Abstract
Introduction
A brain injury can produce a unique web of physical, cognitive and psychosocial challenges [1, 2], resulting in the inability of persons with brain injury (PWBIs) to fully integrate socially and vocationally into their chosen communities. Unemployment is high among PWBIs, and it is estimated that only 30–70% of individuals return to competitive employment [3, 4]. Failure to return to work can result in poor psychosocial outcomes, incomplete community re-integration and economic dependence [5–9]. In addition, work re-integration can be complicated by social barriers at the workplace, such as negative misperceptions about PWBIs and resulting stigma and workplace discrimination. For example, in a study of individuals with mild TBI who attempted to return to work, PWBIs reported misperceptions regarding their work abilities and being exposed to discriminatory comments such as “jello head” in the workplace [10]. Similarly, family members have raised concerns regarding misinformation about PWBIs’ abilities, and the associated challenges that workplace discrimination and a lack of accommodating workplaces can pose to full work re-integration [11].
Perceptions of persons with brain injuries and stigmatization
Ralph and Derbyshire argue that while public knowledge regarding concussion has increased slightly, many misperceptions regarding PWBIs persist amongst the general public [12]. First, there is the perception that recovery following a brain injury follows a similar trajectory as other physical injuries, resulting in a poor understanding of the long-term sequalae of brain injury, particularly cognitive challenges [12]. For example, while many understand that memory impairments can arise following a brain injury, there is a poor understanding of how memory impairments can impact daily functioning and lead to variability in daily performance [14, 15]. Second, there is the perception that PWBI have ultimate control over their recovery process and if they exert enough effort they can recover fully [12–15]. This can lead the public and employers to attribute observed performance challenges to “laziness” versus the brain injury sequelae [14, 15]. Third, PWBIs who are perceived to be directly responsible for their accident or illness may receive less assistance from service providers [12, 17].
Misperceptions can be particularly detrimental when they lead to stigmatization. Stigma has been characterized by Erving Goffman as an attribute, label or mark placed on an individual (or group of individuals) who are perceived as deviating from a “norm” [18]. Link and Phelan describe how stigma consists of three converging processes: 1) labeling of human differences as negative attributes; 2) linking labelled individuals to negative stereotypes; and 3) treating stigmatized individuals as “others” [18]. Similarly, Krahn describes how stigmatizers make assumptions and attribute undesirable labels to stigmatized groups, thus serving to distinguish the stigmatized as “others” [19]. This can lead to the loss of status, the discrediting and “spoiling” of stigmatized persons’ identities, harassment, and unequal access to opportunities (i.e. discrimination) in health, work and social contexts. As Link and Phelan argue, stigmatized groups receive less of the “good things in life,” that social and economic systems have to offer and must contend with more of the “bad” things (e.g. poorer access to work, health, social support services, income, greater stress) [18]. Furthermore, internalizing negative stereotypes can lead stigmatized persons to develop negative attitudes about themselves and others within their stigmatized group [20, 21].
Persons with brain injuries may be particularly susceptible to stigmatization due to their association with other highly stigmatized groups, such as individuals with mental health challenges, epilepsy, or intellectual disabilities [13, 15]. Researchers have demonstrated how the term “brain” injury conjures up greater negative connotations than “head” injury [13, 19]. Lay persons may also be more sympathetic to persons with physical disabilities, than psychological challenges [15]. In their systematic review on public perceptions of brain injury and PWBIs, Ralph and Derbyshire reveal that PWBIs are perceived to be less intelligent, less mature, less friendly, less sociable and less employable than persons with other injuries [12]. Thus, PWBIs with visible physical limitations can experience discrimination due to their visible “otherness” and association with individuals who look and act disabled [12], while those with an invisible (or less visible) psychological disability (e.g. cognitive, emotional) can experience discrimination when their behaviours are wrongly attributed to personality characteristics, rather than disability-related challenges [15, 19].
Return to work and service delivery systems in Ontario Canada
In the province of Ontario, Canada where the current study was conducted, PWBIs may receive different services to assist with return to work goals, based on how and where their injury occurred. For example, if injured in a motor vehicle accident, they will be able to receive privately funded services through their automobile insurance, to assist them with returning to independent community living and their pre-injury job [22]. If injured at the workplace, they may be eligible for vocational and medical rehabilitation services (to support their medical recovery and early and safe return to their pre-injury job) through the Workplace Safety and Insurance Board [23]. If injured elsewhere, and private insurance is not available, they may be referred for outpatient rehabilitation services (which are publicly funded through the provincial health plan) for time limited assistance with their community and vocational rehabilitation goals. Once deemed substantially disabled and unable to work, they may qualify for financial assistance and vocational support services through the Ontario Disability Support Program (ODSP) [24].
Employment discrimination
There are several international and national human rights legislations which aim to eliminate discrimination and acknowledge all citizens’ rights to equality in the workplace (e.g. the UN Convention on the Rights of Persons with Disabilities [25], the Americans with Disabilities Act in the US [26], the Equity Act in the United Kingdom [27]). In Canada (where the current study took place), citizens are protected from employment discrimination, throughout the employment cycle (including finding, securing and maintaining employment), under a number of both federal (e.g. Canadian Charter of Rights and Freedoms [28], Canadian Human Rights Act [29]) and provincial statutes (e.g. Ontario Human Rights Code [30], Accessibility for Ontarians with Disability Act) [31]. However, while it is assumed that these legislations enhance persons with disabilities’ participation in labour market activities, empirical evidence suggests that employment rates for persons with disabilities in Canada remain low [32] and employers may continue to experience challenges in developing inclusive workplace cultures and the supports required to accommodate injured or ill workers [33].
Anti-discrimination legislation alone may also be inadequate for changing perceptions and enhancing workplace integration and participation. Negative perceptions about persons with disabilities in general, and PWBIs more specifically, continue to be linked to employment discrimination including: denial of opportunity for new employment and or promotion; failure to provide reasonable accommodations; undue demotion, termination, being asked to quit or retire; and harassment or intimidation at the workplace (e.g. bothering, tormenting, ridiculing, coercing) [18, 34–36]. In one US study researchers found that harassment and discrimination against PWBI consisted of ridiculing, tormenting and bothering [36].
Disclosure decisions
Fear of being discriminated in the workplace can in turn influence PWBIs decisions to disclose/not disclose their brain injury. Disclosure considerations can include whether or not to disclose, when to disclose, to whom, and how much to share when disclosing [37–40]. In their systematic review of disclosure of mental health issues within the workplace, Brohan et al. [37] identified a number of reasons that workers may choose to disclose (e.g. wishing to be honest, concealment is too stressful, wanting to be a role model and educate others about the needs of individuals with mental health challenges), or not disclose (e.g. fear that they will not be hired, will not be treated fairly, will be ostracized, will lose credibility, perceive their illness to be a private matter). Wilton discusses how individuals with varied types of disability express concerns regarding disclosure in the workplace, how employers may be more likely to support a request from an existing employee (than a potential new hire), and how enhanced precarity of work (e.g. prevalence of lower paying jobs with less job security) in current labour markets may further complicate disclosure decisions [38].
Purpose
Despite the identified susceptibility of PWBIs to stigmatizing perceptions, and anecdotal clinical evidence that workplace discrimination can impact work re-integration for PWBIs, there has been little empirical investigation of how PWBIs may experience stigmatization, and how this may result in experiences of discrimination at the workplace. To fill this gap, in this study we examined return to work following brain injury with the aim of answering the following two questions: How are issues of workplace stigma and discrimination experienced by PWBI and understood by their employment service providers? How are issues of stigma, discrimination and disclosure managed at the workplace for PWBI?
In this study stigma was defined (as characterized by Goffman) as an attribute that is discrediting and identifies the stigmatized individual as one who possesses an undesirable difference [40]. Employment discrimination was considered as it related to recognized examples of discrimination within the Ontario Human Rights Code (a key legislation governing the rights of individuals with disabilities in Ontario, Canada) [30]. These included: stereotypical assumptions based on a person’s presumed traits; behaviours which exclude individuals or deny benefits; failure to accommodate; and harassment (e.g. unwanted comments, actions or humiliation) [30]. Disclosure was defined as the process of communicating information about oneself to another person [37].
Methods
A descriptive exploratory qualitative research design was employed and ethics approval was provided by the University of Toronto. Due to the potentially sensitive nature of the discussions, individual semi-structured interviews (versus focus groups) were completed with PWBI to allow them to confidentially share their individual experiences of re-integrating back into the workplace and to candidly discuss any experiences related to stigma and discrimination. Interviews with employment service providers allowed us to develop a broader and more fulsome in-depth exploration of workplace stigma and discrimination and to understand how providers assist PWBIs with managing issues of disclosure and workplace discrimination.
Recruitment, inclusion and exclusion criteria
Expert key informants were purposefully sampled to ensure that study participants had expertise with return to work processes following a brain injury, and could provide in-depth discussions of their experiences of these processes. These included PWBIs who had attempted or secured employment following their brain injury and employment service providers, who specialized in providing employment services to PWBIs. PWBIs were included if they were over the age of 18 at the time of interview i.e. adults of working age) had suffered a traumatic or non-traumatic brain injury of any severity, had attempted to return to work (either part or full-time), and/or had engaged with an employment service provider to find and secure paid work, or an unpaid work trial, following their brain injury. Service providers were included if they had assisted at least one PWBI with: i) identifying their work interests and goals; ii) securing a job placement; iii) returning to the workplace and/or iv) providing support to employers at the workplace. PWBIs and providers were excluded if they had no experience addressing work-related goals following a brain injury. PWBIs and employment service providers were recruited from three primary community-based programs that assist PWBIs who are unable to find employment independently and/or return to their pre-injury vocations.
Participants
In total fifteen participants (10 PWBI and 5 service providers) provided their verbal and written consent and participated in an in-depth interview. Table 1 summarizes participants’ demographic and work-related characteristics. Data is presented in aggregate format to enhance privacy and confidentiality. All PWBI were either working or engaged in work search activities at the time of the interview. The time since injury for PWBI ranged from 10–37 years, thus representing individuals with on-going long-term vocational support needs. All but one PWBI had secured at least one paying job since their injury and the majority drew from several work-related experiences when discussing their return to work experiences.
Participant demographic and work-related characteristics (N = 15)
Participant demographic and work-related characteristics (N = 15)
While we actively recruited from several community-based agencies all five service providers, and nine of the ten PWBIs who participated in this study, were recruited from one community agency. This agency provides specialized employment services to PWBIs which include sheltered employment opportunities within the agency (e.g. making gift cards for sale) and assistance with finding competitive employment in the broader community (e.g. skill exploration, assistance with job searching interview skill building, job development and job carving, on the job coaching, consultations with employers). PWBIs are eligible to receive services if they have a medically-documented brain injury and are deemed able to benefit from receiving employment supports, as per information gathered during an intake process. In general, this agency assists PWBI who require long-term community supports several years following their initial injury. PWBIs who have received employment services from this agency have been unsuccessful in securing work utilizing mainstream vocational services (which provide services to persons with disabilities versus brain-injury specific services) and typically have on-going physical, cognitive and behavioural challenges.
All interviews were conducted by the second author (who is trained in qualitative interviewing) and were completed in a quiet, private, room to limit distractions. At the commencement of each interview, background demographic and work related information was gathered from each participant to characterize the study sample and to summarize relevant rehabilitation and work experiences. For PWBIs this included gender, marital status, highest level of education, treatments received following their brain injury, and work positions held prior to and subsequent to their brain injury. For service providers this included gender, age, highest level of education, vocational training/job title, and years employed in their current position. PWBIs were then asked in-depth questions regarding their work experiences, challenges finding and securing work, how they were treated at the workplace, their relationships with supervisors and co-workers, how issues related to their brain injuries were discussed at the workplace, workplace supports and if they had experienced incidents of harassment or discrimination at work. Interviews concluded with an opportunity for PWBIs to discuss the advice that they would give to other PWBIs about returning to work.
Service providers were asked to discuss the processes they engaged in, when assisting PWBIs, preparing them to return to work, finding and carving out job opportunities, supporting and monitoring them at the workplace, and working with employers. This was followed by more in-depth discussion regarding the role of social relations in successful return to work, perceptions regarding PWBIs’ rights and abilities to work, reported incidents of workplace harassment or discrimination, and how issues related to disclosure, stigma and discrimination were managed in practice. Lastly, service providers were asked to summarize key personal and support elements they perceived to be most relevant to successful return to work following a brain injury.
Data analysis
Interviews were digitally recorded and transcribed verbatim by a professional transcriptionist to ensure accuracy. An inductive thematic analysis method was employed to analyze the interview data and identify key themes across the interviews [41]. Analysis involves 6 steps: 1) becoming familiar with the data; 2) generating initial codes from the data set; 3) categorizing codes into initial themes; 4) identifying the key themes in accordance with the study objectives: 5) defining and naming the key themes; and 6) producing a scholarly report of the analysis [41]. Two members of the research team read each interview several times to become familiar with the data (step 1). Both then independently generated initial codes, using a line-by-line method and met to develop a preliminary coding book (step 2). Four members of the research team (with expertise in brain injury rehabilitation and employment services) reviewed a sample of interviews and emerging codes to ensure comprehensiveness, recommend additional codes, and ensure trustworthiness in the resulting coding book. Interviews were subsequently inputted into Atlas [42], a qualitative data management software program, and coded using the established coding book. Codes were then categorized into key themes related to the study objectives.
A number of strategies (i.e. triangulation, negative case analysis, reflexivity) were employed to ensure methodological rigour and trustworthiness [43, 44]. First, multiple stakeholder perspectives were gathered and multiple researchers with content and qualitative research expertise participated in the coding and analysis of the data to ensure triangulation. Second, negative case analysis was employed by exploring any contradictory or outlier perspectives. Third, reflexivity, the process by which researchers exposed their decisions and judgments to others, were used to develop an audit trail of analytical decisions made, in order to enhance transparency. This included notes taken during team meetings exploring varied team members’ interpretations of emerging codes [43, 44].
Findings
Three key themes emerged that described PWBI’s and service providers’ knowledge and experiences with workplace stigma and discrimination, and how disclosure decisions were managed. Supporting quotes are attributed to PWBI or providers, but not to specific participants’ in order to protect confidentiality. Illustrative quotes (within the text below and Table 2) were extracted from the interviews of five of the PWBIs and 5 service providers, as not all participants expressed direct concerns regarding stigma and discrimination.
Reported incidents of discriminatory behaviours
Reported incidents of discriminatory behaviours
Across the interviews there were multiple discussions regarding public, employer and service providers’ knowledge of brain injury and perceptions about PWBI. From a public perspective, participants described on-going challenges associated with: i) limited understanding of brain injuries (particularly longer-term cognitive challenges); ii) a limited comprehension of the potential varied presentation of a brain injury; and iii) fears of the unknown that brain injury could engender in others, as illustrated by the following service provider:
I think that people just don’t understand what brain injury is. Brain injury can be someone sitting in a wheelchair [and] who needs help feeding ... [While] other people, you would never know that they have an brain injury until you start speaking with them ... and maybe [you notice] their memory is not quite up to par. So I think for a lot of people and employers, it’s kind of the fear of the unknown. (Provider)
From an employer perspective, providers described reluctance on the part of some employers to hire PWBI, as they perceived that it would be “too much trouble” to support a worker with this type of injury:
As soon as they hear social service agency [who places PWBI], a lot of employers are just not interested. They think it’s going to be too much work. Too much trouble. They just want to hire somebody [without a disability] to do the job. (Provider)
Similarly, PWBI described challenges they experienced in relation to employers’ perceptions of persons with disabilities in general, and with a brain injury in particular:
I had this one supervisor ask me if I could, dress myself ... After I told her that I had a brain injury ... And of course I said yes, I do everything ... But it was just really odd for me to hear that because, I mean, I’m so independent and for so many years. But perhaps it must be her view of disability. (PWBI)
From their own perspectives, service providers also expressed how challenging it could be to carve out and secure a job placement for PWBI - particularly in an increasingly competitive labour market. To successfully establish a job placement providers perceived that they had to “sell” PWBI to potential employers:
Employers, they’ll interview John, who doesn’t have a brain injury, doesn’t have a disability. [Versus] Bob, who is injured, disability ... ideally they should choose Bob, right? But they’ll choose John, right? They won’t specify it and say we didn’t hire you because you have a brain injury, because that’s discrimination, but the challenge [for PWBI is that they are] competing against people who don’t have a brain injury. (Provider)
Theme 2: Incidents of workplace discrimination
PWBI and providers also described discriminatory behaviours, which included incidents of: i) social exclusion; ii) discrimination within the hiring and promotion process; iii) denial of reasonable accommodations; and iv)being subjected to derogatory or humiliating comments while performing tasks at work. Table 2 provides examples of perceived discriminatory behaviours identified across the interviews, with supporting quotes.
While participants described a number of behaviours they perceived as discriminatory (as evident in Table 2), not all study participants reported experiencing or witnessing incidents of exclusion or discrimination in every work situation. As evident by the quote below, although this participant reported experiencing discrimination from some employers and co-workers, he also described an example of receiving assistance from an accommodating employer:
I asked [for help] once. I think it was shovelling snow to get through to the empty milk crates. And the owner said, okay, if nobody else will help you, I’ll help you. Where’s my coat. He came out, he grabbed the biggest shovel and he just went right to work. So that’s something I really appreciated. I didn’t mind working for that guy. (PWBI)
Theme 3: Disclosure decisions
Perceptions regarding PWBI also influenced how PWBI made decisions regarding disclosing their brain injury, and how providers managed issues related to disclosure. As the following provider illustrates, PWBI’ concerns regarding stigma could influence their decisions to disclose (or not disclose) their brain injury to a supervisor or co-workers:
Participant: Some people don’t want their supervisor, co-worker to know they have a brain injury. They think it might affect their employment. Some people just want support getting a job but feel they’re able to maintain it once they get it.
Interviewer: Why do they think it might affect their employment?
Participant: Because [of] the stigma of brain injury.
In addition, for some PWBI the choice or whether or not to disclose was not perceived to be an option. This included individuals with a visible injury (or outward sign of being different), those who required direct on-going supports (e.g. onsite job coaching), or those who needed to request workplace supports or accommodations. As the following PWBI described, physical signs of difference could signal that someone was not “normal” necessitating further explanation, and some form of disclosure:
Interviewer: Did she know about your brain injury?
Participant: Yes, she did.
Interviewer: How did that come up? Did you tell her?
Participant: She said, what’s wrong with your eyes? [I said] Nothing’s wrong with my eyes, what’s wrong with your eyes. I said, my eyes are normal, are yours normal? She said, well, I think so.
Interviewer: How did it make you feel when she asked you about that?
Participant: I felt a bit out of sorts, but I realized I did look different in a way and they didn’t know what to think. I said, which eye? This eye? Or this eye?
Similarly, when asked whether she had disclosed her brain injury at her workplace, a PWBI explained:
Yes ... you know, I’m not positive that I said that I had a brain injury, but maybe because of my limp or something they figured out that there was something not ... Like that I was different from the other people. (PWBI)
The presence of an employment support service provider (at the job interview or the worksite) could identify a PWBI as “different,” thus resulting in a passive disclosure process as described below:
I would say most cases we have to go in and do a little bit of job coaching, so right there, the fact that we have to do job coaching means that the employer is going to know something. ... I would say more than three-quarters of our clients are going to need some job coaching support. So we’re going to have to say something. Not necessarily that they have an ABI, but they have some - maybe some difficulty with memory and we just want to go in and help them set up. (Provider)
Furthermore, for PWBIs who require workplace supports non-disclosure may not be a feasible option, as described by this provider who compared various clients’ options:
The crossing guard, he didn’t disclose it [brain injury] ... The reason is because it didn’t affect his job or he didn’t need extra support with anything he did, so that’s why. But if a client was asking for help [he would need to disclose] (Provider)
Disclosure decisions required PWBI to consider all the factors that may affect their employment outcomes, in a specific work context. As one provider participant noted, disclosure decisions needed to be “individualized” and required one to “look at all the factors in order to see if that [disclosure] would benefit or sabotage the employment.” Participants described the need to carefully weigh the pros and cons of disclosure in relation to: i) an individual’s openness and comfort in sharing with others; ii) his/her specific work situation and; iii) the potential that disclosure would lead to supports at the workplace, as illustrated by the following quotes:
I’ve always been open, so if I’m talking with someone it [disclosure of my brain injury] could just slip out. (PWBI)
I think [the choice to disclose] depends on the person and what they’re comfortable letting other people know about them. But I think in some ways – it could be supportive for some people, because then they can structure their day based on people’s awareness of what they’re dealing with. But I think it’s [also] a double-edged sword for some people; it could prevent them and cause a barrier for them actually having employment, having jobs, so it depends on the situation. (Provider)
Some clients with brain injury go to work and they don’t need accommodations and they’re able to function fine. So for someone like that, disclosing is not going to make things better for them. But for some that are struggling with employment, then disclosing would make it easier for them, but again, it depends on who’s receiving that information and how they’re going to take it. (Provider)
Many participants also described the importance of identifying the best time to disclose. As the following participant described it is important to identify when within the job acquisition process one should consider disclosing:
Whether it’s going to be while we’re applying for jobs, whether it’s going to be for an interview, or whether it’s going to be when you get the job, or whether it’s not going to happen at all. So it’s on a case-by-case discussion. (Provider)
Several providers also suggested that PWBIs who had an invisible (or less visible disability) should not disclose their brain injury, or accommodation needs during the job searching stage, to improve their chances of being hired. The following service provider explained why it is important for PWBI to understand their employment rights and not disclose until a job offer has been secured.
Unless they get a job offer. They don’t have to disclose - so it’s not something they’re going to disclose when they’re submitting their application or resume or during their interview, or during the second interview. It’s not to be disclosed until the job offer. ... .If they wanted to disclose something on their own, we usually encourage them not to disclose whether they need accommodation or whether they fully want to disclose that they have a brain injury until the point of job offer ... Just because of that stigma. (Provider)
Conversely, providers and PWBIs discussed the potential benefits of disclosing (following a job offer) when it was: i) perceived that disclosure would facilitate an employer’s (and co-workers’) understanding of the PWBI’s needs; and ii) facilitate receipt of supports at the worksite:
we’re talking about invisible brain injury where the person would not know unless the person discloses, then it throws off employers. They don’t understand why so-and-so is having difficulty with this. The client, Bob, was working at [a store] and he had trouble ... they would give him instructions, but he would do [one thing], and then he’d be on to another area. The employer didn’t understand why he was not able to focus and concentrate on the one area and follow instructions. He didn’t disclose at all his brain injury to that employer. So the employer knew something was quote, unquote “off”. But they didn’t fully understand. (Provider)
[Disclosure] lets the boss know what to expect from me, what not to expect from me. It lets the boss or your supervisor know why [he/she] should talk slower or talk fast, or whatever your injury is. (PWBI)
Providers also indicated that consideration needed to be given to deciding how to request accommodation, and how much information to share with employers regarding accommodation needs:
We talk about sharing, and [that] we don’t need to tell the employer all the details, but just some of the accommodations that the employer might need to make ... like providing an extra break, or maybe instead of a 10 minute break they need a 20 minute break. (Provider)
I think just letting them [employers] know what accommodations are needed. And leaving it at that, because there is no need for an employer to know what the disability is. They legally can’t ask what the disability is or why they need accommodations or anything. I encourage them to just ask for the accommodations and leave it at that. (Provider)
In addition, providers described coaching clients on how to present themselves to employers, how to introduce their disability as a matter of fact, and how to focus on selling their abilities:
Usually within that discussion [with our clients] there will be a role play to practice how to disclose it [the brain injury]. Usually when clients choose to disclose it’s - and this is something that we learned in one of those trainings was - encourage the client to put it out there as a matter of fact. I’m Joe, I have a brain injury, I was in a car accident 10 years ago. I’m going through my rehabilitation. It’s been 10 years since I’ve been rehabilitated. I’m seeking employment, this is the position I’m going for. These are my skills. So they’ve disclosed. They’ve put it on the table, but they’ve also sold themselves. They’ve talked about their skills. They’ve talked about how they’re suitable for that position. Again, it’s on the table, but it’s not the main issue, it’s not the main centrepiece of the table, it’s just there. (Provider)
Providers described employing similar strategies when establishing relationships with employers and carving out jobs for their clients. These included a brief education regarding brain injury, so that employers did not become overly concerned about the client’s brain injury, followed by a focus on selling their clients’ work abilities and strengths:
In developing that relationship [with employers during the job carving] it’s a lot about educating first. Having a conversation with a potential employer and explaining brain injury. Brain injury101. Given them brief instructions without scaring them off, and then leading them into possible employment positions, what we feel our client is capable of successfully doing, and then having a discussion about the pros of hiring this person versus somebody else. But selling the person as a person, not selling them as, this is Joe with a brain injury. This is Joe, he’s seeking employment. He’s capable of doing this, this and this. So educating them, but steering them away from the brain injury part of it. (Provider)
Discussion
Researchers examining perceptions about brain injuries have identified many misperceptions regarding the abilities and recovery processes of PWBIs [12–15]. Such misperceptions can lead to stigmatization of PWBIs, workplace discrimination and, in turn, influence the ability of the PWBI to fully integrate into the community and employment environments. However, while both research evidence [10, 11] and clinical experience indicates that such misperceptions can arise, there has been little empirical investigation of how perceptions of PWBIs can influence the return to work process, and experiences of stigma and discrimination at the workplace. In this first exploratory qualitative study we examined the experiences of return to work (from the perspectives of PWBIs and service provider) to understand if, and how, stigmatizing and discriminatory behaviours can affect return to work experiences, and how issues of disclosure are managed at the workplace.
Findings from our current study suggest that the public’s understanding of brain injury (and those that have limited experience working with PWBIs) remains limited. In fact, our study participants indicated that members of the public (including employers) continue to lack understanding about the needs of PWBIs (particularly in relation to on-going cognitive challenges). Those who have limited knowledge about brain injury, and limited personal experiences with PWBI may also feel anxious about their ability to support PWBIs within an employment context. Employer’s perceptions of PWBIs, their fears of the unknown, and an increasingly competitive labour market, can create significant employment challenges for PWBIs. Discussions regarding how employment service providers needed to “sell” their clients to employers and how clients were advised to “sell” themselves suggest that providers and PWBIs recognize stigma related to brain injury, and as a mitigating strategy to avoid potential discrimination, advise PWBIs to manage their images, and selectively disclose their injury and/or impairments within employment contexts.
Recommendations for enhancing awareness of stigma and workplace discrimination for PWBI
While not all of our participants described negative workplace experiences, for those who did report discrimination, discriminatory perceptions were negatively linked to their employability throughout the employment cycle, including searching for, finding, and maintaining work. Thus, we suggest that it is important for PWBIs and their service providers to be aware of the potential for stigmatizing and discriminatory behaviours and when they can occur, in order to enhance employability. The most frequently reported instances of workplace discrimination in this study included: i) barriers to re-entry into the workforce during the hiring process; ii) social exclusion from co-workers, at the workplace; iii) limited opportunities for advancement (e.g. promotion); and iv) enhanced exposure to derogatory comments at the workplace.
However, while we recommend that stigmatizing perceptions and discriminatory behaviour be identified we also recognize that stigmatizing and discriminatory practices may be challenging for PWBIs and providers to identify. Stigma is an abstract theoretical construct, and some discriminatory behaviours may be more covert than overt, making it difficult to definitively relate a negative behaviour in the workplace to (brain injury) stigmatization. Discrimination and human rights legislations have attempted to operationalize (from a legal perspective) citizen’s rights, to elucidate how stigmatized or disadvantaged groups may be mistreated in the workplace, and to provide more concrete examples of discrimination. Further education (for PWBIs, providers, co-workers and employers) regarding employment rights and indicators of stigmatizing and discriminatory behaviours may enhance these groups’ ability to identify when discrimination is occurring and to facilitate the development of workplace cultures that prevent discrimination [30]. In addition, the process of self-advocacy may be especially challenging for PWBIs, who may find themselves in a particularly vulnerable position, due to their cognitive challenges, limited job opportunities, and fear of job loss if they complain or request needed assistance. Thus, we recommend that PWBIs receive enhanced support from service providers to learn about their employment rights and how to advocate on their behalf at the workplace.
Anti-stigma initiatives employed within the context of other neurological or mental health challenges suggest some additional strategies that may be beneficial to combating stigma and discrimination as it relates to PWBIs. Stephans (2015) suggests that: i) clinicians can connect individuals with similar conditions to enhance social support, self-esteem, and mitigate the potential negative effect of self-stigma; ii) individuals with neurological disorders can educate others about their symptoms in order to eradicate misunderstandings and misrepresentations of disabled individuals; and that iii) such strategies can facilitate understanding and supports when PWBIs require it [45]. In a meta-analysis of the effectiveness of varied anti-stigma approaches in mental illness, Corrigan et al. (2012) reveals that educational strategies that include face-to-face contact and which are made context specific may be most effective [46]. Large scale anti-stigma campaigns employed in the UK have also demonstrated some improvements in employment for individuals with mental health challenges [47].
Recommendations related to disclosure
Assisting PWBIs to determine if, and how, they could disclose their brain injury is a complex process that required the consideration of a number of factors (e.g. visibility of the disability, who would be receiving the information, amount of information to share). First and foremost, while it has been presumed that disclosure is a choice that all can exercise, many of our participants (PWBIs and providers) revealed that non-disclosure may not be a realistic option for PWBIs with visible injuries, those with more severe injuries, or those who require the support of an employment counselor or workplace accommodations to ensure their work success. PWBIs who find themselves in this position need to understand that some form of disclosure may be necessary.
Second, PWBIs need to understand who they will be sharing information with, in order to have a preliminary sense of how information about their injury may be perceived and how their requests for accommodations may be received. Previous evidence has shown that members of the public who have had previous positive experiences with PWBIs may hold more positive perceptions about PWBIs [12, 13]. As such employers, and co-workers, who have had previous positive experiences with PWBIs may be more receptive to hiring PWBIs and understanding the types of workplace supports that they require. Conversely, employers with less previous experience with PWBIs may require greater education and support to determine and implement relevant workplace supports and accommodations.
Third, participants suggested that information sharing should be limited during the initial job seeking and hiring process, until a job offer had been made, particularly if one’s disability is invisible and specific supports would not be required. Lastly, if workplace supports or accommodations were required, participants suggested it may be best to disclose a need for accommodations based on a general indication of disability (rather than a problem list and/or disclosure of brain injury), while concurrently re-enforcing how the requested accommodation would enhance the PWBI’s ability to effectively perform their job. Such strategies draw upon a positive strength-based, versus a limitation-focused, approach to workplace accommodation and rehabilitation. By focusing on the capacities and strengths of PWBIs, and building a strong case for hiring PWBIs through targeted public health campaigns and educational interventions for workplaces, we may enhance the visibility of PWBIs in the workplace, and decrease the stigma that they experience.
In summary strategies to address stigma and workplace discrimination for PWBIs could focus on teaching service providers how to discuss disclosure issues with their clients, how to educate employers and workers about the strengths and abilities of PWBIs, and how to address stigmatizing and discriminatory behaviours when they arise. Lastly, PWBIs would benefit further from: i) education regarding their employment rights; iii) provider-mediated support in communicating employment concerns with supervisors as they arise; and iii) information about how to lodge formal workplace discrimination complaints, if required.
Strengths, limitations and future research directions
This is the first qualitative study to examine issues of stigma, workplace discrimination and disclosure at the workplace for PWBIs who have experienced a moderate to severe brain injury. Stigma and discrimination as constructs can be abstract, and thus may be challenging for individuals to grasp and to discuss. A primary strength of this study is that it draws upon the varied perspectives and experiences of both PWBIs, and service providers, who work directly with PWBIs and employers, thus allowing us to gain a more comprehensive understanding of stigmatizing and discrimination behaviours that PWBIs may experience. For example, we found that providers were better able to speak to others’ perceptions of PWBIs, rather than PWBIs themselves. This may be because an interpretation of others’ perceptions requires a great deal of abstract reasoning and insight, which some PWBIs may find more challenging. In contrast, we found that PWBIs were better able to describe specific situations where they “felt” that they were being excluded, treated unfairly, or harassed at the workplace. We postulate that this may be because individuals who personally experience stigma and discrimination may be in a better position to fully understand and describe the experience. In contrast, providers may not be able to understand the experience of discrimination in the same way that individuals who have personally experienced their effects can.
This study provides us with a preliminary understanding of the experiences of workplace stigma and discrimination for PWBIs (who experience longer-term employment challenges). However, our findings must be considered exploratory and several limitations noted. First, while in-depth interviews were completed to explore experiences at the worksite, our sample size was small and participants were recruited from a single geographic location and one primary agency providing services to PWBIs with long-term community and vocational support needs. Further, studies, with larger sample sizes, persons with more varied injury severities and employment needs are warranted to expand on, challenge and/or refine the preliminary themes identified in this study. Second, while we were open to recruiting individuals with various injury severities, our sample included PWBIs who had predominately suffered a moderate to severe brain injury. Individuals with milder brain injuries, and/or whose injuries are less visible, may experience either fewer, or different challenges related to stigmatizing perceptions and discriminatory behaviours. As such our findings may not represent the experiences of PWBIs with milder/less visible injuries (e.g. concussions). Third, as return to work processes and relevant employment legislation vary by jurisdictions, it will also be necessary to compare the experiences of PWBIs in Ontario, Canada (where this study took place) to PWBIs living in other countries/jurisdictions. Fourth, this data draws upon the personal experiences and perceptions of PWBIs and service providers who directly assist PWBIs with employment issues at the workplace. These self-reported experiences thus do not represent incidents of discrimination that were formally lodged as human rights complaints, and as such do not represent objective findings of workplace discrimination. In addition, while personal perceptions can elucidate covert incidents of stigma and discrimination, and suggest that stigma and discrimination may play a role in the work experiences of PWBI, we also recognize that our data does not allow us to report on exact incidents of workplace discrimination. Lastly, further exploration of employers’ and co-workers’ perceptions of PWBIs and their experiences of hiring and working alongside PWBIs is necessary to enhance our understanding of factors that may influence stigma and workplace discrimination for PWBIs, and to triangulate, substantiate, and/or dispute the perspectives we gathered from PWBIs and service providers in this study. This future research could also assist us in better understanding employers’ perceptions, fears and concerns and how this may influence their hiring and employment practices in relation to PWBIs.
Conclusions
Public understanding about brain injury remains limited, and misperceptions can cause employment challenges for persons with moderate to severe brain injuries and enhance their susceptibility to discrimination in the workplace. PWBIs in this study reported experienced multiple types of discriminatory behaviours including social exclusion, discrimination within the hiring and promotion process, denial of reasonable accommodations, and derogatory or humiliating comments while performing tasks at work. Perceptions regarding PWBIs at the workplace also posed challenges for vocational providers when carving out and securing jobs for PWBIs. Providers increasingly felt obligated to “sell” clients to reluctant employers, and had to employ multiple strategies to effectively manage issues of disclosure. Further education and intervention is needed to enhance knowledge, decrease fears and anxieties about brain injury, and to improve the social acceptance and integration of PWBIs in the workplace.
Conflict of interest
None to report.
Informed consent
All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000 (5). Informed consent was obtained from all patients for being included in the study.
Footnotes
Acknowledgments
We would like to thank our 15 participants for sharing their expertise and experiences to assist us in understanding the role of stigma and discrimination in the return to work process following brain injury.