Furlan de Brito Maja, Selman Lucy E, Coelho Alexandra, Gomes Barbara
Faculty of Medicine, University of Coimbra, Coimbra, Portugal.
Centre for Innovative Biomedicine and Biotechnology (CIBB), University of Coimbra, Coimbra, Portugal.
Palliat Med. 2025 Sep;39(8):884-896. doi: 10.1177/02692163251353012. Epub 2025 Jul 28.
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.
To pilot and refine a survey and the survey method to measure the quality and variations in bereavement support at a service level.
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.
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.
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.
在姑息治疗中，提供丧亲之痛护理并非标准做法，这意味着在服务层面上，用于了解支持质量的常规收集数据非常匮乏。调查研究可以填补这一空白。
对一项调查及调查方法进行试点和完善，以衡量服务层面丧亲之痛支持的质量和差异。
认知访谈研究。在分析过程中，我们结合了修复性和描述性认知访谈方法，以确定测量误差和任何参与带来的困扰。
设置/参与者：通过一家医院的姑息治疗服务机构，连续招募因癌症失去亲人的人（死亡后13 - 19个月）。
20名失去亲人的人参与了研究（父母丧亲8/20，伴侣丧亲7/20，兄弟姐妹丧亲3/20，成年子女丧亲2/20）；年龄中位数为59岁（范围28 - 76岁），男性6名。癌症死亡发生在访谈前16 - 19个月。识别出的测量误差大多与理解有关，已得到修正。我们在调查背景下完善了丧亲之痛支持的定义，并重新安排了各部分内容，以减轻情感负担并缩短完成时间。参与调查虽被认为令人痛苦，但对丧亲者而言具有个人价值、相关性且对改善丧亲之痛支持很重要。
我们开发、试点并完善了一项调查，以评估丧亲之痛支持的质量和差异，姑息治疗服务机构可在临床实践中使用该调查来改进质量。调查参与虽然可能令人痛苦，但丧亲者能够接受并重视。
