Perceived information needs of community-dwelling persons with chronic spinal cord injury: Findings of a survey and impact of race

OBJECTIVE: To examine the perceived information needs of community-dwelling individuals with chronic spinal cord injury (SCI) and to determine factors that influence these needs. DESIGN AND PARTICIPANTS: Cross-sectional survey mailed to 620 persons with chronic SCI who completed acute inpatient rehabilitation. RESULTS: Of 103 (17%) returned surveys, 82 contained complete information and were useable for this study. Individuals with chronic SCI (M time since injury = 7 +/- 6 years) endorsed a multitude of information needs across a broad range of domains. Participant endorsements were most commonly observed in the areas of aging (73%), research (72%), financial aid (66%), and education (63%). Independent variables expected to influence information needs, including Internet use, whether the rehabilitation specialist also served as the primary care physician, and time since injury, showed no significant effect. Race/ethnicity was found to predict perceived information needs, with nonwhite participants endorsing a significantly greater degree of needs than white participants in 11 of 23 (48%) domains. CONCLUSIONS: Perceived information needs of community-dwelling persons with SCI are not fully met years after discharge from acute inpatient rehabilitation, which may have implications with respect to psychological adjustment. Race/ethnicity appears to exert a significant influence on the endorsement of perceived information needs, but this finding must be investigated further considering other possible mediating/moderating variables. Results must be considered in light of the relatively low response rate of eligible participants.