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...with a disability is the process of growing older with a long-term physical or mental impairment acquired in childhood, as a young adult or in middle age. This process is different than aging into disability, which occurs when individuals acquire and experience sustained impairment and disability for the first time in old age. The life expectancy of persons with MS is increasing globally with variations in length of life related to age of onset, progression of disease, and timing of disability (Bergamaschi, Montomoli, Candeloro, Fratti, Citterio, & Cosi, 2005; Pekmezovic, Iaberbinski, Drulovic, Stojsavljevic, & Levie, 2002), gender (Ekestem & Lebhart, 2004), and presence of other diseases, accidents, and suicide (BronnumHansen, Koch-Henriksen, & Stenager, 2004). This increased life span often includes expansive periods of impairment and disability that significantly influence the life experiences of individuals and their families. Although clinical research has identified successful pharmaceutical treatment for MS symptoms and slowing of disease progression (Weiner, 2004), it is not clear if MS has post-onset or age-related syndromes found in other neurological conditions such as poliomyelitis (Perry, 2004), muscular dystrophy (Klingbeil, Baer & Wilson, 2004), or spinal cord injury (Bauman & Waters, 2004).
While treating MS and discovering its etiology continues to be a pressing issue in biomedical research (Weiner, 2004), of specific interest to clinicians, program administrators, and policymakers is the issue of how to support the aging needs of individuals with degenerating forms of MS, an area with limited investigation (Stem, 2005). The lack of evidence-based knowledge in this area has resulted in limited guidance for interventions such as independent living or long-term care. Given this, the purpose of this paper is to strengthen the evidence in this area by investigating how people with MS currently support their independent living needs. More specifically, in the absence of a theory or model of long-term support use coupled with limited empirical research in this area, the aim of this study was to strengthen the knowledge base in this area by assessing current informal and formal support utilization by individuals with MS. In addition, the implications for practice, programs, and policies are discussed in relation to aging with MS. Specific research questions addressed in this study are: a) To what extent do persons with MS use informal and formal support services? and b) What personal and disability related characteristics are most associated with individual utilization of support services?
Relevant Literature
Support service use
Support utilization in the area if MS consists primarily of informal support such as family care giving and formal community support such as nursing homes. In the area of informal support, challenges associated with family caregiving in the lives of persons with MS have gained attention. Specifically, a review if MS caregiver literature over the period of 1990-2002 detailed adverse consequences related to caregiving, predominately caregiver spouses, including reduced physical and mental health, decreased economic well-being, and limitations in social engagement and social support (McKeown, Porter-Armstrong & Baxter, 2003). While community supports to assist in caregiving have been identified (Cruise & Lee, 2005; Donohoe, Wineman & O'Brien, 1996; Frankel, 1984; McLaughlin, 1998), most MS caregiving is informal with limited use of community services (McKeown, Porter-Armstrong & Baxter, 2003; O'Hara, de Souza & Ide, 2004). In fact, utilization of these supports is considered to be a matter of chance (Freeman & Thompson, 2000). The few published studies on actual formal service use are from the decade prior, but indicate low utilization of formal services (Aronson, Cleghorn & Goldenberg, 1996) until caregiving burden becomes too high for family members to provide adequate or appropriate assistance (Winslow & O'Brien, 1992). Persons with MS do comprise a small proportion of nursing home residents (Buchanan, Wang, Huang & Graber, 2001); however provision of appropriate specialty services is believed to be rare (Buchanan & Lewis, 1997). Continuing issues in aging-related MS care include coordination of services across acute and community settings (Nodder, et al., 2000), lack of professional knowledge of specific MS-related issues and needs (Kroll & Neri, 2003), unmet service needs (Kersten et. al., 2000), and access barriers (Hardiman et. al., 2003; Van Teijlingen, Friend, & Kamal, 2001).
Research regarding how the person with MS perceives the experience of aging may shed light on ways to improve support service utilization and policy making. Finlayson, Van Denend and Hudson (2004) find that persons aging with MS perceived distinctions between their experience of aging and those of persons aging without disability, such as the need for more assistance at an earlier age, substantial restriction in mobility with resultant limitations in social and community engagement, and not "fitting in" to the existing home and community based service system. These effects of aging with disability are noted to be compounded by decreasing economic resources related to the costs of living with MS (McCabe & DeJudicibus, 2003), employment barriers including inflexible work roles and job tasks and prodding by families to exit the labor force (O'Day, 1998). Finlayson (2004) also identified three main concerns that persons aging with MS have about the future. These include a) continued loss of mobility and independence, b) becoming a burden to family and professional care providers, and c) moving to a skilled nursing facility which results in both financial burden and lost independence.
These fears and concerns by persons aging with MS are supported by research. Minden (2004) profiled a national sample of individuals with MS using the Sonya Slifka Longitudinal Multiple Sclerosis Study and found that individuals with MS sixty-five and older were more likely to be widowed, live alone, have lower average family incomes, have a progressive form of MS, have higher levels of functional disability, and receive more home services. Klewer, Pohlau, Nippert, Haas & Kugler, 2001) found similar population characteristics regarding increased likelihood to live alone and experience functional limitation, decreased mobility, and increased need for assistance. Additionally, the authors identified limitations in social contacts, increases in secondary conditions such as spasticity and incontinence, and substantial prevalence of clinical depression combined with suicidal thoughts. These studies began uncovering the unique characteristics of the MS aging process. In addition, they provided empirical support to Stem's (2005) theory that the interactions between MS and aging increase the complexity if MS and the individual's life. To date, there are no specific theories or models of independent living and long-term care service utilization. Commonly, theoretically grounded service utilization research focusing on people with disabilities (older adults included) employs Aday & Andersen's (1974) behavioral model which identifies predisposing, need, and enabling individual characteristics as they relate to health care access and outcomes. A revision of this model does specifically discuss access of "safety net populations" to health care services; persons with disabilities are included in the safety category under "vulnerable populations" (Davidson, Andersen, Wyn & Brown, 2004, p.23). However, the biases of the original and revised models towards acute health care services make them less relevant for understanding independent living and long-term care service use which often include non-medical supports such as chore services.
Barriers preventing access to health and support services are known. They include cost, coverage, and availability of medical services (Hagglund, Clark, Hilton & Hewett, 2005; Hagglund, Clark, Conforti & Shigaki, 1999), patient access to health care specialists and rehabilitation services (Beatty et al., 2003), and transportation to, and physical accessibility of medical services (O'Day, Palsbo, Dhont, & Sheer, 2002). Satisfaction with health care services is often a barrier to continued use of services particularly among individuals with greater severity of disability (Iezzoni, Davis, Soukup & O'Day, 2002). One noted area of dissatisfaction among persons with MS (Somerset, Campbell, Sharp & Peters, 2001) and people with disabilities in general (Kroll, Beatty, & Bingham, 2003) is the lack of disability-specific practice knowledge among health care providers. This perception is validated by physicians who report low levels of training in chronic illness care (Darer, Hwang, Hoangmai, Bass & Anderson, 2004).
Independent living and long-term care service utilization is studied most frequently among older adults. Existing studies suggest that utilization of informal supports such as caregiving and...
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