What Do People with Multiple Sclerosis Want from an Occupational Therapy Service?
Preston, Jenny, Haslam, Simon, Lamont, Lynn, British Journal of Occupational Therapy
Multiple sclerosis (MS) is one of the most common neurological diseases in young adults, affecting around 100,000 people in the United Kingdom (UK) (Multiple Sclerosis Society 2010). Typically diagnosed between the ages of 20 and 50 years, it can affect people throughout life and is characterised by a broad array of functional symptoms, frequently resulting in motor and cognitive impairment (National Institute for Health and Clinical Excellence 2004). Studies from the UK, Canada and the United States suggest that people with MS experience challenges beyond the symptoms, which can result in social isolation, feelings of dependency, boredom, diminished self-worth and difficulties establishing and maintaining relationships and social support (Dyck 1995, Dalmonte et al 2003, Reynolds and Prior 2003).
The primary goal of occupational therapy is 'to enable people to participate in the activities of everyday life' (College of Occupational Therapists 2006, p2). Yet current literature suggests that approximately only 30% of people with MS are referred to an occupational therapist over the course of their disease (Finlayson and Dalmonte 2002, Mosley et al 2003, Finlayson et al 2008). Referral appears to occur predominantly when people experience increasing disease severity (Finlayson and Dalmonte 2002), when they present with more severe musculoskeletal and movement related symptoms (Mosley et al 2003) or when they report difficulties in walking, working, cooking, driving, bathing and grooming (Finlayson and Dalmonte 2002, Mosley et al 2003).
Occupational therapists, therefore, are key to the management of people with MS by enhancing participation through interventions that minimise impairment or increase performance in meaningful activities, by providing environmental support and reducing social environmental barriers, and by enhancing personal coping strategies (Finlayson et al 2003, 2008, Mosley et al 2003). Since the systematic review by Steultjens et al (2005), which concluded that a lack of evidence existed to support or refute the efficacy of occupational therapy with people with MS, there has been increasing evidence supporting occupational therapy at a symptomatic management level (Mathiowetz et al 2007).
Yet, despite recognition of the impact of MS on occupational performance and the increasing evidence to support the effectiveness of occupational therapy, there remains a lack of awareness of the scope and purpose of occupational therapy for both referrers and service users (Finlayson et al 2003, Mosley et al 2003). Additionally, there is a lack of evidence of how people with MS experience an occupational therapy service. Previous studies, although not specific to occupational therapy, have highlighted dissatisfaction with the health care services, particularly the lack of advice they received (Somerset et al 2001). Courts et al (2004) and Finlayson et al (2003) further acknowledged the importance that people with MS and their families placed on the quality, accessibility, compassion and knowledge of service providers.
This study was developed within a local neurological rehabilitation service, which offers programmes of assessment and rehabilitation for adults with acquired, congenital and degenerative neurological conditions, including MS. The occupational therapy service receives 140 new referrals per annum, of which approximately 45% are for people with MS. At the time of the study, there were 907 people with MS known to the neurological rehabilitation service although only 322 had been referred for occupational therapy.
This study was initiated following the introduction of a clinical guideline developed by the occupational therapy service to provide programmes of assessment, rehabilitation and ongoing management for people with MS. The overall aim of the programme was to enable people with MS to identify specific areas of difficulty within the domains of self-care, productivity and leisure. …