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

The distress and benefit to bereaved family members of participating in a post-bereavement survey.
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Miyashita M, Aoyama M, Yoshida S, Yamada Y, Abe M, Yanagihara K, Shirado A, Shutoh M, Okamoto Y, Hamano J, Miyamoto A, Nakahata M,


Miyashita M, Aoyama M, Yoshida S, Yamada Y, Abe M, Yanagihara K, Shirado A, Shutoh M, Okamoto Y, Hamano J, Miyamoto A, Nakahata M, (click to view)

Miyashita M, Aoyama M, Yoshida S, Yamada Y, Abe M, Yanagihara K, Shirado A, Shutoh M, Okamoto Y, Hamano J, Miyamoto A, Nakahata M,

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Japanese journal of clinical oncology 2017 12 13() doi 10.1093/jjco/hyx177
Abstract
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.

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