Plida2010 onlinegriefgroups

11/6/10 Lammert and Pector PLIDA 2010 2

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• 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 groups


• 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



• 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


• 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


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


• 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.


• 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



• 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


• 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


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.


• 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


• 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



12-4a

Figure 12-2a

Performing Transforming

or AdjourningNorming

Storming

Forming

Return to

Independence

Dependence/

interdependence

Independence

From McGraw-Hill


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


• 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

Grohol


• 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


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.


• 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.



• 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


• 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


• 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


• 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)


• 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!


• 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, #$(!


• 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


• 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


• 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: 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



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, 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.


• 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


• 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


• 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

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

• 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



• 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


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

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

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

• 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.


• 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,

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


• 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


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

• 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



Health & Medicine

Plida2010 onlinegriefgroups