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
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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, langua
ge diversity11/6/10 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
11/6/10 Lammert and Pector PLIDA 2010 9
• Miscommunication
• Privacy breach, identity theft, cyberstalking
• Information/email overload
• Inaccurate medical info, late diagnosis
• Crisis management
• NO effect on course of grief; little on health
• Adjunct to private counseling/F2F network
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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
—Helping & advocacy
—Challenge distorted thinking (Limited)
Unique online:—Asynchronous or chat
—Social equality
—About 45% lurk
—No nonverbal cues
—Writing: therapeutic; time to think, archived
—Anonymity:
Hides disturbing traits
Loosens inhibitions
intimacy
anger
Enables deception
11/6/10 Lammert and Pector PLIDA 2010 12
• Online groups: members share deeply about
sensitive topics, but are 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 with “texting language.”
• Multiple threads or themes at once, concurrent
private IM conversations.
• More conflict & negative peer ratings 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 cultural support systems
Understand influence of culture on behaviors, health
practices
Understand cultural taboos on topics for discussion
• Expressions of religion/spirituality
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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
• Openness – (inventive / curious vs. consistent / cautious)
Art, emotion, adventure, curiosity, variety
• Conscientiousness – (efficient / organized vs. easy-going /
careless)
Self-discipline, dutiful, achievement, planned behavior
• Extraversion – (outgoing / energetic vs. shy / reserved)
Energy, seeks stimulation with others
• Agreeableness – (friendly / compassionate vs. competitive /
outspoken
Compassionate, cooperative vs. suspicious/antagonistic
• Neuroticism – (sensitive / nervous vs. secure / confident)
Experiences unpleasant emotions easily:
anger, anxiety, depression, vulnerability
11/6/10 Lammert and Pector PLIDA 2010 17
• 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 18
• Gender may affect expression
Women focus on emotion, men on info
Less difference in mixed-gender groups
• Depression may be more prevalent in online
group participants than general population.
• Individual may feel distress or optimism in
reading stories, comparing self with others
Some may feel discomfort in reading good-to-
bad, “hopeless” posts
11/6/10 Lammert and Pector PLIDA 2010 19
• Nonverbal cues absent (lose up to 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 20
• Tone of group influenced by majority
gender
• People at different places in grief
• Lay leaders emerge if no official leader
• Lurkers read, benefit, don’t contribute
• Group division: choosing sides for/against
opinions or abusive/deceptive members.
11/6/10 Lammert and Pector PLIDA 2010 21
• Yalom’s factors present onlinehope, universality, cohesiveness, catharsis, inf
ormation, interpersonal learning, helping.
• Open-end groups:people come and
go, anonymous, invisible, lower commitment than face-to-face
• Closed-end groups: Tuckman theoryForming, storming, norming, performing, adjou
rning (? Transforming)
11/6/10 Lammert and Pector PLIDA 2010 22
11/6/10 Lammert and Pector PLIDA 2010 23
Performing Transforming
or AdjourningNorming
Storming
Forming
Return to
Independence
Dependence/
interdependence
Independence
Adapted from www.personal.kent.edu/~mhogue/I&G_12.ppt
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 (link in resources at end)
Grohol (link in resources at end)
11/6/10 Lammert and Pector PLIDA 2010 26
• Memorial sites: angels, ultrasoundEfforts to make the deceased child “real”
Limits: angels imaginary; u/s biological
Moms post > dads; for sons >for dtrs;
messages to child; little gender difference.
• Deceased-user sites (Facebook)Posted “conversations” continue relationship
Social support via community of grievers
“Rubber-neckers”: distant or no relationship
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• 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
establish another group elsewhere
• Summarize positive growth in group
over its tenure
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11/6/10 Lammert and Pector PLIDA 2010 31
• 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
• Unmoderated Natural leaders emerge
Natural leaders often mimic the skills of trained
facilitators.
11/6/10 Lammert and Pector PLIDA 2010 32
• 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 33
• Conventions, emoticons, shorthandDON’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, #$(!
Text- and twitter-talk—hard to understand
11/6/10 Lammert and Pector PLIDA 2010 34
• Moderator roles and responsibilities
Assess personal readiness to moderate
Understand online interaction
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 35
• 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 36
• 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 37
• Member/moderator boundary blurred
Moderator ignored; or member acts as mentor
Dominating “self-designated helper”
• Hard to provide structure and focus
• Recognizing distress/risk & intervening—(later)
• Balancing individual/group needs
Private warnings when guidelines are violated
Discipline: temporary to permanent banishment
• Co-moderators in different locales a good idea
• Private chat between co-moderators11/6/10 Lammert and Pector PLIDA 2010 38
• 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 39
11/6/10 Lammert and Pector PLIDA 2010 40
• The Unseen & Uninvited
• Depression
Distinguishing from grief
Threats of self- or other-harm
• Disruption
• Deception
11/6/10 Lammert and Pector PLIDA 2010 41
• Unseen: Lurker benefits, but less than active user
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
Researchers, press, clinicians, “curious”
11/6/10 Lammert and Pector PLIDA 2010 42
11/6/10 Lammert and Pector PLIDA 2010 43
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 44
Adapted from Dyer, 2008; and Limbo & Wheeler, 1998.
• Threats of assault to self, others
Suicidality--? Address in guidelinesAssess risk: Plan? Means avail? Support? Consult local
mental health professional (on-call advisor) or ER.
Use local and online resources, refer to private
counseling, call member’s ER, local police or 911.
Consider a call to your own local police with info on email
address, ISP provider, IP address.
Homicidality/threat to partner, baby, others
Psychiatrist duty to protect (Tarasoff) ? Moral “duty to
intervene.” Assess threat, refer, warn victim if possible,
notify police, protective services if possible, etc.
11/6/10 Lammert and Pector PLIDA 2010 45
• BackgroundSuicidal people have distorted
thinking, confusion, narrow perspective
People with few social contacts who feel
rejected and unsupported are at more risk
Crises may trigger suicidal
thinking, hopelessness
Support from suicide-prevention sites &
hotlines can reframe perspective
11/6/10 Lammert and Pector PLIDA 2010 46
• Educate members on PPD, PTSD, depression
• Warm, empathic, nurturing, hopeful setting
• Stable moderator presence; check posts often
• If needed, give referrals to online suicide-
prevention sites, hotlines, 1:1 chat help.
(suicide.org, hopeline.com, samaritans.org)
• Anonymity important for helper & helped
• Respond privately to warnings (repeated death
references—ask member to clarify)
• Delete posts that legitimize suicide
11/6/10 Lammert and Pector PLIDA 2010 47
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 48
• Limit announcements/story (risk of contagion)
Moderator may wish to only notify of death, not cause
• Start (balanced) memorial thread and/or page
Don’t idealize/romanticize deceased or death
• Allow online ventilation for grief
• Share resources for grief after suicide or death
• Delete posts that legitimize/promote suicide
• Question: reveal identity of individual to group
• Question: conveying condolences to survivors
• Self-care for moderator important.
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InnocentUnaware of rule/custom (e.g. “no religion/politics”)
Unaware of what might hurt (pregnancy mention)
“I forgot” (? grief/depression effects on thinking)
Troublesome revelations
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 51
• Personality, 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 to banned. Delete posts?
• Alternative lifestyle or expressions
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 52
• 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 53
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 54
• 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 55
• How groups react to disruption/deceptionEmotions:
angry, amused, sad, betrayed, hurt, afraid, violated, e
mbarrassed, 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 56
11/6/10 Lammert and Pector PLIDA 2010 57
• Perinatal/infant death support : asrm.org
babyloss.com
hygeia.org
miscarriagesupport.org.nz
nationalshare.org
pregnancyloss.info
• Groups.yahoo.com, Topica.com
• http://thinkofit.com/webconf/forumsoft.htm
11/6/10 Lammert and Pector PLIDA 2010 58
Madara
http://www.mentalhelp.net/selfhelp/selfhelp.ph
p?id=863
Grohol http://psychcentral.com/howto.htm
Sulerhttp://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 59
• Coping strategies & support for
moderators who confront challenges
Moderator support sites
• 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 60
• 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.
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