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寿命结束（EOL）社区开发重大和广泛的利益。这些都是在最初的“数字技术和人类脆弱性：走向道德实践”（DTHV）研究中出现的，并在随后的多个影响和参与活动中具体化。其主要目标是将这些好处扩展到国际EOL社区，最初集中在乌干达，卢旺达和澳大利亚。作为AHRC“数字转型”主题的一部分，这项试点研究于2016年10月至2017年3月进行。它与伯明翰的约翰·泰勒临终关怀中心（JTH）合作，集中在一个参与式电影制作项目（生命：移动）上，JTH的参与者共同创作了六部短片，后来在当地展出。它探讨了与绝症有关的电影制作的伦理问题，并为这种电影制作实践制定了原型指南。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道德实践（仍然是电影的核心）以及数字电影和媒体艺术社区作为主要利益相关者相匹配，甚至可能超过。虽然DTHV试图挑战公众对绝症的误解并支持临终关怀服务，但它没有预见到Life：Moving对参与者，观众和EOL专业人员的影响，也没有预见到这种影响如何推广到新的EOL观众和环境。《生活：向前迈进》延伸并进一步实现了这种影响。DTHV表明，电影可以有效地和道德地用于姑息治疗背景下的治疗和更广泛的社会文化目标有关的共同看法和流行的假设死亡。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陈述和知识，并为EOL社区的成员提供了一个反思的出口和机会。对于公众来说，这些电影激发了对疾病、悲伤和幸福的讨论，从而促进了“死亡素养”。对参与者来说，它们可以提高生活质量，促进创造性表达。对于JTH来说，这些电影提供了关于护理和临床经验的重要观点，而不是在临终关怀的其他地方。随后，他们与那里的临床和健康工作人员分享，在中部地区和其他地方的其他EOL护理活动中。随着电影在公共卫生领域的迅速应用，这些研究结果对这些组织特别有吸引力，因此确定了它们对EOL员工培训和开发电影使用“最佳实践”的价值。DTHV开辟了最初研究提案中没有预见到的合作可能性。在它结束后，PI采取了生活：移动到英国内外的许多非学术场所，因此，两个国际合作伙伴邀请电影和研究在他们的年度活动中和周围分享。该项目带来了生活：转移到这些关键场所，讨论和传播非洲和全球在该领域的工作。第一个是非洲姑息治疗协会。该组织于2003年成立，拥有泛非成员，包括超过25个国家的2 163个机构。PI将参加2019年9月在卢旺达举行的年度会议，以及在此之前在邻国乌干达举行的癌症和姑息治疗会议。第二个合作伙伴是国际公共卫生和姑息治疗组织，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，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专业人士和公众分享。通过这一点，PI和CoI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，并随后将其转化为国际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.