Factors Affecting Mental Health Professionals’ Sharing of Their Lived Experience in the Workplace: A Scoping Review

As suggested by O’Brien and colleagues (48), an iterative approach was taken to searching the literature, whereby initial database searches in Scopus and PsycINFO were used to read broadly on the topic and refine the research question and search terms. Identified in the literature were factors that both encouraged and discouraged MHPs with lived experience from sharing their lived experience. Broadly defined, these included factors that MHPs perceive within the environment and those that are related to their own beliefs and feelings about disclosure. Thus the research question guiding this review was, “What factors enable and constrain the disclosure of lived experience by MHPs?” A search strategy was devised based on terms found in the literature. Searches were run in PsycINFO, MEDLINE, Embase and CINAHL databases in September 2019. Following initial searches, alerts were created for each search, and results were reviewed by the first author for any new studies published until December 2019. Keywords and subject headings were modified to suit each database. (Examples of search terms used are listed in an online supplement to this article.)

In addition to the database search results, three more studies that met inclusion criteria (see below) were found in the reference lists of included studies. Two were studies that were not peer reviewed—one published online by a university collaborative and the other by a charitable foundation. A Google search using the search terms “clinicians with lived experience” and “disclosure of lived experience by mental health professionals” located an additional peer-reviewed article. A manuscript currently under review was also included, as were one article from a previous database search and one article sent by a colleague. (A PRISMA diagram in the online online supplement gives an overview of the screening and selection process conducted with online Covidence software.) In total, 6,554 unique titles and abstracts were screened by the first author, and 6,442 studies were excluded from full-text review. Throughout the title and abstract screening process, the first three authors met and progressively refined inclusion and exclusion criteria. Full-text screening of 112 studies was independently conducted by two reviewers (A.J.K.; L.M.B. or T.L.F.) with the criteria described below; conflicts were resolved by a third reviewer (L.M.B. or T.L.F.).

Studies were included that reported experiences of or attitudes toward disclosure of lived experience by qualified MHPs to colleagues and supervisors. Participants included MHPs with lived experience and their colleagues and supervisors. Because a secondary aim of our review was to ascertain the current research available, we limited included studies to primary research of any design, published in peer-reviewed journals, as research theses, or as online reports of research findings.

Studies dealing exclusively with disclosures to service users were not included. Publications dealing only with professionals’ lived experience of recovery from substance addiction and abuse were excluded, owing to the well-established practice of sharing lived experience in this field. Studies that dealt exclusively with students of mental health disciplines were beyond the scope of this review but may provide useful data for future interventions. Because of resource limitations, only documents available in English were included.

Of the 89 publications subjected to full-text review, 21 were excluded because they were not related to disclosure of lived experience in any context. Of the remaining publications, 55 were excluded that were not primary research, in that they did not involve a recognized method of data collection or analysis to explore the topic. These included 23 personal narratives by MHPs with lived experience. Twelve publications that were related to disclosure by non-MHPs, including peer workers, those working outside mental health services, and students of mental health professions, were also excluded. Five dealing exclusively with disclosure to service users and four related to disclosure in the context of help seeking were also excluded.

Following full-text review, 25 studies remained for critical appraisal and data extraction. The first author reviewed the included studies by using the McMaster University critical appraisal forms for qualitative and quantitative studies, further excluding two case vignette studies because of the risk of social desirability bias (49) and lack of data related to our question. The first author initially read and extracted the following data to describe the study: first author, year of publication, title, project purpose, study design, participants, researcher perspective, recruitment, data collection, data analysis, overall findings, recommended interventions, and limitations. An abbreviated summary of each study is provided in Table 1 (11, 15, 19–21, 26, 32, 40, 50–63).

Given the range of research methods represented in the included studies, we adopted a narrative synthesis approach to identify overarching themes in the reported findings (33, 64). With the assistance of the NVivo 12 Plus Software package, the first author extracted the reported findings of studies into three data sets representing the categories of “constraining environmental factors,” “enabling environmental factors,” and “intrapersonal factors,” which were identified in earlier reading. Thematic analysis was then conducted by using the approach described by Braun and Clarke (65) to inductively code published quotes by research participants and the reported findings or results of qualitative and quantitative studies. Codes were then progressively refined into subthemes representing factors identified in the studies as affecting MHPs’ decisions to disclose, and content analysis was applied to determine the frequency of each factor across the included studies. Finally, these subthemes were synthesized into the overarching themes they represented, with reference to those identified by other authors.

The entire review process as described by Arksey and O’Malley (33) was conducted from July to December 2019. Institutional review board approval was not required because the review included only previously published data.

More of the included studies involved MHPs with lived experience (N=13 studies; 11, 20, 21, 50–52, 55–59, 61, 63), compared with persons in the general mental health workforce (N=9; Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review, 2019; 15, 19, 32, 40, 53, 54, 60, 62), with and without lived experience, including peer workers. One of the latter studies included the perspectives of service users and carers (54). Although most studies included professionals from a range of disciplines, four focused specifically on the experiences of nurses (40, 55, 56, 59), two on psychologists (20, 60), and two on psychiatrists (26, 61). Eight studies were conducted by researchers who identified themselves as MHPs with lived experience, within the publication itself (19–21, 53, 56, 59, 61, 63).

Authors employed a wide range of research methods to explore this topic. Of the included studies (N=23), 19 included qualitative data (11, 20, 21, 32, 40, 50–59, 61–63; Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review) and four included quantitative data only (15, 19, 26, 60). For data collection methods, eight studies used interview-based data (Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review, 2019; 20, 21, 40, 50, 53, 55, 58), seven used surveys (11, 15, 52–54, 57, 60), five used a mixed-methods approach of quantitative survey data combined with either open-ended survey questions or semistructured interviews (11, 52–54, 57), and two used focus groups (Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review, 2019; 32). Five studies analyzed the written narratives of MHPs with lived experience by using ethnographic, self-study, or discursive approaches (51, 53, 56, 59, 61). Harris and colleagues’ study (19), the only evaluation of an intervention, employed pre- and post-intervention measures, finding significant improvements in stigma beliefs and disclosure. Thus key attributes of the intervention were included in the data set.

Although studies incorporating qualitative data contributed more nuanced data, attention to data saturation, diversity in participant sampling, and descriptions of participants and where they worked were often lacking, limiting the generalizability of findings. Similarly, researchers adopting quantitative methods sometimes made claims that were inadequately supported by a representative sample. Variability in study design and findings reflected differences in the authors’ approach to the topic that were seldom explicitly addressed.

Table 2 provides a summary of the subthemes or factors and their frequency across the included studies (N=23). Among factors identified as discouraging MHPs from sharing their lived experience, two overarching themes were identified—namely, the “impaired professional” (21) and the “us and them” divide (66). In the category of enabling factors, the themes of the “wounded healer” (67) and continuum beliefs about emotional distress (68) were identified. A theme of internal conflict between opposing paradigms was identified, which we named “negotiating hybrid identities.” A summary of these five themes is provided in Figure 1. The arrows indicate that these themes do not exist in isolation but interact to influence decisions by MHPs with lived experience about whether to disclose in the workplace. Within each of these themes, specific factors mentioned by studies are described below.

The “impaired professional” theme (21) was reflected in approaches to disclosure of lived experience among MHPs that specifically focus on the potential risks of experiencing emotional distress while working. This theme featured most strongly in studies that referred to Richards and colleagues’ (21) concept of “allowed ways of being a professional.”

In workplaces that discouraged the sharing of lived experience, MHPs with lived experience received direct or indirect messages that experiencing emotional distress, or sharing that lived experience, was inappropriate within their professional role. Some studies described negative responses to disclosure by colleagues, which included nonverbal and verbal microaggressions (69). “While I do get support from [other] therapists I also get lots of ‘eye rolling’ ” (53).

In some studies, MHPs with lived experience felt pressure to conform to the role of invulnerable professional, from both colleagues and service users. “I actually had a client who Googled me and came in and said, ‘Hey, are you fit to practice?’ . . . I was like, wow. She’s really voicing probably something that other people are thinking” (20).

Johnston and colleagues (54) found that although most participants felt it was appropriate for MHPs with past experience of an eating disorder to work in the field, this view was less common among professionals without lived experience (71.9%) than it was among service users (83.9%) and caregivers (81.8%). This was echoed among MHPs with lived experience who reported hostility from colleagues at times when their work performance was affected by emotional distress. “There is nowhere to be if you are feeling fragile. The message is, ‘Don’t come into work because if you can’t cope with what’s in front of you, you have no business being there’” (21).

The “impaired professional” theme is reflected in beliefs regarding the capacity of MHPs with lived experience to function in the workplace. MHPs with lived experience felt the effects of these beliefs in the form of discrimination in response to disclosures, which in turn affected their future decisions to disclose in the workplace. Discrimination most commonly took the form of lack of accommodation in the workplace but also included discriminatory mandatory reporting requirements and return-to-work practices. “This guy had no option—they wouldn't let him work less, which obviously is probably why he left in the end” (40).

The “impaired professional” theme was acknowledged explicitly and implicitly in included studies as contributing to the “culture of nondisclosure” in workplaces. “The culture is still to hide it” (11).

Participants in some studies reported either that they were actively discouraged from sharing their experiences or that they themselves cautioned others about doing so. “I was told . . . by a couple of colleagues . . . you never disclose this again, you don’t talk about this to your colleagues. People take advantage” (21).

Not discussing lived experience openly in the workplace resulted in colleagues resorting to indirect forms of communication. “The nature of a nurse when there's something going wrong with a coworker is to get in the tearoom and have a ‘sook’ [whining as a technique to gain mutual support] about them behind their back. We really need to change that culture” (40).

Lack of awareness of colleagues who were experiencing emotional distress also meant that colleagues were likely to attribute impaired work performance to personality flaws, despite their training and experience. One nurse in Joyce and colleagues’ (40) study, who was aware of a colleague’s struggles, felt torn between protecting the colleague’s privacy and a desire to encourage others to “give her a break.”

Some studies drew the link between the culture of nondisclosure and recovery orientation, describing Cohen and Cohen’s (12) “clinician’s illusion.” “I think there’s that fear that they don’t want you to disclose because you could relapse or because you’re not really recovered because that’s not possible . . . . [I] want people to know that you can be fully recovered” (53).

The “impaired professional” theme was reflected in MHPs’ feelings that their lived experience was seen as a liability within the workplace in general or by their supervisors. Participants reported that some colleagues and supervisors focused on the potential for impairment of work functioning, rather than on the benefits of drawing on lived experience to enhance their practice. In Johnston and colleagues’ (54) study, over 50% of respondents feared that the therapist might be overinvolved, and one-third expressed worry about the therapist. This attitude was echoed by a participant in Infranco’s (53) study: “Some supervisory and administrative staff were dismayed by my self-disclosure and expressed concern (though not directly to me) about my ability to do my job adequately, despite this never before having been a question.”

Sometimes, colleagues simply failed to acknowledge any benefit of lived experience, as reflected in Johnston and colleagues’ (54) finding that professionals without lived experience tended to see those with it as roughly equal, whereas service users, caregivers, and professionals with lived experience saw it as an advantage. “In terms of anybody acknowledging my experience as anything valuable was nonexistent” (21).

Supervisors played a role in communicating the undesirability of disclosing lived experience in the workplace through disciplinary approaches to the management of episodes of emotional distress, surveillance, and abuses of power. “For my entire four-week graduated return to work, everything I did was closely scrutinized. If I gave a medication, the educator quadruple-checked the order. Almost daily I had to meet with the manager and the educator, and these meetings focused solely on what they thought wasn’t going well” (59).

Linked to ideas about acceptable professional behavior was the sense of a divide between service users and professionals. Studies referred to an “us and them” divide between users and professionals that made it difficult for people to inhabit both identities simultaneously. Von Peter, a psychiatrist, reflected on his and his peer worker colleague’s experiences of being subject to “category work” that erased the diversity of both of their personal and professional experiences (61). Participants in other studies described that this divide was reinforced by stigmatizing language and stereotypes. “That’s a different identity [professional and service user] . . . a totally different world, they are different people” (21). The “us and them” divide was also experienced by MHPs with lived experience in their interactions with other service users, who sometimes treated them with mistrust or open hostility. “And well, you’re a mental health professional, then you’re not really a survivor. You don’t know what I’ve gone through” (20).

Similarly, in workplaces that focused solely on the use of lived experience by people in peer-designated roles, there was skepticism by peer workers about the value of MHPs sharing their lived experience because it could be “turned on and off” (Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review).

In contrast to these factors were those that enabled MHPs with lived experience to share their lived experience, which reflected a bridging of the “us and them” divide.

Drawing on Jung’s seminal work, the “wounded healer” theme (67) represents the lived experience of emotional distress as a resource MHPs can draw on in their work with service users. This theme was reflected in descriptions by participants that lived experience was valued in their workplaces. In these workplaces, professionals were invited to share their expertise with other staff and encouraged to draw upon that expertise in their work with service users. “My current employer recognizes that many providers in our field are also survivors and have stories to share. The employer invites dialogue about recovery and offers these stories to be shared with clients as supportive outreach” (53).

Specific descriptors of workplace cultures that valued lived experience included supportive responses to disclosure by colleagues and the sharing of lived experience by other staff in non–peer-designated roles.

Senior staff also played a role in championing the sharing of lived experience within the workplace, including disclosing their own experiences. A key part of Harris and colleagues’ (19) intervention was directed at the leadership of the organization, with significant impact on stigma beliefs and disclosure within the overall staff group. Similarly, Morgan and Lawson (32) made several recommendations targeting senior leadership on the basis of their experiences with the Hidden Talent in Devon project.

The valuing of lived experience was reflected in workplaces that provided guidance and support for individuals to share and use their lived experience. This support was provided through group and individual supervision, training, and coaching facilitated by peer workers and by internal groups for MHPs with lived experience to meet for mutual support and reflection. “Participants who were able to disclose because they judged their supervisors to be safe and supportive often received quality supervision regarding countertransference” (50).

Similarly, human resource practices that recognized the value of lived experience of emotional distress included recruitment processes that characterized lived experience as desirable and that offered flexible work arrangements. Supportive employers took a flexible and strengths-based approach to staff returning to work after an episode of emotional distress. “I got a phone call from management, senior management. . . . They basically said to me ‘Look, we’ve created an opportunity for you to have a teaching role . . . or you can go back to your role,’ which I thought was fabulous of them” (55).

Belief in the continuum of emotional distress acknowledges that we all experience emotional distress to varying degrees and that the categories of “healthy” and “mentally ill” serve to reinforce stigma toward those falsely deemed as outside the “norm” (68). Participants in seven studies referred more generally to this theme as breaking down the “us and them” barrier between staff and service users (Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review, 2019; 19–21, 51, 53, 61). In some workplaces, peer workers provided training for all staff, explicitly drawing on a continuum model of emotional distress. “After going through that class and putting myself in their shoes and trying to find my story, and listening to the stories, I find that we all have a lived experience and we all have a recovery story within us” (Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review, 2019).

Having a workplace culture that is open, inclusive, and generally supportive of staff well-being reflects an acknowledgment of staff as human beings with emotional needs in the workplace. Staff in some settings attributed this culture to retention of staff, including senior management. “I think maybe where I work’s quite unique in that we do. . . . A lot of us have been there a long time, and we do really, you know, show concern for each other. I don’t really know what else to say—like, I think that makes a difference that we’ve all been there so long” (55).

As indicated by a participant in Byrne and colleagues’ study that is in review, workplace culture was strongly influenced by supportive management practices that communicated the importance of the well-being of all employees. Supportive workplaces were reflected in positive relationships between supervisors and staff. “It says a lot about a company when you feel open enough to come to your supervisor and just be completely and blatantly open with what's going on with you in your life” (Byrne L, Roennfeldt H, Davidson L, et al., manuscript in review, 2019).

Awareness of disability discrimination legislation and the provision of reasonable accommodations were also highlighted as supportive factors, reflecting workplaces that acknowledged and valued diversity in the workforce.

A strong theme of intrapersonal conflict was identified within the personal positions and feelings that MHPs with lived experience reported with regard to sharing their lived experience. Their decisions to disclose were influenced not only by environmental factors but also by where they were in their recovery journey, their desire to engage in activism, or their career stage. Some explicitly referred to difficulties integrating their professional and service user identities. “I have got problems because I haven’t managed to integrate fully both roles and feel comfortable in different environments” (21).

Drawing on an “impaired professional” theme, MHPs with lived experience commonly referred to their fear of stigma or the fear that their knowledge might become de-legitimized. “I refrain because I am concerned that they’ll start seeing all my insights as springing from my personal trauma experience and come to minimize my professional fund of knowledge” (52).

Sometimes these fears were based on past experiences of stigma and discrimination. White and colleagues (26) found that psychiatrists with lived experience were more likely than psychiatrists without lived experience to choose not to disclose future emotional distress to colleagues and more likely to cite stigma as the reason. Fears about stigma, however, were deemed credible by MHPs without lived experience. “I think, yes, there is a risk that if you disclose you might not be able to progress maybe as quickly as others who might not be suffering from mental illness” (62).

Professionals managed this risk by “testing the waters” (53), assessing the safety of the environment before making a decision to disclose, or by postponing disclosure until they felt secure that they had established their unique identity with colleagues. “What I always do is I wait ’til I sort of prove myself and people sort of say, you know, ‘You’re a really good clinician’ . . . and then I say, ‘Well, I have got experience of it myself’ ” (58).

Fear of stigma was reported in one study to be influenced by the nature of mental health interventions people had received; medication use was reported as more stigmatized than participation in psychotherapy (52).

Although stigma was sometimes internalized by study participants, expressed as a sense of personal shame, studies more commonly reported that professionals had an internal sense of pride in their lived experience as an asset for mental health practice, drawing on the “wounded healer” paradigm. “I don’t think I had the slightest understanding about what it was like for them, not a clue. I was very good on the kind of academic theory . . . but in terms of the way I worked with clients, I actually shudder now. I learned so much very quickly from my fellow patients, things that I’d never really understood or even had any conscious thought about as a professional” (58).

Godfredsen (52) reported that physicians were less likely to disclose than psychologists, a finding supported by von Peter and Schulz’s (61) reflections on socialization within the medical profession. “We are systematically trained to maintain a distance and make ourselves available as an ‘impersonal machine,’ in a manner of speaking, to be of the greatest use to the persons in our care, and also to protect ourselves and them.”

Godfredsen’s (52) finding that women were more likely than men to disclose to colleagues and supervisors may reflect the coalescence of gender norms and professional imperatives regarding vulnerability.

Investment in professional identity may have influenced the 12 professionals in Kottsieper and Kundra’s (57) study, who had not disclosed because they felt that their lived experience was irrelevant to their role, whereas some professionals in Richards and colleagues’ (21) study openly rejected their professional identity. “I’m unusual in that . . . I publicly say that I have recovered from all my academic and professional trainings” (21).

For MHPs with lived experience who were currently experiencing emotional distress, the “impaired professional” theme was evident in both decisions to conceal and to disclose their distress. Participants were less likely to share experiences of distress with colleagues at times when they were currently struggling but able to conceal this in the workplace. Conversely, some felt an ethical duty to disclose or disclosed as a means of seeking support in the workplace. A participant in one study, who perceived her work performance to be negatively affected, reported disclosing to colleagues in order to provide explanation for her behavior and avoid negative judgment: “I decided that I would actually tell them why I’d been off and my diagnosis. Not that I necessarily wanted them to know, but . . . I didn’t think I could cope with them accusing me of something if they didn’t think there was some validity to my behaviour” (55).

Integration of both “wounded healer” and “impaired professional” identities was evident among MHPs who chose to disclose in psychotherapy with service users or in collegial or supervisory relationships, acknowledging their lived experience as potentially helpful and harmful in the therapeutic relationship. Making use of supervision was evidently contingent on disclosure. “Make sure you are open with a supervisor about your history and have it be an active part of supervision/case consultation” (53).

Reflecting the burden of concealment, many MHPs with lived experience reported being motivated to share their lived experience as a desire for authenticity, describing a sense of effort and distress associated with keeping a part of themselves hidden. “I am tired of hiding, tired of misspent and knotted energies, tired of the hypocrisy, and tired of acting as though I have something to hide. One is what one is, and the dishonesty of hiding behind a degree, or a title, or any manner and collection of words is still exactly that: dishonest” (51).

In addition to a desire for personal authenticity, the decision to disclose was sometimes motivated by the desire to challenge stereotypes. “[Disclosure] can break down the ‘them and us’ perception, which in turn can influence changes in stigma and discrimination” (32). “I just feel like it’s important to show the example that I’m still working on myself. . . . So, I always share parts of my story, or even my current life, with people when it’s appropriate and when it would be helpful” (53).

Thus, in this context, their hybrid identity became a resource for reducing stigma, and disclosure became a form of “insider activism” (21).