Department of Clinical Psychology and Psychotherapy (L.B., K.N., N.L., W.R., P.V.B.), Philipps-University Marburg, Marburg, Germany.
Department of Clinical Psychology and Psychotherapy (L.B., K.N., N.L., W.R., P.V.B.), Philipps-University Marburg, Marburg, Germany.
J Pain Symptom Manage. 2021 Sep;62(3):e130-e138. doi: 10.1016/j.jpainsymman.2021.04.022. Epub 2021 Apr 30.
Open end-of-life communication is especially important within the patient-family unit of care and can positively affect their medical, psychological, and relational outcomes. Nevertheless, end-of-life discussions are often perceived as difficult and avoided.
To develop and validate the Difficulties in End-of-Life Discussions - Family Inventory (DEOLD-FI) to allow a systematic assessment of reasons why people shy away from end-of-life discussions.
Patients with advanced cancer were recruited and completed the DEOLD-FI and measures of avoidance of cancer communication, quality of life and distress, and the experienced difficulty as well as the occurrence of end-of-life discussions. Standard item analyses and an exploratory factor analysis were conducted. Construct validity was analysed through associations between the DEOLD-FI and the aforementioned measures.
Questionnaires were obtained from 112 participants (53% response rate; male 54%, mean age 64.9 years [range 33-94]). In the final 23-item version two factors were extracted: 'emotional burden due to end-of-life discussions' (α = 0.90) and "negative attitudes towards end-of-life discussions" (α = 0.91) explaining 69% of the variance (total scale α = 0.93). Construct validity was supported by its significant correlations with the reported difficulty in end-of-life discussions (r = 0.42) and avoidance of cancer communication (r = 0.40 to r = 0.46) and insignificant correlations with quality of life (r = -0.11), distress (r = 0.16), and physical well-being (r = 0.02). Those who had already engaged in end-of-life discussions showed significantly fewer communication barriers.
Results provide evidence that the DEOLD-FI is a valid and reliable instrument for the assessment of difficulties in end-of-life discussions. Benefits for clinical practice and research are discussed.
在医患家庭护理单元中，进行临终沟通尤为重要，这可以积极影响患者的医疗、心理和人际关系结果。然而，临终讨论往往被认为是困难的，因此被回避。
开发并验证《临终讨论困难量表-家庭版》（DEOLD-FI），以系统评估人们回避临终讨论的原因。
招募了患有晚期癌症的患者，并让他们完成 DEOLD-FI 以及癌症沟通回避、生活质量和困扰、体验到的困难以及临终讨论的发生的测量。进行了标准项目分析和探索性因素分析。通过 DEOLD-FI 与上述测量之间的关联来分析构念效度。
从 112 名参与者中获得了问卷（53%的回复率；男性 54%，平均年龄 64.9 岁[范围 33-94]）。在最终的 23 项版本中提取了两个因素：“临终讨论带来的情绪负担”（α=0.90）和“对临终讨论的消极态度”（α=0.91），解释了 69%的方差（总量表α=0.93）。其与报告的临终讨论困难（r=0.42）和癌症沟通回避（r=0.40 至 r=0.46）的显著相关性以及与生活质量（r=-0.11）、困扰（r=0.16）和身体幸福感（r=0.02）的不显著相关性支持了构念效度。那些已经进行过临终讨论的人表现出的沟通障碍明显较少。
研究结果表明，DEOLD-FI 是评估临终讨论困难的有效和可靠工具。讨论了其对临床实践和研究的益处。
