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Article Excerpt
Life satisfaction is a construct widely used in psychosocial, medical, and theological studies to evaluate an individual's perceived well-being. A substantial amount of research has been conducted to measure quality of life among people with disabilities from external (e.g., income, education, and health) and internal (subjective well-being) perspectives (e.g., Boschen, 1996; 1998; Crewe, 1997, 2000). Other researchers have also used hope theory to examine peoples' inner strength and their outlook on life (Chang & DeSimone, 2001). However, none of these studies involved people with progressive disabilities.
A good understanding of the rehabilitation client's psychological reactions to chronic illness and disability is the key to the efficient delivery of rehabilitation services and successful rehabilitation outcomes. The conceptual and practical difficulties involved in assessing life satisfaction among people with progressive disabilities (e.g., neuromuscular and neurological diseases) have contributed to the lack of adequate research in this area. The unpredictability of inevitable physical and cognitive changes over the life course of the disability makes it even more difficult to interpret the individuals' changing status in terms of quality of life.
Two common progressive disabilities, namely muscular dystrophy (MD) and multiple sclerosis (MS), are characterized by a gradual deterioration in an unpredictable course over a lifetime. MS is a chronic, progressive neurological disorder affecting the central nervous system and causing cognitive deterioration, impaired mobility, blurred vision, incontinence, paralysis, fatigue, and loss of memory (Livneh & Antonak, 1997). The estimated number of Americans with MS is between 250,000 and 350,000 (Devins & Shnek, 2000), and the affected population worldwide could be as high as 2.5 million (National Multiple Sclerosis Society, 2007). The majority of people with MS are females of European descent with a usual onset of the disability between the ages of 20 and 40.
MD is the taxonomy for a group of over 40 individual neuromuscular diseases. It is estimated that about 200,000 Americans have been diagnosed with MD, a condition typified by continuing degeneration and atrophy of the muscle cells and fibers (Siegel, 1999). Functional limitations associated with MD include difficulties in cognitive, social, physical/vocational, and emotional functioning. Five common types of MD are Becker MD (BMD), Duchenne MD (DMD), Limb-Girdle MD (LGMD), Facioscapulohumeral MD (FSHD), and Myotonic MD (MMD) (Chert, 2001; Livneh & Antonak, 1997). Muscle weakness usually begins in the lower extremities and gradually moves to the upper body for people with BMD and LGMD. The most prominent difference between MMD and other types of MD is that the distal instead of the proximal muscles are the first to be affected by the disease (Jamero & Dundore, 1982). The average onset of the disability ranges from as early as age two in DMD to as late as age 30 in FSHD.
Theoretical Framework and Background
The following sections provide background for the key concepts and theories that are relevant to this study.
Life Satisfaction
According to informed desire theory, life satisfaction is contingent upon satisfying the goals that informed people would desire to pursue (Griffin, 1986). In other words, one ranks preferences among a set of goals. Variables that have been linked to higher life satisfaction for persons with disabilities include age (Mehnert, Krauss, Nadler, & Boyd, 1990), employment status (Viemero & Krause, 1998), income (Boschen, 1996), marital stares (Mehnert et al.), and age at the onset of the disability (Mehnert et al.). However, whether the type of disability influences the coping strategies of choice remain debatable. In a study intended to detect different coping patterns in dealing with illness-related problems, Ahlstrom and Wenneberg (2002) found that, compared to people without disabilities, individuals with MD and post poliomyelitis syndrome are less likely to use a problem-focused strategy, such as accepting responsibility, and are more likely to use an avoidance strategy to distance themselves from challenges. Ahlstrom and Sjoden (1996) indicated that the prevalence of low quality of life in people with MD could be partially explained by their tendency to utilize emotion-focused coping when facing stressful problems, a speculation validated by McCabe and De Judicibus (2005).
Acceptance of Disability
Disability acceptance is an ongoing process which people with disabilities are engaged in throughout their lives. Acceptance of disability has been linked to the individual's perception of disability, and is further shaped by personal beliefs, family support (Alston, McCowan, & Turner, 1994), perceived social attitudes (Li & Moore, 1998), cultural values (Chen, Jo, & Donnell, 2004), and religious orientation and spirituality (Alston et al., 1994). Facing stigma and discrimination, people with less visible disabilities are under tremendous social pressure to "pass" as individuals without disabilities. People with disabilities whose recoveries do not proceed in accordance with the clinically hypothesized stages are often labeled as pathological or deviant (Vash & Crewe, 2004). Olkin (1999) criticizes the adjustment theories espoused by psychologists and rehabilitation professionals for failing to evaluate the progress within the sociocultural milieu of their clients with disabilities.
Martz, Livneh, and Turpin (2000) surveyed individuals with disabilities to determine whether differences in disability acceptance existed between individuals with internal and external loci of control. They found better adjustment to disabilities among those with an internal locus of control than among those with an external locus of control. Hahn (1988) is another opponent of the prevalent belief that acceptance of disability is achieved solely through an internal process. He argues that while the internal locus of control might play an important role in motivating an individual to overcome the challenges accompanied by a disability, rehabilitation professionals sometimes fail to see how a combination of functional limitations and social attitudes could stall the reconfiguration process of a new self-concept.
Religious Coping and Spiritual Well-Being
In recent years researchers have used religion and spirituality to better understand mental and physical health in the rehabilitation population (Powell, Shahabi, & Thoresen, 2003). Ellison (1983) suggests that spiritual well-being has both a religious component and a psychosocial component. In other words, there is a sense of comfort in connecting with God as well as an experiential understanding of life purpose and life satisfaction. In a study of 120 college students, personal spirituality was correlated positively to satisfaction with life (Fabricatore, Handal, & Fenzel, 2000). Therefore, finding a sense of life's meaning can enable one...
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