Tishelman Carol
Karolinska Institutet, Solna, Sweden.
Ann Palliat Med. 2018 Jan;7(Suppl 1):AB003. doi: 10.21037/apm.2018.s003.
Public health and health promotion approaches to end-of-life (EoL) research and care are still rare in Sweden. People remain generally ill-prepared for encounters with death and unable to advocate for quality EoL care; this may be reflected in Sweden's low scores for community engagement in the 2015 Quality of Death index. We have consolidated our endeavours into a cohesive national transdisciplinary research program, DöBra (a pun meaning both 'dying well' and 'awesome' in Swedish). In DöBra, we investigate how culture, the environment and conversation can promote constructive change and support better quality of life and death among the general population, in specific subgroups and in interventions directed to staff caring for dying individuals, their friends and families. DöBra uses ideas from new public health and the Ottawa Charter as umbrella theoretical frameworks and participatory action research as an overarching methodological approach. In DöBra we aim to achieve change in communities in a broad sense. In this interactive workshop, we therefore focus on the particular challenges we encounter in conducting stringent research when trying to catalyse, rather than control, change processes. We will share our ideas, experiences, reflections, tools and approaches as well as results, related to using a variety of strategies to bring together a broad range of stakeholders to co-create experience-based evidence through innovative approaches. We begin by linking theory, research and practice through discussion of the overarching ideas and individual projects, with the second part of the session based on audience engagement with various tools used in DöBra.
在瑞典,针对临终研究与护理的公共卫生及健康促进方法仍然很少见。人们通常对面对死亡毫无准备,也无法倡导高质量的临终护理;这或许体现在瑞典在2015年死亡质量指数中的社区参与度得分较低。我们已将各项努力整合为一个具有凝聚力的全国性跨学科研究项目——DöBra(在瑞典语中是一个双关语,既表示“善终”,也表示“很棒”)。在DöBra项目中,我们研究文化、环境和对话如何能促进建设性变革,并在普通人群、特定亚群体以及针对照顾临终患者及其朋友和家人的工作人员的干预措施中,支持更高质量的生活和死亡。DöBra以新公共卫生理念和《渥太华宪章》作为总体理论框架,并将参与式行动研究作为总体方法论。在DöBra项目中,我们旨在从广义上实现社区的变革。因此,在这个互动研讨会上,我们将重点关注在进行严谨研究时遇到的特殊挑战,即试图催化而非控制变革过程。我们将分享我们的想法、经验、思考、工具和方法以及结果,这些与运用各种策略将广泛的利益相关者聚集在一起,通过创新方法共同创造基于经验的证据有关。我们首先通过讨论总体理念和各个项目来将理论、研究与实践联系起来,会议的第二部分则基于听众对DöBra中使用的各种工具的参与情况展开。