Caring for persons with spinal cord injury: Perceived stress and caregivers' workload

Depending on the care-recipient's physical condition and level of injury, caregivers assist with daily activities such as bathing, dressing, feeding, bowel/bladder management, and mobility transfers. Given the crucial role that caregivers play in the lives of people with spinal cord injuries (SCI) it is important to evaluate perceived stress and demands of caregiving (workload), which may result in fatigue, sleeplessness, increased incidence of illness, and injury.

This three-year, descriptive, cross-sectional study is funded by National Institute on Disability and Rehabilitation Research. Criterion-based purposive sampling was used to recruit 54 SCI caregivers (age 20-63), majority females (n=48) who completed study requirements to date. Using a mixed-method design, the qualitative data is obtained by audio-taped, semi-structured interview, later transcribed, coded, and analyzed. For this presentation, quantitative data comes from the self-administered 10-item Perceived Stress Scale (PSS), and demographic data obtained through the interview.

The goal of this presentation is to describe the linkages between the stress and caregivers' workload defined as number of hours/week and years of caregiving; and care-recipient's level injury and functional status.

A preliminary analysis of the narratives suggests that personal/social factors, and material resources, separately or in combination, account for variations in PSS scores (1-40, mean=16.2), as well as identification of the potential stressors and workload. Majority of the caregivers (n=30) are caring for the person with SCI for 5 years or less, long hours per week (24/7) were identified by 22 caregivers.

Addressing these caregivers' issues is important for improving quality of care to individuals with SCI.