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11/6/10 Lammert and Pector PLIDA 2010 2
• Structure, function, history, evolution of
online support
• Benefits and limits of online peer support
• Effects of online setting on individual and
group
• Leadership: establish & facilitate a forum
• Challenges of online support
11/6/10 Lammert and Pector PLIDA 2010 3
11/6/10 Lammert and Pector PLIDA 2010 4
Bereavement: 10% of all online groups
Only health conditions (43%) & weight loss
(13%) are more popular
23% of Yahoo loss groups are for child loss
Demographics & use patterns
Mainly: North American/European, young,
women, loss of child, less religious
1 hour/day average use
Fewer use chats than email groups
11/6/10 Lammert and Pector PLIDA 2010 5
• 1980s: Usenet Newsgroups
• 1990s: Listservs, Email lists,
Boards/Forums, Virtual
Environments, Chats
• 2000s: Social media/multimedia
Blogs
Myspace, Facebook, Twitter, etc.
Skype/Vonage etc.: Virtual + F2F11/6/10 Lammert and Pector PLIDA 2010 6
• New formats: social media, more
interactive multimedia websites
• New technology (smart phones, Skype,
digital video/photos, 3D ultrasound)
• New losses: fertility, multiples, prenatal
diagnosis, fetal surgery
• “Global village”: age, racial, ethnic,
social, spiritual, language diversity
11/6/10 Lammert and Pector PLIDA 2010 7
11/6/10 Lammert and Pector PLIDA 2010 8
• Low cost, convenient 24/7
• Empowerment
Information, recognition
Enhanced well-being, confidence, control
Improved social & emotional support
Less isolation, stress, depression, pain, health
care utilization
• NO effect on course of grief; little on health
• Adjunct to private counseling/F2F network
11/6/10 Lammert and Pector PLIDA 2010 9
• Miscommunication:
Arguments, rants, personal attacks
Misinterpretation of posts or of delays
• Privacy breach, identity theft,
cyberstalking
• Members at different stages of grief
• Information/email overload
• Inaccurate medical info, late diagnosis
• Crisis management11/6/10 Lammert and Pector PLIDA 2010 10
11/6/10 Lammert and Pector PLIDA 2010 11
Both provide:—Empathy & support
— Information & advice
—Sense of community
—Shared experiences
—Self-disclosure
—Catharsis
—Learning from peers & mentors
—Challenge distorted thinking (Limited)
—Helping & advocacy
Unique online:—Writing: therapeutic;
time to think, archived
—About 45% lurk.
—Social equality
—Asynchronous v. chat
—Anonymity:
Hides disturbing traits
Loosens inhibitions
intimacy
anger
No nonverbal cues
Enables deception
11/6/10 Lammert and Pector PLIDA 2010 12
• Online groups: members share deeply about
sensitive/private topics, but alone with emotions.
• F2F groups: nonverbal cues, greater depth &
breadth of comments, more interaction
• A few can dominate; what does silence mean?
• Hard to schedule chats; fast-paced chats.
• Computer/connection difficulties; privacy
• Multiple threads or themes at once on boards
• Conflict, negative peer ratings increased online.
11/6/10 Lammert and Pector PLIDA 2010 13
• Literacy: limited English or grammar; slang
• Cultural competence
Respect differences
Work to overcome barriers
Understand existence, relevance & appropriateness of
indigenous support systems and/or professionals
Understand influence of cultural system on behaviors,
health practices
Understand cultural taboos on topics for discussion
• Spirituality can be both positive & negative
11/6/10 Lammert and Pector PLIDA 2010 14
11/6/10 Lammert and Pector PLIDA 2010 15
• Relationship-building
How individuals act and react online
How interpersonal interactions occur
online
How individual & interpersonal effects
impact group welfare
How people integrate on- and offline
relationships
11/6/10 Lammert and Pector PLIDA 2010 16
• Prompt intimacy
• Personality affects narrative disclosure style
Neurotic: self-focus, good-to-bad sequence, ruminative
Conscientious: brief, factual, death words, less meaning
Extraversion: “social” (support, intimacy, advice), growth
• Psychopathology: some unsuitable for group
Psychosis (schizophrenia, bipolar in manic phase)
Personality disorder (borderline, schizoid, factitious,
extreme OCD)
Actively suicidal/homicidal
11/6/10 Lammert and Pector PLIDA 2010 17
Gender may affect expression
Women focus on emotion, men on info
Majority gender affects tone of whole group
Less difference in mixed-gender groups
Depression may be more prevalent in
online group participants than general
population.
11/6/10 Lammert and Pector PLIDA 2010 18
• No nonverbal cues (which contribute 90%
of meaning in communication)
Possibility for misinterpretation of words
Inaccurate mental image of peer
Delayed response may be distressing
• Objectification of others
Less consideration of peer’s state of mind
Easy to express hostility toward a screen
Rants, flames
11/6/10 Lammert and Pector PLIDA 2010 19
• Tone of group influenced by gender mix
• Individual may feel distress or optimism in
reading stories, comparing self with others
“Bad-to-good” narratives preferred; discomfort
in reading good-to-bad, “hopeless” posts
• Lay leaders emerge if no official leader
• Lurkers read, benefit, don’t contribute
• Group division: choosing sides for/against
abusive or deceptive members.11/6/10 Lammert and Pector PLIDA 2010 20
• Yalom’s factors present onlinehope, universality, cohesiveness, catharsis,
information, interpersonal learning, helping.
• Closed-end groups: Tuckman theoryForming, storming, norming, performing,
adjourning (? Transforming)
• Open-end groups:people come and go, anonymous, invisible,
lower commitment than face-to-face
11/6/10 Lammert and Pector PLIDA 2010 21
11/6/10 Lammert and Pector PLIDA 2010 22
12-4a
Figure 12-2a
Performing Transforming
or AdjourningNorming
Storming
Forming
Return to
Independence
Dependence/
interdependence
Independence
From McGraw-Hill
11/6/10 Lammert and Pector PLIDA 2010 23
Individual
Issues
Forming Storming Norming Performing
“How do I fit
in?”
“What’s my
role here?”
“What do the
others expect
me to do?”
“How can I best
perform my
role?”
Group
Issues
“Why are we
here?”
“Why are we
fighting over
who’s in
charge and who
does what?”
“Can we agree
on roles and
work as a
team?”
“Can we do the
job properly?”
From McGraw-Hill
11/6/10 Lammert and Pector PLIDA 2010 24
• Decisions
Structure: Forum/Board, email, chat
Private vs. publicly accessible
Multiple forums vs. one group
Separate “pity party/venting” or off-topic
Inclusion/exclusion criteria
Find resources for those you DON’T serve
11/6/10 Lammert and Pector PLIDA 2010 25
• Software resources
Website software: contact Webmaster
Yahoogroups or Topica
Free/fee forum software
• Online guides to establishing group
Madara
Grohol
11/6/10 Lammert and Pector PLIDA 2010 26
• Memorial sites: angels, ultrasoundEfforts to make the lost child “real”
Limits: angels imaginary; u/s biological
Moms post > dads; sons > dtrs; messages to
child; not much gender difference evident.
• Deceased-user sites (Facebook)Posted “conversations” continue relationship
Social support via community of grievers
“Rubber-neckers”: distant or no relationship
11/6/10 Lammert and Pector PLIDA 2010 27
Organization Website Model
SearchMembers + Visitors: welcome & clinical info
Members only: Communication center
Listserv OptionsWeb-only
Individual email
Digest
ChatInstant Message
Scheduled chat/focus group
Crisis/terminal phase subgroupInstructions to contact
local emergency care
Communication with similarly affected members
Member biogaphical statementsMember contact info: email, phone
ArchivesMessages
Member Files & Photos
Poetry, art, etc.
Communication CenterMembers Only
News, events calendar
Contests, games, quizzes, etc.
List Admin role & credentialsIs membership restricted to patients only?
Group activity: # of members & monthly posts
Link to List Administrator
NetiquettePolicies/Rules
Are clinicians or researchers welcomed?
Attitude toward off-topic posts
Welcome to New UsersDisclaimer
Purpose/Mission Statement
Group 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
• How big do you want to be?
• Options include:
Listing in “google groups”
American Self-Help Group database,
NORD (raredisorders.org)
Conferences, f2f groups
Twitter, LinkedIn, Facebook, topical
websites/groups, and members.
11/6/10 Lammert and Pector PLIDA 2010 29
• Allow period for farewells
• Provide list of similar groups and
non-group resources
• Encourage a suitable member to
found another group elsewhere
• Summarize positive growth in group
over its tenure.
11/6/10 Lammert and Pector PLIDA 2010 30
11/6/10 Lammert and Pector PLIDA 2010 31
• Leader style depends on the stage of group
development --in closed-end groups.
• In early stages of groups: active, directive,
structured, and task oriented.
• In later stages of groups: more supportive,
democratic, decentralized and participative.
• Emphasize goal: progress, not pity-party
11/6/10 Lammert and Pector PLIDA 2010 32
• Designated leader/moderator In closed-end groups, often presents or directs
discussion on a specific topic
In open-end groups, may discuss specific topic or
merely facilitate conversation, ensuring all members
have chance to be heard
• Unmoderated In online groups or self-help groups, natural leaders
emerge
Natural leaders often mimic the actions of trained
facilitators in other groups
11/6/10 Lammert and Pector PLIDA 2010 33
• Moderator roles and responsibilities
Assess personal readiness to moderate
Understand online interaction, cultural
competence
Establish guidelines/terms of service
Monitor posts often
Intervene when posts violate guidelines
Encourage progress through grief
11/6/10 Lammert and Pector PLIDA 2010 34
• Balanced between self and group needs
• Empathic, inclusive (good listener, positive
attitude toward members)
• Strong, able to withstand conflict, emotion
• Flexible, creative in approach
• Impartial: support group agenda, not own.
• Focus on process, trust group & process
• Humor, and distance from own loss(es)
11/6/10 Lammert and Pector PLIDA 2010 35
• Basics: Technology, Group function
• Coping process for your populationUnderstand meaning of situation to parents
Learn cultural proficiency, avoid stereotypes
• Perinatal psychologyGrief for lack of expected outcome
Signs of PPD, PTSD, Complex Grief
• Limits of group support:Peer groups do NOT provide psychotherapy!
11/6/10 Lammert and Pector PLIDA 2010 36
• Conventions, emoticons, shorthand
DON’T SHOUT IN ALL CAPITALS!
Smileys Angels ^i^, ^j^
Hugs (((Jen))) {{{Room}}}, Hugs &
kisses () & **
DD, DS, DH, DHAC, SIL, MIL, FIL
LOL, ROTFL, IMM, OTOH, FWIW,
TTYL, #$(!
11/6/10 Lammert and Pector PLIDA 2010 37
• Co-moderators in different places a good idea
• Private chat between co-moderators
• Member/moderator boundary blurred
Moderator ignored; or member as mentor
• Hard to provide structure and focus
• Recognizing distress/risk & intervening
• Balancing individual/group needs
Private warnings when guidelines are violated
Discipline: temporary to permanent banishment
Aftermath of conflict—discussed later in talk
11/6/10 Lammert and Pector PLIDA 2010 38
• Openness (intimate/deep, intense, easier for
embarrassing topics).
• Easy to share info
• Hard to identify & address hidden emotions
• Takes time to develop group, cohesion is a
challenge, hard to deepen discussion (F2F in
addition to online group enhances cohesion)
• Conflicts escalate quickly, hard to defuse.
• Flirtatious, passive/aggressive, defensive
behavior
11/6/10 Lammert and Pector PLIDA 2010 39
• The group is welcoming, supportive, and nonjudgmental.
• Moderators don’t intervene unless guidelines are violated.
• Everyone’s situation is unique. There’s no “right way” to cope.
Don’t tell others how to cope. Do share what helped you.
• Everyone’s story is important. Not worse/better; different.
We’d like you to share, but you don’t have to.
We aim for equal time: please don’t dominate or interrupt.
• Respect differences: situations, opinions, feelings.
Avoid flames, rants, personal attacks, obscenity.
• Be honest but careful. Some aren’t who they seem to be.
If you suspect dishonesty or identity theft, tell moderator.
Provide validating information on moderator request.
Meet other members in public; notify someone of meeting.
• The group is for peer support, not professional therapy. Referrals to appropriate professionals may be available.
11/6/10 Lammert and Pector PLIDA 2010 40
11/6/10 Lammert and Pector PLIDA 2010 41
• The Unseen & Uninvited
• Depression
Distinguishing from grief
Threats of self- or other-harm
• Disruption
• Deception
11/6/10 Lammert and Pector PLIDA 2010 42
• Unseen: Lurkers benefit, but less than active
Less social benefit
Less satisfied
Lurkers in health support groups are older, more
recently diagnosed, lower mental well-being
• Uninvited: Facebook “Emotional Rubberneckers”
Sometimes Appreciated
Sometimes Annoying
Genuinely upset vs. seeking attention/voyeur
11/6/10 Lammert and Pector PLIDA 2010 43
11/6/10 Lammert and Pector PLIDA 2010 44
Depression vs. Grief
Depression Grief
Focus on self
May not respond to support
Focus on deceased
Accepts warm support
Mood stays down; low
energy and motivation
Mood changes; angry,
agitated, restless
Can’t care for self or others;
can’t think, work, plan
Can care for self, others &
tasks; can concentrate, plan
Feels guilt in laughing, no
pleasure, hopeless,
withdrawn
Gradually laughs, can enjoy
others, world, usual activities
Loss denied or meaningless Acknowledges loss, meaning
11/6/10 Lammert and Pector PLIDA 2010 45
Adapted from Dyer, 2001; and Limbo & Wheeler, 1998.
• Depression: Threats of assault to self, others
Suicidality--? Address in guidelinesAssess risk: Plan? Means avail? Support? Consult local
mental health professional or ER.
Use local and online resources, private counseling
referral, call ER or 911 for member, or local police
Online: best to call local police with info on email
address, ISP provider, IP address.
Homicidality/threat to partner, baby, others
Psychiatrist duty to protect (Tarasoff) Assess threat,
refer, warn victim, notify police, protective services etc.
11/6/10 Lammert and Pector PLIDA 2010 46
• BackgroundSuicidal people have distorted thinking,
confusion, narrow perspective
Crises may trigger suicide
People with few social contacts who feel
rejected and unsupported are at more risk
Support from suicide-prevention & other
groups, can reframe perspective
11/6/10 Lammert and Pector PLIDA 2010 47
• Emotional first aidGive info: referrals to online suicide-prevention
sites, hotlines, 1:1 chat help. (suicide.org,
hopeline.com, samaritans.org)
Educate members on PPD, PTSD, depression
Warm, empathic, nurturing, hopeful setting
Stable moderator presence; check posts often
Delete posts that legitimize suicide
Anonymity important for helper & helpee
11/6/10 Lammert and Pector PLIDA 2010 48
• Abstracted sample from JourneyofHearts.org• If you are feeling like harming yourself or someone else, or
are feeling depressed, helpless or hopeless, Call 911, your
local suicide hot-line, or Crisis Intervention line, located in
the Yellow Pages, or contact the Samaritans via e-mail
http://www.samaritans.org.uk/textonly.html/texthome.html
The Samaritans is a UK charity, founded in 1953, which
exists to provide confidential emotional support to any
person, who is suicidal or despairing… 24 hours every day
by trained volunteers….
• Call someone--a friend, or family member, your clergy or
physician. Look in the Yellow pages under Counselors,
Psychologists, Social Workers and Psychiatrists, if you feel
you may need immediate professional assistance.
• 11/6/10 Lammert and Pector PLIDA 2010 49
• HsiungLimit announcements (risk of contagion)
Start (balanced) memorial thread and/or page
Don’t idealize/romanticize the deceased or death
Allow online ventilation for grief
Share resources for grief after suicide
Delete posts that legitimize suicide
Question: reveal identity of individual to group
Question: conveying condolences to survivors
11/6/10 Lammert and Pector PLIDA 2010 50
11/6/10 Lammert and Pector PLIDA 2010 51
• Disruption: Broken rules (respect, honesty)
InnocentUnaware of rule/custom (e.g. “no religion/politics”)
Unaware of what might hurt (pregnancy mention)
“I forgot” (? grief/depression effects on thinking)
DeliberateCyberstalking (individual, or vs. group purpose)
http://www.ncvc.org/ncvc/main.aspx?dbName=Document
Viewer&DocumentID=32458
Identity theft
http://www.ftc.gov/bcp/edu/microsites/idtheft/
Trolls & Fakers
11/6/10 Lammert and Pector PLIDA 2010 52
• DisruptionPersonality, psychiatric or substance disorder
Multiple complaints about a member
Group welfare should not be sacrificed for 1 member
Dismiss/ban/moderate; Debrief? (Watch confidentiality)
Offer other support options. Delete posts?
Alternative lifestyle, language style, dress
Anyone “different” from typical member
Accommodate diversity without changing group
Cliques within group; outside group or meetings
Confront off-list. Minimize on-list attention.
11/6/10 Lammert and Pector PLIDA 2010 53
• Deception:
“Fun Fakers” and “Munchhausen by Modem”
Clues: Facts don’t fit, “too good/bad to be true”
Investigation: Truth may be stranger than fiction!
Confrontation: private, then public
Fraud
Beware requests for money, baby stuff, photos
Suspect: drama, complications, many kids/multiples
Father sometimes unaware of faked pregnancy
It is better to support a faker than to deny support
to someone real—Maureen Boyle, MOST
11/6/10 Lammert and Pector PLIDA 2010 54
Trolls may: cause irritation disrupt an
online group, steal money, build false
hopes, abuse children. 2 main types:
people who have the psychological need to
feel good by making others feel bad.
people who pretend to be someone that
they are not - they create personae that
you think are real, but they know is
fictitious.
Source: teamtechnology.co.uk
11/6/10 Lammert and Pector PLIDA 2010 55
• Posts duplicate material elsewhere on Internet (health sites)
• Characteristics of the “illness” are described as caricatures
• Near-fatal illness alternates with miraculous recovery
• Claims are fantastic, contradicted by later posts, or disproved
• Continual drama in poster’s life--when other members earn
attention (Caution: Truth sometimes IS stranger than fiction!)
• Blasé attitude about crises
• Others writing on poster’s behalf (family, friends) have same
text style.
• Lesson: members must balance empathy with
circumspection.
Source: Marc D. Feldman.
11/6/10 Lammert and Pector PLIDA 2010 56
• How groups react to disruption/deceptionEmotions: angry, amused, sad, betrayed, hurt, afraid,
embarrassed, distrusting
Perpetrator may: quit, claim innocence, get angry at
group, or make fun of other members for gullibility
Some groups break apart, or split into two camps
Some still want to believe the deceiver
Re-form & move on; may delete posts by perpetrator.
• Help remaining members react
Limited in-group discussion; “take it outside.”11/6/10 Lammert and Pector PLIDA 2010 57
11/6/10 Lammert and Pector PLIDA 2010 58
• Perinatal/infant death support :
asrm.org
babyloss.com
hygeia.org
miscarriagesupport.org.nz
nationalshare.org
pregnancyloss.info
Yahoogroups.com, Topica.com11/6/10 Lammert and Pector PLIDA 2010 59
Madara
http://www.mentalhelp.net/selfhelp/selfhelp.ph
p?id=863
Grohol http://psychcentral.com/howto.htm
Suler http://www-
usr.rider.edu/~suler/psycyber/psycyber.html
Munro
http://www.kalimunro.com/article_conflict_onli
ne.html
11/6/10 Lammert and Pector PLIDA 2010 60
• Social media and loss support
Memorial sites, deceased-user sites
• Privacy risks with social media
• How online loss documents may
affect parents or siblings in future
11/6/10 Lammert and Pector PLIDA 2010 61
• Online groups began 30 years ago and
continue to evolve
• Unique aspects of online setting affect
interaction
• Moderators need new skills for online
work—these enhance F2F work
• There are limited benefits, some risks, and
manageable challenges
11/6/10 Lammert and Pector PLIDA 2010 62
11/6/10 Lammert and Pector PLIDA 2010 63