Internet Health Support Groups Uses & Formats, Benefits & Risks, Facilitation, & Research Approaches...
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Transcript of Internet Health Support Groups Uses & Formats, Benefits & Risks, Facilitation, & Research Approaches...
Internet Health Support Groups
Uses & Formats, Benefits & Risks,
Facilitation, & Research Approaches
Elizabeth A. Pector, M.D.Naperville, Illinois, USAwww.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 emailComprehensive health support system: disease education, FAQs, patient-professional Q&A, social support, games (ComputerLink, CHESS, about.com, Starbright World)
Health Support Website Model
SearchMembers + Visitors: welcome & clinical info
Members only: Communication center
Listserv OptionsWeb-only
Individual emailDigest
ChatInstant Message
Scheduled chat/focus group
Crisis/terminal phase subgroupInstructions to contactlocal emergency care
Communication with similarly affected members
Member biogaphical statementsMember contact info: email, phone
ArchivesMessages
Member Files & PhotosPoetry, art, etc.
Communication CenterMembers Only
News, events calendarContests, games, quizzes, etc.
List Admin role & credentialsIs membership restricted to patients only?
Group activity: # of members & monthly postsLink to List Administrator
NetiquettePolicies/Rules
Are clinicians or researchers welcomed?Attitude toward off-topic posts
Welcome to New UsersDisclaimer
Purpose/Mission StatementGroup history
FAQs about ConditionWritten by members
with health professional input
Articles(journal or lay press reprints)
Decision-making ToolsFlow charts
Text discussion of options
Links to other sites
Optional:E-mail Question & Answer Forum
with health professional
Clinical InfoInclude disclaimers
Home PageSite Directory
Consider user equipment,
education, computer literacy, disability
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: 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
Unique online: 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: 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 real-world
significant others are online with patient
Practical help received Ability to help others
Objective: 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: 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: Delayed
communication Lack of physical contact Flames, rants Time and email burdens Off-topic posts Technical difficulties,
spam, viruses & wormsExtraverts 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: 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, Eysenbach, Humphreys)
Researchers must: 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
• 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.dr-bob.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/YWaern-glo
balirethics.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.htmhttp://construct.haifa.ac.il/~azy/refsupp.htm
• Articles• http://www.jmir.org/2002/2/e13/ Eysenbach, 2002