For People with Cancer Who Want to Return to Work, Turn to Your Health Care Team for Key Information and Support
A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
With advances in cancer treatment, more and more people with cancer diagnoses are returning to work after treatment or continuing to work while being treated for their cancer. The effects of cancer such as fatigue, pain, depression, and cognitive difficulties can have an impact on work life. Cancer survivors may find they need information and resources regarding legal protections to prevent job loss, managing their employers’ expectations when they return to work, and benefits and services available to support them in the workplace. In addition, they may not know about accommodations and protections afforded to them under the Americans with Disabilities Act (ADA) and similar laws.
Recent studies have shown that cancer survivors frequently look to their health care providers as primary sources of information. This finding seems to indicate that oncology staff may have a crucial role to inform patients about resources that might help them handle work issues related to their health. However, these health care providers may not be fully aware of the ADA and other employment-related policies and programs that could support their patients in the workplace. A recent NIDILRR-funded study looked at what these health care providers know about their patients’ employment challenges, supports available to address employment-related needs, and the best way to share information about these topics with providers so they can best support their patients’ return to work.
Researchers from the Southwest ADA Regional Center surveyed health care providers who work with cancer patients at The University of Texas M.D. Anderson Cancer Center and the Memorial Herman Healthcare System to understand cancer’s effects on work experiences. Survey participants included case managers, social workers, oncology nurses and nurse navigators, dietitians, and chaplains. The participants were asked about their perceptions and observations of their patients’ concerns regarding difficulties the patients encountered at work because of cancer or its side effects. They were also asked whether their patients received any needed accommodations, and whether the participants themselves were aware of civil rights protections or vocational supports that may assist patients in returning to and maintaining employment.
With regard to working or returning to work, health care team members reported that although their patients’ job demands could be too stressful or too physically demanding to continue working through cancer treatments, their patients expressed concerns about losing their jobs if they cut back on work or took a leave of absence. The participants also reported some of their patients experienced diminished work prospects and lost productivity resulting from issues such as fatigue, treatment-related sickness, pain, physical and mobility changes, depression, and anxiety. The participants said their patients rarely reported negative experiences with regard to disclosing their cancer in the workplace, but might have felt subtle pressure to stop working.
When asked about reasonable accommodations, the respondents reported that their patients’ employers often provided flexible work schedule or reduced hours, or allowed changes in certain work duties to alleviate some of the negative impacts of cancer and cancer treatment on work life. Time off was sometimes provided through the Family Medical Leave Act (FMLA) as well as paid and unpaid sick leave. Some of the usual accommodations for employees with disabilities such as tele-work, assistive technology, workspace modifications, or information technology solutions were not commonly offered.
Regarding the providers’ knowledge of employment-related laws and programs and how those laws and programs might benefit their patients, most reported that they were familiar with health-related laws such as the Family Medical Leave Act (FMLA), the Health Insurance Portability and Accountability Act (HIPAA), as well as the ADA. The respondents had only some familiarity with other disability-related laws and the services and supports available through the state Department of Assistive and Rehabilitative Services. When asked about their patients’ knowledge of employment-related resources, the respondents reported that their patients needed help in understanding local, state, and federal support programs; finding programs for supports, benefits, and legal protections; and reviewing and understanding their insurance policies. However, the providers were less likely to help their patients with understanding disability-related laws; refer them to training programs about insurance, support programs, or other legal rights; or help them complete and submit disability-related paperwork. The authors noted that the providers might not have felt knowledgeable enough about these particular topics or where to refer their patients for help. Most of the respondents said they would like in-person training to learn more about appropriate resources for their patients in this regard.
Not surprisingly, the longer the health care providers worked in oncology settings, the more knowledgeable they were about the negative effects of cancer on employment, as well as disability-related benefits, legislation, and programs. These practitioners had more opportunities to work with patients who had higher numbers of cancer side effects that created work difficulties or had a negative impact on work such as lost productivity, reduced satisfaction with coworker and supervisor relationships, and fears of job loss. When researchers looked at the various occupations of the survey participants, the researchers found that social workers seemed to be more aware of their patients’ negative experiences. The authors noted that this heightened awareness may be because the social workers tended to spend more time with their patients and families compared to other members of the health care team and had more opportunities to learn about the nonmedical issues in their lives. In addition, the majority of the social workers who responded were on staff at the cancer center, rather than the general hospital, where patients tended to have complex or rare cancers. Patients who worked with social workers were reportedly able to gain a better understanding of disability-related benefits, programs, and laws that applied to them. These findings could reflect the social workers’ training in the non-medical aspects of living with a disability.
People with cancer who are able to and want to return to work can do so, and the right accommodations can help them be productive at work as well as satisfied with their work life. Health care providers can play an important role in providing multi-component interventions to support employees with cancer, and to raise their awareness of the ADA and other disability-related legislation and programs. This study showed that health care providers have some knowledge of the negative effects of cancer on patients’ work experience, but may not feel knowledgeable about the disability-related laws and policies which could help their patients address those negative impacts.The authors noted that appropriate, training materials can be developed that will give social workers, case managers, oncology nurse navigators, and nonmedical health care providers the best information to share with their patients about the ADA, accommodations, and other employment-related policies and programs. Additionally, the authors developed an online training program focusing on cancer and employment issues and are currently evaluating its effectiveness. They also recommended training targeted to specific providers, such as social workers. Finally, it was noted that mentoring programs that partner experienced staff with newer colleagues might also have positive outcomes, since more experienced providers in oncology settings can share their wealth of knowledge about disability- and employment-related topics to support their patients return to work.
To Learn More:
The NIDILRR-funded Center on Knowledge Translation for Employment Research conducted a systematic review of interventions to facilitate employment outcomes for cancer survivors: http://www.kter.org/resources/behavioral-psychological-educational-and-vocational-interventions-facilitate-employment
The National Cancer Institute offers information and resources on going back to work during and after treatment: http://www.cancer.gov/about-cancer/coping/day-to-day/back-to-work
The American Cancer Society also offers information and resources on working during and after treatment: http://www.cancer.org/treatment/survivorshipduringandaftertreatment/stayingactive/workingduringandaftertreatment/index
To Learn More About this Study:
Murphy, K.M., Nguyen, V., Shin, K., Sebastian-Deutsch, A., & Frieden, L. (2016) Health Care Professionals and the Employment-Related Needs of Cancer Survivors. Journal of Occupational Rehabilitation. This article is available from the NARIC collection under Accession Number J73554.