A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
A spinal cord injury (SCI) is damage to the spinal cord or the spinal nerve roots within the spinal canal resulting in temporary or permanent loss of movement and/or feeling. Learning to manage health after SCI can be a long and complicated process that is dependent on numerous personal and environmental factors, and it is an important part of the overall recovery process. Employment has been shown to be a key part of recovery and strongly related to health, life-satisfaction, and longevity, but the effects of SCI can present barriers to finding and keeping a job. A recent NIDILRR-funded study asked people with SCI about those barriers, and what health behaviors and health management strategies they found to be critical for maintaining employment.
Researchers from the project on Successful Employment and Quality Work Life After Severe Disability Due to SCI brought together six focus groups of individuals with SCI who were 10 or more years post injury. All of the focus group participants worked at some point after their injury. The participants discussed the personal, environmental, and policy-related factors that affected their ability to find a job and maintain or advance in their employment. Some participants also discussed their reasons for leaving work. A key finding that arose from these discussions was the relationship between employment and behaviors associated with the management of physical health and functioning. The health behaviors engaged in after SCI can either protect against or increase the risk of secondary conditions. For instance, smoking, binge drinking, and prescription medication use have been identified as risk factors while hours out of bed each day, exercise, and diet appear to be protective.
From the focus group discussions, the researchers identified four themes associated with the management of SCI that appear to particularly impact employment. These themes are discussed below:
- Relearn one’s own body and how to do things : Participants said they had figure out how to function in their everyday lives and develop daily routines that would support employment before thinking about returning to work. They need to relearn their body and how it functions and then condition it to meet the demands of employment.
- General health and wellness behaviors : Participants reported that performing general health and wellness tasks on a regular basis, such as caring for skin or exercising, had a positive impact on employment by reducing time away from work. Participants also stressed the importance of learning how to interact with caregivers and personal care attendants, as employment is often dependent on reliable and qualified caregivers.
- Communication, educating others, and advocacy : Participants indicated that the ability to communicate and self-advocate were helpful for managing good health after SCI. These skills appear to be critical to maintaining employment, particularly in asking for accommodations on the job. They stressed the importance of interacting with confidence and assertiveness and building relationships with employers.
- Secondary conditions and aging with SCI : Many participants reported that secondary health problems may have resulted from their failure to perform the tasks needed to maintain health or additional health challenges that arose. Frequently though, the participants indicated it was aging and associated physical decline, including fatigue, that led them to end their employment. Other participants who left work after experiencing secondary conditions were interested in returning to employment but were cautious about doing so for fear of once again experiencing problems or because of loss of compensation and benefits.
According to the authors, these themes highlighted the types of behaviors people with SCI need to master and their impact on return to work as well as maintaining, or deciding to leave, employment. Researchers found that learning these skills and health behaviors could allow individuals to maintain employment after SCI and could be used as the focus of interventions to be provided following injury.
Based on the focus group results, the authors recommended several areas where education and training programs may improve employment for people with SCI.
- Address health issues and management skills early after SCI : The authors identified the importance of addressing health-related issues and teaching health management skills immediately after injury so individuals with SCI have the opportunity to relearn their bodies and how to manage their health while meeting the demands of employment.
- Balance employment with good-health skills : Once on the job, individuals should learn to balance employment with good health management and wellness activities, with personal care attendants if appropriate, and should look for opportunities to continually manage their health and function in the work environment.
- Use good communication and advocacy skills : Individuals should learn how to communicate with supervisors, co-workers, and others in the work environment, to educate them about and advocate for appropriate accommodations to maintain employment.
The authors found a strong connection between poor health (whether associated with secondary conditions or aging) and the decision to leave employment. Health management interventions in this area may be aimed at flexible approaches to staying on the job, problem solving at work, altering environmental factors, and reducing anxiety and fear of losing benefits for those who want to return to work. Balancing health and work after SCI is dependent on knowing one’s body and its limitations, engaging in wellness and monitoring the effects of aging, and being a strong self-advocate. The study’s participants highlighted how success required taking responsibility for doing these actions. According to the authors, participants in this study also addressed the importance of managing emotional and psychological health as they joined or returned to the workforce, which will be the subject of an upcoming article in the same journal.
To Learn More
The Successful Employment After SCI: Beyond 90 Days project offers a series of videos featuring interviews with people with SCI on their experiences with return to work, as well as vocational rehabilitation counselors and employment specialists: http://academicdepartments.musc.edu/chp/Health_Employment_Longevity_Project/Beyond90Days/Media/
The Job Accommodation Network assists employees with disabilities and their employers in identifying appropriate accommodations to maintain an inclusive workplace: http://www.askjan.org
Individuals who are newly injured may want to request the New Beginning Backpack for Life After SCI from United Spinal, a collection of essential resources for learning the “new normal” of life after injury: http://spinalcord.org/backpack /
To Learn More About this Study
Meade, Michelle A., Reed, Karla S., Krause, James S. (2016). The impact of health behaviors and health management on employment after SCI: Physical health and functioning . Topics in Spinal Cord Injury Rehabilitation, 22(1), Pgs. 39-48. This article is available from the NARIC collection under Accession Number J73146.