The distress and benefit to bereaved family members of participating in a post-bereavement survey

Mitsunori Miyashita, Maho Aoyama, Saki Yoshida, Yuji Yamada, Mutsumi Abe, Kazuhiro Yanagihara, Akemi Shirado, Mariko Shutoh, Yoshiaki Okamoto, Jun Hamano, Aoi Miyamoto, Misato Nakahata

Research output: Contribution to journalArticlepeer-review

3 Citations (Scopus)


Background: Few studies have simultaneously collected quantitative data regarding the positive and negative effects of participating in post-bereavement surveys. Methods: We conducted a cross-sectional postal questionnaire survey in October 2013. Potential participants were caregivers for family members who had died in four inpatient palliative care units, two home hospices, and a general hospital. We collected opinions regarding the distress and benefit of completing a post-bereavement survey. After collecting data, we provided feedback to participating institutions in the form of study results and de-identified open-ended comments. Results: Of 692 potential participants, 596 were sent questionnaires; 393 returned questionnaires were valid and analyzed. Of the respondents, 62% reported being distressed by completing the questionnaire. Female participants and those who were mentally ill during the caregiving period reported more distress. However, 86% of respondents reported they found the questionnaire beneficial. Better quality of end-of-life care and respondent depression were associated with more benefit. Major benefits were: contributing to the development of end-of-life care as a family (63%); expressing gratitude to the hospital and medical staff (60%); and looking back and reflecting on the end-of-life period (40%). Feeling benefit was not correlated with feeling distressed (P =-0.02). Conclusion: In this large-scale study on the effects of post-bereavement surveys in Japan, many bereaved family members reported that completing the survey was beneficial. In addition to possibly having feelings of distress, post-bereavement surveys might also be beneficial to end-of-life care facilities.

Original languageEnglish
Pages (from-to)135-143
Number of pages9
JournalJapanese journal of clinical oncology
Issue number2
Publication statusPublished - 2018 Feb 1


  • Benefit
  • Bereavement
  • Distress
  • Neoplasms
  • Palliative care
  • Post-bereavement survey

ASJC Scopus subject areas

  • Oncology
  • Radiology Nuclear Medicine and imaging
  • Cancer Research


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