The Narrative Research Of Rare Disease Documentary

Rare diseases are not only a worldwide medical problem,but also a major public health problem shared globally.In recent years,China’s multi-sectoral efforts to promote the development of rare diseases in China have opened up new horizons.Documentaries have the function of recording social phenomena and reflecting social problems,and focusing on rare disease groups can effectively reflect their current living conditions and survival difficulties.At present,the number of documentary works on rare diseases at home and abroad is small and the impact is low,and there is a lack of research results in this field in academia.Based on this,this paper takes rare disease documentaries as the research object,and under the theoretical view of narratology,uses literature review method and case study method to sort out and analyze the rare disease documentaries at home and abroad in recent years,and examines the narrative ethics and narrative strategies in the creation of this type of documentaries,expecting to provide useful ideas for the further development of rare disease documentaries.Firstly,this paper analyzes the characteristics of rare disease documentaries on the basis of clarifying the concept of rare disease documentaries,and the special nature of rare disease patients determines that these documentaries are limited in the choice of subjects,contents and time and space.Secondly,based on the theory of narrative ethics,the ethical consciousness of the creative subjects in the whole process of filming rare disease documentaries is clarified,the ethical relationship between the subjects of rare disease documentaries is explored,and the ethical principles that the creators should abide by when intervening in the daily lives of rare disease groups are summarized.The study finds that the ethical problems of"exchange of interests" and "choice of presentation" between the creators and the filmed subjects in the process of filming rare disease documentaries may be caused by the interests generated by commercial traffic or social assistance,thus causing the video works to fall into The ethical dilemma of documentary works on rare diseases is investigated in three aspects:narrative point of view,narrative structure,and narrative space,using the theory of narrative.The choice of different narrative viewpoints and narrative structures by the creators of rare disease documentaries affects the final style and visual effect of the presented works.The presentation of multi-dimensional narrative space enriches the meaning of the mentioned story in three levels:material,psychological and social.Finally,we analyze the narrative strategy and narrative ethics during the creation of the graduation work "Under the Glacier",and summarize and reflect on the creation of rare disease documentaries based on practical creation experience.In the process of filming rare disease documentaries,it is important to pay attention to the boundaries of interviewing the subjects and to avoid deliberately guiding the subjects as much as possible,so as to avoid stereotyping the characters and presenting one-sided video works.