Kuhlmann Naila, Thomas Aliki, Incio-Serra Natalia, Blain-Moraes Stefanie
School of Physical and Occupational Therapy, McGill University, Montreal, QC, Canada.
Center for Circus Arts Research, Innovation and Knowledge Transfer, National Circus School, Montréal, QC, Canada.
Front Psychol. 2024 Nov 25;15:1439362. doi: 10.3389/fpsyg.2024.1439362. eCollection 2024.
The subjective experience of illness is often overshadowed by the disease-and-cure focus of health research, contributing to the stigmatization of conditions such as Parkinson's disease and dementia. This is exacerbated by the fact that traditional means of knowledge dissemination are inaccessible to non-academic audiences, hampering meaningful dialogue with and research uptake by the broader community.
Our arts-based knowledge translation project, , brought together neuroscientists, people with Parkinson's disease or dementia, care partners and artists (musicians, dancers, circus acrobats) to co-create 2 multi-media performances based on scientific research and lived experience. We investigated whether the resulting interdisciplinary, multimedia performances could (1) challenge misperceptions around Parkinson's/dementia; and (2) render neuroscientific research accessible to a diverse audience. Prior to and immediately following virtual screenings of the feature-length Parkinson's and Dementia filmed performances, audience members were invited to complete pre-post questionnaires comprised of demographic, Likert-scale and open-ended questions.
Responses indicated that both performances elicited strong emotional engagement and improved self-reported understanding and empathy towards individuals with Parkinson's and dementia. Based on a thematic analysis on open-ended questions, we consider the barriers and facilitators to the audience's receptiveness and discuss the performances' potential as a knowledge translation tool.
By presenting an emotionally engaging perspective on Parkinson's and dementia, acts as an important complement to text-based knowledge dissemination in health research.
疾病的主观体验常常被健康研究中对疾病与治疗的关注所掩盖，这加剧了帕金森病和痴呆症等病症的污名化。非学术受众无法获取传统知识传播方式，这一事实进一步加剧了这种情况，阻碍了与更广泛社区进行有意义的对话以及他们对研究成果的接受。
我们基于艺术的知识转化项目，将神经科学家、帕金森病或痴呆症患者、护理伙伴以及艺术家（音乐家、舞者、马戏杂技演员）聚集在一起，根据科学研究和生活经验共同创作了两场多媒体表演。我们调查了由此产生的跨学科多媒体表演是否能够（1）挑战对帕金森病/痴呆症的误解；（2）使神经科学研究能够被不同的受众理解。在对长达 帕金森病与痴呆症 的电影表演进行虚拟放映之前和之后，邀请观众完成由人口统计学、李克特量表和开放式问题组成的前后调查问卷。
反馈表明，两场表演都引发了强烈的情感共鸣，并提高了自我报告的对帕金森病和痴呆症患者的理解和同理心。基于对开放式问题的主题分析，我们考虑了影响观众接受度的障碍和促进因素，并讨论了表演作为知识转化工具的潜力。
通过呈现关于帕金森病和痴呆症的情感丰富的视角， 作为健康研究中基于文本的知识传播的重要补充。
