The burden of care for informal caregivers of patients with rheumatoid arthritis

Objectives. To determine which factors are related to the burden of care as experienced by informal caregivers of Rheumatoid Arthritis (RA)-patients.

Methods. Data were collected by means of questionnaires from 174 patients with RA for at least 5 years and from their informal caregivers. We evaluated objective and subjective measures of burden as experienced by the caregiver, patient demographic and other characteristics, such as health status, social support, self-efficacy expectations and caregiver characteristics.

Results. The objective burden on caregivers is considerable. On average, caregivers helped patients for 33 hours per week, including 15 hours with activities of daily living and 18 hours with household activities. Subjective burden as experienced by the caregivers is strongly related to objective burden, the caregivers' self-efficacy expectations with respect to helping with household activities, the caregivers' physical health status and the number of children the patient has.

The caregivers' mental health is not significantly related to objective burden. The most significant predictors of the mental health of caregivers are their physical health status, their self-efficacy expectations with respect to helping with household activities, the number of children the patient has and the patient's level of fatigue. Differences between male and female caregivers and between care-giving partners and non-partners are discussed.

Conclusion. The burden on caregivers of RA-patients is considerable. The caregivers' self-efficacy expectations with regard to giving help is one of the main variables explaining the burden on caregivers.