Caregiver's burden of patients 3 years after stroke assessed by a novel caregiver burden scale

Objective: To assess burden of caregivers to stroke patients three year after a primary stroke and to test validity and reliability of a novel caregiver burden scale (CB scale). Design: A longitudinal community-based 3-year follow-up study of 35 consecutive primary stroke patients initially admitted to an Acute Medical Unit (mean age 82 yr). The validity of the CB scale was studied in 150 patients (mean age 77 yr):83 demented outpatients assessed for need of group living and 67 outpatients with stroke from a general geriatric day-care unit. Reliability was studied in another 23 outpatients (mean age 72 yr) with stroke from the same unit. Methods: A 22-item CB scale for different types of caregiver burden and scales for neuroticism and extroversion (Eysenck Personality Inventory) and quality of Life (Ii-item scale). Activities of daily life were assessed by a 6-item scale, initially and 3 years later. Outcome Measure: Reliability and validity of the CB scale. Improvements of activities of daily life of stroke patients. Results: Factor analyses of the CB scale gave five indices-general strain, isolation, disappointment, emotional involvement, and environment-having good kappa values, .89 to 1.00 and Cronbach's alpha, .70 to .87, except for environment. A higher burden was related to a closer relationship but not to the living situation. The highest caregiver burden was found among patients showing the greatest improvements of ADL, when divided into tertiles. The patient's degree of extroversion and quality of life were negatively correlated to caregiver burden, .46 (p < .05) and .59 (p < .01). Conclusions: The CB scale proved to be a valid and reliable instrument to assess caregiver burden. To improve the caregiver situation, individual patient personality characteristics, like extroversion, feeling of quality of life, and progression of the disease, must be considered. (C) 1996 by the American Congress of Rehabilitation Medicine and the American Academy of Physical Medicine and Rehabilitation.