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Initial perceptions of palliative care: An exploratory qualitative study of patients with advanced cancer and their family caregivers.姑息治疗的初步认知:一项针对晚期癌症患者及其家庭照护者的探索性定性研究。
Palliat Med. 2017 Oct;31(9):825-832. doi: 10.1177/0269216317696420. Epub 2017 Apr 3.
2
Interventions at the end of life - a taxonomy for 'overlapping consensus'.临终干预——“重叠共识”的分类法
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3
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Cancers (Basel). 2016 Dec 13;8(12):113. doi: 10.3390/cancers8120113.
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Thoughts about Dying in America: Enhancing the impact of one's life journey and legacy by also planning for the end of life.关于在美国面对死亡:通过规划生命终点,增强人生旅程及其遗产的影响力。
Proc Natl Acad Sci U S A. 2016 Nov 15;113(46):12908-12912. doi: 10.1073/pnas.1614266113. Epub 2016 Nov 8.
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Health literacy among different age groups in Germany: results of a cross-sectional survey.德国不同年龄组的健康素养:一项横断面调查的结果
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A systematic review of effectiveness of decision aids to assist older patients at the end of life.一项关于辅助老年临终患者的决策辅助工具有效性的系统评价。
Patient Educ Couns. 2017 Mar;100(3):425-435. doi: 10.1016/j.pec.2016.10.007. Epub 2016 Oct 11.
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Palliative care reimagined: a needed shift.重塑姑息治疗:一次必要的转变。
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Do Patients Want to Die at Home? A Systematic Review of the UK Literature, Focused on Missing Preferences for Place of Death.患者希望在家中离世吗?对英国文献的系统综述,重点关注死亡地点的偏好缺失问题。
PLoS One. 2015 Nov 10;10(11):e0142723. doi: 10.1371/journal.pone.0142723. eCollection 2015.
10
Advance care planning for cancer patients: a systematic review of perceptions and experiences of patients, families, and healthcare providers.癌症患者的预立医疗计划:对患者、家属和医疗服务提供者的认知与经历的系统评价
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慕课对围绕死亡展开的社区讨论的贡献。

The contribution of a MOOC to community discussions around death and dying.

机构信息

College of Nursing and Health Sciences, Flinders University, GPO Box 2100, Adelaide, SA, 5001, Australia.

Faculty of Health, University of Technology Sydney, Level 7, 235 Jones St, Ultimo, NSW, 2007, Australia.

出版信息

BMC Palliat Care. 2018 Feb 20;17(1):31. doi: 10.1186/s12904-018-0287-3.

DOI:10.1186/s12904-018-0287-3
PMID:29458347
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5819292/
Abstract

BACKGROUND

Advances in medicine have helped many to live longer lives and to be able to meet health challenges. However death rates are anticipated to increase given the ageing population and chronic disease progression. Being able to talk about death is seen to be important in normalising death as part of life and supporting preparedness for death. Massive Open Online Courses (MOOCs) provide opportunities for the community to engage in collaborative learning. A 5 week MOOC was developed covering four main topics (language and humour, representations of death, medicalisation of dying, and digital dying) aiming: To enable participants to openly and supportively discuss and learn about issues around living, death and dying, To explore the normally unheard opinions and views of Australians around death and dying, and To determine what effect online learning and discussions offered through the MOOC had on participants' feelings and attitudes towards death and dying.

METHODS

Data was captured on engagement rates in the various MOOC activities. Death Attitudes were measured by five items representing the MOOC's learning objectives and completed at enrolment and conclusion. MOOC Satisfaction was measured with six items at the end of the MOOC. Descriptive statistics were produced for each variable and Chi-Square Tests of Independence assessed the extent of the relationship between categorical variables. Socio-demographic variables were examined as predictors of the outcome variables of MOOC engagement, MOOC satisfaction, and death attitudes. Ethical approval was received from Flinders University Social and Behavioural Research Ethics Committee (Project No. 7247).

RESULTS

One thousand one hundred fifty six people enrolled in the Dying2Learn MOOC with 895 participating in some way. Enrolees were primarily female (92.1%). Age ranged from 16 to 84 (mean = 49.5, SD = 12.3). MOOC satisfaction scores were high. Responses to the experience of participating in the MOOC were very positive, with mean scores ranging from 4.3 to 4.6 (aligning with agreement and strong agreement to statements on the value of participating). Death Attitudes were positive at commencement but increased significantly following participation.

CONCLUSIONS

The Dying2Learn MOOC provided an environment that enabled open and supportive discussion around death and dying and influenced attitudinal change.

摘要

背景

医学的进步帮助许多人延长了寿命,并能够应对健康挑战。然而,随着人口老龄化和慢性病的发展,预计死亡率将会上升。能够谈论死亡被视为将死亡视为生命的一部分正常化,并为死亡做好准备的重要方式。大规模开放式在线课程(MOOC)为社区提供了协作学习的机会。开发了一个为期五周的 MOOC,涵盖了四个主要主题(语言和幽默、死亡的表现、临终的医学化和数字死亡),旨在:使参与者能够公开和支持地讨论和学习有关生活、死亡和临终的问题,探索澳大利亚人通常听不到的关于死亡和临终的意见和观点,并确定在线学习和通过 MOOC 进行的讨论对参与者对死亡和临终的感受和态度的影响。

方法

记录了各种 MOOC 活动的参与率数据。通过五项代表 MOOC 学习目标的项目来衡量死亡态度,在入学和结业时完成。MOOC 满意度在 MOOC 结束时通过六项进行衡量。为每个变量生成描述性统计数据,并通过独立性卡方检验评估分类变量之间的关系程度。社会人口统计学变量被视为 MOOC 参与度、MOOC 满意度和死亡态度的结果变量的预测因素进行了检查。弗林德斯大学社会和行为研究伦理委员会(项目编号 7247)已批准该研究。

结果

有 1156 人注册了 Dying2Learn MOOC,其中 895 人以某种方式参与其中。注册者主要为女性(92.1%)。年龄从 16 岁到 84 岁不等(平均 49.5,标准差 12.3)。MOOC 满意度得分很高。对参与 MOOC 的体验的回应非常积极,平均得分范围从 4.3 到 4.6(与对参与价值的一致和强烈同意的陈述相符)。死亡态度在开始时是积极的,但在参与后显著增加。

结论

Dying2Learn MOOC 提供了一个环境,使人们能够公开和支持地讨论死亡和临终问题,并影响态度的变化。