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

Abstract

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 BParkinson'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.

YouTube as a resource for evaluating the unmet needs of caregivers of stroke survivors

“…The findings of Al-Busaidi et al 40 were also consistent with our results, in which caregiver strain was a major factor. ‘Emotional and Psychological’ unmet needs were reported 43 times in 27 videos, with the highest subcategory as ‘Help Dealing with Own Emotional Stress’.…”

“…In our search strategy, only 26 videos of 132 viewed (19.7%) featured content where caregivers of stroke survivors discussed their unmet needs and concerns. This percentage of relevant videos is much lower than in other fields of previous research using YouTube 41–43 and suggests that it is difficult to find content that specifically addresses the unmet needs of caregivers of stroke survivors, even when search terms that target this population are used.…”

Empowering Patients Living With Chronic Conditions Using Video as an Educational Tool: Scoping Review

“…It is important to bear in mind that YouTube or Vimeo have their own algorithm for classifying videos that are published, so that, despite efforts from professionals or institutions to generate quality videos, such videos may not reach the target public if they are not properly disseminated and other approaches are not used [ 12 ]. Given the lack of quality or patient-specific content on generalist platforms such as YouTube and Vimeo, the main role of the health professional should be that of content curator or link supplier, helping patients to select quality resources [ 13 , 14 ].…”

Findings in Chinese Patients With Parkinson's Disease: A Content Analysis From the SML Study

“…It has been used to investigate discussions on diverse diseases, including multiple sclerosis ( 10 ), dry eye disease ( 8 ), inflammatory bowel disease ( 11 ), and chronic obstructive pulmonary disease ( 6 ). Previous studies have evaluated and assessed the influence of Chinese video-based lectures about PD on YouTube™ ( 12 ). YouTube™, Facebook™, and Twitter™ are popular around the world but are not available in China.…”