Measuring the quality of end-of-life care: Development, testing, and cultural validation of the Danish version of Views of Informal Carers’ Evaluation of Services–Short Form

Abstract

Background: The perspectives of patients and relatives are important in the improvement of the quality of health care. However, the quality of end-of-life care has not been systematically evaluated in Scandinavia. Aim: To develop or adapt and subsequently validate a questionnaire assessing the quality of end-of-life care in Denmark. The questionnaire was intended for bereaved relatives in order to assess the quality of care in the last 3 months of the patient’s life and the circumstances surrounding death. Design and data sources: Based on the literature and interviews with 15 bereaved relatives and 17 healthcare professionals, relevant topics to include in a questionnaire were identified. The topics were prioritized by 100 bereaved relatives and subsequently compared to existing questionnaires. The chosen questionnaire was tested by cognitive interviews with 36 bereaved relatives. Results: Most of the important topics were covered by the Views of Informal Carers’ Evaluation of Services–Short Form, but not all Danish settings (e.g. home care by a palliative team) were covered. These settings were added to the Views of Informal Carers’ Evaluation of Services–Short Form, and a few adaptations were made before a Danish version of the Views of Informal Carers’ Evaluation of Services–Short Form was tested by cognitive interviews. This cultural validation showed that the slightly adapted Danish version was perceived as relevant, understandable, and acceptable. Furthermore, the cognitive interviews gave insight in the comprehension and interpretation of Views of Informal Carers’ Evaluation of Services–Short Form items. Conclusion: With a few adaptations, the British Views of Informal Carers’ Evaluation of Services–Short Form was relevant in a Danish setting.