Personal experiences of people with serious mental illness when seeking,obtaining and maintaining competitive employment in Queensland,Australia

Abstract

BACKGROUND:

High non-participation in the labour force and unemployment remain challenging for adults with serious mental illness.

OBJECTIVES:

This study examined the personal experiences of people with serious mental illness when seeking, obtaining and maintaining competitive employment. The aim was to increase understanding of personal experiences of employment and how these experiences can be used to inform the assistance provided in support of clients’ competitive employment goals.

METHODS:

Qualitative data from a two-year period were thematically analysed from one participating site in a multi-site trial of employment services integrated with public funded community mental health treatment and care.

RESULTS:

Both positive and negative themes arose. Positive themes included: Aspirations for a better life, receiving feedback on good job performance, employment displacing preoccupation with illness, and employment improving self-esteem and reducing financial stress. Negative themes included stigma experiences, stress, and health difficulties. Both positive and negative experiences did not depend on type of employment service assistance nor key client characteristics such as age, sex, and diagnostic category.

CONCLUSIONS:

Despite its many benefits, employment can also increase the risk of negative personal experiences. These findings suggest that employment service providers could do more to assist people who commence employment, to reduce the risk of negative personal experiences and to enhance the benefits of competitive employment.

Keywords

Employment psychiatric disability personal experiences stigma disclosure

1 Introduction

High non-participation in the labour force and unemployment remain problematic for adults with severe and persistent mental illness with most research focussing on labour force activity, unemployment, barriers to employment, the experiences of unemployment, or employment outcomes obtained by specific employment programs. However, relatively few studies have explored the personal experiences associated with obtaining competitive employment. Clients’ personal experiences and negative experiences in particular, may be important for understanding the relatively short mean job-duration among people with severe mental illness. Job retention is an ongoing issue for service delivery to this population by Disability Support Service providers, even if a relatively high proportion of clients commence competitive employment. In recent reviews of the most effective forms of supported employment for this group, the mean job duration of the longest job held was 22 weeks [3, 4]. This highlights job retention as an important ongoing issue for service delivery even if a relatively high proportion of clients commence competitive employment. Improving the quality of support, once employment has commenced, therefore appears urgently needed for people with severe mental illness, because a large proportion of jobs end suddenly or unsatisfactorily. Several reasons for sudden job-loss have been suggested, including a need for help with social interactions at work and with managing psychiatric problems while working [1, 27].

In a study focusing on the job search phase, it was found that the quality of employment support was important, particularly advice and counselling during the job search phase to enable informed choice about disclosure and to prepare for ongoing support once employment commences [5]. Koletsi et al. [19] explored clients’ views of the difficulties involved in obtaining and maintaining employment, their experiences of the support received from their support workers, and the perceived impact of employment on clients’ lives. They found that workers with severe mental illness associated employment with financial stability, improved social participation, increased self-esteem, greater integration into society, and reduced feelings of boredom and isolation. They also found some unintended negative consequences of employment such as increased levels of stress, conflict with colleagues, and having less personal time. Some clients wanted their support workers to have more knowledge of their industry and some wanted more frequent contact and support while at work. Although several studies have explored personal experiences of obtaining competitive employment from an operational perspective [9 , 25], relatively few studies have explored not only the positive but also the negative personal experiences associated with first obtaining, then maintaining competitive employment. In a qualitative study by Becker et al. [2] of employment experiences, three overlapping themes of management of symptoms, coping skills and adequate support services were identified that were perceived by participants to influence their work behaviour.

The successful management of symptoms and the development of appropriate coping skills appeared to play an important role in finding, obtaining and maintaining employment. Participants indicated they generally preferred part-time employment because of the reduced demands and because part-time work was perceived as being compatible with continuing health and welfare benefits. In a survey developed and administered by a consumer-led research team to 389 persons receiving case management and outpatient services at an urban mental health centre within the United States, concern about losing health and welfare benefits was identified as the most significant barrier to employment [22]. Consumers who said they were not interested in looking for work, would be interested if they were better informed about how employment can be managed without losing their health and welfare benefits. Another barrier to employment was low pay. The authors suggested that this be addressed by vocational programs helping consumers to develop skills and qualifications that lead to better paid jobs. Participants also recognized the importance of support services in making successful transitions from unemployment to employment and between jobs however, even taking into consideration reported difficulties with gaining and maintaining employment, Becker et al. [2] concluded that the long-term trajectories of participants in supported employment programs were positive overall.

Irrespective of the reported difficulties with gaining and maintaining employment, many individuals in this population express the desire to work and describe positive benefits associated with having a job. Using a grounded theory approach in their study, Liu et al. [21] suggested that experiences of participants in effective supported employment programs [see 4] highlight the importance of participation in meaningful occupations as both a therapeutic process and a desired rehabilitation outcome. In a recent international study conducted across two community-based mental health settings, employed participants in the Individual Placement and Support (IPS) group reported improved personal well-being and increased self-efficacy after three months of employment [26]. Positive comments included being more financially independent, higher self-confidence, a sense of accomplishment, and feeling better able to handle obstacles. However, some negative comments were also reported. These included deterioration in physical health because of long working hours or manual labour, increased anxiety, and not having enough personal leisure time. Among those who remained unemployed, the responses were dominated by negative comments. Participants reported doubting their own abilities or reported feeling useless through not being able to gain employment. Other negative experiences reported were reduced self-worth, poor self-esteem, and feeling worried about ever being able to earn a living by themselves.

Consumers who said they were not interested in looking for work, would be interested if they were better informed about how employment can be managed without losing their health and welfare benefits. Another barrier to employment was low pay. The authors suggested that this be addressed by vocational programs helping consumers to develop skills and qualifications that lead to better paid jobs. Cunningham et al. [9] compared experiences of those who had been successful in gaining and maintaining employment, with those who had been successful gaining but not maintaining work, and those who have been unsuccessful gaining employment. The individuals appeared to differ in three significant ways i.e., the way they talked about their illness, the way they talked about work, and the strategies they described for coping with bad days. It appeared that people were aware of the pressures of work and the need for better management of their illness when at work. Therefore, having a clear perspective on their illness seemed to be a significant factor in being able to gain employment. Perceiving the mental illness as only a part of who they are, emerged as a significant factor in maintaining employment. Similarly, Honey [16] interviewed 41 consumers about their perspectives on employment. Participants described a range of objective issues relating to the need to maintain mental health, work goals, work confidence, and managing difficulties with work performance. It has been suggested that the relationship between objective and subjective measures of recovery can be blurred by idiosyncratic differences therefore to define the person as an individual and not as an illness, suggest a more subjective, personal measure of recovery needs to be applied when investigating best practice for assisting people with mental illness gain and maintain employment [7 , 11].

The aim of the study was to increase our understanding of the personal experiences of employment and how these experiences can be used to inform the assistance provided in support of clients’ competitive employment goals. The implication is that better understanding of these experiences will lead to more individualized and tailored support, to reduce the incidence of preventable job-loss and increase job retention in jobs that clients wish to retain. Hence, we were particularly interested in the personal experiences that had practical implementations for the delivery of intensive supported employment services to people with severe mental illness. Although there has been some valuable research in this area previously, few studies of supported employment program outcomes have also examined personal experiences in sufficient detail to inform servicedevelopment.

2 Methods

Ethical approval was obtained from the West Moreton and Darling Downs Human Research Ethics Committee. All participants provided informed consent. Participants consisted of 23 males and 16 females that ranged in age from 22 to 45 years (M = 33.13, SD = 8.11). All participants were diagnosed with a psychotic disorder. The majority of participants were of Australian or New Zealand decent. No significant differences between the intervention and comparison groups in terms of basic characteristics and specific responses were identified.

2.1 Recruitment

Three public funded mental health case management teams in West Moreton (The Park, Goodna, and Ipswich) were informed about the new integrated employment project in which an employment specialist was made available to clients of the three mental health teams. Each team received a formal presentation on the project and was invited to refer clients who met eligibility criteria. Project inclusion criteria were: Expressed interest in competitive employment, available to work for eight hours or more per week, disability employment services in the local area [30]. Clients allocated to the active intervention group were referred to one of two employment specialists co-located within two of the three mental health teams. Each employment specialist assisting intervention group clients followed practices recommended for high fidelity IPS services. Comprehensive client interviews were conducted by trained research officers who had professional mental health backgrounds at baseline (n = 81), six months (n = 63), 12 months (n = 53), and 24 months (n = 33). A good rapport was developed between the researcher and participant enabling the participant to fully express their response to each question. Participant responses were hand written by the researcher. Average interview time was 45 minutes. The research was conducted during the period February 2007 and June 2010. During each interview participants from both the control and intervention groups were asked a number of open ended questions directly relevant to their experiences of employment. Other questions were directed towards their related experiences of stigma, disclosure and social inclusion. The questions analysed for this report were:

Please comment on how your most important role gives you a sense of being a valued member of the community (included in this study if their chosen role was employment).

Can you provide examples to illustrate why you think your employment performance is at a particular standard?

In the past month, has any person treated you more differently than you want to be treated because you are a mental health consumer? Please give an example of how you have been treated differently.

In the past six months, have you ever been treated differently because you are a mental health consumer to the extent that this has had an effect on you today?

Please give an example of a disclosure you recall making in the past month.

If no longer in this job, what was the reason for the job ending?

2.2 Analysis

The randomised control trial data used for this study originally captured participant information at four intervals: Baseline, 6, 12 and 24 month. However, in this study, data covering a period of 12 months was utilised as this time frame has been found to be a sufficient period to reflect personal experiences of employment in a competitive environment [2 , 9]. Given its combination of grounded theory, positivism, interpretivism and phenomenology an Applied Thematic Analysis (ATA) [31 , 35] approach was applied. Applied Thematic Analysis (ATA) is an inductive analysis method for qualitative data involving multiple analytic techniques suitable to identify both implicit and explicit ideas within the data set i.e., themes that revealed attitudes to employment and the personal experiences of obtaining and maintaining employment. Because we used a thematic approach, a robust three-way classification system was also applied to elucidate themes and further enhance data interpretation.

With the purpose of retaining a focus on personal experiences with practical implications for delivery of employment services, only comments with positive or negatives themes were gathered. Those responses that appeared neutral or which could not be clearly interpreted as positive or negative, were excluded from further analysis. The comments were classified according to type of theme, (positive or negative), type of intervention i.e., Control Group (CG) or Active Intervention Group (AIG), and the experience phase i.e., previously employed (but not employed at time of interview); past employment (was recently employed but employment had ceased at time of interview) and those still currently employed.

Credibility of responses in relation to employment was determined via use of questions PEx8, PEx9, PEx13, NEx3, NEx5, NEx6 and NEx8. These questions were best thought to capture credible experiences the phenomenon in question [35, 36] particularly PEx8 and NEx8, responses from the same participant recorded at different intervals. Transferability of results was assessed via checking for patterns of positive or negative experiences related to any particular employment type, across all responses. It is suggested that if a pattern is found indicating a particular type of phenomenon, in this case employment, had produced overly positive or negative experiences then transferability of results to a different type of employment may not be possible [31 , 36]. Examples PEx1-PEx3, PEx9, PEx10, PEx11, NEx3 and NEx14 were used to identify experiences thought to be easily transferable to other employment settings. Consistency and conformability were achieved via use of two trained researchers who conducted blinded, cross referenced analysis and interpretation of responses, hence also maintaining rigor, enhancing inter-coder agreement and strengthening reliability.

3 Results

Of the 39 experiences of employment analysed across three time points (Baseline, 6 months and 12 months), 14/39 (36%) experiences were recorded from the control group (CG: M = 8/14, 57%; F = 6/14, 43%) and 25/39 (64%) experiences were recorded from the active intervention group (AIG: M = 15/25, 60%; F = 10/25, 40%). Of the 14 experiences recorded in the CG, positive and negative experiences were analogous with 7/14 (50%) recorded in both categories (Positive themes: M = 5/7, 71%, F = 2/7, 29%; Negative themes: M = 3/7, 43%; F = 4/7, 57%). Of the 25 experiences recorded in the AIG, 11/25, 44%; (M = 9/11, 82%; F = 2/11, 18%) expressed positive themes while 14/25, 56% (M = 6/14, 43%; F = 8/14, 57%) expressed negative themes.

Of all participants regardless of intervention or phase of the job search process, males reported more positive experiences overall than females (M = 14/18, 78%; F = 4/18, 22%), while females recorded more negative experiences overall than their male counterparts (M = 9/21, 43%; F = 12/21, 57%). The majority of negative experiences for both genders were associated to questions three, four and five i.e., experiences of stigma and difficulties after disclosure of illness. After exclusion of responses that were in the previous employment phase, i.e., pre-randomisation, the number of negative experiences did not depend on the type of employment service (CG or AIG) nor did the number of negative experiences appear to vary by key client characteristics such as age, sex, and diagnostic category.

3.1 Positive experiences (PEx)

At baseline, some participants reported positive attitudes to previous employment and looked forward to having financial independence and increased hope for the future that employment can provide (Question 1).

PEx1: “I would like to be independent and give back to the community in future.” (Peter, CG).

PEx2: “I want to have a good life in the future.” (Aaron, CG).

PEx3: “I would like to be able to earn my own income.” (James, AIG).

At further interviews (6 and 12 month) and regardless of randomisation allocation or duration of employment, positive experiences dominated responses to questions regarding the standard that people are usually able to perform employment compared to others their own age, who do not have disabilities or health conditions (Question 2). For example:

PEx4: “[It’s] …not hard work, not rushed, and I take my time.” (Warren, Poultry farmer, AIG).

PEx5: “I am pretty good at doing my job.” (Andrew, Bar attendant, AIG).

PEx6: “I am told I do a good job.” (Susan, Office assistant, CG).

Others stressed the importance of employment as a primary social role. Participants who, at the six or 12 month interview indicated that their most important role was employment were asked: ‘How does your employment give you a sense of being a valued member of the community?’ (Question 1). These participants indicated that work had provided them with increased satisfaction overall, improved social interaction, increased finances and most importantly, better health:

PEx7: “I want to help out and make myself useful.” (Clinton, Gardener, AIG).

PEx8: “I enjoy the contact with other people.” (Maryanne, Laundry assistant, CG).

PEx9: “Having money and being someone is important to me, as well as achieving job satisfaction.” (Ronald, Caterer, AIG).

PEx10: “Employment is really fun; it gets me out of the house. I enjoy work. I am too busy to be sick.” (Amanda, Bakery assistant, AIG).

However, most importantly some participants reported the greatest benefit from having a job was that it gave them a sense of hope for the future:

PEx11: “I look forward to future earnings.” (Aaron, Gardener, CG).

PEx12: “I would like to get a better job, e.g., in a book shop.” (Roger, Postal worker, AIG).

PEx13: “I want to keep my current employment going and look forward to a second job.” (Andrew, Bar attendant, AIG).

PEx14: “It’s good to have things to do.” (Troy, Supermarket assistant, CG).

3.2 Negative experiences (NEx)

Experiences of stigma and social exclusion were explored via the question: ‘In the past month, has any person treated you more differently than you want to be treated because you are a mental health consumer? Please give an example of how you have been treated differently’ (Question 3). Those who answered ‘yes’ to the first question were asked to give examples and identify the source of the different treatment, e.g., by people in my neighbourhood; by family members or other relatives; by health service staff. Example experiences recorded at Baseline included:

NEx1: “I was dismissed from work for six weeks after I disclosed to my employer.” (Lisa, Fitness consultant, AIG).

NEx2: “My employer refused to pay me when I disclosed [my mental illness].” (Bronwyn, Hotel attendant, AIG).

NEx3: “Employers or recruitment agencies would not let me work or advised me to not bother applying” (Bruce, CG).

In response to questions regarding being treated differently, some responses specifically mentioned disclosure as a trigger for stigma and unfair discrimination. Example experiences recorded at 6 month interview included:

NEx4: “It happened at a job interview. I wasn’t given the job and the interviewer changed their attitude after disclosure [of my mental illness].” (Maryanne, CG).

NEx5: “I applied for a job and was rejected in a verbally abusive manner when I disclosed my mental illness.” (Michael, AIG).

NEx6: “Co-workers treated me differently and picked on me. I was excluded from completing various tasks due to not having the capacity.” (Juliet, Receptionist, AIG).

NEx7: “My brother told me to stop being a girl because I had depression and was not working full-time” (Lisa, AIG).

Example experiences of stigma and unfair discrimination recorded at 12 month interview included:

NEx8: “One colleague found out about my mental illness and gossiped to others. Now they avoid me.” (Maryanne, Laundry assistant, CG).

NEx9: “I felt people were laughing at me because of my illness.” (Michael, Cleaner, AIG).

Negative experiences were also reported in the context of jobs being terminated (Questions 5 and 6). As expected, no positive responses to job cessation were recorded.

Examples of negative experiences in this context at 6 month interview:

NEx10: “I was recently discharged from hospital and getting pressured by my trainer.” (Francis, Storeperson, AIG).

Examples of negative experiences in this context at 12 month interview:

NEx11: “I wasn’t paid so I left.” (Juliet, Receptionist, AIG).

NEx12: “My employer refused to supply a pay slip to Centrelink.” (Michael, Cleaner, AIG).

Negative experiences were also reported across all interview timelines when people were asked about the standard to which they were able to work.

NEx13: “I had some difficulty with one staff member.” (Maryanne, Laundry assistant, Standard ‘Average’: CG).

NEx14: “I did the best I could but was eventually retrenched.” (Fiona, Apprentice baker, Standard ‘Average’: AIG).

4 Discussion

This study set out to ascertain the personal experiences of people with a serious mental illness when seeking, obtaining and maintaining competitive employment. The aim of the study was to increase our understanding of the personal experiences of employment and how these experiences can be used to inform the assistance provided in support of clients’ competitive employment goals. The participants were purposefully selected to include employed individuals, people who had either some employment or substantial employment and those who did not yet have a job. The participants of this study faced multiple barriers to employment with many of those who commenced employment unable to continue for a variety of reasons, including low remuneration and non-supportive work environments. More experiences with negative themes were reported than with positive themes. Our study reflected findings [17 , 25] whereby participants’ stories were saturated with negative messages and low expectations concerning their capacity to work and that the jobs participants’ held or sought, influenced their perceptions of benefits or negative experiences. These properties related to hours, pay, basis of employment, skills and qualifications required, stability, location, physical environment, productivity demands, nature of tasks performed, resources available, opportunities available, product ethical soundness, autonomy, place in the hierarchy, job status, accommodations available, and the social environment. However, other previous research suggests that, by and large, employment is beneficial for the mental health of people with severe mental illness [6] though managing personal information in relation to disclosure of mental illness remained a problematic issue [13 , 33].

Disclosure of mental health status was a negative experience for some participants. This appears to be a critical issue, which if not managed well can lead to job termination [17 , 34]. In another study disclosure was perceived as beneficial but not everyone was satisfied with the results. Some people felt that supervisors made people with a mental illness work harder than their fellow employees without disabilities, or were passed up for promotion [13]. Alternatively, they were not hired because of having a mental illness or were fired if they did have a job. Some participants preferred nondisclosure because it gave them the option to blend in. In another study employment counsellors identified the most significant barriers for clients were stigma associated with mental illness and the possibility of discrimination in the workplace [23].

Our findings are consistent with research which supports the need for interventions designed to optimise the potential benefits of disclosure while decreasing the risks of stigma and unfair discrimination [33, 34]. Making detailed plans for managing personal information is a promising way to prevent these negative experiences and enhance employment outcomes [14 , 33]. The attitudes of clinicians and supported employment specialists to mental health symptoms and the work restrictions which result from those symptoms appear to be particularly important. This is because many clients perceived their symptoms as a significant barrier to finding work. They often believed their history of mental illness and stigma had been the greatest barrier [19, 33]. This suggests that supported employment specialists could further explore any work-related impact of ongoing mental health problems, and provide more assistance with anticipating and resolving these problems at work [5, 8]. When participants were asked about things that had helped them find a job, or to keep working, one of the factors most cited was the belief that they could make it and an overall trust in themselves [15 , 20]. This suggests that employment specialists could make more regular assessments of work-related self-efficacy in order to better understand sources of high and low confidence for continuing employment in a particular job [28].

Such findings also suggest ways to improve post-employment support. New types of support could be considered including personalized stress management and self-monitoring strategies, and building natural supports in and outside the workplace [12 , 34]. The negative experiences reported suggest that more regular and more intensive post-employment support may be needed to further adjust working hours, work schedules and job tasks. It is better to identify problems early such as low energy and stamina and levels of confidence [24]. It is also important that a good post-employment support plan builds on a good job match to individual interests, talents, prior experience and career goals. The fact that there were no differences found between participants who received employment assistance and those who did not suggests the need for further research into how employment services are delivered to people with severe mental illness and how negative experiences of employment can be reduced. These include:

Increasing the focus on how symptoms and symptom profiles produce employment restrictions and how these can be overcome or accommodated in a particular job. Mental health case managers and treatment professionals and the job seeker can contribute to this exploration.

Planning for more pragmatic disclosure which enables access to workplace accommodations while reducing the risk of negative stigma experiences and unfair discrimination.

Providing more regular, intensive and effective post-employment support that utilises measures of self-efficacy to monitor work confidence and ongoing assistance needs.

5 Limitations

The main limitation was the use of semi-informal methods to assess the qualitative information provided. Those responses that appeared neutral or which could not be clearly interpreted as positive or negative, were excluded from further analysis. However, adherence to ATA methodology and blinded, cross referenced analysis and interpretation of the data addressed any methodological concerns. Another limitation was the small number of open ended questions used to generate responses. Nevertheless, the questions and responses generated important insights into the type of issues that can lead to negative experiences inemployment.

6 Conclusion

This study set out to examine the personal experiences of people with serious mental illness when seeking, obtaining and maintaining competitive employment. Both positive and negative themes emerged. The positive themes conveyed increased self-confidence, the ability to better manage illness and feelings of optimism and positivity for a better, more productive future. By identifying positive attributes to employment individuals may be better placed to identify workplace solutions for any work restrictions that may result from their mental health condition. The negative themes communicated how having a mental illness can produce barriers to employment and can also lead to stigma reactions and unfair discrimination. Disclosure strategies were a particular source of negative experiences. The nature of these experiences suggests that more can be done by employment service providers to prevent or ameliorate these experiences. Since negative employment experiences represent a real risk for those seeking competitive employment as a recovery goal, more research also appears needed into how these experiences can best be managed or prevented throughout the employment journey.

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