Objective: The purpose of this study was to examine the relationship between employment and psychological health and health management as described by individuals with spinal cord injury (SCI) who were employed at least once following injury.
Methods: A qualitative approach used 6 focus groups at 2 sites with 44 participants who were at least 10 years post SCI. All had been employed at some point since injury. Heterogeneous and homogeneous groups were delineated based on specific characteristics, such as education, gender, or race. Group sessions followed a semi-structured interview format with questions about personal, environmental, and policy related factors influencing employment following SCI. All group sessions were recorded, transcribed, and coded into conceptual categories to identify topics, themes, and patterns. Inferences were drawn about their meaning. NVivo 10 software using the constant comparative method was used for data analysis.
Results: Narratives discussed the relationship between employment and psychological and emotional health and health management. Four themes were identified: (1) adjustment and dealing with emotional reactions, (2) gaining self-confidence, (3) preventing burnout, and (4) attitudes and perspectives. Most themes reflected issues that varied based on severity of injury as well as stage of employment.
Conclusions: Individuals with SCI who are successful in working following injury must determine how to perform the behaviors necessary to manage their health and prevent emotional or physical complications. The emotional consequences of SCI must be recognized and addressed and specific behaviors enacted in order to optimize employment outcomes.
Employment is a primary facet of adult life, providing social connection, a sense of meaning, a structure for time, and financial benefits.1 Too often though, individuals with spinal cord injury (SCI) and other types of disabilities experience high rates of unemployment or under employment, negatively impacting life satisfaction, self-esteem, social networks, and quality of life and limiting independence and access to social support and health care services.2–6
For individuals with SCI, the research has clearly shown an association between employment and the positive psychological characteristics of optimism, self-esteem, and achievement orientation.7 However, existing research is often unclear about the directionality of these findings; that is, it is unclear whether existing psychological strengths served as support for searching for, finding, and applying for jobs, interviewing and securing a job offer, and finally accepting a job or whether these strengths developed as a function of employment.
The purpose of this study was to identify barriers and facilitators to successful employment and clarify the relationship between psychological functioning, health behaviors, and employment using qualitative data from interviews with individuals with SCI who worked post injury.
Methods
Institutional review board approval was received prior to study initiation. Potential participants were identified through a longitudinal study conducted by Krause8 that began in 1974, with follow-ups conducted every 5 years. New cohorts were added in 1984, 1993, and 2003. Participants were initially enrolled through rehabilitation hospitals in 2 states, Minnesota (MN) and Georgia (GA), with catchment areas including surrounding states. The most recent follow-up was conducted in 2008, with 993 participants. Because the last enrollment was 2003, all participants were a minimum of 10 years post injury at the time of the qualitative study, ensuring at least a decade of living with SCI from which to draw employment experiences.
Participants consisted of 44 individuals with SCI who took part in 1 of 6 focus groups conducted either in MN or GA. Participant ages ranged from 30 to 73 years old (average = 52.2, SD = 10.05) with an average age at injury of 21.57 years (SD = 9.76) and time since injury ranging from 14 to 58 years (average = 30.66, SD = 2.83). Level of injury ranged from high-level tetraplegia to incomplete paraplegia allowing ambulation. Women accounted for 30% of the sample, and individuals from racial and ethnic minority backgrounds accounted for 27%. Half of the participants were currently working, 23% were not working at the time of the focus group, and 27% were retired.
All participants worked at some time post injury. We attempted to recruit a stratified sample of those who had been employed for at least 10 years since the onset of their SCI based on most recent follow-up (n = 312) and those who were employed at some point since injury but did not maintain employment (n = 221). We further stratified based on gender, race, and education (high school vs some college or more). Regarding education, participants were placed in the blue collar group if they indicated having a high school education or less and in the white collar group if they had some college. In MN, all females were placed in a women-only group. Individuals who were from racial and ethnic minority backgrounds (in GA) self-selected into the minority group or the appropriate blue/white collar groups depending on their schedule. Table 1 provides details on participant characteristics.
Data collection procedures
Focus groups followed a semi-structured format, were facilitated by 2 individuals trained in conducting focus groups, and were both audio- and video-recorded. Each group lasted between 2 and 3 hours. The core of the focus groups consisted of questions designed to elicit information about the personal, environmental, and policy related factors that affected employment following SCI; in addition, participants who had left employment were queried about associated factors and decisions.
Processing, analysis, and interpretation of the data
Recordings of focus groups were professionally transcribed, reviewed, and cleaned of errors before being uploaded into NVivo qualitative software. Transcripts were reviewed multiple times before being coded by 2 authors (Meade and Reed) to extract topics, themes, and patterns from the source documents. A middle-ground approach was used to interpret narratives and generate conceptual coding categories.9,10 This approach allows interpretation of narratives to be informed by existing research while using matrices and coding schemes to generate conceptual categories. Given the volume of narrative, what follows is a distillation of perspectives highlighting one of the issues that emerged – the relationship between psychological and emotional health, health behaviors, health management, and employment as expressed by study participants. Narratives related to physical health and functioning were not included and will be addressed in another article. Finally, names of participants, providers, health systems, and specific cities were either changed or removed.
Results
Narratives associated with psychological health and health management fell into 4 overlapping themes: (1) adjustment and emotional regulation, (2) gaining self-confidence, (3) preventing burnout, and (4) attitudes and perspectives. Most themes reflected issues that varied based on severity of injury as well as stage within the employment lifecycle (ie, unemployed, seeking work, maintaining a job, or making the decision to leave employment and the workforce). The quotes below represent only a small portion reflecting these themes; additional examples can be found in the eTable available online.
Theme: Adjustment and emotional regulation
Before an individual can return to work, they have to manage the emotional consequences of their injury. As noted by one participant:
Max: Psychologically, everybody with a spinal cord injury goes through the same process of being totally independent one day and the next day, if you can scratch your nose that's great. You have to get through with all that before you're ready to move on.
For some, this transition appeared easy – they “snap out of it” quickly; they are able to adjust to their injury and re-engage with family and community. Alton shared, “I was depressed for 30 days. After 30 days, I snapped out of it.”
Anger
Anger was identified by a significant number of participants as an emotion that needed to be addressed before they could even think about employment. This emotion was identified by both males and females within the group.
Larry: When I was initially in the hospital, I was in such a state of anger and denial and not wanting to be there that anything they would have offered I didn't want anything to do with anyway. So, at 16, I was ready to leave…. Beyond that, why bother any of this other stuff because I'm going to walk out of here? It wasn't until I got home and got a flash of reality with a pressure sore that kept me in bed for 6 months three surgeries. Reality really hit that this is going to last a while.
Serious mental health issues
Serious mental health issues – including depression and suicidal ideation – were prominent in the narratives and clearly served as barriers to both employment and adjustment after injury. With regard to this issue, we also saw references to drinking and substance abuse, but it appeared that alcohol or substances were used as a coping mechanism associated with depression rather than something to do or a way to relate to friends.
While depression, substance abuse, and alcoholism were frequently mentioned in the research as prominent among individuals with SCI, what is compelling about some of the narratives is the way participants were able to move through their mental health issues and achieve emotional and psychological health and then employment. This reinforces the findings of others that, while a significant percentage maintain resilience, there are others who struggle initially but are able to achieve it – usually with the support of others (family members, counselors, etc).11,12
Edmund: When I first got out, I was depressed. Then my mind was not in the right place, so I became an alcoholic. I had a lot of peer pressure; and everywhere I was living, people were messing with me, asking questions: “How do you live being paralyzed?” So that put a lot of pressure on me. Then you have people saying things like “How did you get hurt? Did somebody hurt you?” and stuff like that. They didn't understand. That kept me drinking a lot. People supposed to be your friends [unintelligible at 11:38--sounds like mentoring light company], because people staying around me, so I stayed drunk for about a year. I mean major drinking.
After I stopped drinking, I said, “No, I can't do this.” I start seeing the programs telling me about Goodwill; so about a year later, I stopped drinking. Don't drink anymore, and went to that program, and started adult classes, learned about the computer, learned a little bit there, and then they hired me, and I've been working [since].
While adjustment and mental health issues appear most common immediately after injury, they also need to be addressed when a person with SCI ends their work life and transitions into retirement.
Roy: Then when I retired back in '05, that's when the depression hit me. It's like I've been working all my life, I should be out working. Now I don't have to? It was hard for a year. I've been trained all those years to get up and go to work. Now all of a sudden I don't have to. It's like now all of a sudden I don't have a purpose.
Finally, at least one participant noted that emotional regulation and fear were motivators to obtain and maintain employment.
Bill: The other factor is after my injury a couple of years, I knew I had a fear of being institutionalized and losing control over what happened to me. I knew that not going back to work will put me in that situation because I had not worked enough to receive enough disability or whatever to give me the quality of life I wanted.
Theme: Gaining self-confidence
Even when participants did not have to deal with significant adjustment or mental health issues, they still needed gain confidence in themselves as an individual with SCI. They had to become comfortable thinking about and managing their disability and dealing with the reactions of other people. Those who were unable to do this seemed to find it harder to return to work.
Larry: When I got my teaching degree, I was not at a state where I thought I could handle a classroom, so I did not do my student teaching. So that psychological aspect made me not do my student teaching, so I have a non-certified degree 33 years ago. I would not go back into a classroom now. I joke that instead of teaching the same kids different stuff like a teacher, I teach different kids the same stuff.
Some participants described a slow process to approach the risk of returning to full time work and leaving the safety net provided by Social Security; this required them to trust in their own ability to manage their health and to maintain employment.
Edmund: What I have to say about being scared you'll be cut off disability. Then you're scared you're going to be cut off disability. I was like I'm not going to be able to work and do without disability because I've been off disability for 25 years. So like she said, I was scared. So I started working part time. They let me work part time and still gave me disability for so many hours.
I worked for maybe three or four hours a day, maybe three days a week. But I start being lucky with my employment, because my jobs were real good. I didn't want to do just two days and go back home and sit because it still like doing the same thing. So I was saying, “Well, I'm going to go for it, because I know if I start working full time, they going to cut my check off.”
Facilitator: You did a leap of faith.
Edmund: I did a leap of faith.
Of course, individuals with SCI also must continue to adjust to new challenges to maintain confidence and the changes faced while working.
Stanley: Not knowing sometimes your courage is needed beyond because some things you're not going to control or know about unless you do it, unless you try; and traveling is one major issue. Sometimes you go with the flow; and if it doesn't work out, you do something else. Sometimes you have to go without knowing.
One participant talked about how the rehabilitation program he went through after his SCI helped to increase his sense of self-efficacy to deal with people and uncomfortable situations.
Joey: On the flip side of that, I was rehabbed 13 years ago. A big part of it was the whole rehab team taking you on trips learning how to be around people and not make people afraid of you and for you to put people at ease. Teaching me that helped prepared me to go back to social settings whether it was being friendly or accommodating. A lot of it was the specialist at Shepherd, but I do understand the turnover you talked about. Possibly me more than that, it was the people that educated us on the obstacles that we would face.
For another, having the opportunity to participate in a support group helped him.
Raymond: I have found a lot that just being honest instead of talking about my issues like my disability. I have to talk about it. Right the other day, I still think about what it would be like, what if? I still go through that stuff, so I have to talk about it.
I got a support group I go to on Tuesday and Thursday, and I've been injured since 1988. I still talk to the support group, and that helps me. I just have to be honest about what it is I can do, what I can't do. And it helps.
Theme: Preventing burnout
Once individuals with SCI obtain employment, they have to actively manage their psychological and emotional health to prevent burn out and maintain health. The steps required for this are frequently discussed for all workers – things like having a support system, general wellness, and not working all the time. Particular to persons with SCI is that they also must honor the emotional impact of their SCI.
Maintaining mental health
To maintain emotional and psychological health, a number of behaviors must be done. One participant talked about the importance of honoring feelings about her job, being willing to transfer if needed, and preventing burn out. Several participants discussed the significance of a support system but did not articulate what it takes to find or maintain this. Finally, what it takes to have a healthy lifestyle was often recognized even if not done (preventing burnout, healthy lifestyle, planning and preparation as a health behavior).
Jeannette: We have to select our support systems carefully because they can be destructive and comprised of people who don't respect or seek our input or think of us as valued. We need to establish support systems that are nurturing, supportive, positive, respectful and helpful. Family is a big part of that; and if you can't get it with family, you have to seek it outside. I know so many people with disabilities who have no self-esteem or self-confidence. They don't think of themselves as valuable, and they don't have support systems that value them.
Vacations, sick days, and mental health
Individuals with SCI who do return to work appear just as likely to get caught in the typical habit of US workers of working too much; their reasons for doing so, though, can be related to trying to overcome their disability
Facilitator: The last group talked about taking a mental health day.
Yukami: Vacation means different things to different people. I don't think vacation means you have to go out of town. It could be internal. I've been injured for 14 years. I know the week before my injury [anniversary], I start feeling funky. I relive a lot of things. Then when that day comes, I take the day off. I just turn off the lights; I don't want to talk to anybody. I give myself that day, and the next day I get with the flow.
Susan: I do that too.
Yukami: If I feel my body isn't where it needs to be, and my production level isn't where it needs to be, I will take a day off so I can be functional when I get back.
Burning out
Participants often know what they have to do to maintain their emotional health but do not always prioritize those behaviors.
Max: I had burnout partly because I felt I had to do twice as much twice as good as everyone else to show I was the same employee as anyone without a disability. Part of that was putting in 16 hours a day on site, going home, and getting up and getting to the job in order to put in 16 [hour] days without getting up at 4 o'clock in the morning. After several years of that, you hit a point where you get burned out from the physical part but also the psychological part.
Similarly, Bill described his own experience with psychological burnout:
Bill: I would say also I have a co-worker (my secretary) who helped me realize that I was in psychological burnout. One day I rolled into her office, and she said, “Bill, I want to ask you a question, and I don't want to hear your usual ‘Fine, fine, fine.’ I want to know how are you doing? How are you really doing?” All of a sudden I started thinking about it and began to talk and share. It hit me I'm in burnout. That with my physician confronting me about the realities of my physical, medical condition.
It was hard to transition from a worker still going after this. I began to realize I didn't think I could keep going and survive. So I went through a process of de-programming myself of the importance of my working. You talk about a difficult process. I probably struggled with that more so than the psychological adjustment following my injury.
Theme: Attitudes and perspectives
While the phrase “attitude is everything” is frequently heard in the SCI community, the narratives from our participants appeared to be connected to certain types of “attitudes” or perspectives with employment. Narratives related to attitudes can be grouped as the attitude an individual with SCI has about themselves and their injury, attitudes about work, and the attitude of others. The way attitude translates into specific behaviors to facilitate obtaining and maintaining work are discussed in the last section of this theme.
Attitude about yourself and your injury
Many participants indicated a conscious effort was involved in how they viewed themselves and their injury. Larry decided not to let health issues interfere with his ability to go out and motivate others:
Larry: I'm a lot older than you are…. They told my family the fall I got hurt that my life expectancy was 9 years. … Forty-two years later I'm still going, and they told me that a lot of that has been my attitude. I think we'd all agree that attitude is everything. Everybody tells us you could have gone this way and clammed up and you haven't, you've done this and all these wonderful things going out and motivating people. They don't know what it's like to go home and deal with pressure sores, urinary tract infections, lung problems, all the things that go with spinal cord injury. It's not the injury that kills people; it's everything else that goes with it.
Burnout is something we experience more than able-bodied people because we have more physical things we have to do. The importance of taking a vacation day and not planning anything and knowing when to call in sick. I'm sure all of us have worked when we were sick, with UTIs or when you didn't feel 100 percent. So knowing when to say when. You think you're calling in work, are they going to hold it against me. But for your health, you have to know when to say when.
Victoria chose to face her work life with confidence:
Victoria: Maybe I'm in denial, but I approach everything with gangbusters and confidence. I don't believe I've been judged or evaluated differently than anybody. If anything, I'm a leader in my field, and I set the tone that I'm going to be the leader the minute I walk into a room. When I started as a counselor, and the house staff and other clinical staff said, “You're going to be our boss one day.” Again, we talk about attitude but the way we're wired, our DNA, personal experience culminates into the person we are. Everybody takes that and does what they can with it. It's not a one size fits all.
An upbeat positive attitude appeared to be particularly helpful to some participants, helping them network to find a job and then make friends while on the job. With regard to maintaining employment, having the perspective that work can be fun and engaging and then making choices to find that career or job environment that supports and energizes you appears particularly relevant to maintaining work or returning to work after secondary injuries or other health problems. A positive attitude also impacts how others see you and their willingness to provide assistance and support:
Milton: What help me get a couple jobs since I've been in Atlanta was just based on being around people and them seeing your character. Once they see that and that you're happy and nice and get along with others and they see the type of person you are, once they find out you're looking for a job or interested in working, they help you look. They're like “I know this person who has a job opening. You may be interested. If you are, just let me know.”
Attitude about work
Perceptions and expectations about work appeared critical. Many participants discussed their work ethic and expectation that, as an adult, work is just one of the things you do. While saying that, though, work was not something you took for granted but rather took personal responsibility to obtain as well as a willingness or motivation to push or prove yourself. Ellis described how his work ethic came from his parents:
Ellis: I mowed lawns when I got out. … I was limited because you drive up, get out, you got two canes to walk, and you want to mow their yard. … You did what you had to do it seems like. My parents were up in the morning. My dad worked a swing shift. All I knew was people worked.
Max and Stanley discussed how having their own children influenced their attitudes about work.
Max: …There was never a question as to whether or not I would go back. Remember I never had a job I hadn't created. For me, it was a matter of figuring out how to continue doing what I had been doing or something related to that.
What kicked it off for me is similar to what Joey just said is that I had a son born after my injury while I was in school. One of the major reasons for finding a job other than getting up, looking for something, paying and handling the taxes, was I wanted to be a role model for my son seeing me get up every day, going to work, being a productive member of society in a way that would influence him and hopefully still will.
Stanley: Putting kids in the mix changes things.
Max: It does.
Stanley: I had three at the time. I think the oldest was 8 or 9. They look at you to the point is this going to change you? What are you going to do with it? So your attitude has to reflect positively on what they see.
Another aspect was that work pushed participants to live bigger, as Allen stated:
Allen: You got some people that think like “Man, you know, I was getting that kind of money, I wouldn't be doing anything.” I was, “You know, get Social Security for ones who think that will cover your bills; and go right ahead and do it.” Now don't get me wrong, when you think small, you live small. And I don't like Social Security, you know what I'm saying. I still receive mine. It's a great help; but at the same time, even if you're not working at a paying job, don't have the mentality of “I'm going to sit right here until the first, and I'm going to be all right.” You got to push yourself.
Attitude of others
It is not just the attitude of the individual with SCI that matters. The perspectives, expectations, and attitudes of family members and other people can also be critical.
Sabrina: It's attitude. There have been so many books written about attitude, your prejudice. That is the number one thing that threw me off. Family, friends, whatever, the attitude of the word disability they take that to mean you're incompetent, you no long can talk, that you lost all knowledge. Even the doctor, [shouting] “How are you today?” I don't have a hearing disability.
Jeannette: I want to go back to family. I think family is critical. I was raised with five very irreverent farmer brothers. There were no allowances made. Your legs don't work but your arms do. I learned how to give as well as get crap.
Behaviors associated with attitude
In the discussion of attitude and employment, participants often gave advice and identified specific behaviors they found important.
Bill: The attitude part is having and developing a sense of humor. There is often preconceived notions or stereotypes about a person with disabilities taking life so seriously and not being able to laugh at ourselves.
Benjamin: You just got to dive in. Jump in and see what develops …
Joey: High school diploma is all I have, but my employer said come back when you're ready. The main thing was I had good typing skills and knew the inner workings of the company from the 5 years of previous employment. They found a place for me, and I've adapted through the past 12 years for different positions. … I've adapted to what they require and have a good attitude, the greatest thing that has kept me employed.
Max: The transferable skills as a self-employed manager running multiple crews on construction jobs, managing a budget that I learned on the job transferred to a counseling background easily. When you're self-employed, you have to sell the job, draw the plans, fire the half-drunk burley bearded guy with a hammer in his hand. Those transferable skills translated into a CRC in rehab counseling well in terms of skills to talk to people, sell what you want to do, have them buy in.
Bill: I would second what Max is saying. People skills are fundamental to success in the workplace. For me, it was attitude, strong work ethic. … Fundamental too, is showing up every day, on time. I found out when I got in rehab work, there's a lot of people who don't realize the importance of those two things and the positive attitude, treating people with dignity and respect.
Discussion
Results from this qualitative study highlight the importance of dealing with health-related issues to enhance employment outcomes. In particular, the narratives highlighted the importance of emotional/psychological health management.
Our results are similar in nature to those from a study examining locus of control and work attitude in 459 participants with traumatic SCI in Southeastern Australia.13 Two of 3 locus of control scales were significantly associated with work rate, which was defined as the portion of time spent working after injury divided by the total potential time. Chance was negatively correlated with work rate (−.17), whereas internal locus of control was positively correlated with work rate (+.20). Work attitude was also positively correlated with work rate (+.26). These findings are consistent with those of an earlier study14 that utilized a related but different outcome (“in the labor force” or “not in the labor force”). The same 3 psychological factors were significantly related to labor force participation. Obviously, these constructs are not highly correlated with employment, so they must be considered rather weak predictors at best.
Anxiety, fear, and mistrust may have a significant role in the unemployment of individuals with SCI. A qualitative study using focus groups and interviews with individuals with SCI from traditionally underserved backgrounds found that most (if not all) participants – whether employed or not – seemed to acknowledge the benefits associated with working.15,16 They reported wanting to work, recognized the social and psychological benefits of work, and discussed both their frustration with being at home and their desire not to be dependent on the system. In most cases, though, these feelings and thoughts were eclipsed by a fear of losing benefits and a mistrust of the system to work with them to achieve positive outcomes. Additionally, persons with SCI may need to overcome psychological factors such as lack of self-esteem, lack of coping skills, and lack of emotional support to obtain or maintain employment.17
Our study expands upon a smaller qualitative study comparing persons with SCI who were employed (n=6) and unemployed (n=6), which found self-esteem, achievement orientation, optimism, and role modeling as psychological factors associated with employment.7 Studies often note increased subjective well-being among those employed compared to those not engaged in employment or other meaningful activities (such as school).18,19 Research has even shown similar benefits from unpaid volunteer work after SCI or other disabilities.20,21 Our participants acknowledged emotional health and psychological well-being as benefits of work, both of which are related to increased life expectancy and reduced risk of suicide.22–24 This study has profound implications for policies that present financial barriers, not simply to becoming employed, but to retaining employment, working full-time, and maximizing earnings. In short, any policy that presents barriers either to maximizing employment or earnings also may have the unintended consequence of decreasing life expectancy. This is supported by previous research on mortality.25
Limitations
While the themes extracted above were based on significant narrative, it is important to recognize that they reflect the perspectives of a limited number of individuals. Therefore, despite participants representing a variety of backgrounds and employment experiences, these results are not generalizable to the SCI population as a whole but provide a framework for further study of employment outcomes. In particular, many participants received treatment at a rehabilitation center knowledgeable about working with individuals with SCI and conducting research; these factors may have influenced the attitude, perspectives, and opportunities provided to this group of individuals.
The themes identified in this article represent the self-reported and subjective narratives of individuals with SCI. Additional examination of each is likely warranted using a variety of approaches. In particular, themes and narratives associated with attitude illustrate how critical it will be for future studies to examine the components of cognitive self-statements, experience, and executive functioning skills that are included in and affect attitude.
We have taken steps to limit threats to validity that can come from several sources including haphazard processing, analysis or interpretation of the narratives, failure to demonstrate construct validity, external validity or generalizability, and reliability. The detailed transcription process and data analytic methods were all designed to limit these threats to validity as was the use of 2 group facilitators. We added elements to the plan of evaluation to ensure 90% agreement in coding between the 2 facilitators.
Conclusion and implications
Learning to manage health after SCI can be a long and complicated process dependent on numerous personal and environmental factors. Taking control of emotional and psychological health appears to be critical before being able to obtain or maintain employment.
Acknowledgments
The authors have no conflicts of interest to disclose.
The contents of this presentation were developed under grants from the US Department of Health and Human Services Administration for Community Living, NIDILRR grant number 90DP0050-01-00. However, those contents do not necessarily represent the policy of the Department of Health and Human Services, and you should not assume endorsement by the Federal Government.
REFERENCES
Author notes
Supplementary material: The online version of this article contains the eTable.
