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      If Your Patients Were Too Embarrassed to Go Out in Public, What Would You Do? – Public Education to Break the Stigma on Parkinson’s Disease Using Integrated Media

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          Abstract

          Purpose

          People with Parkinson’s (PwP) often feel stigmatized, especially when their symptoms are visually prominent. In some countries, public awareness of Parkinson’s disease can be minimal, leading to social challenges for PwP.

          Patients and Methods

          A public educational campaign using videos (VDO) showing 5 PwP in different social situations that their symptoms could be a source of inconvenience to others were launched on Facebook (FB) and television (TV). We describe the process and report the impact of the campaign on patients and the public. Number of shares and likes and the first 100 comments on FB were analyzed.

          Results

          There were almost 1 million views, 680,000 likes, and 256,000 shares in the Center’s and popular Facebook Pages within 24 hours, subsequently reaching 4.4 million views, 138,000 likes, and 78,000 shares. Patients reported changed behavior and demeanor by the public towards them. The public’s comments ranged from stating that they have seen PwP without knowing what it was to requests for more information about PD to thanks for the informative VDO. People also shared their experiences with PwP.

          Conclusion

          The campaign was impactful in creating awareness about PD. Creating appealing content with appropriate video length and collaborating with community groups that have relevant skills can help in creating and disseminating an educational video which creates a significant impact on society as a whole. This can be emulated to educate the public about other diseases.

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          Most cited references7

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          Knowledge, attitudes and perceptions of Parkinson's disease: A cross-sectional survey of Asian patients.

          A knowledge gap about Parkinson's disease (PD) often exists amongst PD patients, the level and accuracy of which can influence their attitude and perceptions about the disease. Increased awareness of this information deficit can help physicians identify interventions that will improve patient's knowledge and perceptions about PD.
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            Dry facts are not always inviting: a content analysis of Korean videos regarding Parkinson’s disease on YouTube

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              Qualitative analysis of Parkinson’s disease information on social media: the case of YouTube™

              Introduction There is a paucity of data pertaining to the usefulness of information presented on social media platforms on chronic neuropsychiatric conditions such as Parkinson’s disease (PD). The aim of this study was to examine the quality of YouTube™ videos that deliver general information on PD and the availability and design of instructional videos addressing the caregiving role in PD. Methods YouTube™ was searched using the keyword “Parkinson’s disease” for relevant videos. Videos were assessed for usefulness and accuracy based on pre-defined criteria. Data on video characteristics including total viewership, duration, ratings, and source of videos were collated. Instructional PD videos that addressed the role of caregivers were examined closely for the design and scope of instructional content. Results A total of 100 videos met the inclusion criteria. Just under a third of videos (28%) was uploaded by trusted academic organisations. Overall, 15% of PD videos were found to be somewhat useful and only 4% were assessed as providing very useful PD information; 3% of surveyed videos were misleading. The mean number of video views (regardless of video source) was not significantly different between the different video ratings ( p  = 0.86). Although personal videos trended towards being less useful than videos from academic organisations, this association was not statistically significant ( p  = 0.13). Conclusion To our knowledge, this is the first study to assess the usefulness of PD information on the largest video-sharing website, YouTube™. In general, the overall quality of information presented in the videos screened was mediocre. Viewership of accurate vs. misleading information was, however, very similar. Therefore, healthcare providers should direct PD patients and their families to the resources that provide reliable and accurate information.
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                Author and article information

                Journal
                Patient Relat Outcome Meas
                Patient Relat Outcome Meas
                prom
                prom
                Patient Related Outcome Measures
                Dove
                1179-271X
                12 August 2020
                2020
                : 11
                : 143-148
                Affiliations
                [1 ]Chulalongkorn Centre of Excellence for Parkinson’s Disease and Related Disorders, Department of Medicine, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society , Bangkok, Thailand
                [2 ]Chulalongkorn Parkinson’s Disease Support Group, Chulalongkorn Centre of Excellence for Parkinson’s Disease and Related Disorders, Department of Medicine, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society , Bangkok, Thailand
                [3 ]Chulalongkorn University Communication Arts Alumni Association, Faculty of Communication Arts, Chulalongkorn University , Bangkok, Thailand
                Author notes
                Correspondence: Priya JagotaChulalongkorn Centre of Excellence for Parkinson’s Disease and Related Disorders, Department of Medicine, Faculty of Medicine, Chulalongkorn University and King Chulalongkorn Memorial Hospital, Thai Red Cross Society , 1873 Rama 4 Road, Bangkok10330, ThailandTel +662 256-4000 ext. 70701Fax +662 256-4630 Email pja@chulapd.org
                Author information
                http://orcid.org/0000-0002-4686-1311
                http://orcid.org/0000-0002-6901-2064
                Article
                243990
                10.2147/PROM.S243990
                7429227
                32848490
                f2b4acf7-ca4c-4f5a-9e2b-0ae4807809c8
                © 2020 Jagota et al.

                This work is published and licensed by Dove Medical Press Limited. The full terms of this license are available at https://www.dovepress.com/terms.php and incorporate the Creative Commons Attribution – Non Commercial (unported, v3.0) License ( http://creativecommons.org/licenses/by-nc/3.0/). By accessing the work you hereby accept the Terms. Non-commercial uses of the work are permitted without any further permission from Dove Medical Press Limited, provided the work is properly attributed. For permission for commercial use of this work, please see paragraphs 4.2 and 5 of our Terms ( https://www.dovepress.com/terms.php).

                History
                : 28 December 2019
                : 14 July 2020
                Page count
                Figures: 1, Tables: 3, References: 7, Pages: 6
                Funding
                Funded by: International Research Network;
                Part of this campaign was supported by the International Research Network grant (IRN59W0005) of the Thailand Research Fund, Chulalongkorn Academic Advancement Fund into its 2 nd Century Project of Chulalongkorn University (2300042200) and Center of Excellence grant of Chulalongkorn University (GCE 6100930004-1).
                Categories
                Original Research

                Medicine
                parkinson’s disease,public education,social media
                Medicine
                parkinson’s disease, public education, social media

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