A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
Since early 2020, the COVID-19 pandemic has had an unprecedented impact worldwide. According to the Centers for Disease Control and Prevention (CDC), more than 67 million cases of COVID-19 had been diagnosed in the US by January 2022. The majority of people who have been diagnosed with COVID-19 recover, but a significant portion of those who have recovered from COVID-19 may encounter lingering symptoms (called “long-haulers”) for weeks or months after they have cleared the virus. Some of these lingering physical symptoms include ongoing fatigue, decreased lung function, muscle weakness, pain, impairment of the central nervous system, and injury to the heart muscle tissue. They can also include cognitive symptoms such as confusion, memory problems, difficulty concentrating, and changes in mood. These physical and cognitive symptoms can lead to difficulties with completing household chores and self-care tasks, difficulty speaking or writing, feelings of hopelessness and depression, and the need for extended rest breaks and/or sleep.
Long-haulers may require comprehensive rehabilitation services, as these lingering symptoms may impact their ability to fully participate in community activities, complete daily activities at home, and return to work duties. Some of the challenges they may face in returning to work may include the need for reduced work schedules, lost connections with colleagues due to distancing guidelines and remote work, and fear of losing their job because of extended absence from work. Because COVID-19 is relatively new, limited research is available on effective treatment options for managing these long-term COVID-19-related disabilities. There is also little information regarding the long-term recovery process from COVID-19 and the specific needs for job accommodations for COVID-19 long-haulers.
A recent NIDILRR-funded study sought to address these information gaps. Specifically, researchers sought to identify the challenges people faced when returning to work while continuing to recover from COVID-19. They also aimed to describe the lived experiences of rehabilitation professionals working with COVID-19 long-haulers returning to work. Lastly, they sought to describe the job accommodations that were found to be most helpful for long-haulers returning to work.
Researchers from the Rehabilitation Research and Training Center (RRTC) on Employment for People with Physical Disabilities recruited eight rehabilitation professionals for a focus group study in December 2020 and January 2021. Four were certified rehabilitation counselors and four were board-certified rehabilitation physicians. All of the rehabilitation professionals had experience taking care of people recovering from COVID-19. The participants were separated into 2 focus groups that lasted around 90 minutes each. The physicians discussed experiences treating their patients and the counselors discussed experiences providing counseling services to their clients. In the sessions, the participants introduced themselves, described their work setting, reported the number of COVID-19 patients they had worked with, and described an experience helping a COVID-19 client or patient with returning to work. Next, they discussed challenges and obstacles that their clients or patients had faced when planning to return to work; ways they collaborated with employers, other counselors, and medical clinicians to support their clients’ or patients’ return to work; and job accommodations they recommended. The participants also discussed supports they provided, considerations for assisting people recovering from COVID-19, challenges they faced when assisting their clients or patients, and what resources or policies might be critical to providing that assistance. Finally, they discussed ways they wished they could support their clients or patients but were unable to do so and were offered an opportunity to share any thoughts or questions that were not addressed during the discussions.
The physicians reported serving a total of 78 long-hauler patients. Of those, the majority were retired or not seeking to return to work, with fewer than 5 patients per physician intending to return to work. The counselors served 33 long-hauler clients, with most intending to return to work. Among the counselors’ clients, 3 of them successfully returned to work by the time the focus groups were conducted. Of those that hadn’t yet returned to work, they were either still dealing with long-hauler symptoms and complications, were participating in ongoing vocational rehabilitation services, or were seeking new jobs. Some had decided not to return to work due to long-term disability.
Several themes emerged from the focus group discussions:
- Participants reported that many of their patients and clients had difficulty returning to their usual responsibilities and experienced worries about finances and supporting their families. Others were unable to return to work or find new jobs because they were at or near retirement age, although some of them were employed full-time prior to their illness.
- Participants reported that some of their patients and clients were unaware that vocational rehabilitation was an option for support in returning to work.
- Some long haulers shared that their fear of death and becoming sick again restrained them from returning to work.
- Participants reported their patients and clients experienced declines in cognitive ability and decreased physical conditioning (compared to their pre-COVID state), which were common complications for those seeking to return to work.
- Uncertainty about the recovery process created fear and distress for patients and clients recovering from COVID-19 who couldn’t say when they would be back to full strength. This also made it difficult for counselors to communicate return to work schedules/timelines to employers.
- Participants reported their patients and clients had limited access to additional healthcare and support services, from lack of insurance coverage for mental health to finding transportation to vocational rehabilitation services.
- Participants expressed uncertainty about working with patients and clients with COVID-19 due to the risk of infection and limited information about the disease course and how best to support recovery and return to work.
- Physician participants reported fear of getting physically close to patients with COVID-19 symptoms and expressed guilt for rejecting some patients with those symptoms early in the pandemic.
- Participants reported that certain job accommodations were found to be helpful for long-haulers returning to work including changing workplace policies such as gradual return to work and remote work, flexible scheduling, changing job tasks, and modifying the work environment. However, many employers were not willing or able to provide accommodations.
- Participants found that support groups and referring patients for Social Security Disability Insurance were also helpful resources for long-haulers.
When reflecting on the study, the authors noted that one of the greatest challenges for these rehabilitation professionals helping long-haulers was the unpredictable COVID-19 recovery timeline. They suggested that this unpredictability played a significant role in patients’ ability to return to work. The authors also noted that, since vocational rehabilitation services help people with general disabilities who experience many of the same challenges as long-haulers, the same strategies may be useful for helping COVID-19 long-haulers in their efforts to return to the workforce. To support employers and employees, agencies such as the CDC can provide guidance on return to work, leave policies, and workplace safety, while other agencies such as the Equal Employment Opportunity Commission can provide guidance on confidentiality and rights and responsibilities under the Americans with Disabilities Act and other laws.
The authors acknowledged that the findings of this study are not inclusive of the whole experience of people with COVID-19 returning to work, focusing instead on the experiences of some of the rehabilitation professionals and clinicians that support recovery. They suggested that future research may be beneficial to focus on the lived experiences of people with long-haul COVID-19 and the challenges they report facing when returning to work. The authors also acknowledged that additional research that includes healthcare professionals from diverse backgrounds may be beneficial. But they noted that this study presents an initial step toward learning and specifically addressing the needs of those recovering from long-term disability from COVID-19.
To Learn More
Several NIDILRR grantees have produced articles, videos, and other resources to support people with long-haul COVID and other disabilities in returning to the post-COVID workplace:
- Getting Back to Work After COVID-19: Lingering Symptoms Present Challenges for Employers and the ADA
- Reasonable Accommodation: Best Practices for Return to Work During COVID-19 (webinar)
- Accommodation Problems and Solutions for Reopening with COVID-19
These and other COVID-related publications are indexed in a special NARIC collection.
For information on Post-COVID or long-haul COVID:
- The CDC offers information for individuals on types of post-COVID conditions and their effects on adults, children, and adolescents.
- Information is also available for healthcare providers on Post-COVID in general and interim guidance on evaluating and caring for patients with these conditions.
- The Department of Health and Human Services published guidance on Long COVID as a disability under the ADA and other laws
To Learn More About this Study
Wong, J., et al. (2021) Lessons learned by rehabilitation counselors and physicians in services to COVID-19 long-haulers: A qualitative study. Rehabilitation Counseling Bulletin. This article is also available from the NARIC collection under Accession Number J88022.