not always sufficient predictors of employment status, or perhaps at least do not tell the whole story.…”

“…People with MS often attribute premature retirement from the workforce to the disease, primarily physical difficulty, ambulation problems, visual difficulties, emotional problems and fatigue [3,4,6,9,13,22,27]. Fatigue has been consistently reported as an important factor in determining work status, both influencing early retirement and as a challenge for maintaining one's job [5,9,12].…”

“…While studies have shown that simple strategies can help the person to better manage these difficulties in the workplace [1] and that a cooperative work environment with minimal distractions and flexible schedules [3] can facilitate employment, cognitive difficulties have been found to be a significant factor in determining unemployment status [1,4,24]. While the study by Beatty et al [1] did find cognitive problems to be predictive of early retirement, they noted that most of the employed participants had mild cognitive difficulties and continued to work, adopting strategies to compensate.…”

“…A handful of studies on employment and MS have identified factors related to discrimination as barriers to successful employment, such as discriminatory attitudes held by family and healthcare professionals about chronic illness [2,7,14], inflexibility regarding time off [3] and architectural barriers within the working environment [13]. Other studies have reported a supportive home environment, self-pacing and adaptive aids helped in maintaining employment [9,14].…”