Employer perspectives on communication challenges when supporting episodic disabilities

For people living with some chronic health conditions, periods of good health can be interrupted by unpredictable episodes of severe, debilitating, and often invisible, symptoms. Examples of such episodic conditions include mental health disorders like depression and anxiety, rheumatic diseases like arthritis and lupus, Crohn’s and colitis, multiple sclerosis, migraine and epilepsy. (Diseases that were once fatal such as HIV/AIDS and cancer can sometimes be episodic in nature.)

Due to their intermittent and invisible characteristics, episodic conditions can be challenging from a disability management perspective—not least because employers have to strike a balance between providing the needed support and accommodation to workers while respecting individuals’ right to safeguard their private health information and meeting health and safety obligations and productivity goals.

Previous studies on work accommodation of episodic disabilities have focused almost exclusively on workers’ perspectives. This study set out to examine the challenges from the perspectives of employers.

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

1. Similarities and differences among episodic disabilities. Participants noted many similarities in the way the various episodic conditions affect people’s job performance, work environment, and patterns of absenteeism and presenteeism. However, they noted that it can be particularly challenging when individuals 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:

a. medical versus biopsychosocial models of support: Some participants said their organizations adhered to a medical model of support, with clearly outlined processes and procedures that are based on doctors’ notes and ongoing treatment to validate workers’ health claims. However, some participants preferred an alternative model—called a biopsychosocial model—for its focus on the fit between job demands, individual competencies and support needs.

b. 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 haphazard and arbitrary; they endorsed efforts to create a single set of policies and practices for all.

c. return-on-investment versus value-on-investment perspectives: Most participants in the study supported a value-on-investment perspective, but they also noted that a return-on-investment (ROI) culture is far more prevalent. From an ROI perspective, efforts by HR and DM professionals to build awareness and provide training 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 questioned the variability in interpersonal skills, training and experience of supervisors. Other participants said high turnover in HR and DM functions can lead to inconsistent procedures and processes. Some noted 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. While participants endorsed the need to protect workers’ privacy, they also said it’s human nature that people to 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 status.

5. The 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 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.

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-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.

This study reveals the importance of understanding communication support processes from the perspectives of people providing such support to workers with episodic disabilities. It highlights issues that arise when organizations aim to strike a balance between providing support to workers while protecting their privacy. It highlights three dimensions of workplace culture that shape these processes and that may require evaluation and explicit discussion. It underscores the need for communication and training across different disciplines to address widespread misgivings that professionals involved in the process have about each other.    

A strength of this study was its ability to highlight common themes in the communication support process relevant to diverse episodic conditions. Another strength was the inclusion of various organizational roles and functions. A weakness of the study was its inability to capture experiences that may have differed across sectors or jurisdictions, or to examine contextual factors that were not raised by participants (e.g. age, gender and education).