Surveying the quality of bereavement support within a service setting: A pilot study using cognitive interviewing with bereaved people.

Abstract

Background: Provision of bereavement care is not standard practice in palliative care, meaning routinely collected data to understand support quality at a service level is scarce. Survey research can fill this gap.

Aim: To pilot and refine a survey and the survey method to measure the quality and variations in bereavement support at a service level.

Design: Cognitive interview study. In analysis we used a combination of reparative and descriptive cognitive interview approaches to ascertain measurement errors and any participation distress.

Setting/participants: People bereaved due to cancer (13-19 months post death) were consecutively recruited via a hospital-based palliative care service.

Results: Twenty bereaved people participated (parental bereavement 8/20, partner 7/20, sibling 3/20, adult child 2/20); median age 59 (range 28-76), 6 men. Cancer deaths occurred 16-19 months before the interview. Identified measurement errors, mostly related to comprehension, were fixed. We refined the definition of bereavement support in the context of the survey and reordered the sections to reduce emotional burden and improve time completion. Participating in the survey was considered distressing yet personally valuable, relevant and important for improving bereavement support.

Conclusions: We developed, piloted and refined a survey to assess quality and variations in bereavement support which can be used by palliative care services in clinical practice for quality improvement. Survey participation, while potentially distressing, was acceptable to and valued by bereaved people.