A study of burden of care and its correlates among family members supporting relatives and loved ones with traumatic spinal cord injuries

Abstract

Objective: To understand and describe in a sample of caregivers of persons with spinal cord injury, their burden of care, resilience and life satisfaction and to explore the relationship between these variables. Design: Cross-sectional design. Setting: One Spinal Cord Injury Acute Inpatient Unit from a general hospital. Subjects: Seventy-five relatives of persons with spinal cord injuries (84% women) with a mean age of 48.55 ( SD = 12.55) years. Interventions: None. Measures: Demographics (neurological loss and severity according to the American Spinal Injury Association criteria), the Zarit Burden Interview, the Resilience Scale and the Life Satisfaction Checklist. Results: All caregivers experienced feelings of different intensities of burden (52% mild-to-moderate, 43% moderate-to-severe and 5% severe), and none of them expressed little or no burden at the assessment moment. Caregivers’ main worries were “dependence” and “the future of the injured.” Resilience was medium-to-high (mean = 141.93, SD = 23.44) for the whole sample with just a minority of them revealing low (15%) or very low resilience (7%). The highest scores were obtained in relation to “caregivers’ independence” and “meaning of their lives.” Life satisfaction scores were medium-to-high (mean = 36.6, SD = 6). These scores were not related to demographics or the severity of the injury. Zarit Burden Interview scores were negatively correlated to Resilience Scale ( r = −.370, P = .001) and Life Satisfaction Checklist scores ( r = −.412, P < .001). Conclusion: More resilient and satisfied caregivers experienced lower burden. Burden is moderate-to-high and mainly related to uncertainty about the future, caregivers’ insecurity with caregiving and dependence of the injured.