Objective: Caregivers of patients with spinal cord injury (SCI) have increased risk of depression, anxiety, and diminished quality of life. Unmet expectations for recovery may contribute to poorer outcomes.Design: Prospective, longitudinal observation study.Settings: Trauma/Critical care ICU at baseline, telephone for follow-ups.Participants: Caregivers of patients with SCI (n = 13).Interventions: None.Outcome Measures: Expectations for recovery were assessed across four primary domains identified in a review of the literature including: pain severity, level of engagement in social/recreational activities, sleep quality, and ability to return to work/school. Caregivers' forecasts of future recovery were compared to later perceived actual recovery.Results: At three months, 75% of caregivers had unmet expectations for social engagement recovery, 50% had unmet expectations for pain decrease, and 42% had unmet expectations for sleep improvement and resuming work. Rates of unmet expectations were similar at six months, with 70% of caregivers reporting unmet expectations for social engagement recovery, 50% with unmet expectations for pain decrease, and 40% with unmet expectations for sleep improvement.Conclusion: Unmet caregiver expectations for recovery could pose a risk for caregiver recovery and adjustment. Our results show that caregiver expectations merit further investigation for their link with caregiver mental health.
Keywords: Caregiver expectations; Caregivers; Family members; Recovery; Spinal cord injury.