Abstract
BackgroundIn China, caregivers of chronic viral hepatitis patients experience considerable burdens, stress and disruption of their own well-being and social activities. Measurement of the effect on caregivers is an under-researched area. The Family Burden Interview Schedule (FBIS) was primarily devised for the caregivers of schizophrenia patients, and the adverse effect of the disease was similar to the effect of chronic viral hepatitis on family caregivers. In this study, we prospectively evaluated the psychometric properties of FBIS in the field of chronic viral hepatitis and used it to determine the factors affecting the caregiver burden on the family members of chronic viral hepatitis patients in Shanghai, China.MethodsA representative sample of patients (n = 1478) and caregivers (n = 1478) was randomly obtained through a multi-stage cluster sampling in Shanghai, China. Reliability and validity tests were used to verify the psychometric properties of the instrument. The two-level random intercept model was applied to determine the factors of the caregiver burden between the household and the community level.ResultsCronbach’s alpha coefficient was 0.90 for the overall instrument with statistical significance. Factor analysis suggested a three-factor model for the FBIS and confirmed that the adjusted unidimensional model and the second-order multidimensional model had better fit statistics. The average score of the caregiver burden in Shanghai was 12.62 ± 10.74, and financial burden constituted the major effect. The two-level random intercept model demonstrated that the risk factors were hospitalisation (β 1.69, 95%CI 0.48 to 2.90), elevated serum alanine aminotransferase levels (β 1.05, 95%CI 0.15 to 1.95), HCV infection (β 4.49, 95%CI 1.22 to 7.77), and acceptance of the hepatitis B vaccine (β 2.20, 95%CI 0.56 to 3.85), whereas the protective factors were no consumption of alcohol (β -2.69, 95%CI −5.19 to −0.19), average monthly costs for patients less than or equal to 100 US dollars (β -2.96, 95%CI −5.83 to −0.09), and good health status of family caregivers (β -9.91, 95%CI −12.76 to −7.05).ConclusionsFBIS can accurately measure the caregiver burden for chronic hepatitis. Targeting interventions toward the conditions associated with the caregiver burden is of great importance.
Highlights
In China, caregivers of chronic viral hepatitis patients experience considerable burdens, stress and disruption of their own well-being and social activities
Demographics Excluding those who refused participation (20) and/or had missing data (2), 1478 chronic viral hepatitis patients and one family caregiver of each patient were recruited from 10 districts and 40 communities in Shanghai during 2012
Further evidence of the confirmatory factor analysis indicated that item 7 (i.e., “patient not attending work, school, etc.”), item 8 (i.e., “patient unable to help in household duties”), and item 17 (i.e., “other members arguing over the patient”) should be relocated from the “disruption of family routine activities” scale to the “ financial burden” scale
Summary
In China, caregivers of chronic viral hepatitis patients experience considerable burdens, stress and disruption of their own well-being and social activities. The traditional biomedical model of health is being integrated with the social science model of health, which is based on a psychosocial and economic foundation This integrated approach to clinical practice and research on hepatitis prevention requires monitoring the traditional physiological and biomedical outcomes and improving the community environment, family support, and health related quality of life [7,8]. In China, family members in the role of caregiver of patients with chronic viral hepatitis experience considerable burdens, stress, disruption of personal wellbeing and social activities. In most cases, they worry about the economic effect, therapeutic effect and time expenditure, and are at risk for emotional and physical health problems. Measurement of the family caregiver burden of chronic hepatitis patients using an appropriate psychometric instrument has been an important yet under-researched area in the Chinese population
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