print this pageLife Satisfaction Among Persons with Spinal Cord Injuries
Brent W. Chase
Thomas A. Cornille
R. William English
Florida State University
This exploratory study examined the extent that the life satisfaction of persons with traumatic spinal cord injuries is linked to perceived control, verbal communication skills, satisfaction with personal assistance, marital status and handicap. A convenience sample of 158 individuals with such injuries responded to a self report questionnaire. Eighty-nine percent of the respondents chose to use a World Wide Web based form. Although bivariate analyses revealed life satisfaction was significantly related to perceived control, communication skills, satisfaction with personal assistance, marital status, and handicap; perceived control and marital status were the strongest predictors of life satisfaction. The implications of these findings for policy makers, health care providers, and families dealing with rehabilitation are explored.
Every year, approximately 10,000 persons in the United States, typically young adults (New Mobility, 1996), seriously injure their spinal cords and become permanently paralyzed. Through advances in medical treatment, most persons survive a spinal cord injury and live two or more decades postinjury. However, researchers have only recently begun to study the long-term psychosocial implications of a spinal cord injury (Whiteneck, Charlifue, Frankel, et al, 1992). One such psychosocial implication is the person's perceived satisfaction with the quality of his or her life following such an injury. This study examined factors associated with the life satisfaction of persons with a spinal cord injury including biological, personal, and social factors.
Life satisfaction is described as a psychological state that may be broadly associated with psychological well-being (Neugarten, Havighurst, & Tobin, 1961) rather than some "objective" assessment of the person's quality of life. A person may have a high quality of life yet lack satisfaction, whereas another person may have a lower quality of life yet have satisfaction. For instance, a person may have wealth and access to the finer things of life but without true friendship or a sense of purpose he or she may be dissatisfied; while a person whose life is rich in relationships and purpose but lack affluence may be satisfied with his or her life.
Numerous studies have shown that life satisfaction is usually compromised or lowered by spinal cord injury (Decker & Schulz, 1985; Nosek, Fuhrer, & Potter, 1995). Similarly, Neugarten et al. (1961) showed that the mean scores (10.76) for persons with spinal cord injuries were lower than the average scores (13.2) of general population group. Mehnert, Krauss, Nadler, and Boyd (1990) found in their study that 90% of the participants without disabilities were either very satisfied (50%) or somewhat satisfied (40%) with life, whereas 68% of the participants with disabilities were either very satisfied (37%) or somewhat satisfied (31%).
The social and emotional adjustments to a spinal cord injury vary considerably from person to person, with some making satisfactory adjustments whereas others remain chronically distressed (Mackelprang & Hepworth, 1987). Some of the factors found to be related to life satisfaction of persons with physical disabilities include satisfaction with family closeness (Warren, Wrigley, Yoels, & Fine, 1996), accepting responsibility for the injury (Bulman & Wortman, 1977; Warren et al., 1996), social support (Decker & Schulz, 1985; Rintala et al., 1992), leisure (Coyle et al. 1994), satisfaction with personal assistance (Nosek et al., 1995), employment (Crewe & Krause, 1990; Krause, 1990; Mehnert et al., 1990), and residential satisfaction and locus of control (Boschen, 1996).
Just as a spinal cord injury affects many areas of life, many areas of life affect the response to such an injury. Weinberg (1984) asked 22 persons with severe physical disabilities the following question: "If there were a surgery available that was guaranteed to completely cure your disability (with no risk) would you be willing to undergo the surgery?" That author found that only 50% would opt for the surgery. Reasons for rejecting the surgery were contentment with their lives and fear they would be a different person. Half of the people in this sample believed that the inclusion of disability in their life was a positive feature, and one they would not change.
Overall, however, it appears that life satisfaction is diminished after disability. This finding is understandable considering that a spinal cord injury affects most major life activities and necessitates profound changes to cope. Previous research is inconclusive on the impact of the degree of disablement or disability on life satisfaction. The view that severity of disablement lowers life satisfaction is supported by a study of 758 persons with traumatic brain injury (Heinemann & Whiteneck, 1995). They found that physical impairment was the strongest predictor of personal disability and that severity of disability was the strongest predictor of social functioning. Similarly, Nosek et al. (1995) reported that life satisfaction decreases as handicap or obstacles to social functioning increase.
The contrasting viewpoint is that the severity of disability is not a predictor of life satisfaction (Cushman & Hassert, 1992; Whiteneck et al., 1992; Woodrich & Patterson, 1983). These findings may reflect different uses of concepts about sequelae to spinal cord injuries and the relationships between those concepts (World Health Organization, 1980). The World Health Organization model distinguishes between three important concepts, impairment, disability, and handicap. Impairment occurs at the organ level and represents any loss or abnormality of psychological, physiological, or anatomical structure or function. The concept of impairment is limited to the physical level of change for "typical" functioning. For example, loss of strength and range of motion are factors inherent in the area of injury. Disability occurs at the individual level and represents any restriction or lack (resulting from impairment) of ability to perform an activity in the manner or within the range considered typical for a human being. For example, loss of ability to walk is the impairment linked to the injury, while requiring a wheelchair for mobility refers to the disability of the individual. Finally, handicap occurs at the societal level and represents a disadvantage that limits or prevents fulfillment of a role that is typical (depending on age, sex, and social and cultural factors). For example, handicap reflects limitations that result from the lack of accessibility to buildings or sidewalk curbs. These concepts provide important distinctions which were utilized in this study and are used with these specific meanings for this report.
This study is organized around human ecology theory because it provides a holistic view of the relationship between individuals and the interdependent physical, biological, social systems and the events around them (Bubolz, Eicher, & Sontag, 1979). Human ecology theory includes multiple levels of systems that interact. One fundamental premise of this theory is that the greater the distance an external system is from the individual the less perceived influence it plays on the actions of that individual. The influential systems include the internal systems of the individual and the interactions between the individual and family, friends, neighbors, work and recreation associates, and community support services (Berry, 1992). The broader culture is expected to have the least influence on the individual unless its patterns are reinforced at the interpersonal system level.
The constant interaction of demands between family and environment and the resources available to meet those demands create stressful situations for the individual and family. Goodness of fit between the needs of persons with disabilities and corresponding environmental resources (e.g. health care, transportation, and personal assistants) is crucial for persons with disabilities because resources minimize handicap (Mackelprang & Hepworth, 1987). Factors at several levels can be seen to have a potential effect on the life satisfaction of persons with a spinal cord injury. Given this attention to multiple levels of interaction between persons with spinal cord injuries and their environment, the study addressed three related questions: First, at the individual level, "to what extent is there a relationship between perceived personal control and life satisfaction for persons with a spinal cord injury"; second, at the interpersonal level, "to what extent does marital status, intimate communication and satisfaction with personal assistance services contribute to life satisfaction"; and finally, "to what extent does perceived social handicap affect life satisfaction for persons with a spinal cord injury?"
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Article reprinted with permission from the Journal of Rehabilitation, July/August/September 2000, published by the National Rehabilitation Association