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Factors associated with the quality of life of long-term spinal cord injured persons
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Factors Associated With the Quality of Life of Long-Term Spinal Cord Injured Persons Karen S. Clayton, PhD, Robert A. Chubon, PhD ABSTRACT. Clayton KS, Chubon RA. Factors associated with the quality of life of long-term spinal cord injured persons. Arch Phys Med Rehabil 1994;75:633-8. l The purpose of this study was to identify issues associated with quality of life after spinal cord injury. The Life Situation Survey, a subjective indicator of life quality developed to address issues in chronic disability, served as the primary assessment tool. Data were collected during personal interviews of 100 persons with spinal cord injuries. Educational level, employment status, income, and a number of social activities were found to be associated with perceived life quality. Most notable was a finding that lower ratings of quality of life were associated with greater severity of disability, which was contrary to conclusions drawn from other studies. A plausible explanation for the inconsistency may lie in the different approaches and instruments used to measure quality of life. 0 1994 by the American Congress qf _ Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitkion
Increasingly, quality of life assessment approaches are being used to determine both the effectiveness of rehabilitation efforts and the impact of disabilities. These evaluations of the human condition seem especially relevant to the rehabilitation process, which is holistic in nature. The growing interest throughout the rehabilitation field is reflected in the appearance of published studies in rehabilitation-related journals. I-3 Potential uses include measurement of rehabilitation progress and program outcome, identification of factors that underlie differences in the life quality of persons with disability, long-term monitoring of the status of individuals with disabilities, and ranking the life quality of various disability groups to establish priorities for program development and allocation of resources. The reasons for addressing quality of life in rehabilitation assessment are compelling, but the diversity of measures being used suggests that a widely accepted means of assessing quality of life has not yet evolved. Most studies have been based on improvised quality of life measures, and that diminishes their value. The measures often lack norms and reliability and validity data, rendering interpretation of findings tenuous. Other studies have focused on very narrow aspects of life quality, eg, employment.” These limited-focus indicators ignore the holistic nature of rehabilitation with its ultimate objective of enabling disabled persons to return to healthy, happy, and productive lives.5 Additionally, the diversity of instruments being used severely limits comparison of results from different studies. Most studies to date have taken one of two approaches From the Occupational Therapy Educational Department (Dr. Clayton), Medical University of South Carolina. Department of Educational Psychology (Dr. Chubon), University of South Carolina, Charleston, SC. Submitted for publication March 3, 1993. Accepted in revised form January 3 1. 1994. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the authors are associated. Reprint requests to Karen S. Clayton, PhD, Occupational Therapy Educational Department, Medical University of South Carolina, 171 Ashley Avenue, Charleston, SC 29425. 0 1994 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation 0003-9993/94/75Ot-0012$3.00/O
when assessing the life quality of persons with disabilities. One approach uses objective indicators. Employment status, income, capacity to carry out activities of daily living, and other measures of physical and psychological functioning have been key factors examined. For example, the Arthritis Impact Measurement Scale6 and Psychosocial Adjustment to Illness Scale7 were used in a study that assessed the quality of life of persons with lower extremity impairments.’ Another study used the Sickness Impact Profile,’ which was designed to measure health status, to ascertain the life quality of persons with cerebrovascular disease.” Quality of life was then inferred from the findings, that is, it was assumed that the better one’s standing in the measured domains, the better his or her life quality. The necessity of relying on inference is an inherent limitation of using objective indicators. Although common sense suggests that they are legitimate indicators of quality of life, their validity is often diminished by other factors.” For example, a relatively high income may be substantially drained by medical expenses, resulting in an impoverished lifestyle. In fact, researchers have generally found that the relationship between income and quality of life is limited.12 A more recent assessment approach in disability and other quality of life research has focused on the use of subjective indicators.12,‘3 In this approach, the person’s perception of how well he or she is faring with regard to various aspects of life is measured with rating scales. These scales reflect the person’s satisfaction with aspects of their life situation thought to be affected by the particular disability or condition under study. The use of subjective measures has considerable merit because it gets at individuals’ points of view and ascribes meaning to their situation. That is important because people are likely to respond or behave in accordance with the way they perceive things to be. On the other hand, most available subjective measures have been developed for use with very specific populations, eg, elderly persons, and their appropriateness for use with persons with disabilities is questionable. For example, the Life Satisfaction Index-A (LSIA)14 has been used to examine correlates of life satisfaction and spinal
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cord injury.’ The LSIA, however, was developed for use in studying aging issues and reportedly is most suitable for use with persons more than 65 years old.15 Thus, its appropriateness for use with the relatively young-aged spinal cord injured population seems questionable. Similarly, another study of spinal cord injury* used a modification of a quality of life assessment instrument originally developed for use with persons with cancer.“j In addition to possible limited item relevance, no reliability studies were apparently conducted with the revised scale. Interestingly, neither the study by Fuhrer and colleagues’ or Nieves and coworkers2 found relationships between quality of life scores and extent of paralysis. Whereas life satisfaction appeared to be associated with factors such as social integration, mobility, perceived control, and self-assessed health, no significant correlation was found between life satisfaction and extent of paralysis.’ Similarly, coping effectiveness and perceived quality of life were found to be correlated, but no difference between quadriplegic persons and paraplegic persons was found with regard to their perceived life quality.’ Those finding are inconsistent with quality of life studies of other disability categories, for example, mental retardation, in which life quality has been associated with severity.17 Although the improvised quality of life measures used in the spinal cord injury studies may have been sensitive enough to detect a general relationship to disability, they may lack sufficient sensitivity to make finer discriminations. The shortcomings of the instruments being used to examine the quality of life of persons with disabilities have provided impetus for development of more suitable tools. The Life Situation Survey (LSS) has been developed for use with a spectrum of disability categories commonly engaged in rehabilitation programming, as well as the nondisabled population’s The intent was to create an instrument that would permit a broad range of comparison studies. Results in published reports support its use and encourage additional examination. ‘9,2oIn those studies, it discriminated between nondisabled persons and groups undergoing treatment for back injury and alcoholism. A more recent and extensive study demonstrated effectiveness in assessing the life quality of persons with varying levels of mental retardation who were residing in several different settings.“’ The reported research encouraged a study using the Life Situation Survey to identify factors associated with perceived quality of life of spinal cord injured persons postrehabilitation. The heightened suicide rate and number of other causes of premature death attributable to neglect suggest that the life quality of many persons with disabilities may be problematic.22 METHODS
Procedure This study was one component of a multifaceted survey of a sample of South Carolina residents with spinal cord injuries. Demographic and quality of life assessment data were acquired between June, 1990 and June, 1991, covering areas ranging from employment status to the use of technology. The information was gathered during l-hour to 2-hour long personal interviews arranged at locations convenient to
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participants, such as follow-up clinics, homes, and employment sites. The interviews were conducted by the principal investigator, who was an occupational therapy instructor, and five occupational therapy students who were trained in interviewing techniques. The training followed guidelines established for health care survey research2’ and included two practice interviews.
Sample Criteria for inclusion required that (1) there was no evidence of cognitive dysfunction due to concomitant head injury, (2) potential participants had at least a ninth grade education, (3) the individual was at least 2 years post-injury, and (4) the injury was of sufficient severity to necessitate the use of a wheelchair as the primary means of mobility. The first two criteria stemmed from the need to insure that the participants would be able to reliably complete the various instruments used to gather information and assess life quality. Because quality of life issues are most relevant to long-term, permanent residual disability, the third criterion was established to be reasonably certain participants were beyond the acute treatment and physical restoration stages. The fourth criterion reflected the desire to create a sample representative of persons with the severity of spinal cord injury typically encountered in the rehabilitation milieu. Potential participants were identified from three sources. An initial pool of 148 persons who met the criteria for inclusion was developed from records of persons treated at a medical university hospital between 1980 and 1988. Fifty-six of the 148 volunteered to participate after receiving letters of invitation. Subsequently, 20 more volunteers resulted from mailings to 68 members of local Spinal Cord Injury Association chapters, and 24 additional participants were recruited from 42 individuals referred by therapists located throughout South Carolina. These 100 voluntary participants represented an overall participation response rate of approximately 39%. Initial screening for conformity to the criteria was done by a review of medical records when available and direct inquiry during interview scheduling. The information was confirmed during interviews by participant self-report on a demographic questionnaire, and by interviewer observation. Though no diagnostic testing was conducted to detect cognitive dysfunction, the ability to respond appropriately to interviewer questions ruled out gross deficits. Obtained demographics included gender, race, age, marital status, educational level, employment, income, severity (level) of injury, and rehabilitation experience. Eighty percent of the sample was male. Sixty percent of the sample was Caucasian, 36% was Afro-American, and 4% belonged to other ethnic groups. The mean age was 33.7 years with a range of 17 to 64 years. The mean age at time of injury was 27.3 years, with a range of 14 to 58, and mean duration of injury was 6.87 years, with a range of 2 to 37 years. Fifty percent of the sample were single, 29% married, 2% separated, 14% divorced, and 5% were widowed. The mean educational level was 12.6 years, ranging from 9 to 23 years. Nineteen persons were employed in full-time jobs, 10 held part-time positions, 3 were involved in noncompetitive employment activities, 12 indicated student status, 43 reported
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being unemployed, 8 considered themselves to be homemakers, and 4 were retired. The number of individuals in delineated annual income ranges were 28 under $8,000; 26 $815,000; 27 $16-30,000; 7 $3 l-50,000; and 1 more than $75,000. The ratio of persons with quadriplegia to those with paraplegia was 66:34. With regard to rehabilitation experience, 66 participants received services in hospital-located rehabilitation units, 27 were treated in regional spinal cord injury centers, and 6 reported receiving no rehabilitation.
Instruments The LSS was the primary instrument used to assess perceived life quality.24 This Likert-type scale is comprised of 20 items rated on a continuum ranging from “agree very strongly” to “disagree very strongly.” The items were developed around 10 commonly accepted quality of life domains, such as income and health, together with 10 additional areas derived through a critical incidents-based study of adults with cancer, diabetes, heart disease, multiple sclerosis, spinal cord injury, muscular dystrophy, epilepsy, and blindness. Examples of focus areas derived from the critical incident studies include mobility, autonomy, egalitarianism, and social support. The readability level of the items was estimated to be in the fourth to fifth grade range. Half the items are negatively phrased and randomly interspersed with the others. Items are scored on a 1 to 7 point scale, with negative items scored in the reverse direction. Thus, the maximum and minimum scores are 140 and 20, with higher scores reflecting higher life quality. Several reliability and validity studies have been conducted supporting the technical soundness of the LSS and its use with such populations. Reliabilities (Cronbach’s alpha) based on inter-item consistency have ranged from the low .7Os to the mid .9Os for most of the disabled and nondisabled population samples to which it has been administered.24 For example, reliability coefficients obtained with samples of arthritic clinic patients, persons with hospital discharge diagnoses reflecting cardiac disorders, persons on home dialysis, and persons hospitalized with a general diagnosis of back pain were reported to be .90, .89, JO, and .92, respectively. Test-retest reliability for a 1 week interval was found to be .91. Validity studies demonstrating the instrument’s effectiveness in discriminating between samples considered to differ in life quality were also reported. Prison inmates, for instance, scored significantly lower than university students. Samples of persons with chronic back pain, spinal cord injury, and mental retardation scored significantly lower than samples of healthy nondisabled persons. Also, pain clinic patients scored higher following completion of a 25-day treatment regimen than at the onset of the program. Other published studies support the instrument’s use with persons with back problems, alcoholism, and mental retardation.‘9-2’ Norms from several different categorical samples are available for comparison in the manual developed for the instrument.“” To confirm the construct validity of the LSS, 3 scales of a revised version of the Health Insurance Study-General Well Being Scale, and a companion instrument, the Social Health
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Battery, were also used.25 The revised General Well Being Scale contains subscales measuring anxiety, depression, positive well-being, and self-control. Correlational studies between the four subscales of the General Well Being Scale and mental health-related variables such as stressful life events and life satisfaction support its validity.26 Despite the fact that the subscales have only three to five items each, their reliability has been found to be adequate, with internal consistency reliability coefficients averaging .90. The developer of the revised General Well Being Scale recommended selective use of the sub-scales on the basis of appropriateness. Following that advice, the self-control subscale items were not used in this study because they relate to mental stability. One of the items, for instance, asks if the respondents have any reason to feel they are losing their mind. The anxiety, depression, and positive well-being subscales that were used comprised a total of 12 items. The items from the three subscales focused on matters such as pressure, tension, mood, and outlook. For example, one item asks if respondents had been anxious, worried, or upset during the past month, and another asks if there were interesting things going on in their life. The items are in a format requiring respondents to chose one of six listed answers developed to represent a positive-negative continuum, with assigned scores ranging from one to six. The resultant total score range is from 12 to 72, with higher scores being more positive. The Social Health Battery is comprised of eight questions that relate to social participation. The battery does not constitute a scale, and therefore, does not yield a score. Rather, responses to items are treated individually. The specific item areas are listed in table 3. Items 1, 2, and 7 are formatted to require respondents to provide a specific number, while the remaining questions require respondents to select from a list of frequencies.
RESULTS Based on the responses of the 100 participants, the reliability coefficient (Cronbach’s alpha) for the Life Situation Survey was determined to be .87, and for the General Well Being Scale, .88. The mean LSS score for the sample was found to be 89.5 1 (SD = 15.05), and the mean for the General Well Being Scale was 48.98 (SD = 9.46). The correlation between LSS and the General Well Being scale was .74. The mean ratings for each of the 20 items on the LSS are contained in table 2. Two procedures were used to determine whether there Table 1: Correlations Between Life Situation Survey Total Scores and Social Health Battery items Social Health Battery Item Foci 1. 2. 3. 4. 5. 6. 7. 8.
Frequency of visits with neighbors Number of close friends Frequency of interaction with friends and relatives Number of in-home visits with friends Number of out-of-home visits with friends Frequency of attendance at religious services Number of voluntary memberships in social organizations Activity level in social organizations
*p < .OS based on a critical
.2-J .O’)
.40* .34* .2? .2s .49* .45*
value of .30.
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Table 2: Item Mean Scores for the Life Situation Survey Listed in Decreasing Order Item
Mean
SD
*8. My future is hopeless. 10. There are always people willing to help me when I really need it. _ _ _ *14 I don’t have any fun or relaxation. 9. I am a happy person. 1. I feel safe and secure. “7. I don’t eat very well. *13. I don’t get the love and affection I need. *20. I have too little control over my life. 12. My sleep is restful and refreshing. 2. My health is good. 16. I am able to go when and where I need to go. *18. There is little that I am able to enjoy in my community and surroundings. 5. I am better off than most people in this country. *3. I have too few friends who I can count on. *19. I am exhausted well before the end of the day. *6. I feel constantly under pressure. 4. I like myself the way I am. 15. Services provided by the government and other public agencies meet my needs. 17. I am satisfied with my main life role now as a worker, student, homemaker, retiree, patient or other classification. *11. My income is a constant source of worry.
5.44
I .27
5.07 5.05 5.01 4.81 4.74 4.70 4.65 4.50 4.48 4.39
1.41 1.09 1.31
I .62 I .47 I .48
4.39 4.37 4.34 4.18 4.15 3.84
1.25 I .42 I .I2 1.50 1.40 I .66
1.40 1.47 I .55 1.47
calculate the critical value necessary to reach significance rather than relying on p levels. A value of .30 or larger was determined to meet the .05 criterion. A significant correlation coefficient of .30 was found between Life Situation Survey scores and income. An r of .41 was calculated between LSS scores and years of education, also falling above the critical value. Neither age (r = .06) or duration of injury (r = .13) approached the significance criterion. The Social Health Battery was designed to obtain objective data reflecting involvement in several different social activities and the items constitute separate variables. The results of the correlational analysis of the Life Situation Survey total scores and each Social Health Battery item are listed in table 1. Four items were found to be significantly correlated with the LSS scores, with three others approaching the critical value. DISCUSSION
Because the sample was not randomly drawn, caution should be used when attempting to generalize the findings 3.81 1.58 from this study. Although the sample was relatively large and its gender proportions, age at the time of injury, and etiology of injury are consistent with national spinal cord 3.81 1.60 injury statistics,*’ there are notable differences. The percent3.78 1.64 age of Afro-American participants approximates that in Item score range = l-7. South Carolina, but is higher than the proportion in the na* Items scored in reverse order tional population. Additionally, although the ratio of quadriplegics to paraplegics (66:34) appears to differ from the national statistic (53:47),*’ the difference was not found to was a relationship between quality of life (LSS) scores and be statistically significant (p = .19) when subjected to x2 demographic variables. For categorical variables, such as testing. It had been posited that the lower proportion of gender and marital status, t-tests or ANOVAs and a multiple paraplegics, at least in part, may have resulted from the comparisons procedure (Bonferroni) were used, depending screening criterion that required injuries to be of sufficient on whether the category contained two or more than two severity to necessitate the use of a wheelchair. Thus, some groupings. Correlation coefficients were calculated to indilow-level injured persons may have been excluded because cate relationships between LSS scores and variables that they were ambulatory. Finally, because participation was produced interval data, for example, age. voluntary, it is possible that the sample represented the more Categorical variables examined were gender, race, marital active and positive feeling spinal cord injured persons residstatus, severity of disability (paraplegia or quadriplegia), etiing in the state. Experience suggests that persons who are ology, employment status, and type of facility where rehabilmost despairing are least likely to become involved in such itation was received. Life Situation Survey mean scores were research activities. found to be significantly different (t = 3.42, p < .OOl) for the group with paraplegia and the group with quadriplegia. Their respective mean scores were 96.32 (SD = 13.52) and Table 3: Life Situation Survey Mean Scores for Employment Status Categories 86.00 (SD = 14.67). Eight employment status categories used in data collection were collapsed to four using logical Standard grouping to facilitate statistical analysis. The delineated Category n Mean Deviation groups consisted of “employed,’ ’ “unemployed,’ ’ ‘ ‘stuEmployed dents,” and “other,’ ’ and are shown with their subgroups Full-time 19 90.42 14.56 Part-time 10 and LSS means in table 3. The ANOVA indicated a signifi87.70 13.23 Noncompetitive 3 96.33 6.1 I cant main effects difference (F = 3.89, df = 3/96, p = .Ol). Combined total 32 90.13 13.49 Comparison of the four category means using the Bonferroni Unemployed 43 84.91 14.53 procedure revealed a significant difference (p < .05) beStudent 12 99.83* 19.05 tween the students who scored higher than the groups classiOther Homemaker 8 94.50 II.94 fied as being “employed,” “unemployed,” and “others.” Retired 4 90.50 11.71 Differences between the other categorical variables did not Undefined 1 100.00 .Oo approach the adjusted significance level. Combined total I3 93.69 11.16 Interval variables examined through correlational studies Possible LSS score range = 20.140. included age, duration of injury, income, educational level, (p < .05). and the Social Health Battery items. Given the large number * Significantly higher than the Employed (Combined total), Unemployed, of variables correlated, a Bonferroni procedure was used to Student, and Other (Combined total) category means.
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The reliability coefficients of .87 and .88 for the Life Situation Survey and the adapted General Well Being Scale are consistent with those reported in previous studies, and are sufficiently high to indicate that the instruments were appropriately completed by the participants.24.‘5.‘8 The .74 correlation between the LSS and the GWBS indicates that approximately 55% of the variance is shared. That finding supports the construct validity of the LSS and reflects its developmental underpinnings, which were based on incorporation of a balance of general use quality of life domains and others particularly germane to persons with disabilities. As was noted, the GWBS was developed for use with the general population and lacks items derived from disability experience. It is widely accepted that a healthy social life is essential to life quality, and Social Health Battery (SHB) items were expected to correlate positively with LSS scores. Only item 2 did not approach the significance level. Given the modest correlations between the other items and the LSS scores, however, the overall results seem to reflect considerable difference between the two instruments. The limited relationships may be attributed to the fact that the Social Health Battery’s emphasis is quantitative, assessing social activity level, whereas related LSS items (3, 10, and 13) get at qualitative issues, ie, satisfactoriness of social relationships or activities. Possible explanations of why the SHB item dealing with number of close friends did not at least approach the significance level are more elusive. The total sample Life Situation Survey mean score of 89.5 1 suggests that spinal cord injured participants perceived and rated their life quality to be somewhat lower than nondisabled and some disabled groups. For example, in the LSS ManuaL2” the score reported for graduate students at a southeastern university, who were identified as having a high life quality, was 107. Other norms reported include scores of 93 for cardiac patients, and 94 for persons with rheumatoid arthritis. Among the lower scoring norm groups, nondisabled medium security prison inmates obtained a score of 74 and a group of individuals hospitalized for treatment of back pain had a mean score of 8 1. The general guideline suggested for interpreting scores is that scores of 100 or higher have been associated with groups considered to have a high life quality, whereas those with obtaining scores below 80 have been experiencing a very poor quality of life. In that light, the findings from this study indicate that persons with spinal cord injuries fall about midpoint. However, some caution must be used in considering the magnitude of the disparities because the reported norms were gathered 2 or more years prior to this study, and there is reason to believe that there has been a growing perception of declining life quality in the United States during the past few years attributable to the economic downturn. Thus, a temporal difference in gathering the data may be responsible for some of the disparity between scores. As can be seen in table 2, the mean ratings of most items on the LSS are clustered slightly above the midpoint (4) of the rating continuum, with a few being noticeably high or low. Items 4, 1 I, 15, and 17, reflecting self-esteem, income, public services, and life role, were lowest, and fell on the negative side of the rating continuum. Items 8, 9, 10, and
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14 constitute a high end score cluster. The domains represented by the high score items are outlook, mood/affect, social support, and leisure. It is not surprising that income is one of the areas that appear more problematic given the fact that more than half the participants reported annual incomes of $15,000 or less, with 28% actually having incomes below $8,000. The low incomes are also consistent with the high unemployment rate of 43%. That can be compared with an average unemployment rate of 5.5% for working-aged South Carolinians during the data collection period determined by the South Carolina Employment Security Commission. Limitations in the availability of services such as attendant care and accessible transportation in South Carolina may account for the low rating on the public services-focused item. Negative body image, high rate of unemployment, and poverty level incomes are plausible explanations for the ratings dealing with self-esteem and satisfaction with life role. Nevertheless, it is encouraging that despite the cluster of negatives, the sample of spinal cord injured persons as a whole appeared to maintain a positive outlook and disposition and had positive social relationships. The findings from the analyses designed to identify demographic factors associated with quality of life revealed that employment status, income, educational level, severity of disability, and four of the social activity areas focused on by the Social Health Battery were significant. Because income and educational level are interrelated and usually found to be positively correlated with quality of life, this finding was not unexpected. However, the results of the analysis of employment status did not confirm the expectation that employment would be associated with higher quality of life scores than unemployment, although the limited nonsignihcant difference was in the expected direction. The closeness of the LSS scores of 90.13 and 84.9 1 for these two status groups may be attributable to an excess of poor quality, unrewarding jobs among the employed. Moreover, it has been well established that the substantial amount of money consumed by disability-related needs when employment income becomes sufficient to render individuals ineligible for Medicaid and other benefits frequently reduces them to a poverty-like condition.‘” These explanations seem consistent with the finding that income, when correlated with LSS scores, demonstrated a significant but relatively limited relationship (r = .30). They are also consistent with the low ratings calculated for the LSS items that were focused on income and satisfaction with life role. Somewhat less expected was the finding that those individuals who indicated student status had significantly higher scores than the employed, unemployed, and “other” groups. However, considering that the student role generally carries with it a stimulating and relatively supportive environment with broad access to social activities, the finding is not SLITprising. It is also likely that many individuals in the student group were not confronted with some of the “real life” problems of independent living. Perhaps the more interesting finding was that the Lift Situation Survey scores were inversely associated with severity of injury, that is, the mean score calculated for the quadriplegic participants was significantly lower (86.00) Arch Phys Med Rehabil Vol75, June 1994
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than that of the paraplegic group (96.32). Although intuitively the finding seems appropriate, it is inconsistent with other recently reported research studies.“’ It can be speculated that differences of samples, severity classification schemes, and methods of data analysis may account for the inconsistency with the other studies. However, another plausible explanation may lie in the difference in quality of life assessment approaches used in the studies. Both previous studies used instruments designed for use with other populations and may lack the precision necessary for detecting severity. On the other hand, the LSS was specifically developed as a quality of life measure for use with disability populations including persons with spinal cord injuries. The finding that four of the Social Health Battery items were correlated with Life Situation Survey scores is consistent with recent findings of Fuhrer and associates’ regarding the inter-relatedness of the life satisfaction of persons with spinal cord injuries and social support. Thus, this study provides additional indication that social support issues warrant a priority position in rehabilitation programming. It is becoming evident that quality of life is likely to diminish if persons with spinal cord injury do not have adequate social supports. CONCLUSIONS This study supports previous conclusions that income, educational status, and social activities are associated with the perceived life quality of persons with spinal cord injuries. Results of this study also provide further evidence that socialization issues warrant a priority position in rehabilitation efforts. Rehabilitation specialists may need to explore and facilitate participation in social activities following discharge. Transitional community integration programs should include learning to circumvent socialization barriers. However, although opportunity for social interaction appears to be a matter for concern, the quality of interpersonal relationships must also be addressed. Income, essential public services, self-esteem, and life role also appear to be areas that are relatively unsatisfactory to long-term spinal cord injured persons. The persistence of these problems emphasizes the need for long-term follow-up services. The finding that persons with spinal cord injuries who were employed did not perceive their quality of life to be significantly better than those who were unemployed underscores the limitations in inferring life quality from objective indicators. Finally, the relationship between severity of disability and quality of life requires additional study for clarification, given the difference in findings from this and other studies. Generally, the study supports the use of the Life Situation Survey for assessing life quality of postrehabilitation spinal cord injured persons. The findings provide meaningful insights into how well individuals who have participated in the rehabilitation process are faring and where problems persist. Such information is crucial to enhancing rehabilitation efforts and promoting quality of life following disability. References 1. Fuhrer MJ, R&ala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among Arch Phys Med Rehabil Vol75,
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persons with spinal cord injuries. Arch Phys Med Rehabil 1992;73: 552-7. Nieves CC, Charter RA, Aspinall MJ. Relationship between effective coping and perceived quality of life in spinal cord injured patients. Rehabil Nurs 1991; 16:129-32. Eisenberg MG, Saltz CC. Quality of life among aging spinal cord injured patients. Paraplegia 1991;29:514-20. Clayton KS. Determinants of quality of life in individuals with spinal cord injury [dissertation]. Columbia (SC): University of South Carolina, 1992. Somers MF. Spinal cord injury: functional rehabilitation. East Norwick (CT): Appleton & Lange, 1992. Meenan RF, Gertman PM, Mason JH. Measuring health status in arthritis: the arthritis impact measurement scales. Arthritis Rheum 1980;23:146-52. Derogatis LR. Psychosocial adjustment to illness scale-self report version. Baltimore: Clinical Psychometric Research, 1977. Lemer RK, Esterhai Jr JL, Polomono RC, Cheatle MC, Heppenstall RB, Brighton CT. Psychosocial, functional, and quality of life assessment of patients with posttraumatic fracture nonunion, chronic refractory osteomyelitis, and lower extremity amputation. Arch Phys Med Rehabil 1991;72:122-6. Bergner M, Bobbitt RA, Pollard WE, Martin DP, Gilson BS. The sickness impact profile: validation of a health status measure. Med Care 1976; 14:57-67. Baird AD, Adams KM, Ausman JI, Diaz FG. Medical, neuropsychological, and quality-of-life correlates of cerebrovascular disease. Rehabil Psych 1985;30:145-55. Fabian ES. Quality of life: a review of theory and practice implications for individuals with long-term mental illness. Rehabil Psych 1990;35:161-70. Campbell A, Converse PE, Rodgers WL. The quality of American Life. New York: Russell Sage Foundation, 1976. McCauley C, Bremer BA. Subjective quality of life measures for evaluating medical interventions. Eval Heal Prof 1991; 14:371-87. Adams DL. Analysis of a life satisfaction index. J Gerontol 1969;24:470-4. Neugarten BL, Havighurst RJ, Tobin ST. The measurement of life satisfaction. J Gerontol 1961; 16:134-43. Padilla GV, Presant C, Grant MM, Metter G, Lipsett J, Heide F. Quality of life index for patients with cancer. Res in Nurs Health 1983;6: 11726. Borthwick-Duffy SA. Quality of life and quality of care in mental retardation. In: Rowitz LU, editor. Mental retardation in the year 2000. New York: Springer-Verlag, 199253-65. Chubon RA. Development of a quality-of-life rating scale for use in health care intervention. Eval Heal Prof 1987; 10:186-200. Chubon RA. Quality of life measurement of persons with back problems: some preliminary findings. J Applied Rehabil Couns 1985; 16(2):31-4. Stewart WW, Chubon RA, Weldon NL. Utilization of a quality-oflife indicators based assessment instrument in alcoholism treatment programs. Voc Eva1 Work Adjust Bul 1989;22:31-4. Vandergriff DV. The psychological and psychosocial impact of various residential milieus on adults with mental retardation [dissertation]. Columbia (SC): University of South Carolina, 1991. DeVivo MJ, Kartus PL, Stover SL, Rutt RD, Fine PR. Cause of death for patients with spinal cord injuries. Arch Intern Med 1989; 149:17616. Gordon RL. Interviewing: strategy, techniques and tactics. Chicago: Dorsey, 1987. Chubon RA. Manual for the life situation survey. Columbia (SC): Author, 1990. Ware JE, Johnston SA, Davies-Avery A, Brook RH. Conceptualization and measurement of health for adults in the health insurance study. vol 3. Santa Monica, CA: Rand Corp, 1979. Brook RH, Ware JE, Davies-Avery A, et al: Conceptualization and measurement of health insurance study: Overview. ~013. Santa Monica (CA): Rand Carp, 1979. Stover SL, Fine PR, editors. Spinal cord injury: the facts and figures. Birmingham: University of Alabama, 1986:29. Anderson LW. Assessing affective characteristics in the schools. Boston: Allyn and Bacon, 1981:llO. Berkowitz ED. Disabled policy. Cambridge: Cambridge University, 1987.
Factors Associated With the Quality of Life of Long-Term Spinal Cord Injured Persons Karen S. Clayton, PhD, Robert A. Chubon, PhD ABSTRACT. Clayton KS, Chubon RA. Factors associated with the quality of life of long-term spinal cord injured persons. Arch Phys Med Rehabil 1994;75:633-8. l The purpose of this study was to identify issues associated with quality of life after spinal cord injury. The Life Situation Survey, a subjective indicator of life quality developed to address issues in chronic disability, served as the primary assessment tool. Data were collected during personal interviews of 100 persons with spinal cord injuries. Educational level, employment status, income, and a number of social activities were found to be associated with perceived life quality. Most notable was a finding that lower ratings of quality of life were associated with greater severity of disability, which was contrary to conclusions drawn from other studies. A plausible explanation for the inconsistency may lie in the different approaches and instruments used to measure quality of life. 0 1994 by the American Congress qf _ Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitkion
Increasingly, quality of life assessment approaches are being used to determine both the effectiveness of rehabilitation efforts and the impact of disabilities. These evaluations of the human condition seem especially relevant to the rehabilitation process, which is holistic in nature. The growing interest throughout the rehabilitation field is reflected in the appearance of published studies in rehabilitation-related journals. I-3 Potential uses include measurement of rehabilitation progress and program outcome, identification of factors that underlie differences in the life quality of persons with disability, long-term monitoring of the status of individuals with disabilities, and ranking the life quality of various disability groups to establish priorities for program development and allocation of resources. The reasons for addressing quality of life in rehabilitation assessment are compelling, but the diversity of measures being used suggests that a widely accepted means of assessing quality of life has not yet evolved. Most studies have been based on improvised quality of life measures, and that diminishes their value. The measures often lack norms and reliability and validity data, rendering interpretation of findings tenuous. Other studies have focused on very narrow aspects of life quality, eg, employment.” These limited-focus indicators ignore the holistic nature of rehabilitation with its ultimate objective of enabling disabled persons to return to healthy, happy, and productive lives.5 Additionally, the diversity of instruments being used severely limits comparison of results from different studies. Most studies to date have taken one of two approaches From the Occupational Therapy Educational Department (Dr. Clayton), Medical University of South Carolina. Department of Educational Psychology (Dr. Chubon), University of South Carolina, Charleston, SC. Submitted for publication March 3, 1993. Accepted in revised form January 3 1. 1994. No commercial party having a direct financial interest in the results of the research supporting this article has or will confer a benefit upon the authors or upon any organization with which the authors are associated. Reprint requests to Karen S. Clayton, PhD, Occupational Therapy Educational Department, Medical University of South Carolina, 171 Ashley Avenue, Charleston, SC 29425. 0 1994 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation 0003-9993/94/75Ot-0012$3.00/O
when assessing the life quality of persons with disabilities. One approach uses objective indicators. Employment status, income, capacity to carry out activities of daily living, and other measures of physical and psychological functioning have been key factors examined. For example, the Arthritis Impact Measurement Scale6 and Psychosocial Adjustment to Illness Scale7 were used in a study that assessed the quality of life of persons with lower extremity impairments.’ Another study used the Sickness Impact Profile,’ which was designed to measure health status, to ascertain the life quality of persons with cerebrovascular disease.” Quality of life was then inferred from the findings, that is, it was assumed that the better one’s standing in the measured domains, the better his or her life quality. The necessity of relying on inference is an inherent limitation of using objective indicators. Although common sense suggests that they are legitimate indicators of quality of life, their validity is often diminished by other factors.” For example, a relatively high income may be substantially drained by medical expenses, resulting in an impoverished lifestyle. In fact, researchers have generally found that the relationship between income and quality of life is limited.12 A more recent assessment approach in disability and other quality of life research has focused on the use of subjective indicators.12,‘3 In this approach, the person’s perception of how well he or she is faring with regard to various aspects of life is measured with rating scales. These scales reflect the person’s satisfaction with aspects of their life situation thought to be affected by the particular disability or condition under study. The use of subjective measures has considerable merit because it gets at individuals’ points of view and ascribes meaning to their situation. That is important because people are likely to respond or behave in accordance with the way they perceive things to be. On the other hand, most available subjective measures have been developed for use with very specific populations, eg, elderly persons, and their appropriateness for use with persons with disabilities is questionable. For example, the Life Satisfaction Index-A (LSIA)14 has been used to examine correlates of life satisfaction and spinal
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cord injury.’ The LSIA, however, was developed for use in studying aging issues and reportedly is most suitable for use with persons more than 65 years old.15 Thus, its appropriateness for use with the relatively young-aged spinal cord injured population seems questionable. Similarly, another study of spinal cord injury* used a modification of a quality of life assessment instrument originally developed for use with persons with cancer.“j In addition to possible limited item relevance, no reliability studies were apparently conducted with the revised scale. Interestingly, neither the study by Fuhrer and colleagues’ or Nieves and coworkers2 found relationships between quality of life scores and extent of paralysis. Whereas life satisfaction appeared to be associated with factors such as social integration, mobility, perceived control, and self-assessed health, no significant correlation was found between life satisfaction and extent of paralysis.’ Similarly, coping effectiveness and perceived quality of life were found to be correlated, but no difference between quadriplegic persons and paraplegic persons was found with regard to their perceived life quality.’ Those finding are inconsistent with quality of life studies of other disability categories, for example, mental retardation, in which life quality has been associated with severity.17 Although the improvised quality of life measures used in the spinal cord injury studies may have been sensitive enough to detect a general relationship to disability, they may lack sufficient sensitivity to make finer discriminations. The shortcomings of the instruments being used to examine the quality of life of persons with disabilities have provided impetus for development of more suitable tools. The Life Situation Survey (LSS) has been developed for use with a spectrum of disability categories commonly engaged in rehabilitation programming, as well as the nondisabled population’s The intent was to create an instrument that would permit a broad range of comparison studies. Results in published reports support its use and encourage additional examination. ‘9,2oIn those studies, it discriminated between nondisabled persons and groups undergoing treatment for back injury and alcoholism. A more recent and extensive study demonstrated effectiveness in assessing the life quality of persons with varying levels of mental retardation who were residing in several different settings.“’ The reported research encouraged a study using the Life Situation Survey to identify factors associated with perceived quality of life of spinal cord injured persons postrehabilitation. The heightened suicide rate and number of other causes of premature death attributable to neglect suggest that the life quality of many persons with disabilities may be problematic.22 METHODS
Procedure This study was one component of a multifaceted survey of a sample of South Carolina residents with spinal cord injuries. Demographic and quality of life assessment data were acquired between June, 1990 and June, 1991, covering areas ranging from employment status to the use of technology. The information was gathered during l-hour to 2-hour long personal interviews arranged at locations convenient to
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participants, such as follow-up clinics, homes, and employment sites. The interviews were conducted by the principal investigator, who was an occupational therapy instructor, and five occupational therapy students who were trained in interviewing techniques. The training followed guidelines established for health care survey research2’ and included two practice interviews.
Sample Criteria for inclusion required that (1) there was no evidence of cognitive dysfunction due to concomitant head injury, (2) potential participants had at least a ninth grade education, (3) the individual was at least 2 years post-injury, and (4) the injury was of sufficient severity to necessitate the use of a wheelchair as the primary means of mobility. The first two criteria stemmed from the need to insure that the participants would be able to reliably complete the various instruments used to gather information and assess life quality. Because quality of life issues are most relevant to long-term, permanent residual disability, the third criterion was established to be reasonably certain participants were beyond the acute treatment and physical restoration stages. The fourth criterion reflected the desire to create a sample representative of persons with the severity of spinal cord injury typically encountered in the rehabilitation milieu. Potential participants were identified from three sources. An initial pool of 148 persons who met the criteria for inclusion was developed from records of persons treated at a medical university hospital between 1980 and 1988. Fifty-six of the 148 volunteered to participate after receiving letters of invitation. Subsequently, 20 more volunteers resulted from mailings to 68 members of local Spinal Cord Injury Association chapters, and 24 additional participants were recruited from 42 individuals referred by therapists located throughout South Carolina. These 100 voluntary participants represented an overall participation response rate of approximately 39%. Initial screening for conformity to the criteria was done by a review of medical records when available and direct inquiry during interview scheduling. The information was confirmed during interviews by participant self-report on a demographic questionnaire, and by interviewer observation. Though no diagnostic testing was conducted to detect cognitive dysfunction, the ability to respond appropriately to interviewer questions ruled out gross deficits. Obtained demographics included gender, race, age, marital status, educational level, employment, income, severity (level) of injury, and rehabilitation experience. Eighty percent of the sample was male. Sixty percent of the sample was Caucasian, 36% was Afro-American, and 4% belonged to other ethnic groups. The mean age was 33.7 years with a range of 17 to 64 years. The mean age at time of injury was 27.3 years, with a range of 14 to 58, and mean duration of injury was 6.87 years, with a range of 2 to 37 years. Fifty percent of the sample were single, 29% married, 2% separated, 14% divorced, and 5% were widowed. The mean educational level was 12.6 years, ranging from 9 to 23 years. Nineteen persons were employed in full-time jobs, 10 held part-time positions, 3 were involved in noncompetitive employment activities, 12 indicated student status, 43 reported
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being unemployed, 8 considered themselves to be homemakers, and 4 were retired. The number of individuals in delineated annual income ranges were 28 under $8,000; 26 $815,000; 27 $16-30,000; 7 $3 l-50,000; and 1 more than $75,000. The ratio of persons with quadriplegia to those with paraplegia was 66:34. With regard to rehabilitation experience, 66 participants received services in hospital-located rehabilitation units, 27 were treated in regional spinal cord injury centers, and 6 reported receiving no rehabilitation.
Instruments The LSS was the primary instrument used to assess perceived life quality.24 This Likert-type scale is comprised of 20 items rated on a continuum ranging from “agree very strongly” to “disagree very strongly.” The items were developed around 10 commonly accepted quality of life domains, such as income and health, together with 10 additional areas derived through a critical incidents-based study of adults with cancer, diabetes, heart disease, multiple sclerosis, spinal cord injury, muscular dystrophy, epilepsy, and blindness. Examples of focus areas derived from the critical incident studies include mobility, autonomy, egalitarianism, and social support. The readability level of the items was estimated to be in the fourth to fifth grade range. Half the items are negatively phrased and randomly interspersed with the others. Items are scored on a 1 to 7 point scale, with negative items scored in the reverse direction. Thus, the maximum and minimum scores are 140 and 20, with higher scores reflecting higher life quality. Several reliability and validity studies have been conducted supporting the technical soundness of the LSS and its use with such populations. Reliabilities (Cronbach’s alpha) based on inter-item consistency have ranged from the low .7Os to the mid .9Os for most of the disabled and nondisabled population samples to which it has been administered.24 For example, reliability coefficients obtained with samples of arthritic clinic patients, persons with hospital discharge diagnoses reflecting cardiac disorders, persons on home dialysis, and persons hospitalized with a general diagnosis of back pain were reported to be .90, .89, JO, and .92, respectively. Test-retest reliability for a 1 week interval was found to be .91. Validity studies demonstrating the instrument’s effectiveness in discriminating between samples considered to differ in life quality were also reported. Prison inmates, for instance, scored significantly lower than university students. Samples of persons with chronic back pain, spinal cord injury, and mental retardation scored significantly lower than samples of healthy nondisabled persons. Also, pain clinic patients scored higher following completion of a 25-day treatment regimen than at the onset of the program. Other published studies support the instrument’s use with persons with back problems, alcoholism, and mental retardation.‘9-2’ Norms from several different categorical samples are available for comparison in the manual developed for the instrument.“” To confirm the construct validity of the LSS, 3 scales of a revised version of the Health Insurance Study-General Well Being Scale, and a companion instrument, the Social Health
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Battery, were also used.25 The revised General Well Being Scale contains subscales measuring anxiety, depression, positive well-being, and self-control. Correlational studies between the four subscales of the General Well Being Scale and mental health-related variables such as stressful life events and life satisfaction support its validity.26 Despite the fact that the subscales have only three to five items each, their reliability has been found to be adequate, with internal consistency reliability coefficients averaging .90. The developer of the revised General Well Being Scale recommended selective use of the sub-scales on the basis of appropriateness. Following that advice, the self-control subscale items were not used in this study because they relate to mental stability. One of the items, for instance, asks if the respondents have any reason to feel they are losing their mind. The anxiety, depression, and positive well-being subscales that were used comprised a total of 12 items. The items from the three subscales focused on matters such as pressure, tension, mood, and outlook. For example, one item asks if respondents had been anxious, worried, or upset during the past month, and another asks if there were interesting things going on in their life. The items are in a format requiring respondents to chose one of six listed answers developed to represent a positive-negative continuum, with assigned scores ranging from one to six. The resultant total score range is from 12 to 72, with higher scores being more positive. The Social Health Battery is comprised of eight questions that relate to social participation. The battery does not constitute a scale, and therefore, does not yield a score. Rather, responses to items are treated individually. The specific item areas are listed in table 3. Items 1, 2, and 7 are formatted to require respondents to provide a specific number, while the remaining questions require respondents to select from a list of frequencies.
RESULTS Based on the responses of the 100 participants, the reliability coefficient (Cronbach’s alpha) for the Life Situation Survey was determined to be .87, and for the General Well Being Scale, .88. The mean LSS score for the sample was found to be 89.5 1 (SD = 15.05), and the mean for the General Well Being Scale was 48.98 (SD = 9.46). The correlation between LSS and the General Well Being scale was .74. The mean ratings for each of the 20 items on the LSS are contained in table 2. Two procedures were used to determine whether there Table 1: Correlations Between Life Situation Survey Total Scores and Social Health Battery items Social Health Battery Item Foci 1. 2. 3. 4. 5. 6. 7. 8.
Frequency of visits with neighbors Number of close friends Frequency of interaction with friends and relatives Number of in-home visits with friends Number of out-of-home visits with friends Frequency of attendance at religious services Number of voluntary memberships in social organizations Activity level in social organizations
*p < .OS based on a critical
.2-J .O’)
.40* .34* .2? .2s .49* .45*
value of .30.
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Table 2: Item Mean Scores for the Life Situation Survey Listed in Decreasing Order Item
Mean
SD
*8. My future is hopeless. 10. There are always people willing to help me when I really need it. _ _ _ *14 I don’t have any fun or relaxation. 9. I am a happy person. 1. I feel safe and secure. “7. I don’t eat very well. *13. I don’t get the love and affection I need. *20. I have too little control over my life. 12. My sleep is restful and refreshing. 2. My health is good. 16. I am able to go when and where I need to go. *18. There is little that I am able to enjoy in my community and surroundings. 5. I am better off than most people in this country. *3. I have too few friends who I can count on. *19. I am exhausted well before the end of the day. *6. I feel constantly under pressure. 4. I like myself the way I am. 15. Services provided by the government and other public agencies meet my needs. 17. I am satisfied with my main life role now as a worker, student, homemaker, retiree, patient or other classification. *11. My income is a constant source of worry.
5.44
I .27
5.07 5.05 5.01 4.81 4.74 4.70 4.65 4.50 4.48 4.39
1.41 1.09 1.31
I .62 I .47 I .48
4.39 4.37 4.34 4.18 4.15 3.84
1.25 I .42 I .I2 1.50 1.40 I .66
1.40 1.47 I .55 1.47
calculate the critical value necessary to reach significance rather than relying on p levels. A value of .30 or larger was determined to meet the .05 criterion. A significant correlation coefficient of .30 was found between Life Situation Survey scores and income. An r of .41 was calculated between LSS scores and years of education, also falling above the critical value. Neither age (r = .06) or duration of injury (r = .13) approached the significance criterion. The Social Health Battery was designed to obtain objective data reflecting involvement in several different social activities and the items constitute separate variables. The results of the correlational analysis of the Life Situation Survey total scores and each Social Health Battery item are listed in table 1. Four items were found to be significantly correlated with the LSS scores, with three others approaching the critical value. DISCUSSION
Because the sample was not randomly drawn, caution should be used when attempting to generalize the findings 3.81 1.58 from this study. Although the sample was relatively large and its gender proportions, age at the time of injury, and etiology of injury are consistent with national spinal cord 3.81 1.60 injury statistics,*’ there are notable differences. The percent3.78 1.64 age of Afro-American participants approximates that in Item score range = l-7. South Carolina, but is higher than the proportion in the na* Items scored in reverse order tional population. Additionally, although the ratio of quadriplegics to paraplegics (66:34) appears to differ from the national statistic (53:47),*’ the difference was not found to was a relationship between quality of life (LSS) scores and be statistically significant (p = .19) when subjected to x2 demographic variables. For categorical variables, such as testing. It had been posited that the lower proportion of gender and marital status, t-tests or ANOVAs and a multiple paraplegics, at least in part, may have resulted from the comparisons procedure (Bonferroni) were used, depending screening criterion that required injuries to be of sufficient on whether the category contained two or more than two severity to necessitate the use of a wheelchair. Thus, some groupings. Correlation coefficients were calculated to indilow-level injured persons may have been excluded because cate relationships between LSS scores and variables that they were ambulatory. Finally, because participation was produced interval data, for example, age. voluntary, it is possible that the sample represented the more Categorical variables examined were gender, race, marital active and positive feeling spinal cord injured persons residstatus, severity of disability (paraplegia or quadriplegia), etiing in the state. Experience suggests that persons who are ology, employment status, and type of facility where rehabilmost despairing are least likely to become involved in such itation was received. Life Situation Survey mean scores were research activities. found to be significantly different (t = 3.42, p < .OOl) for the group with paraplegia and the group with quadriplegia. Their respective mean scores were 96.32 (SD = 13.52) and Table 3: Life Situation Survey Mean Scores for Employment Status Categories 86.00 (SD = 14.67). Eight employment status categories used in data collection were collapsed to four using logical Standard grouping to facilitate statistical analysis. The delineated Category n Mean Deviation groups consisted of “employed,’ ’ “unemployed,’ ’ ‘ ‘stuEmployed dents,” and “other,’ ’ and are shown with their subgroups Full-time 19 90.42 14.56 Part-time 10 and LSS means in table 3. The ANOVA indicated a signifi87.70 13.23 Noncompetitive 3 96.33 6.1 I cant main effects difference (F = 3.89, df = 3/96, p = .Ol). Combined total 32 90.13 13.49 Comparison of the four category means using the Bonferroni Unemployed 43 84.91 14.53 procedure revealed a significant difference (p < .05) beStudent 12 99.83* 19.05 tween the students who scored higher than the groups classiOther Homemaker 8 94.50 II.94 fied as being “employed,” “unemployed,” and “others.” Retired 4 90.50 11.71 Differences between the other categorical variables did not Undefined 1 100.00 .Oo approach the adjusted significance level. Combined total I3 93.69 11.16 Interval variables examined through correlational studies Possible LSS score range = 20.140. included age, duration of injury, income, educational level, (p < .05). and the Social Health Battery items. Given the large number * Significantly higher than the Employed (Combined total), Unemployed, of variables correlated, a Bonferroni procedure was used to Student, and Other (Combined total) category means.
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The reliability coefficients of .87 and .88 for the Life Situation Survey and the adapted General Well Being Scale are consistent with those reported in previous studies, and are sufficiently high to indicate that the instruments were appropriately completed by the participants.24.‘5.‘8 The .74 correlation between the LSS and the GWBS indicates that approximately 55% of the variance is shared. That finding supports the construct validity of the LSS and reflects its developmental underpinnings, which were based on incorporation of a balance of general use quality of life domains and others particularly germane to persons with disabilities. As was noted, the GWBS was developed for use with the general population and lacks items derived from disability experience. It is widely accepted that a healthy social life is essential to life quality, and Social Health Battery (SHB) items were expected to correlate positively with LSS scores. Only item 2 did not approach the significance level. Given the modest correlations between the other items and the LSS scores, however, the overall results seem to reflect considerable difference between the two instruments. The limited relationships may be attributed to the fact that the Social Health Battery’s emphasis is quantitative, assessing social activity level, whereas related LSS items (3, 10, and 13) get at qualitative issues, ie, satisfactoriness of social relationships or activities. Possible explanations of why the SHB item dealing with number of close friends did not at least approach the significance level are more elusive. The total sample Life Situation Survey mean score of 89.5 1 suggests that spinal cord injured participants perceived and rated their life quality to be somewhat lower than nondisabled and some disabled groups. For example, in the LSS ManuaL2” the score reported for graduate students at a southeastern university, who were identified as having a high life quality, was 107. Other norms reported include scores of 93 for cardiac patients, and 94 for persons with rheumatoid arthritis. Among the lower scoring norm groups, nondisabled medium security prison inmates obtained a score of 74 and a group of individuals hospitalized for treatment of back pain had a mean score of 8 1. The general guideline suggested for interpreting scores is that scores of 100 or higher have been associated with groups considered to have a high life quality, whereas those with obtaining scores below 80 have been experiencing a very poor quality of life. In that light, the findings from this study indicate that persons with spinal cord injuries fall about midpoint. However, some caution must be used in considering the magnitude of the disparities because the reported norms were gathered 2 or more years prior to this study, and there is reason to believe that there has been a growing perception of declining life quality in the United States during the past few years attributable to the economic downturn. Thus, a temporal difference in gathering the data may be responsible for some of the disparity between scores. As can be seen in table 2, the mean ratings of most items on the LSS are clustered slightly above the midpoint (4) of the rating continuum, with a few being noticeably high or low. Items 4, 1 I, 15, and 17, reflecting self-esteem, income, public services, and life role, were lowest, and fell on the negative side of the rating continuum. Items 8, 9, 10, and
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14 constitute a high end score cluster. The domains represented by the high score items are outlook, mood/affect, social support, and leisure. It is not surprising that income is one of the areas that appear more problematic given the fact that more than half the participants reported annual incomes of $15,000 or less, with 28% actually having incomes below $8,000. The low incomes are also consistent with the high unemployment rate of 43%. That can be compared with an average unemployment rate of 5.5% for working-aged South Carolinians during the data collection period determined by the South Carolina Employment Security Commission. Limitations in the availability of services such as attendant care and accessible transportation in South Carolina may account for the low rating on the public services-focused item. Negative body image, high rate of unemployment, and poverty level incomes are plausible explanations for the ratings dealing with self-esteem and satisfaction with life role. Nevertheless, it is encouraging that despite the cluster of negatives, the sample of spinal cord injured persons as a whole appeared to maintain a positive outlook and disposition and had positive social relationships. The findings from the analyses designed to identify demographic factors associated with quality of life revealed that employment status, income, educational level, severity of disability, and four of the social activity areas focused on by the Social Health Battery were significant. Because income and educational level are interrelated and usually found to be positively correlated with quality of life, this finding was not unexpected. However, the results of the analysis of employment status did not confirm the expectation that employment would be associated with higher quality of life scores than unemployment, although the limited nonsignihcant difference was in the expected direction. The closeness of the LSS scores of 90.13 and 84.9 1 for these two status groups may be attributable to an excess of poor quality, unrewarding jobs among the employed. Moreover, it has been well established that the substantial amount of money consumed by disability-related needs when employment income becomes sufficient to render individuals ineligible for Medicaid and other benefits frequently reduces them to a poverty-like condition.‘” These explanations seem consistent with the finding that income, when correlated with LSS scores, demonstrated a significant but relatively limited relationship (r = .30). They are also consistent with the low ratings calculated for the LSS items that were focused on income and satisfaction with life role. Somewhat less expected was the finding that those individuals who indicated student status had significantly higher scores than the employed, unemployed, and “other” groups. However, considering that the student role generally carries with it a stimulating and relatively supportive environment with broad access to social activities, the finding is not SLITprising. It is also likely that many individuals in the student group were not confronted with some of the “real life” problems of independent living. Perhaps the more interesting finding was that the Lift Situation Survey scores were inversely associated with severity of injury, that is, the mean score calculated for the quadriplegic participants was significantly lower (86.00) Arch Phys Med Rehabil Vol75, June 1994
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than that of the paraplegic group (96.32). Although intuitively the finding seems appropriate, it is inconsistent with other recently reported research studies.“’ It can be speculated that differences of samples, severity classification schemes, and methods of data analysis may account for the inconsistency with the other studies. However, another plausible explanation may lie in the difference in quality of life assessment approaches used in the studies. Both previous studies used instruments designed for use with other populations and may lack the precision necessary for detecting severity. On the other hand, the LSS was specifically developed as a quality of life measure for use with disability populations including persons with spinal cord injuries. The finding that four of the Social Health Battery items were correlated with Life Situation Survey scores is consistent with recent findings of Fuhrer and associates’ regarding the inter-relatedness of the life satisfaction of persons with spinal cord injuries and social support. Thus, this study provides additional indication that social support issues warrant a priority position in rehabilitation programming. It is becoming evident that quality of life is likely to diminish if persons with spinal cord injury do not have adequate social supports. CONCLUSIONS This study supports previous conclusions that income, educational status, and social activities are associated with the perceived life quality of persons with spinal cord injuries. Results of this study also provide further evidence that socialization issues warrant a priority position in rehabilitation efforts. Rehabilitation specialists may need to explore and facilitate participation in social activities following discharge. Transitional community integration programs should include learning to circumvent socialization barriers. However, although opportunity for social interaction appears to be a matter for concern, the quality of interpersonal relationships must also be addressed. Income, essential public services, self-esteem, and life role also appear to be areas that are relatively unsatisfactory to long-term spinal cord injured persons. The persistence of these problems emphasizes the need for long-term follow-up services. The finding that persons with spinal cord injuries who were employed did not perceive their quality of life to be significantly better than those who were unemployed underscores the limitations in inferring life quality from objective indicators. Finally, the relationship between severity of disability and quality of life requires additional study for clarification, given the difference in findings from this and other studies. Generally, the study supports the use of the Life Situation Survey for assessing life quality of postrehabilitation spinal cord injured persons. The findings provide meaningful insights into how well individuals who have participated in the rehabilitation process are faring and where problems persist. Such information is crucial to enhancing rehabilitation efforts and promoting quality of life following disability. References 1. Fuhrer MJ, R&ala DH, Hart KA, Clearman R, Young ME. Relationship of life satisfaction to impairment, disability, and handicap among Arch Phys Med Rehabil Vol75,
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