Translation, adaptation and data quality of a Danish version of the Burden Scale for Family Caregivers

Abstract

Background: The burden of caregiving can have various negative consequences. There is a need for health professionals to be able to measure the burden of caregiving among relatives of end-stage cancer patients in a valid way. The Burden Scale for Family Caregivers (BSFC) has 28 items and was developed as a clinical tool for measuring the self-reported burden among family caregivers caring for a relative at home.

Aim: To make a standardized translation of the English version of the BSFC into a Danish version and to report data quality in a group of Danish family caregivers caring for palliative care cancer patients.

Material and method: The BSFC was translated following WHO guidelines. Ninety family caregivers of end-stage cancer patients were sent BSFC as part of a larger questionnaire. A total of 75 (83%) returned the questionnaire. Excluding responses with two or more missing items, 58 (64%) participants completed the BSFC.

Results: The words 'care', 'caregiving' and 'caregiver' were a challenge to the translators. The item response was moderate with missing answers from 4.0 to 18.7%. For the total sum-score, mean perceived burden amongst participants was low (mean score 23.56 of max 84.00). Cronbach's alpha was 0.91 and average inter-item correlation 0.26. Item-rest correlations ranged from -0.02 to 0.72 and were below 0.40 for seven items. High scores on the BSFC was statistically significantly correlated with the feeling of social isolation (ρ = -0.332, p = 0.013) and with the dyspnoea subscale of the EORTC-QLQ-15-PAL (ρ = 0.322, p = 0.012) but not with poor self-reported health (ρ = -0.036, p = 0.805).

Conclusion: The BSFC was translated into Danish and showed problems with some data quality and validity measures. Hence, further psychometric testing on a larger population is needed before the scale can be recommended as a sum-scale for scientific and clinical use.

Keywords: Burden Scale for Family Caregivers; adaptation; caregiving; data quality; palliative care; translation.