Transcript Internet Health Support Groups

Internet Health Support Groups
Uses & Formats,
Benefits & Risks,
Facilitation, &
Research Approaches
Elizabeth A. Pector, M.D.
Naperville, Illinois, USA
www.synspectrum.com
User demographics
 Groups used for stressful health/personal situations, or
by caregivers: especially for embarrassing, rare, or
poorly characterized conditions, & with isolation.
 54% of U.S. Internet users seek health info or support.
(Pew Internet & American Life, 2003)
 70-90% of European & Japanese seek health info, of
whom 9-46% visit support/advocacy sites. (Harris
Interactive, 2002)
 Digital Divide exists, but can be “BRIDGED”:
• Birthdate (Pediatric and Geriatric studies)
• Race (Minorities with breast Ca, HIV, asthma, sickle
cell)
• Income (Breast Ca and HIV)
• Disability (General, CP, CF, cardiac, deaf, dialysis)
• Gender (Women send more health email. ? gender
differences in communication)
• Education (health-computer training easily learned)
• Deviancy (behavioral, physical, lifestyle)
Software Formats of Groups
Synchronous:
Multi-user domains (virtual environment, avatars)
Chat (internet relay, instant message)
Real-time meeting (psychotherapy, focus group,
audio- or video-conference, web telephony)
Asynchronous:
Listservs (subscription email groups)
Newsgroups (e.g. Usenet)
Message board/forum
List admin reviews all messages then sends via email
Patient-to-patient email
Comprehensive health support system: disease
education, FAQs, patient-professional Q&A, social
support, games (ComputerLink, CHESS, about.com,
Starbright World)
Health Support Website Model
Home Page
Site Directory
Search
Members + Visitors: welcome & clinical info
Members only: Communication center
Communication Center
Welcome to New Users
Clinical Info
Members Only
News, events calendar
Contests, games, quizzes, etc.
Disclaimer
Purpose/Mission Statement
Group history
Include disclaimers
Listserv Options
List Admin role & credentials
FAQs about Condition
Web-only
Individual email
Digest
Is membership restricted to patients only?
Group activity: # of members & monthly posts
Link to List Administrator
W ritten by members
with health professional input
Chat
Instant Message
Scheduled chat/focus group
Netiquette
Policies/Rules
Are clinicians or researchers welcomed?
Attitude toward off-topic posts
Crisis/terminal phase subgroup
Instructions to contact
local emergency care
Communication with similarly affected members
Member biogaphical statements
Member contact info: email, phone
Archives
Messages
Member Files & Photos
Poetry, art, etc.
Articles
(journal or lay press reprints)
Decision-making Tools
Consider user
equipment,
education, computer
literacy,
disability
Flow charts
Text discussion of options
Links to other sites
Optional:
E-mail Question & Answer Forum
with health professional
User guide to finding groups
 Websites or organizations dedicated to the disease or
situation
 Dr. Grohol’s resource list
http://www.psychcentral.com/resources
 American Self-Help Group Clearinghouse
http://www.selfhelpgroups.org/
 Open Directory Project (dmoz) Listing
http://dmoz.org/Health/Support_Groups/
 KUMC international genetics/other resources
http://www.kumc.edu/gec/support/grouporg.html#internat
 National Organization of Rare Diseases
http://www.rarediseases.org/search/orgsearch.html
 Cancer support groups http://www.acor.org
 Disabled children www.our-kids.org/okothersites.html
 About.com http://www.about.com
 Usenet http://www.google.com/googlegroups/help.html
 Yahoo Groups http:www.groups.yahoo.com
 Topica Groups http://www.topica.com
How online groups compare
to face-to-face groups
Both FTF & online:
Unique online:
 Sense of community
 Empathy & support
 Information & advice
exchange
 Shared experiences
 Self-disclosure
 Catharsis
 Learning from peers &
mentors
 Challenges to distorted
thinking (Limited)
 Helper role
 Leader role
 Advocacy
 Writing is therapeutic
 Lurkers: ≤75-95% of
members. They identify
with & learn from group
 Asynchronous
communication
 Anonymity:
• Filters nonverbal
cues
• Hides disturbing
personal traits
• Encourages rapid
intimacy, flames &
rants
• Enables deception
User Benefits
Subjective:
Objective:
 Convenient access
 Easier discussion of
sensitive & controversial
topics (sexuality, ethics,
atypical lifestyle, suicide,
end of life)
 Decreased isolation
 Increased perceived
social support
 Better support if realworld significant others
are online with patient
 Practical help received
 Ability to help others
 Less health care
utilization in back pain
 Successful weight loss &
maintenance
 Better diabetic control
 Improved depression
 Better pain scores &
mental health in breast
Ca patients
 Improved socialization
(e.g., among ill teens)
 Problem solving (e.g.
disability, caregiving)
User Risks and Complaints
Risks:
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Misinformation
Delayed treatment
Alternative medicine
Support for unhealthy
choices (e.g. suicide)
Distress from meeting
severely affected peers
Strong emotions,
arguments
Social withdrawal
Depression
Internet addiction
Privacy Loss
Identity Theft
Stalking
Deception
Complaints:
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Delayed communication
Lack of physical contact
Flames, rants
Time and email burdens
Off-topic posts
Technical difficulties,
spam, viruses & worms
Extraverts may use Internet
to further extend healthy
social network; introverts &
teens may become more
isolated (Kraut et al 2002,
Cummings, others)
Facilitation & Research
Facilitators must:
Researchers must:
 Administer membership
 Resolve technical
difficulties
 Correct misinformation
 Know group dynamics
(Yalom, Lieberman, White &
Dorman, Suler, Hsiung)
 Choose hands-off vs.
hands-on leadership
 Resolve disputes
 Prepare for emergencies
 Limit access by the
abusive, deceptive, or
disruptive
 Develop policies for ethics,
confidentiality & unsolicited
advice requests (Dyer,
 Use correct methodology
 Consider conflicts in
participant-researcher role
 Consider ethics of covert
research
 Seek moderator/group
approval of research
 Respect group norms and
confidentiality
 Know copyright of posts
belongs to writer
 Consider consequences of
withdrawing computer or
group access after study
 Monitor and adapt goals as
group evolves
Types of Research
 Experimental trials
• Internet access or group access as independent variable
• Longitudinal aspects of group use
• Pilot studies
 Objective assessments
• Health or psychosocial outcome
• Comparison of online and face-to-face groups
 Subjective assessments
• User survey
• Focus group
 Covert group observation
• Usage (number joining, remaining, or leaving; time of day;
posts per user; number of active participants & lurkers)
• Message themes (topics)
• Message linguistics (user expression)
• Message threads (amount of interaction among users)
• Social network analysis (who communicates with whom)
• Therapeutic process
Resources for Clinicians and Moderators
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Join/create list of moderators from similar groups
Coordinate face-to-face meeting of online group
Golant & Lieberman (see bibliography)
Suler, John. The Psychology of Cyberspace
http://www.rider.edu/~suler/psycyber/psycyber.html
• American Self-help Group Clearinghouse
http://www.mentalhelp.net/selfhelp/
• Psychcentral home page www.psychcentral.com
 Starting new group
http://psychcentral.com/howto.htm
• International Society for Mental Health Online
http://www.ismho.org
• Eysenbach on unsolicted email
http://www.jmir.org/2000/1/e1/
• Dyer email policy for grief website
http://www.journeyofhearts.org/jofh/about/terms
• Hsiung http://www.drbob.org/download/CP_3_6_p935-950.pdf
Resources for Researchers
 Ethics:
• Online therapy http://ismho.org/suggestions.html
• Ethical and Legal Aspects of Human Subjects Research
on the Internet 2000
http://www.aaas.org/spp/sfrl/projects/intres/report.pdf
• Assn. Of Internet Researchers 2001
http://aoir.org/reports/ethics.html
• Suler
http://www.rider.edu/~suler/psycyber/psycyber.html
• http://psychcentral.com/archives/n080503.htm
• http://www.cddc.vt.edu/aoir/ethics/public/YWaernglobalirethics.pdf
• http://www.indiana.edu/~csr/ASA2003_workshop.htm
• Klemm (see bibliography)
• Sharf (see bibliography)
Resources for Researchers
 Methods:
• Books:
 Steve Jones, Doing Internet Research
 Chris Mann & Fiona Stewart, Internet
Communication & Qualitative Research
• Bibliographies:
 http://construct.haifa.ac.il/~azy/refmetho.htm
 http://construct.haifa.ac.il/~azy/refsupp.htm
• Articles
• http://www.jmir.org/2002/2/e13/ Eysenbach, 2002