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

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.

Keywords:

• Parkinson’s disease
• public education
• social media

Acknowledgments

We would like to thank the Chulalongkorn University Communication Arts Alumni Association, volunteers, PwP, advertising agencies, and caregivers who took part in the campaign for their tireless contribution and continued support.

Disclosure

Dr. Onanong Phokaewvarangkul has Intellectual Property rights for a portable tremor detection and suppression device and has received grants from the Thailand Research Fund and the Neurological Society of Thailand. Dr. Pattamon Panyakaew has received grants from Rachadapiseksomphot Endowment Fund and Chulalongkorn Academic Advancement Fund into Its 2^nd Century Project of Chulalongkorn University. Dr. Jirada Sringean has Intellectual Property rights for NIGHT-Recorder^® and has received grants from Rachadapiseksomphot Endowment Fund. Dr. Roongroj Bhidayasiri has Intellectual Property rights for Parkinson’s laser cane, Tremor diagnostic algorithm, and NIGHT-Recorder^®, received honoraria from Boehringer-Ingelheim, Novartis, BL-Hua, Abbott, Ipsen, and Britannia pharmaceuticals, receives royalties from Wiley-Blackwell and Humana Press and has received grants from the Newton Fund-UK, the International Research Network grant of the Thailand Research Fund, Chulalongkorn Academic Advancement Fund into Its 2^nd Century Project of Chulalongkorn University, Center of Excellence grant of Chulalongkorn University, and Grant for International Research Integration, Chula Research Scholar and Rachadapiseksomphot Endowment Fund. The authors report no other potential conflicts of interest for this work.

Additional information

Funding

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).