Measuring Chronic Patients’ Feelings of Being a Burden to their Caregivers

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.