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COPYRIGHT 2004 American Association of Neuroscience Nurses
Abstract: The purpose of this longitudinal investigation was to identify the effects of external resources (i.e., education, marriage, employment, social support, economic status) on the trajectory of perceived functional limitation among women with multiple sclerosis (MS). We hypothesized that these resources would have a long-term influence upon MS-related functional limitation. As part of a longitudinal study of health promotion and quality of life among persons with MS, we tested hypothesized relationships using data obtained at five time points, using repeated-measures MANOVA. We found that functional limitation scores increased over time &r all participants. In general, women who were unemployed as a result of MS consistently had higher functional limitation scores, and employed women consistently had lower functional limitation scores. Women with lower social support scores consistently perceived greater functional limitation than those with higher social support scores. Women with lower perceived-economic-adequacy scores consistently had higher functional limitation scores than women with higher perceived-economic-adequacy scores. Nurses and other healthcare professionals are in an optimum position to observe and assess the resources of women with MS. They can use presence, listening, and observational skills to identify verbal and nonverbal cues of resource depletion. In addition, they can act as advocates for women with MS and speak out on policy issues and legislation at the local and national levels. Healthcare professionals can thus influence the presence of resources for those who are particularly vulnerable to resource loss, so they can participate successfully in work, recreational, and home environments.
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Multiple sclerosis (MS), a progressive disease of the central nervous system, is one of the most disabling conditions to affect young adults (Boyden, 2000; Paty & Ebers, 1998). Its course is highly variable. Often it begins with a relapsing-remitting pattern of episodic exacerbations, then develops into the secondary, progressive form (Paty & Ebers, 1998; Wallin, Page, & Kurtzke, 2000). Characterized by periods of deterioration and remission, MS often leads to a general deterioration of health (Lublin & Reingold, 1996). The etiology and a cure have not yet been established, and there are no preventive measures (Antonak & Livneh, 1995).
One of the risk factors for developing MS is female gender (Vollmer, Hadjimichael, Preiningerova, Ni, & Buenconsejo, 2002). Of the 350,000 persons affected by MS in the United States, 75% are women (Shabas & Weinreb, 2000). Women experience greater difficulty than men in coping with MS and its related problems (Steck, Amsler, Kappos, & Burgin, 2001). Impairments associated with MS can result in loss or abnormality of mental, physiological, or biochemical/traction (Brandt & Pope, 1997; Wendell, 2001). The symptoms associated with impairment include weakness, sensory dysfunction, fatigue, bladder or bowel disturbances, imbalance, visual loss, and cognitive decline (Ford, Gerry, Johnson, & Tennant, 2001; McCabe & McKern, 2002).
Traditional biomedical management of MS focuses on treating the underlying disease process and managing the secondary symptoms. It includes pharmacologic interventions designed to prevent or slow the illness (Stuifbergen & Becker, 2001). Clinicians and researchers are interested in understanding the disease and developing and implementing interventions that can provide relief from symptoms and maximize the health of women living with MS (Stuifbergen & Roberts, 1997).
Coping with the stress of chronic or disabling conditions requires people to spend their personal, social, and material resources to preserve their lives in the midst of evolving and multiple threats (McDonough, Badley, & Tennant, 1995). Women with MS, like women with other chronic conditions, face multiple, pervasive, longstanding, and unpredictable stressors as a result of living with their functional limitations (Brooks & Matson, 1982; Florian & Dangoor, 1994). For individuals living with a chronic illness, stress may be compounded when their physical, economic, and social resources are threatened or lost (Hobfoll, 2001).
Ensel and Lin (1991) suggest that coping is enhanced by the presence of resources. The conservation of resources theory, discussed more fully below, suggests that the presence of resources can influence the degree of functional limitation that accompanies daily living with MS. To help women living with MS plan and care for their health, it is important to identify their most important resources. This study sought to identify the relationship of several external resources to MS-related functional limitation and examine how these external resources (i.e., education, marriage, employment, social support, economic status) were associated with the trajectory of increasing functional limitation across a 5-year period.
Background
Conservation of Resources (COR) Theory
According to COR theory, resources are objects, conditions, personal characteristics, and energies that individuals value for survival (Hobfoll, 1998). Individuals attempt to obtain, retain, protect, and nurture the resources they value most. Resources (e.g., money, knowledge, social support) may be invested in the event of anticipated or unanticipated losses. Habdell (2001) explains that people store up resources and liken this to an economic investment to protect against stress to aid in stress resistence. People experience stress when loss of resources is threatened, when loss actually occurs, or when they fail to add to their resources following an investment of resources. According to COR theory, avoiding resource loss is more important than gaining additional resources. When individuals experience a chronic lack of resources, they are more vulnerable to further loss of resources (Hobfoll & Freedy, 1993). Vulnerable individuals are especially susceptible to a "loss spiral," in which a loss leads to further loss, often as a result of limited resources or the inability to employ resources (Hobfoll & Jackson, 1991). Finally, COR theory postulates that having one resource is linked to having others; similarly, lacking one resource is linked to lacking others (Hobfoll, 1998).
Resources for Women with MS
Women with MS may be more affected by resource losses than other women because of the challenges and stressors associated with their functional limitations (Stuifbergen, Becker, Rogers, Timmerman, & Kulberg, 1999). Hence, they may be more vulnerable to a loss spiral, in which their losses proliferate and escalate over time (Hobfoll, 2001). It may prove beneficial to identify specific resources valued by women living with MS, because then interventions can be designed to conserve these resources. It is particularly important to identify the resources that are most important before functioning declines.
Marriage: A stable marital relationship may help protect women with MS from stressors and facilitate coping, although the literature is inconsistent. In a study of persons with MS, Zeldow and Pavlou (1984) found being in a marital relationship preserved a sense of well-being, in spite of physical disability and life stress. Hakim et al. (2000) found that 75% of participants with MS (N = 411) did not...
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