Antenarratives to Inform Health Care Research: Exploring Workplace Illness Disclosure for People with Multiple Sclerosis (MS)
Vickers, Margaret H., Journal of Health and Human Services Administration
Antenarratives to Inform Health Care Professionals
The purpose of this manuscript is to explore the use of antenarratives (Boje, 2001) as a valuable means of presenting health care research to health care professionals. I use antenarratives here to draw attention to crucial aspects of the lived experience of having Multiple Sclerosis (MS), especially as it relates to the self-disclosure of that illness at work. People with disability, especially those with MS, are substantially more likely to be unemployed and/or underemployed than people without disability, and these disadvantages are not simply due to individual functional limitations (Lonsdale, 1986; Barnes, 1991; Barnes et al, 1998; Barnes, 2000; Vickers, 2008; 2009c). Despite disability-related legislation in a number of countries--for example, the USA, the UK and Australia--there have been no significant improvements in employment or labour force participation rates for people with disability (Hernandez et al, 2000; Hernandez et al, 2007a; Hernandez et al, 2007b; Hernandez et al, 2008; Shrey & Hursh, 1999; Smith & Twomey, 2002; BCA, 2007; Barnes, 2000). In the United States, for example, while it has been over 15 years since the passage of the Americans with Disabilities Act and nearly five years since the passage of the Ticket to Work Act, federal and state policy makers still struggle to find solutions addressing the needs of working age adults with disabling conditions and illness (Bolin, 2007).
The retention of employment for people with MS is especially problematic; lower than figures for other people with disability in general, and lower than would be expected even for people with very severe physical disability (Roessler & Rumrill, 1994; Vickers, 2009c). While more than 90 per cent of people with MS have employment histories, with most (60 per cent) still working at the time of diagnosis (La Rocca, 1995; Rumrill et al, 2000), as few as 25 or 30 per cent of people with MS are able to retain employment as their illness progresses (Jackson & Quaal, 1991; Jongbloed, 1998; Roessler & Rumrill, 1994)--and people with MS who leave work are unlikely to return (Rumrill et al, 2000; Vickers, 2008; Vickers, 2009c). People with MS are being disadvantaged more in employment than people with non-MS-related disability, in many cases because of the highly stigmatised nature of MS and the flawed assumptions of employers, rather than actual levels of disability (Vickers, 2009c).
Health care support and services for people with chronic illness are often provided in communities through highly discretionary (even arbitrary) processes (Phillips et al, 2008). One way to improve such processes might be the provision of more useful and high quality information to health care providers, both in the clinical setting and for those developing policy. Improving the support of patients and their families through humanistic and empathic health care provision can be facilitated by better communication of the illness experience and, especially, the issues of concern to those living and working with a chronic and disabling condition such as MS. Humanism in health care management entails serving patients and their families, health care organizations, and the community in which recipients of health care reside (Kilpatrick, 2009). Humanistic health care strives to create environments that support and uplift patients and their families (Kilpatrick, 2009) helping them cope with life and work. Empathic engagement in health care and human services is beneficial, not only to the patients receiving care and support, but for health care providers, administrators, managers, health care institutions and the public at large (Hojat, 2009).
Understanding the experiences, concerns and perspectives of a person with a chronic illness or disability, such as MS, and being able to communicate and respond to this understanding is crucial to improving patient outcomes, both health- and employment-related. …