All day in bed, all night in the wheelchair: Unmet attendant care needs of people with spinal cord injury.

Abstract

Context: Having dependable attendant care is essential to the health and well-being of those most severely impacted by a spinal cord injury (SCI). Our objective was to identify how often people with SCI who require assistance for transfers either spend a full day in bed or all night in a wheelchair because they do not have paid or unpaid assistance.

Findings: Of the 918 respondents, 319 (34.7%) indicated they needed someone's help for basic activities of daily living and 229 (24.9%) relied on someone's assistance for wheelchair-to-bed transfers. Nearly a quarter of participants (22.2%) reported staying in bed all day for at least one once on during the past year, with a median of 10 times among those with at least one day. Men reported a higher rate than women (25.6%, 13.6%) and nonwhites-Hispanics (33.3%) reported a higher percentage than non-Hispanic whites (18.6%). Just over one in every 20 participants (5.3%) reported staying in the wheelchair at least one night because they did not have attendant care, with a median of 2.5 times among those with at least one night. Over one in 10 (11.7%) nonwhites and Hispanics reported at least one overnight in the wheelchair compared with only (3.1%) for non-Hispanic whites.

Conclusion/clinical relevance: Staying in bed all day and staying in the chair all night due to lack of attendant care represents a breakdown in the attendant care system and a threat to the well-being of those with SCI, particularly nonwhites and Hispanics, and men.