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

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.

Racial-ethnic variations in paid and unpaid caregiving: Findings among persons with traumatic spinal cord injury.

BACKGROUND: The effects of race-ethnicity on the use of paid and unpaid caregivers for those with spinal cord injury (SCI) have received little attention in the literature. OBJECTIVE: Compare the amount of paid and unpaid caregiver hours received and sources of caregiving between non-Hispanic White and non-Hispanic Black participants with SCI, controlling for demographic, injury-related, and economic variables. METHODS: Participants were identified from a large specialty hospital. Self-report data were collected by mail. Five aspects of caregiving were assessed: (a) paid assistance hours, (b) satisfaction with care, (c) unpaid assistance hours, (d) sources of informal care, and (e) evaluation of whether needs were met. RESULTS: Whites were more satisfied with paid care. Approximately 43.4% of Whites received informal care from their spouse every day, 14.7% higher than Blacks. Blacks were more likely to receive informal care from other family members, friends, church, and others. When controlling for gender, injury severity, chronological age, and years post injury, Blacks reported 1.50 more paid assistance hours (95% CI, 0.31-2.68 hours) and 1.83 less unpaid assistance hours than Whites (95% CI, 0.25-3.41 hours). Differences diminished and were not statistically significant after adding marital status and income into regression models. CONCLUSIONS: The results did not provide strong evidence of racial disparities regarding caregiver assistance for those with SCI. Level of income appears to be directly related to satisfaction of quality caregiving and the use of paid versus unpaid care for those living with SCI.

Injury perceptions, hope for recovery, and psychological status after spinal cord injury.

OBJECTIVE: The purpose of this study was to investigate the relationship of injury perceptions and hope for recovery with life satisfaction, purpose in life, and depressive symptoms measured during inpatient rehabilitation after spinal cord injury (SCI). METHOD: Participants included adults hospitalized for SCI inpatient rehabilitation (N = 208), each of whom completed a modified version of the Illness Perception Questionnaire and three outcome measures: the Purpose in Life Scale, the Satisfaction with Life Scale, and the abbreviated version of the Patient Health Questionnaire. RESULTS: Principal components analysis indicated an SCI perceptions factor regarding severity, permanence, and cure control of SCI, and a second factor related to hope for recovery. Whereas hope for recovery was nearly universal, injury perceptions were more varied. Favorable injury perceptions of SCI were predictive of purpose in life, whereas hope for recovery was predictive of life satisfaction. CONCLUSIONS: Hope for recovery and favorable SCI perceptions were related to positive psychological outcomes during inpatient rehabilitation, although the strength of the relationship was limited.