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Article Excerpt
This article describes an evaluation of the disability centrality model among a sample of persons with multiple sclerosis (MS). The twofold purpose of this research was first to enhance current understanding of the relationship between MS, quality of life (QOL), and psychosocial adaptation, and second, to further assess the validity of this recently proposed model. The disability centrality model (Bishop, 2005a & b) is a multidimensional, quality of life-based model of the mechanisms of impact and adaptive response to chronic illness and acquired disability.
Multiple sclerosis (MS) is one of the most common acquired neurological diseases (McNulty, Livneh, & Wilson, 2004), affecting approximately 400,000 people in the United States, or about 1 out of every 750 persons (National Multiple Sclerosis Society [NMSS], 2006), and more than one million people worldwide (Munschauer & Weinstock-Guttman, 2005). Typically diagnosed among people between the ages of 20 and 40 years, MS is the leading cause of neurological disability in early to middle adulthood. Multiple sclerosis is currently thought to be an autoimmune disease that affects the central nervous system. Research related to a comprehensive understanding of the complex neurological processes and systems involved in the MS disease process is rapidly evolving, and although there currently is no cure for MS, a variety of medications and treatments have been identified that can slow its course or alleviate symptoms (NMSS, 2006).
Typically presenting with a relapsing-remitting course, after an average of 15 years, most people with MS experience a secondary progressive phase wherein the course becomes either continuously progressive or progresses between exacerbations (Johnson et al., 2006). The various neurochemical processes by which MS affects the central nervous system can result in a broad array of symptoms. The most commonly reported of these include changes in mood and cognitive function, bowel and bladder dysfunction, fatigue, pain, balance problems, difficulties with walking, vision problems, and sexual dysfunction (NMSS, 2006). Because onset is associated with a period of life in which individuals are establishing families, careers, and financial security (King, 2001), MS and its attendant symptoms can create a significant disruption in psychosocial functioning. The illness-related symptoms, medical treatments and their adverse effects, and unpredictable course and prognosis of MS have been associated with a significant impact on quality of life (QOL) and psychosocial adaptation.
Multiple Sclerosis, Quality of Life, and Psychosocial Adaptation
People with MS have frequently been found to report lower QOL than persons without a disability and, in some studies, lower than persons with other chronic illnesses, including rheumatoid arthritis, epilepsy, and diabetes (Benito-Leon, Morales, Rivera-Navarro, & Mitchell, 2003; Pfennings et al., 1999). Understanding the complex and potentially unique mechanisms by which MS affects QOL and psychosocial well-being is a relatively recent endeavor (Benito-Leon et al., 2003), but one that has received increased attention as QOL has gained prominence as an important measure of treatment efficacy and rehabilitation outcome (Johnson, Amtmann, Yorkston, Klasner, & Kuehn, 2004; Wilson, Goetz, & Stebbins, 1996).
Recent studies aimed at delineating the impact of MS on QOL (e.g Benito-Leon et al., 2003; Ford, Gerry, Johnson, & Tennant, 2001; Johnson et al., 2004; Koch, Rumrill, & Roessler, 2001; McReynolds, Koch, & Rumrill, 1999; Miller & Dishon, 2005; Pfennings et al., 1999; Schwartz & Frohner, 2005; Thompson, 1999) have confirmed that this impact results from both the cognitive and physical symptoms of MS, and psychosocial factors. These factors include anxiety associated with the unpredictable course of MS, disruptions or limitations in role functioning, and strain on family relationships and other social support structures (Koch et al; McReynolds et al., Miller & Dishon; Thompson).
It has also been noted in this research that many persons with MS who are experiencing significant health problems and functional limitations nevertheless report high levels of well-being, or subjective QOL (SQOL) (Johnson et al., 2004) and psychosocial adaptation (Antonak & Livneh, 1995; Warren, Warren, & Cockerill, 1991; Wineman, 1990). This apparently "paradoxical" situation (Albrecht & Devlieger, 1999; Johnson et al., 2004) that has also been observed among persons with other chronic illnesses, suggests that although they are the most frequently explored aspects of the MS-QOL relationship, disease symptoms and health status are neither solely responsible for, nor predictably related to SQOL (Ford et al., 2001), or psychosocial adaptation. Rather, researchers working from a variety of perspectives have proposed that the situation involves complex interrelationships between the variables, and various adaptive processes (Johnson et al.).
Although identifying the MS-related variables that are associated with reduced QOL and increased psychosocial distress is important, it is equally important from a clinical perspective to understand both: (a) the mechanisms by which these variables produce these effects, and (b) the processes that people employ to adapt to this impact. Such understanding is necessary to develop both preventative and responsive rehabilitation interventions.
In one of the most extensively researched models of psychosocial adaptation among persons with MS, the illness intrusiveness model, Devins (1994; Devins et al., 1983) proposed that disease and treatment factors associated with chronic illness compromise psychosocial well-being indirectly by: (a) reducing positively reinforcing outcomes of participating in meaningful and valued activities, and (b) reducing feelings of personal control, by limiting the ability to obtain positive outcomes or avoid negative ones. In essence, Devins, and others working with this theory (e.g., Mullins et al., 2001), have identified two underlying and dynamically-related factors that appear critically involved in the MS-QOL relationship: satisfaction and control. Incorporating recent QOL research and perspectives from the fields of clinical and social psychology (e.g., Dembo, Leviton, & Wright, 1956; Schwartz & Sprangers, 2000; Wright, 1983), the disability centrality model incorporates and extends Devins' theory with respect to these factors.
The following discussion provides a brief overview of the disability centrality model. Readers seeking a more in-depth discussion of the model's background and rationale are referred to Bishop (2005a & b). Following this overview, the methods and results of the present study are provided and the clinical implications for rehabilitation professionals explored.
Disability Centrality Model of Psychosocial Adaptation
Although there is no universally accepted definition of psychosocial adaptation, most definitions of this construct share two basic ideas: (a) that it involves a continuous, complex response to an experience that affects multiple dimensions (e.g., social, emotional, physical) of a persons life, and (b) that both the experience and the response are highly subjective and individual in nature (Bishop, 2005b). Given these characteristics, an appropriate framework for assessing psychosocial adaptation must necessarily be both sufficiently broad to capture the impact of chronic illness or acquired disability (CIAD) across domains, and sensitive to the individual's subjective experience of this impact. The first tenet of the present model is that when defined as a subjective and multidimensional construct, QOL represents such a framework.
Quality of life is defined here as the sense of overall well-being resulting from an individual's cumulative evaluation of satisfaction within personally or clinically important domains. This conception of QOL has been alternately referred to as subjective QOL (Cummins, McCabe, Gullone, & Romeo, 1994; Frisch, 1999; Michalos, 1991) and subjective well-being (Ormel, Lindenberg, Steverink, & Verbrugge, 1999). Over the last three decades, QOL research has increasingly supported the existence of a relatively small set of life domains that people consider when evaluating their SQOL (e.g., Bowling, 1995; Cummins, 1997; Frisch, 1999). Among the most frequently and consistently identified domains are physical health, psychological or emotional health,...
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