Vehling S, Gerstorf D, Schulz-Kindermann F, Oechsle K, Philipp R, Scheffold K, Härter M, Mehnert A, Lo C
Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Palliative Care Unit, Department of Oncology, Hematology, and Bone Marrow Transplantation with Section of Pneumology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Eur J Cancer Care (Engl). 2018 Jul;27(4):e12842. doi: 10.1111/ecc.12842. Epub 2018 Apr 27.
Individual adaptation at the end of life may be characterised by how patients fluctuate in their orientation towards losses and death or engagement in meaningful activities in daily life. To describe these intraindividual patterns of change, we conducted a daily diary study over 7 days with 17 advanced cancer patients from in- and outpatient oncology and psycho-oncology clinics. Patients reported on the daily frequency of behaviours associated with loss orientation and life engagement using a standardised questionnaire. We characterised each patient's pattern of change with three parameters: the mean level (5-point-scale from 0 = never to 4 = always), mean fluctuation between successive days (MSSD) and the association between changes in loss and life orientation over time. We further explored the relationship between these patterns and free-text diaries. The daily assessment protocol was acceptable and feasible (46% participation rate, 97% diary completion rate). Individuals differed in mean levels of loss orientation (range: M = 0.1 to 2.7) and life engagement (M = 0.9 to 3.9), the degree of fluctuation (MSSD = 0.1 to 1.5 and MSSD = 0.3 to 0.9), and the correlations between these changes over time (r = -.83 to +.46), revealing distinctive intraindividual patterns. Further study of individual profiles in loss and life orientation can promote personalised balancing between facing "reality" and sustaining "hope" in end-of-life conversations.
生命末期的个体适应可能表现为患者在面对丧失和死亡时的态度波动,或者在日常生活中参与有意义活动的情况。为了描述这些个体内部的变化模式,我们对来自肿瘤内科和心理肿瘤门诊的17名晚期癌症患者进行了为期7天的日记研究。患者使用标准化问卷报告与丧失导向和生活参与相关行为的每日频率。我们用三个参数来描述每位患者的变化模式:平均水平(从0 = 从不到4 = 总是的5分制)、连续几天之间的平均波动(MSSD)以及丧失和生活导向随时间变化之间的关联。我们进一步探讨了这些模式与自由文本日记之间的关系。每日评估方案是可接受且可行的(参与率46%,日记完成率97%)。个体在丧失导向的平均水平(范围:M = 0.1至2.7)和生活参与度(M = 0.9至3.9)、波动程度(MSSD = 0.1至1.5和MSSD = 0.3至0.9)以及这些变化随时间的相关性(r = -0.83至+0.46)方面存在差异,揭示了独特的个体内部模式。对丧失和生活导向方面个体特征的进一步研究可以促进在临终谈话中实现面对“现实”和维持“希望”之间的个性化平衡。