Critical factors for the return-to-work process among people with affective disorders: Voices from two vocational approaches

2.1Participants

In the RCT, participants were recruited from four geographically diverse outpatient settings in the County of Scania in southern Sweden [22]. Each participant was part of the intervention, IES or TVR, for 12-months. Participants were eligible (inclusion criteria) if they had: 1) been diagnosed with a depressive episode (ICD-10 F32), recurrent depression (F33.0, F33.1), bipolar disorder (F31), or (F30) includes depressive episode, as diagnosed by the team psychiatrist according to the International Classification of Diseases 10th edition [24], 2) were aged 18–63, 3) an ability to communicate in Swedish, 4) expressed interest in employment and in a RTW-process, 5) been unemployed for the preceding year. Exclusion criteria included severe drug/alcohol abuse and somatic illness or physical disability that impeded work.

In this study, a purpose sampling of 63 participants who entered the RCT was used [25]. In addition to the RCT inclusion criteria, prior participation in the IES or TVR vocational rehabilitation for 12-months was a criterion. No adverse events or reported changes had been reported in relation to the RCT. Thus the only difference between the point when the participants entered their rehabilitation and the time for the current interviews concerned their age, since 12-months had passed. Before entering the RCT, they had received information about the project in the outpatient waiting room, daily newspaper, a website or through their case manager. Information meetings were then held by the research co-ordinator (SJ) at each outpatient unit, in which issues about the RCT, including the present interview data collection, could be raised [22]. All written information, including that in the consent form, had been approved by the Lund University Ethics Board, Lund, Sweden (Dnr 2011-544). All participants signed an informed written consent form. Out of the 63 participants, 31 individuals were purposely selected to the present study since diversity was sought for in relation to age, gender, service, i.e., Employment Specialist (IES) or handling officer (TVR), and outpatient unit. Two months previous to the time point for the interviews (10 months after enrolment), the participants were contacted according their preferences written in the consent form, i.e. by phone, e-mail or by letter. Sixteen participants accepted to take part (Fig. 1). Notably, all participants had some experience of RTW activities according to TVR prior to enrolment in the RCT. During their structured participation in the current services, however, experiences of two vocational approaches were possible to describe for the participants in this study. If support was still needed, participants could return to the TVR services after the project had ended.

2.2Individual Enabling and Support (IES)

Fig.1

Recruitment process.

The IES approach was developed for individuals with affective disorders and is guided by an Employment Specialist who works closely with the participant in relation to the outpatient team, family, Social Insurance Agency (SIA), Public Employment Service (PES), and employers. The Employment Specialists receive a three-week long training in motivational interviewing from a certified motivational interviewer, cognitive strategies from a Cognitive Behavioural Therapy psychologist, Time-for-Work strategies from an Occupational Therapist and training in supported employment from Supported Employment specialists, reinforced through face-to-face supervision. The Employment Specialists professional role requires high quality, empathetic counselling corresponding to ten IES principles, which can be carried out in any order. These are: 1) handling change and developing motivational and cognitive strategies related to RTW, 2) integration of IES with mental health treatment, 3) having a time-use pattern that supports work-life balance, 4) eligibility based on client choice, 5) competitive employment as a primary goal, 6) job search based on personal preferences, 7) rapid job search, 8) benefit counselling (SIA/PES) at an early stage, 9) ongoing support and work accommodations as needed and 10) systematic recruitment and quality engagement with employers [22].

2.3Traditional Vocational Rehabilitation (TVR)

The TVR process is regulated by the social benefit and unemployment security system. Various professionals in several settings and organizations, e.g. healthcare, municipality, SIA and PES, are part of the TVR process. The service is individualized to a lesser extent and is delivered in several assessment stages that are regulated by the organizations involved. The first step includes reducing symptoms and increasing work ability at a mental health service (1 hour per week). The following step involves assessment of the individual at 50% work capacity (10–20 hours per week) and is performed by the SIA and PES. If work capacity is not met, the individual is encouraged to enter the third step with prevocational activities at the municipality. This is regulated by law at 5–20 hours per week. The final step is vocational training during internship placements (20–40 hours per week), and these placements can lead to employment positions through the PES [18, 26].

2.4Data collection

In-depth interviews (IDI) were performed with participants between January and July 2014. IDI is a loosely structured individual interview method performed on a small number of participants [27]. This interview technique is ideal for exploring and evaluating thoughts on participants’ intervention processes and outcomes and the impact their involvement had on the perception of themselves [25, 27]. It requires concentration and focus and therefore trustful interaction between interviewer and interviewee (participant) is essential for the quality of information generated. The research questions were developed by the RCT research team [22]. In previous RCT and implementation research it had been identified that there seemed to be different ways of approaching and providing support to people with mental health problems in the RTW-process [18, 22, 28]. Furthermore, it is crucial to use qualitative methodology to understand long lasting complex interventions [29]. Since no previous qualitative research has been performed on the topic, the questions were open and concerned exploring experiences related to the RTW-process. This is in contrast to a semi-structured questionnaire with more detailed and specific questions [30]. Research questions were developed in relation the experiences of own and others’ perspectives on work and mental health and support provided in relation to RTW process. Examples of open questions used in this study were related to work: Can you describe your aspiration to work? How do you perceive yourself in relation to work? Does anyone or anything hinder you from applying for a job/to work? Related to the social environment in terms of family, vocational and health professionals: Can you tell about the support you experience from others in your RTW-process? Questions regarding various welfare organizations involved: Can you describe how welfare actors support your aspiration to work? Additional probing questions were asked as needed: Can you give me an example? Could you elaborate on that idea? One researcher (AL), a skilled interviewer in research with considerable experience of working with and supporting people with affective disorders in clinical practice, conducted all interviews. AL had no previous role in the research team and no previous connections between the interviewer and interviewees existed. In 2013, prior to performing the interviews, the interviewer undertook training in qualitative research methods and interview techniques. Since the questions were open, only few, and not standardized into a semi-structured questionnaire, it was not meaningful to test the questions or themes in a strict manner. Therefore, the interview situation was tried out twice prior interviews in the present trial and discussed between AL and UB in relation to the data elicited and aim of the study. The interviews, which lasted for approximately one hour, took place at an outpatient unit and were digitally recorded. All materials were stored on a USB drive held securely in a locked cupboard at Lund University with access restricted to researchers involved in the study.

2.5Data analysis

The interview material was transcribed verbatim by an independent research assistant. The manifest content analysis according to Graneheim and Lundman was used as a method [31]. The reason for using a manifest content analysis was to stay close to the spoken materials that were communicated during the interviews. As a first step, each interview was analysed and meaning units that corresponded to the research aim were identified and tabulated. Each meaning unit was then condensed while conserving the core of words used by the participant. The first author (SP) conducted this passage of the content analysis and the last author (UB) and independent research assisted this process. In the final step, a code was abstracted from the developed logic of words chosen. A code can be understood as fragments of meaningful information. The development of a coding framework was an iterative process among the authors. Once formulated, the codes were compared to each other, read and re-read, for each interview separately and for all together. Similar codes formed categories and sub-categories. Both positive and negative responses could represent the same category. Additionally, to ensure the credibility, the first author (SP) performed text verification following the transcription by replaying the conversation audio files and validating against the transcribed scripts. This additional step was taken to ensure that the transcribed interviews were sufficiently accurate [30]. Finally, the coding categories were combined into themes that corresponded to the more inductive phase of the analysis. To support the secondary aim of the study regarding experience of the users of the two RTW approaches, within and across analysis were performed [32]. This information is integrated within the results.

3.1Experiencing hope and power

This theme concerns the importance of experiencing hope and power in the RTW-process. For example, the following elements formed parts of the theme; how participants perceived others’ views about mental health problems in relation to themselves, disclosure of ones’ problems, roles of importance in their life and view of themselves in terms of self and identity roles and self-efficacy. All participants were represented extensively regardless of the vocational approach.

3.2Professionals’ positive attitudes, belief and behaviour

This theme reflects the discrepancies between TVR and IES-participants in their RTW-process. According to the IES-participants, the Employment Specialist was a key facilitating factor. The specialists were committed to support them, respected them and their situation, and had a genuine interest in supporting them back to work. The TVR-participants on the other hand expressed more negative attitudes towards their vocational rehabilitation in general and the professionals in contact with them. The professionals showed a lack of commitment and empathy, they did not prioritize the TVR-participants in their RTW-process and misunderstood critical situations like the individuals’ mental health problems. A woman, 47-years old (TVR), talked about a time when a handling officer from the SIA called to inform her that she was not ill enough to receive sick-leave benefits and get vocational support. The woman responded;

“I hope she can sleep really well at night because, because I have tried to take my life several times.”

3.3Employing a holistic perspective and integrating mental health and vocational services

This theme corresponds to a variety of hindering factors commonly expressed. The lack of coordination of individual support in the participants’ RTW-process and a change, and amount of, professionals were two such factors. Participation in the IES was on the other hand viewed as a strong facilitator for the RTW-process and the person-centred service provided by the Employment Specialist was highlighted as critical.

4.1Others and own view of self-internalized stigma

Participants in this study expressed to a high degree anxiety concerning stigmatizing of their mental problems and faced dilemmas regarding disclosure to colleagues and employers. These findings are in line with previous qualitative research by Gladman and Waghorn [35]. They found disclosure of mental health status in the work setting to be a critical issue that could lead to discrimination, of not being hired, or even, being fired [35]. Internalized stigma is common among individuals with mental health problems [36] and previous research has also shown discrimination at the workplace was both expected and experienced if one disclosed mental health problems to the employer [35, 37–39]. Better collaboration is needed between employees suffering from depression and their manager to enhance work performance [40]. Whilst it was occasionally seen as a positive step to disclose, the majority felt this would result in negative consequences. However, a distinction could be seen between the two RTW approaches. Even though participants in the IES experienced stigmatizing of their mental problems, they expressed more positive feelings around disclosure when the Employment Specialist supported this within the RTW-process, in accordance with a previous RCT on disclosure of mental health to employers [21]. Furthermore, since the work role was communicated as one of the most important roles in their lives, the risk of a negative outcome when disclosing had high potential impact. This has been seen in previous research such as Hamilton [41] who observed individuals with mental health problems experienced to large extent discrimination when searching for or retaining a job. A systematic review where employers expressed their feelings about hiring a candidate with depression showed this not just to be an internalized stigma. These employers considered depressed individuals to be less likely to be appointed and were less positive in terms of hiring a person with depression than a person with a physical disability [37]. In our study participants with depression showed a great concern and fear of being excluded in the social context and of having to face disadvantages at work if their problems were known. One could ask why individuals with depression feel stigmatized in the work setting but also in other social contexts including within their own family, when the family role is also seen as so important for them? Many reasons could lie behind the lack of understanding in the family context. Diminished participation in family activities, a lack of contribution to the work of the household (leaving the partner with the majority of chores) and not contributing to the household economy could lead to stress and a lack of understanding regarding the underlying problems. When reviewing the interview material, it was evident that lack of support from the family was a great sorrow for those who experienced it. This result agrees with the findings of a previous qualitative study (n = 537) also showing discrimination in the family to be common due to having a mental illness as seen as a lack of belief in the illness to be genuine [41]. This burden is brought to the RTW-process and it is important to consider when working alongside these individuals. This knowledge of how the participants in this study viewed themselves and their feeling of stigmatization and conversely of hope and power for their RTW are critical factors. Including these findings could improve the RTW intervention in a material way among mental health professionals.

Conceivably there is a macro-effect of lack of knowledge and understanding about mental health in society and with increased awareness, prejudice could become less prevalent, as addressed in the literature of mental health literacy [34, 42]. Another reason closer to the circumstances of the individual could be the time and service gap between the mental health care and the vocational rehabilitation as seen in the TVR approach. This could impact on the depression in a negative way and prolong or delay a positive outcome [7] when in contemporary society work is a measure of value and success. Lower occupational function can lead to social exclusion [1]. Hence when an individual has a depression and is also unemployed it could increase the risk of being stigmatized in a double sense.

4.2Professionals are a decisive factor for a successful RTW-process

Most of the TVR-participants communicated deficiencies in their RTW-process such as the rehabilitation not being centred on their needs. They conveyed a lack of understanding, empathy and belief from the professionals, which was seen as significantly negative. This has also been observed by Lammerts [43] who identified professionals’ difficulties to find work solutions like competitive jobs most probably because of a lack of belief in positive RTW outcomes. We find it notable that professionals in this field did not appear to demonstrate supplementary knowledge about depression to be better able to support the service users’ needs to reach a successful outcome. When working with individuals suffering from depression who are returning to work, this lack of engagement, faith and belief in the individual are seen as fundamental ingredients. The individuals already doubt to a great extent their own ability to work and if the professional does not support the opposite view a successful outcome is less likely. This has also been recognized in a previous study to be a concern, when clients with mental health problems described too little support from vocational rehabilitation agencies and no consideration of their personal wishes [43]. Having an individual approach in the RTW-process of individuals with depression is of importance according to Andersen [44]. In contrast, individuals participating in IES conveyed a much more positive experience. They felt their Employment Specialist supported them and wanted to help. Participants believed their rehabilitation was personalized by considering their wishes and interests and that they were empowered to make their own decisions. An IES trial by Bejerholm [22] shows the IES approach has a more successful employment outcome along with a reduced depression and increases quality of life compared to the TVR approach.

4.3A holistic perspective throughout the RTW-process

Most of the TVR-participants described negative experiences including a lack of coordinated, person-centred approaches and overly bureaucratic structures, which were also identified by Lammerts [43]. In our study, the IES-participants, who all had some previous experience of TVR, expressed a switch from negative to positive RTW experiences. Their individual needs were in focus, not only their diagnoses and problems and the outcome was to secure a real job, not prevocational, work training or internships, which could be seen as degrading. A previous study also showed the importance for these individuals of a real job rather than an internship [45]. Despite depression being among the most prevalent illnesses in the western world [43] it is discouraging that experiences displaying such a lack of knowledge and understanding for individuals’ needs exist. As Chisholm [6] reports, this not only causes the individual to suffer but also society as a whole, which forgoes the productive potential of individuals not actively participating in the workforce. The financial investment in effective treatment of depression leading to employment would according to this analysis deliver a significant positive return for the economy. Whether this is simply a lack of mental health literacy among the professionals involved or other reasons that impact the service delivery requires further research.

Joyce [10] showed in a meta-review that to promote functional recovery after depression requires integrated approaches that include functional goals such as RTW exposures as part of the treatment. Symptom focused interventions such as medication and psychological treatment showed limited effect on the work-related outcome and to withhold the RTW process until the individual is symptom free did not show better outcomes. On the contrary, the RCT of which this study is part [22] showed a higher employment rate for individuals with affective disorder when using the IES approach and placed in employment promptly, as reflected in this study’s demographics.

4.4Methodological considerations

In this study, a purpose sampling was used in terms of diversity regarding age, gender, service, Employment Specialist or handling officer and outpatient unit providing a broad view of service users’ experience. This technique increases the trustworthiness in qualitative research and increases the possibility to “shed light on the research question from a variety of aspects” as it broadens the possibility of having participants of different ages, gender, diagnoses etcetera [25]. IDI was a method that worked well in gaining detailed information of the participants’ thoughts and experiences. The interviewer had long clinical experience working with individuals with depression and used an effective interview technique [27]. It could be argued that the sample size of this study was insufficient to draw strong conclusions. However, it was never the purpose of this qualitative research to generalize. Instead the focus has been to show the broad opinion and experiences from these specific individuals. The use of quotations was limited to those expressing content that increased the credibility of the analysis [31] and included to give the reader a deeper understanding. Of 31 possible participants, 15 chose not to participate. It is not possible to fully understand the causes however recruiting participants is a common problem with similar participants. In a qualitative study of individuals on long-term sick-leave with depression and stress conducted in Denmark, only 20% agreed to participate [44]. In our study, even with a dropout of 15 participants it was clear saturation was reached when consistent views of the experience emerged [27].