Asthma Management and Self-Disclosure: Facebook 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

1. Asthma Management and Self-Disclosure:
s acebook Style Logo
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
BACKGROUND RESULTS RESULTS RESULTS
TABLE 2: Wall post quotes illustrative of identified categories TABLE 3. Products and approaches purported to treat or
Asthma is the leading chronic disease of childhood, is increasingly A total of 598 wall posts were assessed. Each post was cure asthma on Facebook
prevalent among adults, and is the cause of much disruption, Alternative approaches to treating asthma
categorized into one or more of ten categories summarized in
discomfort, and, sometimes death. The social networking site “ATTENTION: Following these steps, your asthma will go away just like me… 1)
Table 1. Alfalfa Saline nasal spray
Facebook currently has over 400 million active members, and is used Drink a cup of hot tea before going to bed, and drink about 8 cups of water
Magnesium Fruit juices
everyday 2) Stay away, and I mean really stay away from anything that‟s greasy
by patients, their families, and organizations to share, promote and like bacon. Stay away from McDonald‟s etc. 3) Do not stay up late, sleep early
Aloe Vera Salt water
engage others in discussions of asthma-related topics. These “Native Remedies” Garlic
and get up early… 4) Exercises… I used to use my inhaler everyday, but now I
Buteyko breathing method “Sunrise”
discussions are unmonitored and have not been examined previously, rarely use it”
“Nitro FX” Ginger
resulting in concern about the kinds of information shared among Caffeine Tea
patients and families on social networking sites. The purpose of this “Discover how to cure chronic, „incurable‟ diseases like asthma, diabetes and
Olive oil Goji berries
cancer with his proven Water Protocol! Come join our free Study Group…”
study was to describe the content and use of publicly-available Calcium Tree bark
asthma-related interest groups on Facebook. Prayer Honey
Prescribed treatment regimens/health care Cold water Umbilical cord stem cells
“I don‟t know what they did to inhalers here in America, but geez man, they don‟t Raw fruits and vegetables Hot water
work like the old ones. I send someone to Mexico for me once a year to stock up Didgeridoo Vicks
on the old style albuterol inhalers. If you have the same issue with the new “Salt Chalet” “Vemma”
inhalers, get them from Mexico. They‟re cheaper and better.”
METHODS Fatty acids
“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.
Data Source 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
The University of Michigan Institutional Review Board determined this not sure she knew what she was doing.” contained inaccurate information.
study was observation of public behavior and therefore exempt from
approval. We conducted a search of Facebook common interest 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
groups using “asthma” as the keyword. Groups are member-generated of Asthmatics, the leading nonprofit family health organization dedicated to medicines; etiology of asthma).
and “wall” posts are comprised of questions and answers or eliminating suffering and death due to asthma, allergies and related conditions. If
statements on a topic. Data for this study was extracted from five you or a loved one has asthma, we‟d love for you to join our group…”
asthma-related interest groups with the largest memberships active
between April 2009 and January 2010. We examined every “wall” post Asthma-related death/need for more awareness
for the months of April, July, and October 2009, as well as January
“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
2010.
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
Data Analysis
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.”
Two coders applied initial codes, which were organized through an Although Facebook may provide a new platform for patients and families to
iterative and comparative process into related sets of thematic Disclosure share asthma-related experiences and gain emotional support, users may
categories and subcategories. We classified all posts by general “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 a
purpose (e.g. asking a question, marketing a product, disclosing a
get her asthma well enough to come home and we have her back in the ER every most vulnerable patient population may be those with inadequate health
personal story etc.) as well as specific topic area. Simple proportions day since. She loves to sing and play her flute and trombone and has been told literacy.
were calculated to describe posts in each category. Results of the she can‟t do that for awhile, this has her very upset and I feel helpless to help
analysis incorporated quotes selected from wall postings as her!”
illustrations of identified categories.