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 post-injury. 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?”
A sample of convenience was used for this study. All participation in the study was voluntary. The sample included responses from 158 persons between the ages of 21 and 50 years who had experienced a traumatic spinal cord injury that resulted in paralysis and were at least two years post-injury. These criteria were selected to limit possible confounding factors, such as recent Rehabilitation or phenomena associated with the developmental process among younger persons.
The questionnaire was distributed using mailed surveys, the world wide web (WWW), e-text (e-mail) and telephone interviews. Of the respondents, 89% used the WWW (n = 141), 6% used the printed questionnaire (n = 10), 3% requested a telephone interview (n = 4), and 2% used e-text (n = 3). Although access to the Web is not universal, it is a very appropriate technology for gathering information from persons with spinal cord injuries. Currently, the frequent practice is to train persons with a spinal cord injury to be computer literate early in their Rehabilitation.
Persons using Internet access responded via the WWW page from the continents of Asia, Africa, Europe and North America. One hundred and forty-three (90.5%) of the participants identified the United States as their country of residence. Persons from 36 of the 50 states in United States returned questionnaires. Prior to combining samples from different countries, two tests were computed to investigate the potential impact of country affiliation upon the results. Mean comparisons of the interval scaled variables were computed by country affiliation. Using t-tests, no significant mean differences were found on the scores based upon country affiliation. Secondly, data from Canada and all other countries were combined and compared with the United States sample. Again using t-tests, no significant mean differences were found. The results of these tests were the basis for the decision to combine samples.
The respondents were predominantly Caucasian (n = 144, 91%). One hundred and twenty participants were male (76%) and 38 were female (24%). The mean age of the sample was 36 years. Seventy-three percent of the respondents were quadriplegic and 27% were Paraplegic, with an average of 12 years since the time of the injury. Approximately 46% of the respondents had never married while 35% were currently married. Nineteen percent reported being separated, divorced or widowed. Thirteen percent of the sample had earned a college degree prior to their injury, whereas 46% had completed their college education since the time of injury. Seventy-eight persons (49%) were unemployed, 19 persons (12%) indicated working less than 20 hours per week, and 59 persons (37%) were working 20 hours or more each week.
Data Collection Procedures
Using the four formats (WWW, print, telephone interviews, e-text), persons with a spinal cord injury were invited to participate in this study. The invitation letter described the purpose of the study, inclusion criteria, questionnaire formats available, self-disclosure of the researcher’s personal Disability, toll-free phone number, and home page address. The letter was then sent via e-mail to five listservs related to disability, posted on a WWW bulletin board, and mailed to organizations focusing on spinal cord injuries and disabilities. The questionnaire that was posted on the WWW was available for six weeks. During that time, requests for participants in this study were e-mailed to various listservs on three occasions. To be as inclusive as possible, the letter requesting participation in this study was also mailed to all 10 Centers for Independent Living in the state of Florida and to 11 model Spinal Cord Injury Rehabilitation Centers throughout the United States.
Using the World Wide Web is quite appropriate for researchers seeking to target a specific population, such as persons with a spinal cord injury (Schmidt, 1997). The WWW allows any person with access to the Internet, regardless of severity of disability, the opportunity to independently and anonymously complete the questionnaire. The method employed for this study simplified the process for participants, particularly persons with Quadriplegia, by removing barriers such as handling multiple pages of paper and the inconvenience of return mail. We have no data as to why most participants chose to complete the WWW form. Perhaps people chose to participate using the WWW format because they can view and answer the questions independently, anonymously, and at their convenience, without the hassle of shuffling papers, which is often difficult for persons with higher level spinal cord injuries.
Dependent variable. Consistent with the literature review, life satisfaction was used as the dependent variable. Life satisfaction is described as a psychological state that may be broadly associated with psychological well-being (Neugarten et al., 1961). This study used the 18 item Life Satisfaction Index-A (Neugarten et al., 1961) to measure life satisfaction, with a higher score indicating greater life satisfaction. The Life Satisfaction Index-A consists of 18 statements to which respondents indicate whether they agree, disagree, or are undecided. A score for the Life Satisfaction scale is calculated by assigning one point for each appropriate response and summing the values for each participant’s score. Scores range from 0-18, with a higher score indicating greater life satisfaction.
Correlations have been demonstrated between the Life Satisfaction Index-A and other measures of life satisfaction: Life Satisfaction Index A (.989), Life Satisfaction Index-Z (.952), Philadelphia Geriatric Center Morale Scale (.779); (Lohmann, 1977 as cited in Decker & Schulz, 1985). While Reliability analysis by Schulz and Decker (1985) resulted in a Cronbach’s alpha of .76 for the total scale, it resulted in considerably lower values for individual subscales.
Independent variables. Seven independent variables were examined in this study. Possible influences considered were: perceived control, communication skills, personal assistance satisfaction, marital status, handicap, years since injury, and health.
The first independent variable, perceived control, refers to the belief that a person can direct one’s life, has the power to make decisions based upon individual preferences, and can change the course of a person’s life (Nosek, Fuhrer, & Howland, 1992). The Perceived Control subscale of the Personal Independence Profile (Nosek & Fuhrer, 1992; Nosek et al., 1992) was used to measure perceived control. A higher score signified more control.
The second independent variable, communication skills, refers to the clarity and directness used in verbal exchanges of information (Epstein, Baldwin, & Bishop, 1983). The Family Assessment Device was originally designed to assess familial interactions. Items in the Communication Subscale such as “people come right out and say things instead of hinting at them” can be applied to various interpersonal relationships. The Communication Subscale of the Family Assessment Device (Epstein, Baldwin, & Bishop, 1983) was employed in this study to measure verbal communication. A lower score indicated greater clarity and directness in the exchange of information.
The third independent variable, personal assistance satisfaction, is ranked the highest priority by persons with disabilities and professionals researching disabilities (English, 1994). Personal assistants serve to maintain the well-being, personal appearance, comfort, safety and interactions within the community, and society as a whole: this includes tasks which individuals would generally do for themselves if they did not have a disability (Litvak, 1991).
The Personal Assistance Satisfaction Index (Nosek, Quan, & Potter, 1992) was used to measure satisfaction with personal care assistance services. A higher score suggested greater satisfaction. Of our respondents, approximately 30% of the sample did not complete the Personal Assistance Satisfaction Index. A cross tabulation revealed that persons with a missing score tended to be those who were married (n = 28) or persons with an injury level (e.g. C5-8 quadriplegia incomplete and Paraplegia) that may have allowed for greater independence (n = 23).
The fourth independent variable, marital status, was coded from the demographic information provided by each participant. Choices included: never married, married, separated, divorced, and widowed.
The fifth independent variable, handicap, is described as a disadvantage that limits or prevents fulfillment of a role that is typical, depending on age, sex, and social and cultural factors (World Health Organization, 1980). Whiteneck, Charlifue, Gerhart, Overholster, & Richardson (1992) developed the Craig Handicap Assessment & Reporting Technique (CHART) as a way of quantifying the degree to which persons with a spinal cord injury in a community setting are handicapped. A higher score implied less handicap. A total handicap score on the CHART cannot be computed without the presence of all five subscale scores. The CHART was given as part of the questionnaire to the respondents of this study. Seventy-seven respondents (48.7%) had scores for all the five subscales, 65 persons (41.1%) had scores for four subscales, and 16 (10.1%) had scores for three or fewer subscales. Due to the loss of data in excluding those respondents answers on only four subscales, in these cases, missing subscale scores were replaced with the subscale mean for the sample for any person reporting a score on four CHART subscales. This conservative approach to estimating responses from incomplete data has been recommended as one approach to this dilemma in social sciences (SPSS, 1997). All respondents with three or fewer subscale scores were removed from the analysis (n = 16).
The sixth independent variable, years since injury, is included in the demographic information provided by participants. As described earlier, participants on the average were 12 years post-injury.
The seventh variable, health, is addressed through two questions. First, participants were asked to rate their overall physical health during the past year on a scale of 1 to 5, with 1 being poor and 5 being very good. All participants responded to this question. The mean overall physical health during the past year was 4.01 with 76% indicating their health was either good or very good. Second, participants were asked to indicate the number of times they had been hospitalized during the past year. All participants responded to this question. The number of hospitalizations reported included 0 (n = 118, 75%), 1 (n = 30, 19.0%), or at least 2 (n = 10, 6%).
Measurement scores, frequencies, means, and standard deviations were initially computed. The data were analyzed using multiple regression analysis. An alpha level for all statistical testing of significance was preset at the .05 level.
Of the seven independent variables, two (marital status and personal control) contributed to the variance explained by the analysis (see Table 1). Perceived control was the single largest predictor of life satisfaction in the regression analysis and was significant at the .01 level with [Beta] = .26, t = 4.50, p [is less than] .01 (see Table 1), indicating that life satisfaction may be predicted by the amount of control a person perceives.
Multiple Regression Analysis Results for Persons with Spinal Cord Injuries on the Dependent Variable Life Satisfaction (n = 107)
In addition, marital status also contributed to life satisfaction and was significant at the .01 level with [Beta]= -1.98, t = -2.44, p [is less than] .02 (see Table 1). Because of the dummy coding of marital status, the meaning of this contribution was that married persons with spinal cord injury reported higher levels of life satisfaction than those participants who were not married at the time of the survey. Because of the correlation between the various measures, the strongest relationships were first accounted for in the multiple regression. The remainder of the independent variables failed to make a significant independent contribution to the variance explained.
In this study, the independent variables were moderately correlated with one another, and separately correlated with the life satisfaction (see Table 2.).
Correlation Coefficient Matrix for Persons with Spinal Cord Injuries (n=158)
Years since injury (r = .201, p [is less than] .05), control (r = .597, p [is less than] .01), health (r = .184, p [is less than] .01), personal assistance satisfaction (r = .366, p [is less than] .01), and handicap (r = .414, p [is less than] .01) were all positively correlated with life satisfaction. Conversely, the variable communication skills (r = -.200, p [is less than] .05) was negatively correlated with life satisfaction. The negative correlation of communication skills with life satisfaction is a function of the coding schema. For the communications measure, a lower score indicates greater clarity and directness in the exchange of information. Therefore, the greater the clarity and directness of the participant, the greater the life satisfaction.
Using a five-point scale, persons with a spinal cord injury indicated that they were more satisfied with the quality of personal assistance services from other sources ([Bar] x = 3.80) than they were with services from home health care agencies ([Bar] x = 2.92).
Persons with Paraplegia were found to be more effective communicators, perceived themselves as having more control, and encountered fewer limitations than did persons with Quadriplegia. That persons with paraplegia encountered fewer obstacles than persons with quadriplegia supports the findings reported by Whiteneck et al., (1992). However it is important to note that there were no significant group differences in life satisfaction based upon injury level. This result supports the findings by Woodrich and Patterson (1983). Persons with quadriplegia can be empowered by allowing them to exercise greater choice in self directing their assistance services and home life by removing barriers that obstruct the opportunity to participate in community life.
Sixty-five percent of participants (n = 103) identified themselves as being responsible for directing their own personal assistance services. There was a wide range in the hourly amount of personal assistance services received in a typical 24-hour period depending on who provided the service: spouse (n = 47, [Bar] x = 3.27, married respondents only), recruited (n = 75, [Bar] x = 2.88), agency (n = 74, [Bar] x = 2.81), parent (n = 66, [Bar] x = 1.94), relative (n = 59, [Bar] x = .67), and friend (n = 60, [Bar] x = .89). As severity of the Disability decreased so too did the use of personal assistance services.
The questionnaire allowed for more than one source of personal assistance services. The frequency with which each source was selected indicated that persons with a spinal cord injury received assistance from family members (spouse, parent, relative) at a higher rate than any other single category. The per hour rate of pay for personal assistance services decreased when family members provided assistance (spouse = $.40, parent = $.76, other relative = $.57) as compared to agency-provided assistance ($7.14). Medicare, Medicaid, private insurance, or a combination of these three were identified by 27% of the respondents as contributing to the payment for personal assistance services. One hundred and fifteen respondents (73%) reported annual out of pocket medical expenses of $5,000 or less.
The findings from this study especially apply to persons with a spinal cord injury and their families. Others who might benefit from this information are health care providers, Rehabilitation professionals, law makers, and educators. Understanding the components that are important to life satisfaction of persons with a spinal cord injury is the first step in making it a reality.
Persons with a spinal cord injury who took sole responsibility for instructing or directing their personal assistance services were found to perceive more control over their lives. They reported greater satisfaction with personal assistance services and greater life satisfaction. They also reported better physical health. Furthermore, the respondents were found to encounter fewer social handicaps.
Because most persons with a spinal cord injury need assistance in a variety of important tasks for independent living, it is critical that more attention be given to teaching them the skills to direct the services of personal assistants. It is important to note that persons with a spinal cord injury were significantly more satisfied with personal assistance from family members than home health agencies. Moreover, persons with spinal cord injuries who had not been hospitalized during the past year were more satisfied with their personal assistance and reported better physical health. Given these findings, policy makers and health care providers may need to rethink their philosophy on service delivery and allow the consumer more control in service provision. The need for allowing persons with a spinal cord injury to assume more control over personal assistance services is an essential component to a much needed transformation of the national health care system (English, 1994).
The positive influence of employment on life satisfaction has been previously reported (Crewe & Krause, 1990; Krause, 1990; Mehnert et al., 1990). Similarly, this study found that persons employed at least part time were found to perceive more control, experience less handicap, and perceive more satisfaction with life. Economically, the availability of more disposable income, as compared to nonworkers, provides the financial resources to reduce or remove barriers. Psychologically, work well done and relationships with co-workers are validating and contribute to self-esteem. It is important for law makers to take this information into account when deciding what benefits are available to persons with disabilities. Employment incentives, such as tax deductions, would allow these persons, who may earn little above the poverty line, to return to school. Higher education provides greater employment opportunities. Persons in this study with a higher level of education perceived greater control and encountered fewer handicaps.
Better social skills fit closely with greater social opportunities, more effective personal assistance management practices, and closer relationships including marriage. Participants in this study who were married had claimed to have greater communication skills and higher life satisfaction. Married persons with a spinal cord injury reported greater life satisfaction than did unmarried persons. Married persons also reported being more effective verbal communicators and experienced fewer obstacles than did unmarried persons. Because effective communication and social skills are important in the development and maintenance of interpersonal relationships, persons with a spinal cord injury should be offered skill training in communication and human relations. Future research seems appropriate as culture continues to place greater emphasis on personal satisfaction with everyday life. Such research should emphasize all major life activities, including leisure, and all main life domains (physical, mental, psycho-social, and spiritual).
The participants in this study cannot be considered representative of the population of persons with spinal cord injuries for several reasons. This study provided an opportunity for persons with a spinal cord injury to participate in the process by making the survey instruments available in multiple forms, including, paper and pencil, web based forms, e-mail based forms, and telephone interviews. As was described earlier, a disproportionate number of persons with Quadriplegia (73%) responded to the opportunity. It is unclear to what extent this predominant response to the web-based forms by persons with quadriplegia reflects a perceived new opportunity for these persons to express their opinions. This phenomenon needs to be examined further. Based on our review of the literature we also limited the number of possible independent variables that might contribute to life satisfaction. We recognize that important aspects of adult life, such as marital satisfaction and access to leisure activities, need to be examined for their contribution to the life satisfaction of persons with spinal cord injuries. Finally, persons with quadriplegia are more likely to make use of personal assistance than persons with Paraplegia. As a result, about one third of the persons who participated in the study did not complete the measure on satisfaction with personal assistance, most of those who did not complete that measure were either married or had paraplegia. This study does, however, point to important issues that need to be addressed in the next wave of research.
In summary, the major independent variables of perceived control, handicap, marital status, verbal communication, and satisfaction with personal assistance services were found to be significantly related to life satisfaction. The regression analysis showed that perceived personal control and marital status are especially significant predictors of life satisfaction in the regression analysis. Substantial or significant Disability is recognized as a stressor that reduces independence and influence in one’s life, at least in the early stages of adjustment (English, 1995). In turn, many persons, often with the best of intentions, act in an overly controlling or protective manner that reduces self-direction and reinforces dependency (English, 1994). Overall, the findings of this study support the idea that persons with a spinal cord injury should attempt to maximize constructive self-control, while minimizing unwanted intrusive behavior by others.
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