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Rheumatology Advance Access originally published online on June 16, 2003
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Rheumatology 2003; 42: 1226-1233
© 2003 British Society for Rheumatology

Dimension-specific burden of caregiving among partners of rheumatoid arthritis patients

C. E. Jacobi1,2, B. van den Berg3,4, H. C. Boshuizen3, I. Rupp2,3, H. J. Dinant5,6 and G. A. M. van den Bos2,3

1Department of Medical Decision Making, Leiden University Medical Centre, Leiden, 2Department of Social Medicine, Academic Medical Centre, University of Amsterdam, Amsterdam, 3National Institute of Public Health and the Environment, Bilthoven, 4Department of Health Policy and Management and Institute for Medical Technology Assessment, Erasmus Medical Centre, Rotterdam, 5Jan van Breemen Institute, Centre for Rheumatology and Rehabilitation, Amsterdam and 6Department of Clinical Immunology and Rheumatology, Academic Medical Centre, University of Amsterdam, The Netherlands.

Correspondence to: C. E. Jacobi, Department of Medical Decision Making (J10-R), Leiden University Medical Centre, P.O. Box 9600, 2300 RC Leiden, The Netherlands. E-mail: c.e.jacobi{at}lumc.nl

Objectives. To assess subjective caregiver burden among partners of rheumatoid arthritis (RA) patients and to identify partner and patient variables and objective caregiver burden related to subjective caregiver burden.

Methods. In 2001, 134 patients diagnosed with RA and their caregiving partners participated in a postal questionnaire survey. Information was gathered on age, gender and health problems of patient and partner, disease duration of the patient, objective caregiver burden and subjective caregiver burden of the partner (using the multidimensional Caregiver Reaction Assessment). Correlation coefficients were computed between the subjective caregiver burden dimensions. Multivariate analyses were performed to identify variables that explained the variation in subjective burden.

Results. Partners of RA patients derived, on average, a high level of self-esteem from giving care. Negative subjective caregiver burden was to a large degree caused by a disrupted schedule and to a smaller degree by a lack of family support, financial problems and loss of physical strength. Problems of the partner with mobility or with pain/discomfort and problems of the patient with self-care activities and activities of daily life had the largest impact on negative levels of subjective caregiver burden.

Conclusions. Health parameters of the patient and partner have a considerable predictive value for the development of high levels of subjective burden in partners of RA patients. Support strategies should be developed for partners of RA patients, and should focus especially on reducing the burden caused by a disrupted schedule, and simultaneously on increasing the focus of caregivers on the positive aspects of caregiving.

KEY WORDS: Rheumatoid arthritis, Partners, Caregiver burden, Impact of caregiving, Informal care, Multidimensional burden of caregiving.


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