Caregiver burden after stroke: a 10-year follow-up study of Polish caregivers for stroke patients

Abstract

BackgroundA long-term assessment of stroke outcomes from the perspectives of patients and their caregivers is important for optimising long-term post-stroke care. The extended effects of stroke caregiving, particularly caregiver burden beyond 5 years since stroke, remain to be determined. Hence, this study aimed to determine caregiver burden at 10 years after stroke, compare the burden severity at 10 years with its levels at 5 years and 6 months after stroke, and identify predictors of the burden severity at 10 years post-stroke.MethodsA longitudinal follow-up study including a group of first-ever stroke patients/informal continuous caregivers pairs was followed for 10 years and interviewed face-to face at their home setting.Caregiver burden was evaluated with the Caregiver Burden Scale. Potential predictors were examined using standardised measures and identified by applying the Classification and Regression Tree.ResultsA total of 40 caregiver/patient pairs participated in the study. At 10 years, 47.5% of the caregivers experienced a considerable burden. This was more than after 5 years (17.5%) and comparable to that after 6 months (37.5%), p < 0.003. Longer time spent caregiving, caregivers’ weaker sense of coherence, more severe stroke, and caregivers’ anxiety were the independent predictors of considerable burden 10 years after stroke.ConclusionsCaregivers’ burden in the late chronic post-stroke phase is a significant problem, as nearly half of the caregivers experience a substantial burden. This problem mainly concerns individuals who spend at least 7 h daily caregiving and have a lower Sense of Coherence.The long-term evaluation of stroke consequences reported by stroke patients and their caregivers can be an important source of information for healthcare professionals in order to optimise the care and support they provide at various stages of life after stroke.