Who Adjusts?
Eva Miller, PhD
Why is it that some people adjust rather quickly to acute spinal cord injury (SCI) and others never really overcome the effects of the overwhelming and often devastating aftermath of the sudden onset of SCI? Why is it that people like Christopher Reeve generate billions of dollars for stem cell research and others with SCI become depressed and anxious, turn to drinking and to drugs, alienate themselves from everyone who is important to them, and go through most of their days feeling lost, angry, betrayed, and hopeless? Is it about money or fame or courage? Or is it because some people who experience acute SCI are simply better equipped than others to handle extremely difficult situations?
In an extensive review of the literature on adjustment to SCI, Galvin and Godfrey (2001) reported that, “Recovery from SCI requires significant ongoing psychological adjustment” (p. 615). They noted that 30% to 40% of individuals with SCI develop a depressive disorder and approximately 25% develop anxiety disorders. Suicide rates are two to six times higher in populations with SCI as compared to community populations, and the prevalence of substance abuse SCI is twice as high. In addition, divorce rates are higher for people with SCI and they are more likely to be financially disenfranchised and unemployed or underemployed than the general population (as cited in Galvin & Godfrey). This manuscript discusses some of the major issues that either impede or enhance the adjustment to acute SCI and provides treatment recommendations for counselors and related professionals.
Unemployment has numerous deleterious effects on persons with disabilities as well as on society in general. High unemployment rates represent a significant social burden resulting from an increase in expenditures associated with benefits such as Supplemental Security Income (SSI) and Social Security Disability Income (SSDI). Although the age of SSI/SSDI beneficiaries has declined in recent years, research has shown that it is likely that these individuals will remain on the disability roles for extended periods of time and that less than one percent of these beneficiaries give up their disability income in order to return to work (Yasuda, Wehman, Targett, Cifu, & West, 2002). It is also known that unemployment rates vary considerably among persons with disabilities. For those with SCI, approximately 32% with paraplegia and 24% with tetraplegia are unemployed 10 years post-injury (NSCISC, 2005). Some of these individuals never return to work and many start new jobs. Those who do return to their previously held jobs typically do so much sooner than those forced to find new jobs. Due to the nature of their disabilities, many people with SCI hold administrative and professional jobs that do not include manual labor, so those with administrative experience are in a much better position to have the opportunity to return to their previous work function. Other variables that have been shown to correlate with the return to work rates among persons with SCI include age at which the injury occurred, level of education, race, and sex. That is, successful employment outcomes are typically obtained by males younger than age 29, persons with incomplete and less severe injuries, those having lived more years with a SCI, and persons who have completed at least 16 years of education (Yasuda et al.). Other factors such as adequate transportation, self-determination, social and recreational outlets, and adequate housing have also been positively related to successful work outcomes with increased adjustment and life satisfaction among people with SCI.
In light of these factors, counselors and other mental health professionals should attempt to facilitate successful employment and subsequent adjustment for persons with SCI by ensuring that clients’ basic needs are met, emphasizing empowerment, and discussing incentives for reduced governmental assistance. Accommodations such as flexible work hours, part-time employment, and the intrinsic values associated with working must also be considered as part of the employment process.
Another factor that can work against persons with SCI who are facing adjustment issues relating to their newly acquired disability is the temptation to rely on alcohol and/or drugs as a means of minimizing physical and psychological pain. Kolakowsky-Hayner et al. (2002) examined the drinking patterns and the use of illicit drugs among 30 adults with SCI who were primarily unmarried, African American and White males, with a mean age of 35 years, and who were one to three years post-injury. The majority of these individuals lived in private residences, had at least a high school education, 86% were unemployed, and 30% had a positive psychiatric history, including depression and alcohol and/or drug abuse. Pre- and post-injury alcohol and illicit drug use was assessed via the General Health and History Questionnaire developed by Cahalan and Cisin (as cited in Kolakowsky-Hayner et al. 2002). Results of the study showed that 16.7% of the participants identified themselves as heavy drinkers, with many drinking on a daily basis, while 23% reported moderate drinking habits. As for illicit drug use, approximately one in five of the participants reported using drugs within the past six to 12 months, notably marijuana, followed by cocaine and heroin or other opiates. In addition, 45% of those using illicit drugs post-injury also reported using drugs prior to their SCI. There are a number of postulations that can be offered regarding the decision to use alcohol and drugs among persons with SCI, including a means for self-medicating in the effort to reduce the stress, anxiety, depression, and other mental health symptoms that frequently co-occur with acute SCI. Thus, the need for professionals to identify potential substance abuse issues at the onset of the rehabilitation process may be paramount to facilitating a healthy adjustment process.
Variables such as coping strategies, locus of control, support systems, and self-esteem have also been linked to adjustment among persons who have encountered traumatic experiences and can counteract some of the negative effects of SCI. Chan, Lee, and Lieh-Mak (2000) examined modes of coping and adjustment among persons with SCI from Hong Kong and found that of the 66 participants in their study, those at risk for developing psychological problems were characterized by high scores on external locus of control indicating their belief that they do not have control over what happens to them, inadequate coping modalities, and perceptions of low social support. Health or disability-related problems such as pressure sores and urinary tract infections also contributed to reduced adjustment to the SCI. Other factors that were found to impede adjustment and life satisfaction were stress among family members such as marital discord, problems with children, or conflict with in-laws, care giving burden, financial constraints, and role dissatisfaction, including disillusionment with spousal, parental, and work roles. As such, it is paramount that counseling begin as early as possible to educate persons with SCI on strategies for dealing with distorted perceptions and to provide a safe environment for them to vent their frustrations and gain valuable insights on how to improve their situation. Involvement of family members and friends as well as participation in support groups where people have an opportunity to see that others share similar problems and have developed valuable coping strategies can greatly enhance the adjustment process for persons facing acute SCI.
Sexuality has also been heavily associated with adjustment to SCI. In a study conducted to assess the impact of SCI on sexual health and quality of life, Reitz, Vobe, Knapp, and Schurch (2004) assessed the sexual activities, abilities, and desires; satisfaction and sexual adjustment; and overall quality of life among 63 persons (47 males and 16 females) with SCI. Half of the women rated their sexual desire as high, 10 of the women reported engaging in sexual activity on a regular basis, and 44% said they were satisfied with their sexual lives. With regard to the men, 36% rated their sexual desire as high, over half reported being sexually active, and 38% reported sexual satisfaction. Eighty-seven percent of the males and 75% of the females reported satisfaction with their overall quality of life. There was a statistically significant correlation between quality of life and satisfaction with relationships, their social lives, physical well-being, and bladder management. Conversely, despite the high number of participants who indicated that they were not satisfied with their sexual life post-injury, there was no statistically significant correlation between sexual satisfaction and overall quality of life. Although these results can be explained based on a number of factors such as marital status, age, level or age of the spinal cord lesion, and cultural influences, it is also probable that adaptation to SCI involves shifting priorities in life from sexuality to other fields such as one’s career, children and other family members, or perhaps spiritual endeavors. Therefore, it behooves counselors and other professionals to closely examine how much a client’s adjustment process is related to their sexuality versus other means of attaining life satisfaction.
It is clear that experiencing a SCI is a traumatic loss that involves paralysis as well as a plethora of secondary complications such as problems with mobility, loss of bowel and bladder control, sexual dysfunction, infections, spasticity, and pressure sores. Some theorists (e.g., Niemeyer, Prigerson, & Davies, 2002) have suggested that people who experience a traumatic loss engage in a process of reconstructing a world that makes sense to them after the loss. This phenomenological approach involves changing one’s private thoughts and feelings and the way we relate to our external world in an attempt to find new meaning and ways of relating to the world. The first step entails trying to make sense of the loss based on one’s worldview or basic beliefs about how and why certain events occur. For example, some people view it as a punishment from God, others believe it was predictable, and yet others simply blame the situation on bad luck. The second phase involves an attempt to see the situation in a positive manner, such as viewing one’s SCI as a means for bringing the person closer to others and for creating enhanced meaning in life.
References
Chan, R. C. K., Lee, P. W. H., & Lieh-Mak, F. (2000). The pattern of coping in persons with spinal cord injuries. Disability and Rehabilitation, 11, 501-507.
Galvin, L. R., & Godfrey, H. P. D. (2001). The impact of coping on emotional adjustment to spinal cord injury (SCI): Review of the literature and application of a stress appraisal and coping formulation. Spinal Cord, 39, 615-627.
Kolakowsky-Hayner, S. A., Gourley III, E. G., Kreutzer, J. S., Marwitx, J. H., Meade, M. A., & Cifu, D. X. (2002). Post-injury substance abuse among persons with brain injury and persons with spinal cord injury. Brain Injury, 16(7), 583-592.
National Spinal Cord Injury Statistical Center (2005). Facts and Figures at a glance—June 2005. Retrieved March 12, 2005 from http://www.spinalcord.uab.edu
Niemeyer, R., Prigerson, H. & Davies, B. (2002). Meaning and meaning, American Behavioral Sciences, 46, 235-251.
Reitz, A., Vobe, V., Knapp, P. A., & Schurch, B (2004). Impact of spinal cord injury on sexual health and quality of life. International Journal of Impotence Research, 16, 167-174.
Yasuda, S., Wehman, P., Targett, P., Cifu, D. X., & West, M. (2002). Return to work after spinal cord injury: A review of recent research. NeuroRehabilitation, 17, 177-186.