The Distress and Benefits of the Bereaved Family Survey: A Mortality Follow-Back Survey.

Context: The Bereaved Family Survey is an important method for evaluating the quality of palliative care.

Objectives: To examine the distress and benefits of bereaved families of patients with or without cancer, who participated in a Bereaved Family Survey, and identify factors associated with distress and benefits.

Methods: We conducted a nationwide cross-sectional, self-reported questionnaire mail survey among the bereaved families of patients who died of cancer, heart disease, cerebrovascular disease, pneumonia, or kidney failure. Participants answered questions on a four-point Likert scale measuring the distress and benefit associated with participating in the Bereaved Family Survey. We conducted a qualitative analysis of responses to open-ended questions about the distress and benefits of participating in the survey to comprehensively examine the distress and benefits of participating in the survey.

Results: Questionnaires were distributed to 115,816 eligible bereaved family members between February 2019 and February 2020; 62,576 (54.0%) family members returned valid responses. Distress and benefits accounted for 51.4% and 49.3%, respectively. The results of the binomial logistic analysis for distress were significantly higher among cancer patients (P < 0.001-0.003), 20-39-year-old patients (P < 0.001), female bereaved family members (P < 0.001), and bereaved family members with poor mental health statuses (P < 0.001). Factors related to "benefit" were significantly higher among over-80-year-old bereaved family members (P < 0.001), higher care evaluation scale (CES) scores (P < 0.001), and higher good death inventory (GDI) scores (P < 0.001).

Conclusion: Bereaved family members experience both distress and benefits. There is need to devise ways to reduce distress and increase its benefits to continue assessing the quality of palliative care.