A Study of the Facebook Phenomenon and the Ostomy Community

Social media is changing the way people communicate. As of June 2016, Facebook (FB) had 1.71 billion monthly users. [1]As the general public embraces social media, the healthcare community must as well. Ostomy patients are increasingly using social media as part of their disease management. Ostomy clinicians have an obligation to be current on all community resources available to the public.

The purpose of this descriptive study was to discover who the users are in FB ostomy groups and common themes. Subsequently ostomy clinicians can learn what the current needs are of the ostomy community and take this information back to improve practice.

Data was collected by observation of members’ posts and sorted into 17 topics. A search using the keyword “ostomy” was performed in the FB search bar. The search was narrowed to the 7 largest ostomy groups comprising 48,238 members. Observation of all threads for one month was conducted.

A quantitative descriptive research study was conducted using the 7 largest FB ostomy groups. Statistical analysis was limited to descriptive statistics to demonstrate age frequency distribution and identification of themes.

Fifty ostomy groups were discovered on FB with 26 closed (private) groups totaling 48,238 members. The age demographic of 147 users showed 16% aged 15-35, 62% were 36-55 years old, and 22% were 56 and older. Nine themes emerged from 227 discussion threads; activities of daily living, emotions, output, comedy, peristomal skin problems, food, illness, supplies, and surgical issues. Expressing feeling was the most prevalent topic followed by peristomal skin problems.  

Members of social media demonstrate empathy, compassion, and courage in sharing their experiences and knowledge. FB super users have organized meetings, fundraisers, lobbying events, built ostomy pantries, and provided supply exchanges. Ostomy clinicians need be aware of how social media can be used to improve patient care.