Endometriosis Influencers on Instagram: Who Are They and What Are They Posting?
This study examines endometriosis-related content on Instagram to understand the identity of content creators, themes, tones, emotions, and the accuracy of educational posts. The analysis of 768 posts and 228 accounts revealed that most content (59.9% of posts and 92.1% of accounts) was endometriosis-related, with the majority authored by individuals with endometriosis (55.4% of posts, 59% of accounts). These accounts were more active and had significantly more followers than those of healthcare providers.
Key findings include:
Themes: Social support (67.2%) and personal narratives (47.6%) were the most common themes, followed by education (31.3%), empowerment (21.1%), and advertisements (9.6%).
Tone and Emotions: Posts often had a negative tone (43.7%) and evoked sadness (57.6%), reflecting the emotional burden of endometriosis. Compassion was also frequently conveyed (50.2%).
Accuracy: Educational posts by healthcare providers were more accurate (85% of objective posts were correct), but their presence was limited. Allied healthcare providers contributed the most accurate educational content.
Engagement: Posts by allied healthcare providers received the highest average likes, though not statistically significant.
The study highlights Instagram as a platform where individuals with endometriosis share experiences and seek support, while healthcare providers have an opportunity to engage empathetically and provide accurate information. The findings emphasize the need for healthcare professionals to increase their presence on social media to bridge information gaps, improve patient-physician relationships, and enhance patient outcomes.
The study also notes limitations, such as its cross-sectional design and exclusion of private accounts and Instagram Stories. Future research should explore the long-term impact of healthcare provider engagement on social media.
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