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