Asthma Management and Self-Disclosure:        acebook Style  
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BACKGROUND
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.
 
 
METHODS
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.
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
RESULTS RESULTS RESULTS
TABLE 2: Wall post quotes illustrative of identified categories  TABLE 3. Products and approaches purported to treat or 
A total of 598 wall posts were assessed. Each post was cure asthma on Facebook
Alternative approaches to treating asthma
categorized into one or more of ten categories summarized in
 “ATTENTION: Following these steps, your asthma will go away just like me… 1)
Table 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 Results suggest a substantial level of interest in and marketing of alternative
using other medication then Advair then Symbicort, but yesterday my doctor therapies to treat asthma by group members.
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 Posts generated by the group members included vague comments and often
not sure she knew what she was doing.” contained inaccurate information.
Information source Findings highlight potential gaps in understanding of asthma care and point to
“I have just created a Facebook group for the Allergy & Asthma Nework Mothers opportunities for patient education and counseling (e.g., safety, cost and use of
of Asthmatics, the leading nonprofit family health organization dedicated to medicines; etiology of asthma).
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…”
CONCLUSION
Disclosure/Social Support
“Hi I have very severe asthma I [have] been in and out of the hospital all my life. Clinicians and researchers should be aware of the use of online social
And the Dr. is always trying something new on me. Anything to stay out of the networking sites such as Facebook by asthma patients and their families in
hospital. Now he wants me to be tested for IGE. And then to get some kind of management of asthma.
injection. I’ll try anything at this point. I really need some kind of moral support.”
Although Facebook may provide a new platform for patients and families to
Disclosure share asthma-related experiences and gain emotional support, users may
 “Hello, my daughter has gone from exercise-induced asthma to full blown not be able to judge the accuracy and quality of information posted resulting
asthma. She just spent over a week in the pediatric ward of the hospital trying to in the need for clarification by clinicians. Given the quality of the statements
get her asthma well enough to come home and we have her back in the ER every a most vulnerable patient population may be those with inadequate health
day since. She loves to sing and play her flute and trombone and has been told literacy.
she can’t do that for awhile, this has her very upset and I feel helpless to help
her!”