Return to work after spinal cord injury.

Introduction

Gainful employment may be an important rehabilitation goal for a person with spinal cord injury (SCI) both psychologically and financially. Unfortunately, most studies of vocational resettlement have reported relatively low rates of employment, usually below 40 percent (Trieschmann, 1980). However, the majority approximately 85 percent) of persons at the time of onset of their injury were relatively youthful and were employed or studying. An examination of the literature may provide an insight into the low rates of employment following the onset of injury.

There have been many studies regarding return to work after SCI, especially in the past 25 years. Yet, it is difficult to be definite about the factors related to vocational outcome after SCI. Most studies differ with respect to sampling procedures and sample characteristics (e.g., age, severity of injury, time of follow-up since onset of injury), methodology and variables associated with vocational outcome. It is also likely that some of these studies have become dated due to legislative, social and economic changes which have altered the conditions in which persons with SCI seek to obtain and maintain employment. Furthermore, earlier studies tended to explain vocational outcomes almost exclusively in terms of the characteristics of persons with SCI. Little attention was given to environmental variables such as employer attitudes, specific cultural biases, financial disincentives to employment and the procedures of rehabilitation agencies (Trieschmann, 1980). However, there has been a growing awareness of the importance of these issues in the SCI literature (De Jong, Branch & Corcoran, 1984; Trieschmann, 1980, 1987).

The purpose of this paper is to explore the available information from recent studies and from other related studies. This paper begins with the findings of studies of the past 10 years and concludes with a discussion of key factors related to vocational outcome. In following this approach, it is intended to draw attention to the need for a broader perspective than can be provided by focusing on a relatively small set of variables to explain or predict outcome. There is not likely to ever be a standard recipe for successful vocational outcome because the personal and environmental factors which determine return to work tend to differ among persons with SCI.

Selection of Evidence

Studies published in the past decade were selected on the basis that they were more likely than earlier studies to reflect topical issues related to vocational resettlement. As most studies were retrospective and were based upon non-random samples, it was decided to concentrate upon studies with a lower limit of 50 respondents who were followed-up for at least 12 months after onset of injury. This meant that some otherwise excellent studies were excluded due to the smallness of the sample (Alfred, Fuhrer & Rossi, 1987; Crisp, 1982; Goldberg & Freed, 1982; Jellinek & Harvey, 1982), brevity of follow-up period (Rohe & Athelstan, 1982) or absence of sufficient information (Ikata, 1987; Jenik, Kuhn & Zach, 1982; Lang, Duff, Hoffman & Koeth, 1980; Sposito, Casalis & Ferraretto, 1984; Sutton et al., 1982). In sum, 12 studies satisfied the essential criteria and are discussed below.

Analysis of Recent Studies

Cook, Bolton & Taparek (1981) obtained a sample of 144 respondents (a 79 percent response rate to a postal questionnaire), 27 percent of whom were women, and had been served by the Arkansas Rehabilitation Service. Women reported greater optimism about their employment prospects than men; spent more time in social activities than men; and were more likely to describe themselves as employed or as homemaker whereas men were more likely to say they were unemployed. Most of those who were employed were satisfied with their jobs. Regardless of their level of injury, most unemployed respondents were pessimistic about their employment prospects due, they felt, to their disabilities and associated medical problems. Crisp (1981) surveyed 97 persons who had been referred over a 3-year period to a vocational counselor at a SCI facility in Australia. Forty percent had obtained employment following injury and, in general, had higher levels of education prior to injury than unemployed persons. Among those unemployed, approximately 50 percent expressed an interest in obtaining employment. The author suggests that vocational and rehabilitation counselors maintain a regular and long-term follow-up service as some persons with SCI are slow to develop an interest in returning to work (cf., Cogswell, 1968; Felice, Muthard & Hamilton, 1976).

DeVivo & Fine (1982) examined the influence of selected medical, demographic and epidemiological variables on the employment status of persons 3 years after injury. From 361 persons who had received rehabilitation at a SCI facility in Alabama during 1973-1976, 47 persons who were "gainfully employed" were compared with 47 others who were randomly selected from 314 unemployed persons. The "gainfully employed" group included homemakers, students and persons in sheltered workshops as well as persons in competitive employment. Most persons who were gainfully employed 3 years after injury were young, white, female, employed at the time of injury and had a high functional ability (Barthel) score. The authors indicated that their results should be viewed with some caution as their sample was relatively small and other variables not considered in this study may need to be included in future research.

In a subsequent study, DeVivo, Rutt, Stover & Fine (1987) surveyed 154 persons who had been treated at the same Alabama facility between 1973 and 1979. Data was obtained from hospital records and interviews. The sample was divided into 4 groups: (1) persons continuously unemployed after injury which was 51 percent of the sample; (2) homemakers, all women and 8 percent of the sample; (3) students, 10 per cent of the sample; and (4) those employed at least for some time after injury, 30 percent of the sample. The proportion of employed respondents increased with time; after 7 years post-injury 19 percent were employed. In general, unemployed respondents were older, black, less educated, more severely injured and reportedly poorly motivated to work. This type of research may suggest to service providers who has the greatest vocational potential or the most socially acceptable characteristics. It may not minimize the provision of services to "individuals who will never benefit from them" (De Vivo & Fine, 1983, p. 233). Instead, it may tend to exclude from vocational rehabilitation services certain individuals with minority status who might otherwise benefit from greater access to counseling and support services.

Dew, Lynch, Ernst & Rosenthal (1983) based their study on structured interviews conducted with Ill persons rehabilitated in a Veterans Administration facility in Boston. This sample included only one woman, which was far fewer than most other studies; the average age was 44 years and was higher than other studies under review: and 58 percent had been injured for 5 years or longer when the interview was conducted. Twenty percent were employed. Among those unemployed the most common reason for not working was that full-time employment would result in loss of financial benefits. Sixty-three percent of the sample received non-service connected benefits which meant they would lose other benefits if they became employed. Because of their low education, they may have believed they were unlikely to obtain high paying jobs that would sufficiently offset the loss incurred by forfeiting their benefits.

El Ghatit & Hanson (1978) based their study upon postal questionnaires sent to all persons who had attended a SCI facility in California. Seven hundred and sixty male respondents (a 60 percent response rate according to El Ghatit & Hanson, 1979) completed and returned the questionnaires. Significant statistical relationships were reported, i.e., those males who were most likely to have obtained employment were: injured prior to age 30; injured for at least 5 years; paraplegic rather than quadriplegic; married; well-educated (see El Ghatit & Hanson, 1979); able to drive an automobile; able to care for own bowel and bladder; and had actively sought employment. Those individuals most likely to sustain employment were: well educated; single; and did not have an indwelling catheter. The most frequent reason given for unemployment were: susceptibility to pressure sores; frequent hospitalization; inability to find a suitable job; frequent grounding at home; and retirement due to disability.

Fuhrer, Carter, Donovan, Rossi & Wilkerson (1987) reported the discharge outcomes, one year after onset of injury, for 2 groups, i.e., (1) 34 persons who were ventilator dependent when discharged from inpatient rehabilitation, and (2) 196 persons who had required mechanical respiration some time during rehabilitation, but who were free of such assistance at discharge. In both groups unemployment was high and approximately 30 percent were students. Interestingly, only 27 percent of the ventilator dependent group were vocational rehabilitation clients compared to 73 percent of the ventilator independent group. This study was limited to individuals who were only a year since onset of their injury. Given the paucity of information concerning this group and their expected long term social and vocational adjustment, further long term study is warranted.

McAdam & Natvig (1980) followed-up 61 persons with complete paraplegia (T1-L3 levels) in a 16-year period between 1960 to 1975. Fifty-nine percent of respondents were working (mostly in clerical or professional jobs) which is a higher proportion than reported in most other studies. The authors suggest that their physical training program, which assists persons with paraplegia to ambulate with orthoses and crutches, was a significant factor in helping them to achieve a successful vocational rehabilitation outcome. They also reported a significant relationship between intelligence (measured by formal I.Q. testing) and ability to work. However, the bias existing in a group selected for a physical training program designed to teach persons with paraplegia to ambulate with crutches can affect its generalizability.

Richards (1982) reported on 166 persons (an 82 percent response rate) who had been rehabilitated in Queensland, Australia, between 1975 and 1980. In this sample, 75 percent were men most of whom had been engaged in heavy manual and outdoor occupations prior to injury. Most of those employed after injury were men (31 men and 4 women) usually in clerical work and in various trades. Frequent reasons for unemployment given by the unemployed respondents were: lack of available suitable work; lack of transport; and, to a lesser extent, living in a rural area with few employment opportunities; and poor medical condition. The availability of suitable equipment was also an important factor identified by the respondents of this study.

Rohe & Athelstan (1985) reported the vocational interests of 117 men with SCI. This sample, the result of a 62 percent response rate, had been drawn from ex-patients of three SCI facilities. Respondents completed two versions of the Strong-Campbell Interest Inventory, one with standard instructions and the other with instructions to recall interests from an earlier pre-injury age. A control group of 130 men matched on age also completed the inventory twice. Results showed that the interests of men with SCI were as stable as those of their non-disabled peers. Moreover, it was found that a major change in physical abilities did not produce a change in measured vocational interests. The stability of vocational interests after injury (i.e., the continued preference for activities which are no longer physically possible) may partly explain the extremely low rates of employment among men with SCI. The results of this study suggest that greater effort in service delivery is required to (a) adapt and modify the client's environment, and (b) develop "psychologically equivalent" activities that are physically possible but are similar to pre-injury interests.

Shaw & McMahon (1985) analyzed the jobs obtained by 95 persons with complete SCI who were placed in employment by a vocational rehabilitation agency in Florida. In this group, 77 percent were men, 60 percent paraplegic, and they had a mean level of education of 12 years. This sample was arguably over-represented in clerical and managerial occupations. This was particularly true for quadriplegics, whereas some paraplegics had obtained work in machine trade, bench-work and other "practical" occupations. The median annual salaries of this sample was below that of the general population. This is disturbing given the additional expenses they incur due to their disability. It is not surprising, perhaps, that some persons with SCI decide not to forgo their benefits and remain unemployed.

Weidman & Freehafer (1981) drew on a target population of 220 who had been treated at a SCI facility in Ohio. They obtained a 66 percent response rate. Sixteen percent were employed and 12 percent were students. When homemakers are included, most of whom were women, 50 percent enjoyed productive lives as students, workers or homemakers. Financial disincentives were identified as a major reason why many respondents in this sample chose to remain unemployed.

Key Factors

From the variety of evidence in the literature, there are numerous factors associated with return to work after SCI which merit consideration. Foremost among these are: education, pre-injury vocational interests and attributes, severity of injury, medical problems associated with disability, age, duration of disability, financial disincentives to work, and gender. Surprisingly, employer attitudes to persons with SCI has received less attention in recent studies than in the wider literature, but will be discussed.

Financial disincentives may be a prominent barrier to employment, but it is difficult to assess which factors are most important. It seems likely that their impact varies according to the attributes of an individual and his or her environment.

Education

Education has been the most frequently reported factor associated with employment after injury (Alfred, Fuhrer & Rossi, 1987; Crisp, 1981; De Jong et al.,1984; DeVivo et al.,1987; Dew et al.,1983; DeYoe, 1972; Dvonch et al., 1965; El Ghatit & Hanson, 1978, 1979; Felton & Litman, 1965; Forner et al., 1976; Goldberg & Freed, 1982; Siegel, 1969). It seems that for persons with higher educational levels, adjustment to SCI involves less change in their value systems, occupational and leisure interests and activities. They are less likely to be disadvantaged by an inability to perform manual occupations and leisure activities. They are more likely to be involved in community organizations and to hold leadership positions (DeJong et al.,1984); and may be more likely to be self-directed and responsible for their vocational future than less educated persons (Alfred et al.,1987).

Pre-injury Vocational interests

Pre-injury vocational interests also appear to be important. In general, a major change in physical abilities does not produce a change in vocational interests; the incongruity of interests and physical functional level may explain the extremely low rates of employment reported throughout the literature (Rohe & Athelstan, 1982, 1985). Using the Goldberg Scale of Vocational Development, Alfred et al. (1987) and Goldberg & Freed (1973, 1982) found a relationship between pre-injury vocational interests and vocational outcome after injury. However, these studies consisted of very small samples and numerous other variables which were associated with employment after injury.

Severity of injury

Severity of injury has not been consistently associated with return to work. Several studies have not linked severity of injury with employment status (Cook et al., 1981; Crisp, 1981; Goldberg & Freed, 1973, 1982) but have been contradicted by other studies (De Vivo & Fine, 1982; De Vivo et al.,1987; Dvonch et al.,1965; El Ghatit & Hanson, 1978; Felton & Litman, 1965; Jenik et al.,1982; Sutton et al.,1982). These studies focused upon diverse sets of variables and adopted different methodologies which limits comparison.

Severity of injury may influence the types of jobs undertaken by persons with SCI. When successful in job seeking, persons with quadriplegia have generally entered professional, technical, managerial, sales and clinical areas of employment. Persons with paraplegia have also found employment in these areas, as well as in machine trade, factory benchwork and processing areas (DeYoe, 1972; Shaw & McMahon, 1985; Siegel, 1969; Walker, 1961; Wilcox & Stauffer, 1972). Short- and long-term ventilator dependent persons with quadriplegia have rarely obtained employment, but a recent study by Fuhrer et al. (1987) reported that 35 percent were students. The employment prospects of these students after graduation should be the subject of important future research.

Medical Problems Associated With

Disability

Four studies (Cook et al.,1981; Dew et al.,1983; El Ghatit & Hanson, 1978; Richards, 1982) reported that poor physical health and/or frequent rehospitalization were often used to explain unemployment. The extent in which medical problems have been associated with unemployment has varied in other studies. Anderson & Andberg (1979) reporting on a sample of 141 persons who were 1 to 10 years post-onset of injury, found a negative correlation between satisfaction with 6 activities (including employment) and days lost from a major activity (not necessarily employment) over a two-year period. DeVivo & Fine (1982) reported that the incidence of urinary tract infection was one of a set of variables which predicted employment 3 years after onset of injury. Meyers et al. (1985) did not report a significant relationship between number of hospitalizations and employment status. However, they suggest that some hospital readmissions could have been prevented and argue that the greater availability of mental health and counseling services could reduce the incidence of rehospitalization and increase re-entry into the work force.

Age

Many investigators (Cook et al., 1981; DeVivo & Fine, 1982; DeVivo et al., 1987; Dvonch et al.,1965; El Ghatit & Hanson, 1978; Kerr & Thompson, 1972; Wilcox & Stauffer, 1972) have found that age at onset of SCI was one of a set of significant factors related to return to work. El Ghatit & Hanson (1978) reported that persons injured prior to age 30 years were more likely to have obtained employment than those persons injured when age 30 or older. DeJong et al. (1984) found that younger persons tend to be more productive than older persons, i.e., productive in activities of paid employment, school or training, formal organizations, homemaking and leisure. Cook et al. (1981) reported that older persons tended to be more pessimistic about their prospects for future employment, and to rate their physical health and psychological well-being less favorably than younger persons. The lower rate of return to work for older persons may be the result of two factors: reduced power of adaptation and the reluctance of employers to hire or re-hire persons with a limited future working life.

Most of the research in this review has involved relatively younger persons. The aging process, which refers more to duration of disability than to chronological age (Trieschmann, 1987), has not received much attention. In addition, there is a paucity of research related to long term employment trends among persons with SCI.

Duration of Disability

Most people with SCI do not enter, or return to, work immediately upon discharge from hospital. For those who do return to work, there is often a phased sequence of resocialization or reintegration into the community (Cogswell, 1968). Return to work is likely to be the result of good "adjustment" developed over a period of time. Some vocational rehabilitation counselors have suggested that it may be 2 to 5 years before a true level of employment potential can be assessed (Felice, Muthard & Hamilton, 1976). Alfred et al. (1987) found that the level of vocational planning was low during inpatient comprehensive rehabilitation and at 2 years post-discharge. They suggest that vocational counseling services be strengthened for individuals when 2 years after discharge. In contrast, Jellinek & Harvey (1982) reported that those persons who had access to a vocational rehabilitation counselor throughout the hospital phase of rehabilitation were more likely to be employed or in school 3 years after injury than those persons who received counseling at a late stage of hospital rehabilitation. However, it is unclear in this study whether successful vocational or educational outcome was influenced by other variables. These studies by Alfred et al. (1987) and Jellinek & Harvey (1982) consisted of very small samples and further research is needed to systematically determine the long term vocational adjustment to SCI.

Financial Disincentives

For some individuals a major barrier to employment exists in the form of financial disincentives. Over the past two decades, studies (DeJong et al.,1984; Dew et al., 1983; DeYoe, 1972; Weidman & Freehafer, 1981; Shaw & McMahon, 1985) have reported that many individuals with non-service connected spinal injuries were reluctant to return to work for fear of loss of financial benefits. For these persons, unemployment is a financial and medical necessity. They usually have relatively low educational qualifications and therefore lack the necessary skills or training needed to obtain higher paying jobs that would offset a loss of benefits.

Persons with SCI also incur additional expenses directly related to their disability (Alsop, 1985; Shaw & McMahon, 1985), i.e., over and above the ordinary costs of living, they may have extraordinary medical, self-care, equipment and transport costs. This situation appears to inhibit some persons math SCI to obtain or maintain employment. Instances of financial disincentives (Ikata, 1987) have rarely been reported in the literature. Suggestions for the removal of disincentives in the United States have been advanced (Trieschmann, 1987); and, in Australia, Alsop (1985) has argued for modifications to the taxation system which would provide compensation and incentives to people with disabilities who are pensioners (to encourage them to obtain work) and taxpayers (to assist them to maintain work).

Gender

Most studies have included greater proportions of men than women. It is only recently that women with SCI have received attention in the literature. Several factors influencing the employment of women with SCI have been identified. Women with paraplegia are more likely to return to work than women with quadriplegia; they are more likely to be younger rather than older; and relatively well-educated (De Vivo & Fine, 1982; De Vivo et al.,1987). Sex role socialization probably ensures that women with SCI enter traditional homemaking or vocational roles, e.g., clerical or teaching jobs (Pinkerton & Griffin, 1983; Watson, 1983). In recent studies (DeVivo et al.,1987; Girard et al.,1983; Weidman & Freehafer, 1981) women not in paid employment have more often been identified as homemakers than unemployed men.

Employer Attitudes

Little has appeared in the literature concerning the impact of employer attitudes to persons with SCI. However, in an extensive review of the literature related to employers' views towards people with disabilities in general, Greenwood & Johnson (1987, p.43-44) concluded:

Although many accomplishments have been realized, many issues continue to be problematic for employers. Disability raises doubts in the minds of many employers, and stereotypes continue to exist in spite of the efforts of rehabilitation organizations and advocates.... Employers continue to emphasize that productivity by their employees is the bottom line. Unfortunately, the literature reveals that many employers have doubts about the ability of workers with disabilities to be productive, particularly if they have emotional or mental disabilities. Continued intensive advocacy, education, and job development and placement initiatives are required to facilitate the employment of workers with disabilities.

Most persons with SCI have not had "emotional or mental disabilities" to the extent that they have been poor employment prospects. However, some employers may hold unrealistic views about people with SCI, e.g., that persons with SCI can only perform jobs in isolation, jobs not requiring supervision of co-workers or contact with the public (Trieschmann, 1980, p.120). Prospective employers may also be discouraged by other perceived but assailable difficulties, e.g., architectural barriers, lack of suitable transport and medical problems.

Conclusion

A recurring feature of the research literature is the incidence of relatively low rates of employment among persons with SCI. However, the general picture may be more encouraging for some unemployed individuals with SCI than has been suggested in the literature.

It is disappointing that more attention has not been paid to identifying persons with marginal or minority status in the labor market and how they may benefit from additional assistance and support from vocational rehabilitation services. As with earlier studies, recent research has tended to focus more on the characteristics of employed persons than on the characteristics of those who were unemployed.

These studies do provide important demographic and biographical profiles and, in some studies, the respondents' perceptions of their social and vocational situation. Yet, the extent to which vocational rehabilitation service providers can utilize this research is limited; most of the research has been retrospective and can only offer tentative conclusions about cause and effect. A more searching inquiry of post-injury vocational development is needed, e.g., significant and unforeseen social events which may influence an individual's post-injury personal development; learning experiences which enable an individual to overcome, or compensate for, environmental obstacles; factors which encourage some individuals, who have been unemployed for a number of years, to obtain and maintain employment. Future research should also be directed towards providing a better understanding of: (a) employer attitudes to persons with SCI; (b) the relevance and impact of vocational rehabilitation counseling and placement at different stages of adjustment to SCI, e.g., during early rehabilitation and the ensuing years; (c) the attitudes of family members or significant others (e.g., friends, rehabilitation professionals) which may reinforce or discourage decisions to work or study; (d) long term employment patterns and career development, e.g., opportunities for promotion and for mid-career re-training; and (e) the influence of racial, ethnic or cultural (e.g., sex role socialization) factors which impose a dual minority status upon some individuals. Then, the literature can be better utilized by vocational rehabilitation service providers to assist a broader range of persons with SCI to seek employment.

It is not realistic for vocational rehabilitation counselors to use this review primarily to develop a composite picture of employable versus unemployable persons with SCI. Generalizations across the research literature are limited. However, these studies may provide counselors with an understanding of the employment problems faced by persons with SCI. The major problems which have been often identified by research are: financial disincentives; insufficient education or training; vocational interests seemingly not being congruent with physical capabilities; and delays in client responsiveness to vocational counseling and placement in the years immediately following onset of SCI.

While service providers need to be sensitive to the issues raised in this review, they also must realize that helping individuals to deal with social and physical barriers in their environment does not simply depend upon the provision of direct clinical services. Financial disincentives may be diminished by changes in public policies and legislation; likewise, disincentives to employers to hire persons whose employment viability depends upon significant and expensive workplace modifications.

The research reported in this review has implications for rehabilitation agencies. Greater access to programs by persons of minority status in their community not only because of their disability, but also because of other factors (e.g., being older, black, and/or female) appears to be needed. Studies which suggested the need for special assistance for employment have consisted of samples of persons with SCI in a particular city at a particular time. Further research in other regions is clearly needed.

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