Background/Purpose

During Lupus Awareness Month, Lupus Foundation of America conducted several social media-specific activities, including sharing facts with the end goal of increasing health knowledge in people with lupus, their friends and family. Topics ranged from lupus in different organ systems to coping strategies.

This abstract will evaluate social media as a means for engaging individuals in their health through Facebook conversation (thread) about mild cognitive dysfunction. We expect that individuals who responded at higher levels of engagement have the tools to better manage this aspect of lupus. More than 80% of patients with lupus present subjective complaints of cognitive difficulties (Wallace, 2013) and symptoms include feelings of confusion and memory loss. The causes are unknown.

Engagement is an indicator that links social media to action. Levels range from low (showing a preference) to medium (creating & sharing content) to high (engaging in offline events) (Neiger et al., 2012). Patients who are highly activated in their health are more likely to report higher quality of life & satisfaction with care (Mosen et al., 2007) and may show an increase in improved health behaviors (Hibbard et al., 2007).

Methods

Comments in the thread were collected and sorted into broad themes, assigning one or more theme to each comment. The thematic analysis yielded the following categories: validation, sharing experience/advice and increased knowledge.  

Engagement actions, including number of likes, comments and shares, were obtained through Facebook Insights and categorized as low, medium or high levels.

Results

The thread resulted in 336 comments over the span of six days. 284(84%) comments were on-topic. Examples of statements of validation include “Thank you for addressing this…It’s frustrating, embarrassing at times but now I know I am not alone.” A characteristic response of increased knowledge was “I attributed it to my medications. I’ll pay more attention now to see if it worsens.”

Table 1: Thematic Analysis

Overall, the post reached 326,528 people. 263,808 (80%) people saw the post through others’ engagement actions. Levels of engagement are listed in Table 2. 

Table 2: Engagement Actions

Conclusion

Results suggest that in addition to being an effective platform for health promotion and education, social media may also serve as an informal support system by providing validation of experiences and symptoms. Future studies will target specific health behaviors, measure outcomes of interest through pre and post testing, and potentially include an off-line component to promote high level of engagement.