Burden in caregivers of long-term stroke survivors: Prevalence and determinants at 6 months and 5 years after stroke

To assess the prevalence of considerable burden among caregivers of stroke survivors at 6 months (Time 1) and 5 years after stroke (Time 2), to analyse changes in burden severity over time and to identify factors associated with the burden.Eighty eight patient/caregiver pairs were assessed. Caregiver burden was measured with the Caregiver Burden Scale. Socio-demographic, stroke-related and psychological characteristics were analysed as potential determinants of the burden. Exact multiple logistic regression was used to identify the predictive factors.Considerable burden was reported by 44% of the caregivers at Time 1 and 30% at Time 2. The burden was independently associated with caregivers' sense of coherence and amount of time spent caregiving at Time 1, and with caregivers' anxiety at Time 2.A significant proportion of the caregivers experienced considerable burden in the post-acute and chronic phases of stroke, although this proportion declined over time. Several characteristics were associated with the increased burden at different time points. All the independent predictors related to aspects of the carers.Programmes including education about coping strategies and time management, as well as respite care provision, could be beneficial and might help to reduce the burden of caregiving.