Life:Moving Onwards: Ethical Praxis and the use of film in the International End of Life Community

拟议的项目响应并为临终(EOL)社区带来重大和广泛的好处。这些问题出现在最初的“数字技术与人类脆弱性：走向伦理实践”(DTHV)研究期间，并在随后的多重影响和参与活动中具体化。其主要目标是将这些好处推广到国际EOL社区，最初重点放在乌干达、卢旺达和澳大利亚。这项试点研究是AHRC‘数字化转型’主题的一部分，从2016年10月持续到2017年3月。与伯明翰的约翰·泰勒临终关怀中心(JTH)合作，它集中制作了一个参与式电影制作项目(Life：Moving)，来自JTH的参与者共同制作了六部短片，随后在当地放映。它探讨了与绝症有关的电影制作的伦理问题，并为这一电影制作实践制作了原型指南。在DTHV期间，以及此后，很明显，电影本身对EOL社区的重要性和价值与最初强调的伦理实践(仍然是电影的核心)和作为主要利益相关者的数字电影和媒体艺术社区的重要性不相上下，甚至超过了这一点。虽然DTHV试图挑战公众对绝症的误解并支持临终关怀的提供，但它没有预见到生活：搬家对参与者、观众和EOL专业人员的影响，也没有预见这种影响如何推广到新的EOL受众和背景。生活：向前延伸，并进一步认识到这种影响。DTHV证明，电影可以在姑息治疗的背景下有效和合乎伦理地用于治疗和更广泛的社会文化目标，这些目标与对死亡的普遍看法和普遍假设有关。共同创作的电影挑战了现有的关于死亡的个人和临床经验的表述和知识，并为EOL社区的成员提供了反思的渠道和机会。对于公众来说，这些电影激发了人们对疾病、悲伤和幸福的讨论，从而促进了人们对死亡的认知。对于参与者来说，他们可以提高生活质量，促进创造性的表达。对于JTH来说，这些电影提供了关于护理和临床体验的重要视角，这在临终关怀中心的其他地方是没有的。随后，在中部地区和其他地区的其他EOL护理活动中，它们被分享给那里的临床和健康工作人员。随着胶片在公共卫生领域的广泛使用，这些研究结果对这些组织特别有吸引力，它们对于EOL员工培训和开发胶片使用的“最佳实践”的价值也因此而确立。DTHV开创了最初研究方案中没有预见到的合作可能性。活动结束后，PI夺走了生命：搬到了英国国内外的许多非学术场所，因此，两个国际合作伙伴邀请这些电影和研究在他们的年度活动上和周围分享。这个项目带来生活：转到这些关键场所，讨论和传播非洲和全球实地工作。第一个是非洲姑息治疗协会。ITS成立于2003年，在超过25个国家拥有2163个泛非成员机构。国际和平协会将参加2019年9月在卢旺达举行的年度会议，以及在会议之前在邻国乌干达举行的癌症和姑息治疗会议。第二个合作伙伴是公共卫生和姑息治疗国际组织，该组织将于今年10月在悉尼举行年度会议。与这些组织合作，这些电影和调查结果将通过论文、研讨会、社区和媒体活动与各种EOL专业人员和公众分享。通过这一活动，主办方和主办方将测试这些电影在这些不同的英语环境中引发辩论的潜力，并随后将它们转变为国际EOL社区的培训材料。

The proposed project responds to and develops significant and wide-ranging benefits for the end of life (EOL) community. These emerged during the original 'Digital Technology and Human Vulnerability: Towards an Ethical Praxis' (DTHV) research and crystallised during the ensuing multiple impact and engagement activities. Its primary objective is to extend these benefits to the international EOL community, focusing initially on Uganda, Rwanda and Australia.Part of the AHRC's 'Digital Transformations' theme, this pilot study ran from October 2016 - March 2017. Partnering with John Taylor Hospice (JTH) in Birmingham, it centred on a participatory filmmaking project (Life:Moving) in which participants from JTH co-created six short films later exhibited locally. It explored the ethical issues for filmmaking in relation to terminal illness, and produced prototypical guidelines for this filmmaking praxis. During DTHV, and since, it became clear that the importance and value of the films themselves for the EOL community matched, perhaps even exceeded, the original emphasis on both ethical praxis (still central to the films) and the digital film and media arts community as primary stakeholder. While DTHV sought to challenge public misconceptions of terminal illness and support hospice provision, it did not foresee Life:Moving's impact upon participants, audiences and EOL professionals, nor how this impact could be rolled out to new EOL audiences and contexts. Life:Moving Onwards extends, and further realises, this impact. DTHV demonstrated that film can be used effectively and ethically within a palliative care context for therapeutic and broader socio-cultural goals relating to common perceptions and prevailing assumptions about death. The co-created films challenged existing representations of, and knowledge about, the personal and clinical experience of dying, and provided both an outlet and opportunities for reflection for members of the EOL community. For the public, the films stimulate discussion of illness, grief and wellbeing, thereby promoting 'death literacy'. For participants, they can enhance quality of life and foster creative expression. For JTH, the films provided important perspectives on care and clinical experience, not picked up elsewhere in the hospice. They were subsequently shared with clinical and wellbeing staff there, at other EOL care events in the Midlands and beyond. With the burgeoning use of film within public health contexts, the findings were especially appealing to these organisations and their value for the purpose of EOL staff training and for developing 'best practice' for film use has thus been established.DTHV opened up collaborative possibilities not foreseen in the original research proposal. After it ended, the PI took Life:Moving to numerous non-academic venues in and beyond the UK and, consequently, two international partners invited the films and research to be shared at, and around, their annual events. This project brings Life:Moving to these key venues for the discussion and dissemination of African and global work in the field. The first is the African Palliative Care Association. Launched in 2003, its has a pan-African membership of 2163 institutions in over 25 countries. The PI will participate in its annual conference, in Rwanda in September 2019, and in the Cancer and Palliative Care conference in neighbouring Uganda preceding it. The second partner is Public Health and Palliative Care International, which will hold its annual conference this year in Sydney in October. In collaboration with these organisations, the films and findings will be shared with various EOL professionals and publics through papers, workshops, community and media activity. Through this, the PI and CoI will test out the the films' potential for generating debate in these different English-speaking contexts, and, subsequently, will turn them into training materials for the international EOL community.