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Abstract
Objective: In research as well as in the practice of caregiver counselling, the subjective burden of family caregivers is considered an important characteristic of home care. The objective of the present study was to provide an extended validation of the German language version of the Burden Scale for Family Caregivers (BSFC) published in 2001.
Methods: Extended validation was performed using medical, interview, and health insurance data of 351 informal caregivers and their relatives who had dementia. Cronbach's alpha was calculated to assess the internal consistency of the items, and an exploratory factor analysis was conducted to determine the structure of the BSFC. The discriminatory power and item difficulties of the 28 BSFC items were examined. Five research questions addressed construct validity. Question six addressed the BSFC score as a potential predictor of institutionalization at a follow-up time of 2.5 years (predictive validity).
Results: Exploratory factor analysis indicated that the BSFC had a single-factor structure. Cronbach's alpha for the total scale was 0.93. A significant increase in the BSFC score was observed when the severity of cognitive impairment increased, persons with dementia showed disturbing behaviour, caregivers were diagnosed with depression, care requirements increased, or the family caregiver and the person with dementia lived together. Caregiver burden emerged as a significant predictor of institutionalization. The validity of the BSFC was confirmed by the results.
Conclusion: The BSFC score allows for a valid assessment of the total caregiver burden in both research and practice. The BSFC is available for free in 20 languages (http://www.caregiver-burden.eu).
Acknowledgements
The authors thank the following members of the IDA working group for their permission to use the IDA database: Rolf Holle (Helmholtz Zentrum München), Reiner Leidl (Helmholtz Zentrum München), Peter Marx (Pfizer), Hilmar Mehlig (Eisai), Martina Sitte (Federal Association of the AOK), Sonja Wunder (AOK Bavaria – Health Insurer), and Jörg Lauterberg (German Institute for Quality and Efficiency in Health Care).
The original and data collecting study was approved by the Ethics Committee at the Bavarian Chamber of Physicians (No. 05029) and is in accordance with the Helsinki Declaration.
For further information on trial registration see ISRCTN68329593.
Disclosure of conflicts of interest
H. Grau and H. Berth are independent scientists and declare they have no competing interests.
E. Graessel is an independent scientist who has received funding for the original and data collecting study ‘IDA project’.
The original and for this work data collecting study ‘IDA project’ was initiated and financed by four partners with equal rights in its conception, development, and implementation: the Federal Association of the AOK and the AOK Bavaria Health Insurer, one of the largest statutory health insurance companies in Germany, and the research-based pharmaceutical companies Eisai and Pfizer. For the original data collecting study sponsors have commissioned two academic research institutions with the scientific evaluation of the ‘IDA project’ by providing unconditional research funds. A contract between the sponsors and academic researchers ensures that the latter have full scientific responsibility and have the right to publish the results. Members of the sponsoring organizations closely cooperate in designing and conducting the project, but only the academic researchers have full access to all the data in this study and take complete responsibility for the integrity of the data and the accuracy of the data analysis.