Patterns of change and stability in caregiver burden and life satisfaction from 1 to 2 years after severe traumatic brain injury : a Norwegian longitudinal study

Abstract

Objectives: To assess burden and life satisfaction in caregivers of patients with severe traumatic brain injury (sTBI) at 1 and 2 years post-injury, to examine if change in burden can be predicted by caregiver and patient demographics, patient’s functional status, caregiver’s social network or caregiver’s level of burden at 1 year. Design: Prospective national multicenter study. Self-report from caregivers, patient data collected from a national cohort study on patients with sTBI. Participants: 80 caregivers. Main outcome measure: The Caregiver Burden Scale (CBS), life satisfaction. Results: The total caregiver burden increased significantly between years 1 and 2 post-injury (p=0.04). Life Satisfaction was significantly lower at 2 years follow-up (p=0.03) than at 1 year. Thirty percent of the caregivers reported an increased burden, 55% were stable, and 15% had a decrease in burden between the two follow-up times. Logistic regression analyses revealed that experiencing loneliness was an independent predictor of increased burden from 1 to 2 years post-injury (OR=4.35, p<0.05). Conclusions: The results demonstrate a need for long-term follow-up of patients and caregivers that particularly focuses on professional support to relieve caregiver burden and risk of loneliness or social isolation. This group may benefit from additional follow-up interventions tailored to their needs