Asthma is the leading chronic disease of childhood, is increasingly prevalent among adults, and is the cause of much disruption, discomfort, and, sometimes death. The social networking site Facebook currently has over 400 million active members, and is used by patients, their families, and organizations to share, promote and engage others in discussions of asthma-related topics. These discussions are unmonitored and have not been examined previously, resulting in concern about the kinds of information shared among patients and families on social networking sites. The purpose of this study was to describe the content and use of publicly-available asthma-related interest groups on Facebook.      

Data Source

The University of Michigan Institutional Review Board determined this study was observation of public behavior and therefore exempt from approval. We conducted a search of Facebook common interest groups using “asthma” as the keyword. Groups are member-generated and “wall” posts are comprised of questions and answers or statements on a topic. Data for this study was extracted from five asthma-related interest groups with the largest memberships active between April 2009 and January 2010. We examined every “wall” post for the months of April, July, and October 2009, as well as January 2010.  

Data Analysis

Two coders applied initial codes, which were organized through an iterative and comparative process into related sets of thematic categories and subcategories. We classified all posts by general purpose (e.g. asking a question, marketing a product, disclosing a personal story etc.) as well as specific topic area. Simple proportions were calculated to describe posts in each category. Results of the analysis incorporated quotes selected from wall postings as illustrations of identified categories. 

sAsthma Management and Self-Disclosure: acebook Style Christy R. Houle, Ph.D., M.P.H. and Melissa A. Valerio, Ph.D., M.P.H.

Center for Managing Chronic Disease, University of Michigan

Logo

BACKGROUND RESULTSTABLE 2: Wall post quotes illustrative of identified categories

Alternative approaches to treating asthma

 “ATTENTION: Following these steps, your asthma will go away just like me… 1) Drink a cup of hot tea before going to bed, and drink about 8 cups of water everyday 2) Stay away, and I mean really stay away from anything that’s greasy like bacon. Stay away from McDonald’s etc. 3) Do not stay up late, sleep early and get up early… 4) Exercises… I used to use my inhaler everyday, but now I rarely use it” “Discover how to cure chronic, ‘incurable’ diseases like asthma, diabetes and cancer with his proven Water Protocol! Come join our free Study Group…”

Prescribed treatment regimens/health care  “I don’t know what they did to inhalers here in America, but geez man, they don’t work like the old ones. I send someone to Mexico for me once a year to stock up on the old style albuterol inhalers. If you have the same issue with the new inhalers, get them from Mexico. They’re cheaper and better.” “Help, is this safe? I’m 17 years old and I’ve had asthma practically all my life. My medications have increased over the years. I went from just using relievers to using other medication then Advair then Symbicort, but yesterday my doctor increased my dose to 400/12 without telling me why. But I looked it up and its not recommended for people under 18. I’m really worried about this. Is it safe? I’m not sure she knew what she was doing.” Information source“I have just created a Facebook group for the Allergy & Asthma Nework Mothers of Asthmatics, the leading nonprofit family health organization dedicated to eliminating suffering and death due to asthma, allergies and related conditions. If you or a loved one has asthma, we’d love for you to join our group…”

Asthma-related death/need for more awareness“In 1998, I didn’t realize people could die from asthma. My only sister died suddenly at the age of 20. Please don’t ignore the early signs of an attack…”

Disclosure/Social Support“Hi I have very severe asthma I [have] been in and out of the hospital all my life. And the Dr. is always trying something new on me. Anything to stay out of the hospital. Now he wants me to be tested for IGE. And then to get some kind of injection. I’ll try anything at this point. I really need some kind of moral support.”

Disclosure “Hello, my daughter has gone from exercise-induced asthma to full blown asthma. She just spent over a week in the pediatric ward of the hospital trying to get her asthma well enough to come home and we have her back in the ER every day since. She loves to sing and play her flute and trombone and has been told she can’t do that for awhile, this has her very upset and I feel helpless to help her!” 

 

RESULTS

CONCLUSION

METHODS

RESULTS

A total of 598 wall posts were assessed. Each post was categorized into one or more of ten categories summarized in Table 1.

TABLE 3. Products and approaches purported to treat or cure asthma on Facebook

Clinicians and researchers should be aware of the use of online social networking sites such as Facebook by asthma patients and their families in management of asthma.

Although Facebook may provide a new platform for patients and families to share asthma-related experiences and gain emotional support, users may not be able to judge the accuracy and quality of information posted resulting in the need for clarification by clinicians. Given the quality of the statements a most vulnerable patient population may be those with inadequate health literacy.

 

Results suggest a substantial level of interest in and marketing of alternative therapies to treat asthma by group members.

Posts generated by the group members included vague comments and often contained inaccurate information.

Findings highlight potential gaps in understanding of asthma care and point to opportunities for patient education and counseling (e.g., safety, cost and use of medicines; etiology of asthma).