Objectives of study: To investigate how carers’ evaluations of palliative care change depending on timing and method of measurement.
Method: Bereaved carers of 113 palliative care patients recruited through a hospice at home service completed a postal questionnaire six weeks post bereavement and a semi-structured face-to-face interview six months post bereavement. At both points carers assessed the adequacy of the support provided and severity of symptoms in the patient’s last two weeks of life. McNemar and Sign tests were used to investigate change.
Results: The proportion of carers who felt information had been insufficient increased significantly from questionnaire to interview. Otherwise there was no change in assessment of support, but this hides that many carers changed their view between the two measurements. However, changes cancelled each other out. The proportion of carers who reported that the patient suffered from nausea, anxiety and depression decreased significantly from questionnaire to interview. All reported differences were at p <0.05.
Conclusions: Due to its inherent challenges, palliative service evaluation often relies on carers’ retrospective assessment of care. However, this study suggests that the same carer may give considerably different responses to evaluation questions at different points. To properly interpret carers’ assessments the effects of timing and method of data collection need to be disentangled and understood. Implications for future research will be discussed in light of the study findings and past research into carer assessments.