Workplaces face many complex challenges when managing episodic disabilities: study

In interviews with IWH, employers describe difficulties supporting workers with invisible, recurring health conditions while respecting their privacy

Published: August 11, 2020

Workplaces are increasingly aware that they need to update their disability management model to support workers who have episodic disabilities.

That’s according to an Institute for Work & Health (IWH) interview-based study that examined employer perspectives on supporting workers with episodic health conditions, published as an open access article in the Journal of Occupational Rehabilitation in May 2020 (doi:10.1007/s10926-020-09901-2).

Episodic disabilities arise from long-term conditions that are characterized by periods of good health interrupted by periods of illness and disability, which can be unpredictable in severity and duration. These health conditions—examples of which can include depression and anxiety, arthritis and lupus, Crohn’s and colitis, multiple sclerosis and HIV/AIDS—are often invisible to others.

The model where the worker gets sick, the workplace asks for a doctor’s note, the doctor’s note says this is how long the worker will be off for, and so on—that model doesn’t work very well for episodic conditions in terms of providing timely support or maintaining trust. Employers are recognizing that, says IWH Senior Scientist Dr. Monique Gignac, lead author of the study and principal investigator on a five-year research partnership called Accommodating and Communicating about Episodic Disabilities (ACED).

Organizations are aware that they need a new model for accommodating workers in situations when they might not know exactly what diagnosis they’re dealing with, how long a period of disability might last, or when it might happen again.

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The study is one of the few in the literature to examine this topic from employer perspectives and across a spectrum of health conditions, says Gignac.

The research team conducted hour-long interviews with 27 professionals from across Canada who had experience interacting with people with episodic disabilities. Participants included supervisors, human resources (HR) professionals, disability management (DM) professionals, worker advocates or union representatives, occupational health and safety (OHS) professionals and labour lawyers. The interviews took place in person or over the phone in 2017 and 2018.

The team heard seven themes emerge from the interviews.

  1. Similarities and differences among episodic disabilities. Participants noted many similarities in the way the health conditions affect people’s job performance, work environment, and patterns of absenteeism and presenteeism. Participants also observed that, while individuals with episodic conditions may differ in their wish to protect their privacy, they have in common the desire to be well-regarded by others and to protect their job security and career development. Participants did note that it can be particularly challenging when individuals with mental health conditions are not aware of the onset of a new episode. Such instances, though rare, have the potential to create long-lasting and even irreparable harm to workplace relationships.

  2. Cultures of workplace support. Participants implicitly recognized that organizational culture shapes decision-making processes. Workplace participants had different perspectives on three topics:
    • medical versus biopsychosocial models of support: A medical model of support looks to doctors’ notes and ongoing treatment to validate workers’ health claims. Among this study’s participants, this approach was more common in large or unionized workplaces that had regular experience with workplace injuries, a strong tradition of health and safety activity, and collective agreements that outlined the processes and procedures for accommodating workers. However, participants noted challenges with this model, including the difficulties workers face in accessing timely health care to validate their condition, as well as health-care providers’ lack of familiarity with workplace disability supports. Further, this model can inappropriately “out” workers with mental health conditions when they are asked to submit notes from their treating physician—i.e. a psychologist or psychiatrist. Some participants spoke of the appeal of an alternative model: a biopsychosocial model that focuses instead on the fit between job demands, individual competencies and support needs.
    • fairness and transparency: Some participants viewed a case-by-case approach as most appropriate for responding to individual differences, diverse job demands, differences in episodic disabilities, and changes in health over time. Others viewed such an approach as potentially haphazard, arbitrary, and more likely to result in practices that lack transparency or fairness. They endorsed efforts to create a single set of policies and practices for all.
    • return-on-investment versus value-on-investment perspectives: Although most participants in the study endorsed a value-on-investment perspective, they noted that a return-on-investment (ROI) culture is far more prevalent. They described an ROI culture as one that can often under-value the work by HR and DM practitioners to build awareness, provide training and offer accommodation. From an ROI perspective, these efforts can be considered expensive, time consuming and not contributing to the bottom line of the organization.
  3. Misgivings about the role of others. Participants acknowledged the important roles others play in supporting individuals with episodic disabilities. However, they also voiced concerns about the skills, training or motivation of other groups. For example, some participants recognized the importance of front-line supervisors but questioned the variability in their interpersonal skills, training and experience. Other participants valued the training and expertise HR and DM practitioners bring to the table but noted that high turnover in these functions can lead to inconsistent procedures and processes. Also, some participants acknowledged that workers often view HR staff as representing the interests of the organization, not the workers.

  4. Importance of subjective perceptions. Although many participants advocated for better awareness of stereotypes, preconceptions and biases, they also believed these cannot entirely be avoided. The most common challenge discussed by participants was not knowing the health diagnosis underpinning an episodic disability. While participants endorsed the need to protect workers’ privacy, they also said it’s human nature that people want to know more about a colleague’s health—whether out of curiosity or the desire to offer appropriate support. Participants also spoke of challenges discouraging gossip when others become aware of a colleague’s health.

  5. Inherent complexity of the response process. Participants acknowledged significant challenges inherent in the support communication process. For example, the intermittent nature of episodic disabilities can make workforce planning at the unit level difficult. The invisibility of symptoms can lead others to view workers requesting support as malingering. Moreover, workers are often reluctant to discuss their health before a workplace problem occurs, which can delay planning efforts and result in a crisis management approach to accommodation and support.

  6. Challenges when workers deny disability. Although participants respected employees’ decisions not to disclose episodic disabilities at work, they also described such instances as some of the most complex and stressful situations they have had to deal with. This was especially the case when workers had a suspected mental health disability and others in the workplace noticed changes to work performance or interpersonal challenges. Efforts to move forward in these instances were typically complex and prolonged, and sometimes led to considerable interpersonal tension.

  7. Casting disability as a performance problem. Several participants described attendance management and attendance support programs, while designed to identify support needs early, as a double-edged sword in the disability communication and support process. These programs flag employees with higher-than-usual absenteeism and mandate meetings with supervisors, HR staff or others. Although workers have an opportunity to explain their absences, including by sharing any health-related difficulties, participants said workers can feel “caught” and forced to disclose health issues they would prefer to keep private. Or they can be ill-prepared with what to communicate and, as a result, their disability can be cast as a performance problem.

There’s no sugar-coating it: the participants we interviewed spoke of a broad array of challenges, many of them inter-related, says Gignac. She adds that, against a body of literature that is mostly focused on worker perspectives, this study is eye-opening in shining a light on the complexities that organizations grapple with.

Most organizations are genuine in wanting to handle these issues well, she adds. Many are optimistic that they are making progress and can do better, but they also recognize that these issues remain complex.