This is an independently conducted qualitative research study which provides a content analysis of the conversations patients have on rheumatoid arthritis-specific Facebook groups. It was inspired by my experiences as a patient participating in rheumatoid arthritis-specific Facebook groups and noticing that there were recurring themes. The data revealed that people use these groups to share their personal stories, provide and gain personal support, and share advice/ideas about how to perform activities of daily living with the least amount of pain possible. These conversations are mostly about instrumental activities of daily living, in particular health management & maintenance. In order to objectively assess the communication content, my friend and colleague Kristin Jones and I performed the data analysis seen below in the “data overview” section. We are now brainstorming practical applications for this research – stay tuned for more! - Cheryl Crow, OTR/L

1. • Discussions on these sites are relevant to Occupational
Therapy’s unique area of expertise, particularly in the areas of:
• IADLs
• Psychosocial/Mental Health issues
• Adaptive Equipment/Activity Modification
• Role of Healthcare Providers
• Participating in these forums may allow rheumatology health
professionals gain meaningful insights about the lived experience of
these diseases.
• The fact that health management and daily living strategies are
discussed so frequently suggests they may not be covered
adequately elsewhere.
FROM SOCIAL SUPPORTTO INFORMATION SHARING: HOW ARE PERSONS WITH RHEUMATOID
ARTHRITIS USING DISEASE-SPECIFIC FACEBOOK COMMUNITIES: A CONTENT ANALYSIS
Cheryl Crow, MOT, OTR/L Kristin Jones, MOT, OTR/L
INTRODUCTION
OBJECTIVES
CONCLUSIONS
HIGHLIGHTED FINDINGSRESULTS
Social participation is an important area of occupation. High perceived social
support is associated with lower disease activity and better quality of life for
persons with rheumatoid arthritis (Nicassio, 2011 and Curtis et al, 2004), yet
pain and fatigue can lead to social isolation.
Social media has recently emerged as an accessible platform for social
participation. Disease-specific Facebook communities have become thriving
forums for information sharing and social support for persons with chronic
health conditions such as rheumatoid arthritis. However, little is understood
about the content of patient engagement on this medium.
1: Examine and categorize the content of social media communication within
patient driven Facebook communities devoted to rheumatoid arthritis.
2: Determine the relationship between communication content and
occupational therapy’s domain.
3: Articulate the potential ways health professionals can address the role
social media groups play in a client’s occupational profile.
METHODS
• The majority of posts served to provide information or support
• 73% of the posts were coded as “providing information:”
• 44% Providing information: Personal story
• 29% Providing information: Advice
• 20% of the posts served to “provide support”
• Instrumental Activities of Daily Living (IADLs) constituted the
most frequently discussed topic
• 65% of Personal Story content related to IADLs
• 55% of Advice content related to IADLs
• IADLs include: Health management & maintenance, home
establishment and maintenance, care of children and others,
financial management, meal preparation, community mobility
• Health Management & Maintenance was the most frequently
discussed IADL
• Participants most often shared stories about their pain
management (33%) and medication management (28%)
• Participants most often gave advice about alternative
approaches (28%) and self-advocacy and education (25%)
• Participants freely exchanged detailed personal health information
• American Occupational Therapy Association. (2008). Occupational Therapy Practice Framework:
Domain and Process, 2nd Edition. American Journal of OccupationalTherapy, 62, 625-683.
• Curtis, R., Groarke, A., Coughlan, R., & Gsel, A. (2004).The influence of disease severity, perceived
stress, social support and coping in patients with chronic illness: a 1 year follow up. Psychology,
Health & Medicine, Nov 9(4), 456-475.
• Greene, J.A., Choudhry, N.K., Kilabuk, E. & Shrank,W.H. (2010). Online social networking by
patients with diabetes: a qualitative evaluation of communication with Facebook. Journal of
General Internal Medicine, March 26(3), 287-92.
• Nicassio, P.M. et al. (2011).An evaluation of biopsychosocial framework for health-related quality
of life and disability in rheumatoid arthritis. Journal of Psychosomatic Research, August 71(2), 79
85.
• Denise Chisholm, University of Pittsburg, is acknowledged for her mentorship and guidance
• The Facebook Group Administrators are acknowledged for their role in creating social media
communities for persons with RA.
REFERENCES & ACKNOWLEDGEMENTS
Pain Management:
- “I don't remember what it feels like to not have pain- it and becomes a little like living near train tracks, the
noise is there but you stop noticing it as much and it just mergers into the background“
Medication Management:
- “I was reluctant to take pain meds at first until I realized it was a quality of life issue. I wasn't doing myself or
the people around me any good when all of my attention was going to dealing with the pain.”
Personal Health Details and Provider Relationship:
- “It's been hell since moving and not so sure about the new Rheumy...1st change since diagnosis 16 years ago.
Are standard x-rays reliable diagnostic tools and shouldn't a CRP lab test always be done? 1st time I've not
had the CRP on lab requests. Confused & feeling like I have to battle with docs who are supposed to help.”
Alternative Approaches:
- “(I’ve found) ways to de-stress now, take my meds and cut back on gluten - I'm thankful to work in the yoga
industry so can incorporate this into my life as well as understand the business I'm in. My advice is listen to
yourself and take care of yourself.
Activity Pacing and Rest:
- “I get a lot of rest and try to keep stress to a all time low.“
Alternative Approaches :
-“As someone earlier said, really pay attention to your diet. Cut out greasy, sugary and over processed foods.”
- “Keep trying different treatments, like eliminating anything in your diet that is inflammatory.”
Self Education & Advocacy:
- “Be your own advocate. Keep track of your symptoms so you can give your dr exact details, not just “I hurt".
- “You have to take responsibility for your health care and be your own best advocate. Educate yourself and
ask lots of questions and get second opinions if necessary.”
Provider Relationship:
-“If your Dr isn't listening to you, find another!You need a Dr who is an advocate for your health!"
- “Find a Rheumatologist that listens to you, one that can work ’with you’ in order that you become an active
participant in your own care!”
Pain Management:
- “Take advantage of pain free days when you have them. Push through the pain when you can, and rest when
you can't.”
Medication Management:
- “Go on Biologics like Enbrel. Don't fool your self that you can stop or handle R.A. using alternative methods.
They help, but by the time they kick in your joints will be damaged.”
DATA OVERVIEW
ADVICE SUBCATEGORIES PERSONAL STORY SUBCATEGORIES
IADL:Home
Establishment
&
Maintenance
9%
Work
5%
SocialParticipation
3%
OtherAreas of
Occupation
5%
General
Psychological/
MentalHealth
10%
AdaptiveEquipment/
ActivityModification
12%
IADL:Health
Management&
Maintenance
56%
HEALTH MANAGEMENT ADVICE HEALTH MANAGEMENT PERSONAL STORY
EXAMPLES: Health Management Personal StoriesEXAMPLES: Health Management Advice
IADL:Health
Management&
Maintenance
48%
IADL:
Home
Establish-
ment&
Maintenance
7%
Work
3%
Social
Participation
6%
OtherAreas
of Occupation
4%
General
Psychological/Mental
Health
23%
Adaptive
Equipment/
Activity
Modification
9%
Support:
Positive
20% Support:
Negative
1%
Providing
Information:
PersonalStory
44%
Providing
Information:
Advice
29%
Requesting
Information
4%
Irrelevant
2%
• Identified the top four most populous patient-driven Facebook communities
devoted to individuals with rheumatoid arthritis:
•RA Chicks: Women with Rheumatoid Arthritis
(13,555 followers*)
•Rheumatoid Arthritis Guy (8,129 followers*)
•Rheumatoid ArthritisWarrior (22,313
followers*)
•Creaky Joints (24,825 followers *)
•Text from10 sequential wall posts from May-June 2013 by each Facebook
community and ensuing discussions were aggregated into a database.
• Content was thematically coded by two occupational therapists, who came
to agreement on thematic codes. Multiple codes were allowed for each post.
Thematic codes were analyzed via MATLAB.
•Providing Information: Personal Story and Advice were found to be
predominant themes. Content within “providing information” was further
categorized into subcategories, and the “Health Management & Maintenance”
was also further subcategorized. Results were analyzed via MATLAB.
* as of 6/10/2013
Total posts coded: 1,066
Stepping Stones OccupationalTherapy, Bellevue,WA Outpatient PhysicalTherapy, Kent,WA
Provider
Relationship
16%
Rest & Activity
Pacing
9%
Alternative
Approaches
(nutrition,
exercise,yoga,
stress
management)
28%
Self Advocacy &
Education
25%
Personal
Health Details
3%
Medication
Management
10%
Pain
Management
10%
Provider
Relationship
6%
Rest and
Activity Pacing
2%
Alternative
Approaches
(nutrition,
exercise, yoga,
stress
management)
8%
Self
Advocacy
3%
Personal Health
Details
20%
Medication
Management
28%
Pain
Management
33%