Content Analysis of a Congenital Cataract Social Media Support Group.

PURPOSE: Social networking sites are an increasingly popular source of health information and a natural place for connection and support among patients and their loved ones. This study analyzes the content of a Facebook support group for congenital cataracts to understand the concerns, informational needs, and support-seeking behaviors in this community.

METHODS

A qualitative evaluation was conducted on the Facebook group Children with Congenital Cataracts, the largest group for congenital cataracts on the platform. The most recent 150 discussion posts were selected for review. Posts were categorized into one of 5 themes: surgery, contact lens, disease related, tips/advice, and miscellaneous. Additional information recorded included the identity of the post's author (caregiver/patient) and level of engagement. Two investigators reviewed the posts.

RESULTS

The majority of posters were mothers of children with congenital cataracts (142/150 or 94.67%), with two posts from adults with the condition. The average number of replies per post was 9 (range: 0-63). Posts with image attachments had more engagement in terms of reactions obtained compared to posts without images (p = <0.001). The majority of posts were questions, followed by news sharing. Discussion post topics fell under the following categories: tips/advice, surgery related, contact lens related, miscellaneous, and disease related. The most common topics within each category were questions regarding surgical complications (n=12, 8%), inserting and removing (usage of) contact lens (n=12, 8%), etiology of disease (n=3, 2%), and advice on patching (n=13, 8.67%) and glasses (n=13, 8.67%).

CONCLUSION

Awareness of the community and knowledge sharing in the online social space is important for pediatric cataract surgeons. Understanding parental knowledge gaps can help healthcare providers address concerns and improve patient education strategies. Community-driven resources, such as unused contact lens resale, highlight impressive grassroots efforts to assist in care.