A study funded by the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR).
Spinal cord injuries (SCI) are damage to the spinal cord or its surrounding tissue which can cause temporary or permanent changes in movement and sensation. People with SCI may require assistance with activities of daily living (ADL) such as getting into and out of their bed or wheelchair, either from a paid caregiver, family, or friends. Past studies show that a prolonged stay in bed or in a wheelchair with no shift in movement may result in a pressure injury or other serious health conditions. Despite this risk, there may be times when people with SCI spend all day in bed or overnight in the wheelchair due to being left without a caregiver to help in transferring.
In a recent NIDILRR-funded study, researchers explored how often individuals with SCI who required attendant care stayed in bed all day or in the wheelchair all night because they did not have attendant care.
Researchers studying Risk of Opioid Use Disorder and Related Consequences: A Longitudinal Study of Spinal Cord Injury, looked at survey responses from 229 adults with SCI who were part of a larger study. All survey participants required some type of ADL assistance, including transferring into and out of a wheelchair. The participants reported number of hours per day they received paid and unpaid attendant care for personal care activities. They also reported number of times in the previous 12 months they stayed in bed all day or in their wheelchair all night because they did not have someone to help them transfer safely.
Most of the participants were male and non-Hispanic White. The participants reported an average of 6.8 hours of paid attendant care and 9.6 hours of unpaid attendant care per day. About 27% of the participants reported having daily 24-hour unpaid attendant care.
When looking at how often the participants reported spending one full day in bed or one full night in their wheelchair during the previous 12 months due to a lapse in attendant care where no one was available to assist, the findings showed:
- Just over 1 in 5 participants reported spending all day in bed at least once due to a lapse in attendant care. Among those participants, number of days reported ranged from 1 to 365 days, with the mid-point of the range being 10 days.
- More men reported spending all day in bed than women, and more non-White / Hispanic participants reported spending all day in bed than White non-Hispanic participants.
- About 1 in 20 participants reported staying overnight in a wheelchair at least once due to a lapse in attendant care. The number of nights reported ranged from 1 to 30, with the mid-point of the range being 2.5 nights.
- Non-White / Hispanic participants were more likely to report staying overnight in a wheelchair compared to White non-Hispanic participants.
While the participants in this study reported having more than 16 hours of paid and unpaid attendant care on average, the support may not be adequate resulting in a significant number of people who were left for one or more days or nights without assistance to transfer. According to the authors, the inadequate attendant support could be due to a few factors. Despite the growing demand for attendants and personal care assistants, the current pay, benefits, and working conditions are not ideal, which may lead to hiring challenges and high staff turnover. Furthermore, there has been a shortage of paid personal care assistants after the COVID pandemic. Finally, declining birth rates and a growing aging population could mean fewer family members or friends able and available to assist.
According to the authors, the findings of this study highlight the importance of having attendant care systems that can adequately address the needs of people with SCI who require assistance getting in and out of bed and wheelchair. They noted that even a single overnight in a wheelchair can put a person at risk of injury or illness. The authors recommended that policy makers and insurance companies may want to prioritize addressing wage disparities and working conditions for paid attendants. They also suggested further studies may be needed to evaluate the current attendant care system in place to better understand how to meet the needs of people with SCI.
To learn more:
The Model Systems Knowledge Translation Center offers a large collection of research-based information resources for people with SCI including working with personal care attendances, skin care and pressure injuries, and wheelchair transfer safety, among others.
The National Paralysis Resource Center offers information and resources for people with SCI, families, and caregivers, including a peer support program.
To learn more about this study:
Krause, J.S., Edles, P.A., Laursen-Roesler, J., Jarnecke, M. (2024). All day in bed, all night in the wheelchair: Unmet attendant care needs of people with spinal cord injury. The Journal of Spinal Cord Medicine. DOI: 10.1080/10790268.2024.2362505