Work assets and drains: Employment experiences of women with serious mental illness

1.1 The desire to work

Research suggests that many people with SMI have a strong desire to work. Participants with symptoms of psychosis who were interviewed by Dunn et al. (2008) described their personal work histories and strong work ethic with pride, characterizing themselves as hard workers who were eager to rejoin the workforce. Other participants indicated that work helped them cope with their illness, enabled them to grow emotionally, and provided them with a higher quality of life. Some stated that they had worked even during periods of acute mental health episodes and homelessness. One participant indicated that at one point, work was the “only thing in my life that had any value” (p. 61).

In a related study by Millner and colleagues (2015), adults with SMI were surveyed about their experiences with work. Themes emerged with regard to factors relating to vocational self-efficacy, including personal accomplishments (associated with work), vicarious learning (or positive models of work), social persuasion (i.e., supports), and physical or emotional states (such as motivation or symptoms). In addition, key experiences with work included outcome expectations (loss, benefits, challenges), personal goals, and contextual barriers (e.g., illness and health). Participants tended to express a strong desire to return to work even after periods of homelessness and hospitalization, along with feelings of accomplishment in being able to hold a job.

Not only do individuals with SMI express a desire to work, but they commonly seek out state and federal vocational rehabilitation services (Rosenthal, Dalton, & Gervey, 2007). However, vocational outcomes for individuals with psychiatric disabilities are generally much poorer than outcomes for individuals with physical disabilities. A lack of mental health support on the job may account for part of this disparity. Individual placement programs that incorporate mental health treatment have successfully enabled individuals with SMI to find and keep competitive jobs in their communities (Corbière, Bond, & Goldner, 2005; Marshal et al., 2014). However, in order to tailor vocational rehabilitation services across genders, more information is needed about how women with SMI experience work.

1.2 Barriers to work

The road to employment is not an easy one for people with SMI. According to Arbesman and Logsdon (2011), citing statistics from 2003, people with any kind of psychiatric disability had an employment rate of 48%, which was much lower than the rate for people with other types of disabilities (75%). People with SMI had an employment rate of 37%, which was 11% lower than the rate for people with psychiatric disabilities overall. According to 2015 statistics, 52.2% of people with SMI who lived in households were employed in 2015 (ODPHP, n.d.). The 2015 employment figures for people with SMI receiving public mental health services were lower: 45.4% or 21.7%, depending on whether the overall sample was people with SMI considered to be in the labor force (i.e., employed or unemployed), or the overall sample was people with SMI who were employed, unemployed, or not in the labor force (SAMHSA, 2015).

Some of the factors that hinder success in the workplace for people with SMI appear to include stigmatization, discrimination, poor social skills, cognitive deficits, and positive symptoms, such as auditory hallucinations (Saavedra et al., 2016). People with SMI may be challenged in forming relationships with coworkers due to stigmatization and community rejection. This can contribute to low self-esteem and social withdrawal on the part of those with SMI, who develop an expectation that they will be negatively evaluated in various settings, such as at work (Rubin, Menon, & Vanek, 2012).

Motivation is cited by some researchers as a key impediment for people with SMI, despite research indicating that many people with SMI have a desire to work. Some hypotheses for this are discouragement due to frequent barriers, negative symptoms characteristic of some SMIs (e.g., schizophrenia), fear of losing disability income, and fear of encountering negative reactions from coworkers and supervisors (Saavedra et al., 2016). Another factor mentioned as a demotivator is the communication of low expectations by mental health personnel, who sometimes underestimate the ability of SMI patients to cope with stress. For example, Millner and colleagues (2015) described a 62-year-old, European-American woman who felt demoralized when her medical and vocational caregivers attempted to dissuade her from taking the kinds of “stressful” jobs that she was interested in.

1.3 Facilitators to work

Research has identified a number of factors that increase the probability of people with SMI finding and keeping jobs. Higher educational level and cognitive functioning, longer previous job histories, less severe symptoms, and lack of co-occurring substance use disorders are associated with increased probability that people with SMI will remain in vocational rehabilitation programs and find employment (Kirsh, 2016).

Job placement assistance is another important factor. One study of vocational rehabilitation services from the Rehabilitation Services Administration at the U.S. Department of Education found that job placement services are key to finding and keeping employment for clients with psychiatric disabilities (Rosenthal et al., 2007). Clients who received other types of services (e.g., counseling and transportation) but did not receive job placement services were significantly less likely to find and maintain employment.

Supported employment programs, in which people with SMI are helped to find competitive jobs (i.e., regular, wage-paying jobs in the community) and are provided with integrated vocational and mental health services, have been particularly successful (Marshal et al., 2014). The most heavily researched supported employment model is the individual placement and support (IPS) model. Eligibility is determined by client interest rather than by traditional criteria, such as diagnosis. Furthermore, IPS clients are allowed to choose the types of jobs they wish to apply for, rather than accept choices made by counselors. They are placed in jobs as soon as possible, rather than after lengthy preliminary training, and once on the job, they receive ongoing support with vocational, social, and mental health issues for as long as necessary.

According to an extensive review conducted by Marshall et al. (2014) of existing research from 1995 through 2009, the success rates of IPS programs placing clients in competitive employment positions ranged from 52% to 60%. The success rates for other types of programs, such as traditional vocational services, sheltered workshop programs, and train-and-place programs, ranged from 23% to 34%. Comparable results have been achieved by IPS programs in Australia (Morris, Waghorn, Robson, Moore, & Edwards, 2014), the Netherlands (Michon et al., 2014), and mainland China (Zhang et al., 2017). In spite of this track record, however, most people with SMI do not receive supported employment services. According to 2014 statistics from the Substance Abuse and Mental Health Services Administration (SAMHSA), only 24.6% of mental health treatment facilities in the United States offered any kind of vocational rehabilitation or employment services, and only 19.6% offered supported employment services (Sherman, Lynch, Teich, & Hudock, 2017). According to 2012 statistics compiled by the National Alliance on Mental Illness (NAMI), only 1.7% of patients treated at state mental health facilities actually received supported employment services.

Another key element cited by people with SMI is emotional support from family members, mental health professionals, and peers who affirm the importance of work and earning a living (Millner et al., 2015). A study comparing a supported employment (SE) program that included peer interaction with another SE program that did not include peer interaction found that participants in the former type of program reported greater overall quality of life improvement (Gold, Macias, & Rodican, 2014).

1.4 Women with SMI and work

Research indicates that there are significant differences between the way women and men experience life with SMI (Manuel, Hinterland, Conover, & Herman, 2012). In some cases, women with SMI appear to experience advantages in the search for employment. For example, one study found that female participants in vocational psychosocial rehabilitation programs experienced lower attrition rates than male participants (Harding et al., 2008). A study of people with schizophrenia in the U.S. found that males were less likely to be employed (Beiser et al., 1994), and this result was replicated in a study in the U.K. (Harrison et al., 1996).

Other research suggests that women with SMI tend to be worse off financially and have fewer job opportunities than men (Manuel et al., 2012). One study found that women with SMI experienced greater difficulty finding jobs than men with SMI, and when they did find jobs, they did not work as many hours (Kirsh, 2016). However, another vocational rehabilitation study of 275 participants with SMI in Boston found no gender differences in employment results (Rogers et al., 1991). There is very little research that would shed light on these contradictory findings.

The extant literature contains studies exploring the experience of women with SMI and studies exploring the experience of adults (i.e., both men and women) with SMI in the workplace. However, they rarely do both. For example, a qualitative study conducted by Manuel et al. (2012) described the experience of women with SMI attempting to reintegrate into the community after hospitalization. Although many insights from this study are likely to apply to women with SMI in the workplace, the study concerns the experience of these women generally in the community, not their experience specifically in the workplace. In another example, a qualitative study by Dunn et al. (2008) focused on adults with SMI in the workplace, but the participants were both men and women. Interestingly, most of the participants quoted in the article by Dunn et al. (2008) are women, but the focus of the article is on adults with SMI in general, not on women with SMI specifically.

1.5 Rationale

The current literature offers studies concerning the general experience of women with SMI and studies concerning the experience of adults with SMI in the workplace. Clearly, more research is needed regarding the experience of women with SMI in the workplace. The present study addresses this gap in the literature by presenting research about the experiences women with SMI specifically with regards to the topic of work. The study explores the strengths of these women and the particular difficulties they face in coping with the world of work, with the goal of providing more specifically targeted recommendations to vocational rehabilitation practitioners.

Participants were recruited via announcements in group meetings and flyers posted at the rehabilitation center. The selection criteria were that participants had to: (1) identify as female; (2) be at least 18 years old; (3) be diagnosed with a serious mental illness (schizophrenia spectrum disorder, severe depression, or bipolar disorder); and (4) have experienced significant impairment of functioning in social, occupational, educational, and/or daily living/self-care activities. Semi-structured interviews were conducted according to an interview guide containing questions relating to demographics, diagnosis, personal experience of SMI, gender discrimination, mistreatment by others, as well as experiences in work, parenting, and romantic relationships.

The university institutional review board approved the study, and participants signed informed consent forms prior to participation. Interviews lasted approximately one hour and occurred over a two-month period in person or by phone. An audio recording and verbatim transcript were created for each interview. In some transcript excerpts, readability was improved by removing or modifying non-lexical conversational sounds, word repetitions, and other extraneous content. Care was taken with these excerpt revisions to preserve the original meaning. Following accepted grounded theory standards (Glaser & Strauss, 1967; Mason, 2010), recruiting and interviewing continued until thematic saturation occurred and interviews produced no major new information.

2.2 Data analysis

The interview data was analyzed using grounded theory methodology, in which the data is coded and then categorized in a bottom-up manner to develop themes from patterns in the data rather than from pre-existing hypotheses (Corbin & Strauss, 2008; Miles & Huberman, 1994). The initial research team consisted of a clinical psychologist (the primary investigator and first author), as well as a clinical psychology doctoral student. In the first stage of the coding process, they created a list of over 100 codes through line-by-line coding of a sample of several interviews, creating the initial codebook. They proceeded to assign these codes to the remaining interview excerpts through line-by-line analysis to complete the codebook. Next, axial coding was conducted to organize the individual codes into broader conceptual categories. Selective coding was used to isolate data pertaining to the topic of work, which was then refined into a set of 6 themes by a team of 2 clinical psychology doctoral students working with the primary investigator and first author. NVivo qualitative analysis software was used to assist with the coding process and organize the data.

2.3 Data quality

The research team used qualitative analysis validity methods to enhance data quality. The original interviewer enhanced her credibility with participants (i.e., the interviewees), and therefore the trustworthiness (Morrow, 2005) of the interviews, by fully discussing with participants her position in the research, her clinical background with women with SMI, and her purpose: to fill in research gaps regarding this population in order to enhance clinical care. The research team kept memos in which they recorded first interpretations of the data and other aspects of the data analysis process (Barbour, 2001). They also used reflexive journaling (Morrow, 2005) to identify researcher biases and positioning in relation to the study that might affect the interviewing, coding, and analysis. Research team members conducted cross-checking of coding to enhance inter-rater reliability (Polkinghorne, 2007) and used triangulation (Barbour, 2001) in the selective coding stage. This included three research team members (i.e., the article authors) cross-verifying themes developed by other team members. Consensus (Edwards, Dattilio, & Bromley, 2004) was used to resolve occasional disagreements regarding identification and interpretation of themes.

Work drain is a theme that emerged from data analysis, referring to the phenomenon in which women with SMI experienced work as depleting their internal resources and/or exacerbating their symptoms. For example, one participant described how her job aggravated her symptoms to the point where she had to leave.

She highlighted how taxing work can be for a woman with SMI, as well as the possible consequences of this strain, such as loss of job and income.

Another woman described the crippling fatigue she experienced at work and the lack of accommodation by her boss.

This participant felt isolated and misunderstood in her workplace, being the only one who disclosed having mental health challenges. She indicated that that the SMI caused her to check and re-check her work compulsively, slowing her down and exhausting her. She perceived that her coworkers and her boss could not understand the strain she was under and her need for rest.

Other participants in this study also indicated that their coworkers’ or employers’ insensitivity toward their fatigue was a major barrier at work. This was reflected in the following excerpt about why one woman stopped working.

This participant felt overwhelmed by a cascading series of depressive symptoms, which included sleep problems, leading to burnout and friction with her employers. The combination of depression and sleep problems exacerbated the strain of working.

For the women in this study, workplace stress appeared to interact with the challenges of an SMI in several ways. For example, for the woman with PTSD, work stress worsened her mental health symptoms. Conversely, for the woman who tended to re-check her work, symptoms from her SMI made the job more stressful, causing severe fatigue. A reciprocal relationship could develop between workplace stress and the challenges related to the SMI, which participants found acutely draining.

3.2 Symptom visibility

Symptom visibility refers to the difficulty that many of the participants experienced trying to hide their symptoms from bosses and coworkers. The women interviewed for this study were often concerned with how visible their illness was to others. Two aspects of the symptom visibility theme that women spoke about were the difficulty they experienced trying to hide their symptoms and the potential negative consequences if they failed to do so. One woman with severe depression described the distress she felt when others in her workplace pressured her to look happy.

This woman felt under pressure to look as if she was doing well but was not able to hide her ongoing emotional distress. The stress involved in trying hide her condition added to the stress of the SMI itself.

Participants also described the consequences of failing to hide their condition, which ranged from harassment to job loss. One woman indicated that she was repeatedly taunted and called a “fruitcake” by a fellow employee without understanding what she had done to trigger this behavior. Another described being called a “crazy lady” by an assistant manager.

Hostility toward women with SMI may not always be expressed explicitly. One participant recounted being fired from her job without being able to pinpoint the exact reason.

She sensed that her symptoms of depression caused the supervisor’s animosity toward her. However, she also described feeling exhausted during the day because of her difficulty sleeping after night shifts. It is probable that her SMI made her particularly vulnerable to the stress of working the night shift, increasing the visibility of her condition.

This theme of symptom visibility provides another example of the kinds of reciprocal stress cycles that were particularly devastating for women with SMI in this study. Attempting to conceal their symptoms could add to the stress of coping with their symptoms in the workplace. In turn, the increasing stress could worsen their symptoms, making their symptoms more visible, thus triggering negative reactions from others, and causing more stress. Moreover, women with SMI reported a specific pressure likely linked to gender expectations for women to appear upbeat and inviting in the workplace, which added to their strain.

3.3 Work disclosure

The theme of work disclosure concerns dilemmas that women with SMI face regarding whether and how much to deliberately disclose their mental health condition to others. The participants’ comments regarding disclosure were mixed. One woman stated, “I haven’t been really open. I haven’t disclosed too much.” Another indicated that she believed it might be a good idea to disclose something about her condition because the employer and fellow employees might be willing to help.

As seen in this excerpt, the participants in this study expressed different attitudes about disclosing their conditions in the workplace. On the one hand, revealing their condition could lead to obtaining help that they needed; on the other hand, they might wish to protect their privacy or avoid potential stigma that could result from making their condition visible.

3.4 Inconsistent work

Inconsistent work refers to the fact that some of the women with SMI in this study had a difficult time obtaining and keeping a job. At times, participants found their SMI had not impacted their experience of work, but it had impacted their ability to work consistently and therefore keep their jobs. Their descriptions touch on three of the problems that typically hindered women with SMI, the first problem being the experience of frequent relapses.

The second problem was that an intermittent work history became, in itself, a hindrance to finding work. One participant pointed out that, “The fact that there’s not a lot on my resumé could theoretically get in the way.”

A third problem was a motivational deficit, in this case due to the participant’s experience of losing jobs frequently or having to quit because of symptom recurrence.

This woman’s experience demonstrates a cycle of discouragement, in which symptoms forced her to quit, which created an expectation of failure, along with a spotty resume that decreased her probability of finding another job, which in turn decreased her motivation to try in the future.

Another variation of this spiral is described in the following account, in which the interaction of workplace stress and SMI diminished the patient’s performance, which in turn created more stress, resulting in the participant being in danger of termination but instead going on disability.

This participant appears to have made an effort to stay in the workforce, but the combination of work stress and SMI drove her backwards inch by inch, first into sick leave, then into short-term disability, then into long-term disability, and finally into quitting. For women with SMI, this disruption in their work histories, with accompanying discouragement, sometimes derailed their attempts to continue to work.

3.5 Nontraditional work

The theme of nontraditional work refers to the tendency of women with SMI to find unconventional jobs in order to adapt to challenges posed by their symptoms and external adversity and pursue meaningful work. One woman with a history of severe sexual trauma worked as a bouncer in nightclubs.

This participant had a quest to feel safe following the severe sexual trauma that contributed to the onset of her SMI. This led her to take up weight lifting and then to pursue a traditionally male job as a bouncer, both of which helped her to feel a sense of physical and psychological safety.

Similarly, another participant chose a profession dominated by men, in spite of a strong desire to maintain a sense of separation from men. She knew early on in her life that she did not want to work at jobs traditionally associated with women.

Social expectations regarding what constitutes a “real” job were a source of irritation to one of the participants, who took pride in running her own business, along with volunteering and creating a community resource for homeless youth.

Like this participant, participants in this study demonstrated creativity and resourcefulness in seeking and attaining jobs, despite the odds against women with SMI. In addition, they often thought outside the box when it came to employment. They performed in male-dominated jobs that enhanced their sense of strength in the face of vulnerability to an SMI or history of sexual trauma. Or, they started their own businesses and engaged in community activism.

3.6 Work assets

The work assets theme refers to positive factors that helped women with SMI cope. There were elements in their environments that they could call on, the main ones being community resources and personal contacts. These resources included a group that provided emotional support for women who felt uncomfortable or intimidated working with men, a workers’ union, and a public assistance program that provided transportation to work. One participant’s boyfriend provided jobs for her and her sons. Another woman who had held only two jobs got both of those positions through people she knew after she was turned down for all the others she applied for. In a third case, a sympathetic boss, whose child had a disability, helped a participant resolve a workplace dispute.

Another participant described how her resourcefulness and creativity enabled her to find jobs in spite of stigma and discrimination.

The same participant described the need to strategize and appeal to male employers through one’s looks.

This participant described ways of using sexism to the advantage of women with SMI in order to secure a job and then move on to doing the job competently.

The overall picture presented by the women in this study is that being hired for a job is difficult, and it’s even more difficult for women with SMI. Consequently, these women are forced to use any and all resources, contacts, and breaks that come their way, even if this involves taking advantage of less than empowering stereotypes.

4.1 Vocational rehabilitation implications

Several suggestions for vocational rehabilitation practitioners arise from this study. Clearly there is a need to provide more women with vocational rehabilitation services, and to tailor these services to their unique needs as women. Research has shown that job placement based on client preferences, along with ongoing counseling to deal with psychological and interpersonal issues, is critical to clients’ success (Rosenthal et al., 2007). It is interesting, given previous research showing that women are more likely than men to remain in vocational rehabilitation programs (Harding et al., 2008), that none of the women in this study mentioned utilizing vocational rehabilitation resources to support their ability to seek and retain work. The data collected in this study do not indicate whether the women in this study had access to these kinds of services or, if they did, whether the services proved not useful or were not mentioned for some other reason. The work assets theme in this study underscores the importance to women with SMI of obtaining support and accommodations from a variety of sources, including community agencies, employers, partners, friends, family, and others. Job placement and counseling services are likely to be more successful when combined with sources of support available in the social networks of women with SMI.

The work drain and symptom visibility themes suggest that training in stress management, emotional regulation, and self-soothing skills is likely to be particularly helpful. These kinds of skills can help manage the effects of work drain, reduce performance deterioration, and lessen the chances of relapse. They can also help make symptoms less visible, which can reduce external harassment and stigmatization. In addition, women with SMI may benefit from coaching in various work behaviors that can be hindered by gender socialization in which women are conditioned to avoid assertiveness (Sue & Sue, 2008). This coaching could include advocating for their rights, requesting accommodations, and building relationships with coworkers and employers. This can help manage the kinds of harassment described in symptom visibility and acquire the kinds of useful allies described in work assets.

Vocational rehabilitation practitioners could also help women with SMI explore the issue of when, how much, and to whom they should disclose their mental condition at work. The work disclosure theme showed clearly that this issue is a source of confusion, risk, and stress for women with SMI in work situations. Practitioners can help women with SMI assess the pros and cons of workplace disclosure, anticipate problems, and develop effective solutions that cater to the specific experiences of women with SMI and the double stigma they encounter at work.

This need is not being met consistently by vocational rehabilitation practitioners, even in IPS programs, according to Hielscher & Waghorn (2015), who state that, “clients of IPS supported employment are currently provided with little structured guidance on how to manage their personal information in the workplace” (p. 306). An item was added to the industry standards for IPS programs urging employment counselors to work through the pros and cons of disclosure with clients to develop a disclosure strategy. There is a significant correlation (r = 0.38) between following this standard and successful outcomes, but only 37% of IPS sites were found compliant in a recent study (Hielscher and Waghorn, 2015). The confusion and anxiety indicated by the work disclosure theme highlight the need for vocational rehabilitation practitioners to help their clients manage the disclosure issue.

The inconsistent work theme highlights the need for working women with SMI to have a well-organized, detailed, relapse prevention plan. Practitioners who are working with women with SMI should help them learn how to recognize triggers and warning signs of a relapse and how to develop and utilize specific coping plans. These relapse prevention and coping plans can integrate clear descriptions of the kinds of strengths shown in the work assets and nontraditional work themes that women with SMI may uniquely demonstrate. Based on our findings, rehabilitation practitioners can identify worker strengths pertaining to women’s abilities to pursue unconventional work outside of traditional gender norms, gender socialization to utilize work relationships to their advantage, and their tendency to be savvy navigators of gender constraints in the workplace.

4.2 Limitations and future research

The present study includes several limitations that suggest directions for future research. While qualitative analysis typically involves a smaller sample size to involve in-depth study, this element poses limitations to generalizability. In addition, qualitative research often focuses on individual experiences of participants within a group. Further research could be done on a larger, more geographically distributed sample using quantitative techniques to arrive at more general conclusions about the average, shared experiences of women with SMI. Additional research should be conducted to explore the experiences of men with SMI in the workplace as well. The women in this study were not asked specifically whether vocational services were available to them or whether they had used such services. The fact that the women in this study mentioned a variety of helpful assets but did not mention vocational rehabilitation services raises interesting questions. Were vocational services available but not found useful? Were there barriers to using such services? More research is needed about variables that affect the extent to which women with SMI have the capability and desire to make use of vocational rehabilitation services. Lastly, while multiple data quality measures were utilized in the present study to enhance methodological rigor, the process of member-checking findings with participants would enhance data quality and could be used in future research in this area.