Hosokawa Mai, Nakazawa Yoko, Miyashita Mitsunori, Masukawa Kento, Sato Momoka, Morita Tatsuya, Okumura Yasuyiki, Kizawa Yoshiyuki, Kawagoe Shohei, Yamamoto Hiroshi, Takeuchi Emi, Yamazaki Risa, Ogawa Asao
Department of Palliative Nursing, Health Sciences (M.H., M.M., K.M., M.S.), Tohoku University Graduate School of Medicine, Miyagi, Japan; Graduate School of Nursing (M.H.), Iwate Prefectural University, Iwate, Japan.
Division of Policy Evaluation (Y.N.), Institute for Cancer Control, National Cancer Center, Tokyo, Japan.
J Pain Symptom Manage. 2025 Feb;69(2):152-164. doi: 10.1016/j.jpainsymman.2024.10.029. Epub 2024 Nov 4.
The Bereaved Family Survey is an important method for evaluating the quality of palliative care.
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.
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.
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).
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.
丧亲家庭调查是评估姑息治疗质量的重要方法。
调查参与丧亲家庭调查的癌症患者或非癌症患者的丧亲家庭的痛苦与益处，并确定与痛苦和益处相关的因素。
我们在全国范围内对死于癌症、心脏病、脑血管疾病、肺炎或肾衰竭患者的丧亲家庭进行了横断面、自我报告的问卷调查。参与者以四点李克特量表回答关于参与丧亲家庭调查相关的痛苦和益处的问题。我们对关于参与调查的痛苦和益处的开放式问题的回答进行了定性分析，以全面调查参与调查的痛苦和益处。
在2019年2月至2020年2月期间，向115816名符合条件的丧亲家庭成员发放了问卷；62576名（54.0%）家庭成员返回了有效回复。痛苦和益处分别占51.4%和49.3%。痛苦的二项逻辑分析结果显示，癌症患者（P<0.001-0.003）、20-39岁患者（P<0.001）、女性丧亲家庭成员（P<0.001）以及心理健康状况较差的丧亲家庭成员（P<0.001）的痛苦程度显著更高。与“益处”相关的因素在80岁以上的丧亲家庭成员中显著更高（P<0.001）、护理评估量表（CES）得分更高（P<0.001）以及良好死亡量表（GDI）得分更高（P<0.001）。
丧亲家庭成员既经历痛苦也体验到益处。需要设计方法来减少痛苦并增加其益处，以持续评估姑息治疗的质量。
