title: Measuring chronic patients' feelings of being a burden to their caregivers: development and preliminary validation of a scale.
abstract: 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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Epidemiology and Community Medicine, University of Ottawa, Ottawa, Ontario, Canada.
authors.forename: Natalie
authors.initials: N
authors.lastname: Cousineau
authors.forename: Ian
authors.initials: I
authors.lastname: McDowell
authors.forename: Steve
authors.initials: S
authors.lastname: Hotz
authors.forename: Paul
authors.initials: P
authors.lastname: Hébert
mesh_terms: D000367:Age Factors; D017028:Caregivers; D002908:Chronic Disease; D004493:Education; D005260:Female; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D010361:Patients / Q000523:psychology*; D011788:Quality of Life; D006435:Renal Dialysis; D018401:Sample Size; D012494:Sampling Studies; D011795:Surveys and Questionnaires; D013997:Time Factors