Measuring chronic patients' feelings of being a burden to their caregivers - Development and preliminary validation of a scale

BACKGROUND. Burden on caregivers has been extensively studied, but the patient's own feelings of being a burden have rarely been examined. Such feelings may lead to distress and can complicate relations with the caregiver. This report describes the development and preliminary validation of a scale to measure patient-perceived burden. MATERIALS AND METHODS. A conceptual framework and scale items were derived from previous literature and from qualitative interviews with patients and health professionals. Following content validity and item clarity analyses, a 25-item scale was developed. This was then administered in a construct validation to 100 outpatients undergoing hemodialysis. RESULTS. Discriminant validity coefficients showed that burden scores were independent of age, education, and time on dialysis. Convergent analyses showed modest correlations with the number of comorbid conditions (r = 0.20, P <0.04), functional status (r = 0.26, P <0.01), physical function (r = 0.30, P <0.01), and mental health (r = 0.39, P <0.01). Alpha internal consistency was 0.92 and factor analyses revealed a single main factor. A 10-item abbreviation (alpha = 0.85) is therefore proposed. CONCLUSION. The self-perceived burden scale shows promise as a measure to identify patients in emotional distress due to feelings of being a burden on others, and as an outcome measure in intervention studies.