plida2010onlinegriefgroups r3

11/6/10 Lammert and Pector PLIDA 2010 2

http://www.corante.com/mooreslore/archives/images/earth from space.gif

• 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


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 groups11/6/10 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

• 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


• 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


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


• 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.


• 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


• 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


• 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


• 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


• 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


• 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


• 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.


• Yalom’s factors present onlinehope, universality, cohesiveness, catharsis, inf

ormation, interpersonal learning, helping.

• Closed-end groups: Tuckman theoryForming, storming, norming, performing, adjou

rning (? Transforming)

• Open-end groups:people come and

go, anonymous, invisible, lower commitment than face-to-face



Performing Transforming

or AdjourningNorming

Storming

Forming

Return to

Independence

Dependence/

interdependence

Independence

Adapted from www.personal.kent.edu/~mhogue/I&G_12.ppt

http://www.personal.kent.edu/~mhogue/I&G_12.ppt

• 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


• 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)


• 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


• 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.


• 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


• 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.


• 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!


• 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


• 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


• 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)


• 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


• 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.


• The Unseen & Uninvited

• Depression

Distinguishing from grief

Threats of self- or other-harm

• Disruption

• Deception


• 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”


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


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.


• 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


• 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


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.


http://www.samaritans.org.uk/textonly.html/texthome.html

• 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.


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


http://www.ncvc.org/ncvc/main.aspx?dbName=DocumentViewer&DocumentID=32458



http://www.ftc.gov/bcp/edu/microsites/idtheft/

• 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


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


• 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.


• 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

• Perinatal/infant death support :

asrm.org

babyloss.com

hygeia.org

miscarriagesupport.org.nz

nationalshare.org

pregnancyloss.info

Groups.yahoo.com, Topica.com11/6/10 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


http://www.mentalhelp.net/selfhelp/selfhelp.php?id=863

http://www.mentalhelp.net/selfhelp/selfhelp.php?id=863

http://psychcentral.com/howto.htm

http://www-usr.rider.edu/~suler/psycyber/psycyber.html



http://www.kalimunro.com/article_conflict_online.html

http://www.kalimunro.com/article_conflict_online.html

• 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


• 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.


plida2010onlinegriefgroups r3

Documents

pector plida

online support groups

pector hsiung

effects of online peer

electronic support groups

email groups

mutual support

yahoo loss groups