Plida2010 onlinegriefgroupsr1

Online Peer Support Groups for Pregnancy Loss and Infant

Death: Research Meets Real World

Cathi Lammert, R.N.National Share

Elizabeth A. Pector, M.D.Spectrum Family Medicine

Lammert and Pector PLIDA 2010 2

The World in a Wide Web

11/6/10

http://www.corante.com/mooreslore/archives/images/earth%20from%20space.gif


Overview: What we’ll cover

• 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


Structure, Function, History, Evolution

11/6/10


Structure & Function

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


History & Evolution

• 1980s: Usenet Newsgroups• 1990s: Listservs, Email lists,

Boards/Forums, Virtual Environments, Chats

• 2000s: Social media/multimediaBlogsMyspace, Facebook, Twitter, etc.Skype/Vonage etc.: Virtual + F2F

11/6/10


Evolution: what’s new?

• 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


Benefits & Risks: Good, Bad, & Ugly

Online

11/6/10

9

Benefits of online groups

• Low cost, convenient 24/7• Empowerment

Information, recognitionEnhanced well-being, confidence, controlImproved social & emotional supportLess 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


Risks of online groups

• Miscommunication:Arguments, rants, personal attacksMisinterpretation of posts or of delays

• Privacy breach, identity theft, cyberstalking

• Information/email overload• Inaccurate medical info, late diagnosis• Crisis management

11/6/10


Effects of online setting on peer support

11/6/10


Online vs. face-to-faceBoth 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 traitsLoosens inhibitions

intimacyanger

Enables deception

11/6/10


Challenges online vs. F2F

• 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.• Computer/connection difficulties; privacy• Multiple threads or themes at once• More conflict & negative peer ratings.

11/6/10


Challenges of culture

• Literacy: limited English or grammar; slang• Cultural competence

Respect differences Work to overcome barriers Understand existence, relevance & appropriateness of

indigenous support systems Understand influence of culture on behaviors, health

practices Understand cultural taboos on topics for discussion

• Spirituality can be both positive & negative

11/6/10


Individual, interpersona

l & group effects online

11/6/10


Effects of online setting:Individual, Interpersonal, Group

• Relationship-buildingHow individuals act and react onlineHow interpersonal interactions occur

onlineHow individual & interpersonal effects

impact group welfareHow people integrate on- and offline

relationships

11/6/10


Effects of Online Setting:Individual

• 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


Effects of Online Setting:Individual

• Gender may affect expressionWomen focus on emotion, men on infoLess 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“Bad-to-good” narratives preferred; discomfort

in reading good-to-bad, “hopeless” posts

11/6/10


Effects of Online Setting:Interpersonal

• No nonverbal cues (which contribute 90% of meaning in communication)Possibility for misinterpretation of wordsInaccurate mental image of peerDelayed response may be distressing

• Objectification of othersLess consideration of peer’s state of mindEasy to express hostility toward a screenRants, flames

11/6/10


Effects of Online Setting:Group

• 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

abusive or deceptive members.

11/6/10


Theories of group function

• 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


Tuckman’s Theoryof Group Development

11/6/10

12-4a

Figure 12-2a

Performing Transforming or Adjourning

Norming

Storming

Forming

Return toIndependence

Dependence/interdependence

Independence

From McGraw-Hill


Leadership 1: how tostart a group

11/6/10


Establishing an online group

• DecisionsStructure: Forum/Board, email, chatPrivate vs. publicly accessibleMultiple 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


Establishing an online forum

• Software resourcesWebsite software: contact WebmasterYahoogroups or TopicaFree/fee forum software

• Online guides to establishing groupMadaraGrohol

11/6/10

26

Memorial Sites & Social Networking

• Memorial sites: angels, ultrasoundEfforts to make the lost child “real”Limits: angels imaginary; u/s biologicalMoms post > dads; sons > dtrs; messages to

child; not much gender difference evident.

• Deceased-user sites (Facebook)Posted “conversations” continue relationshipSocial 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 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


Promoting your group

• How big do you want to be?• Options include:

Listing in “google groups”American Self-Help Group database,

NORD (raredisorders.org)Conferences, f2f groupsTwitter, LinkedIn, Facebook, topical

websites/groups, and members.

11/6/10


Ending a group

• 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


Leadership 2: Guide your flock

11/6/10


Types of group leadership

• 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


Moderating online group

• Moderator roles and responsibilitiesAssess personal readiness to moderateUnderstand online interaction, cultural

competenceEstablish guidelines/terms of serviceMonitor posts oftenIntervene when posts violate guidelinesEncourage progress through grief

11/6/10


Are you a good moderator?

• 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


Moderator knowledge base

• Basics: Technology, Group function• Coping process for your population

Understand meaning of situation to parentsLearn cultural proficiency, avoid stereotypes

• Perinatal psychologyGrief for lack of expected outcomeSigns of PPD, PTSD, Complex Grief

• Limits of group support:Peer groups do NOT provide psychotherapy!

11/6/10


Tech talk: Cyber-language

• Conventions, emoticons, shorthandDON’T SHOUT IN ALL CAPITALS!Smileys Angels ^i^, ^j^Hugs (((Jen))) {{{Room}}}, Hugs &

kisses () & **DD, DS, DH, DHAC, SIL, MIL, FILLOL, ROTFL, IMM, OTOH, FWIW,

TTYL, #$(!

11/6/10

36

Pointers for Moderators (1)

• 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



Pointers for moderators (2)

• Member/moderator boundary blurredModerator ignored; or member as mentorDominating member may overrule moderator

• 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

• Co-moderators in different locales a good idea• Private chat between co-moderators

11/6/10


Sample guidelines• 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


Obstacles: Challenges

11/6/10


Common challenges

• The Unseen & Uninvited• Depression

Distinguishing from griefThreats of self- or other-harm

• Disruption• Deception

11/6/10


The Unseen & Uninvited

• Unseen: Lurkers benefit, but less than activeLess social benefitLess satisfied Lurkers in health support groups are older, more

recently diagnosed, lower mental well-being

• Uninvited: Facebook “Emotional Rubberneckers” Sometimes AppreciatedSometimes AnnoyingGenuinely upset vs. seeking attention/voyeur

11/6/10


Offering hope

11/6/10

Depression vs. GriefDepression Grief

Focus on selfMay not respond to support

Focus on deceasedAccepts 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 43

Adapted from Dyer, 2001; and Limbo & Wheeler, 1998.


Depression• Depression: Threats of assault to self, others

Suicidality--? Address in guidelines Assess 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


Preventing suicide

• BackgroundSuicidal people have distorted thinking,

confusion, narrow perspective Crises may trigger suicidePeople with few social contacts who feel

rejected and unsupported are at more riskSupport from suicide-prevention & other

groups, can reframe perspective

11/6/10


Preventing suicide

• 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, depressionWarm, empathic, nurturing, hopeful settingStable moderator presence; check posts oftenDelete posts that legitimize suicideAnonymity important for helper & helpee

11/6/10


Preventing 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.

• 11/6/10

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

48

After suicide

• HsiungLimit announcements (risk of contagion)Start (balanced) memorial thread and/or page

Don’t idealize/romanticize the deceased or death

Allow online ventilation for griefShare resources for grief after suicideDelete posts that legitimize suicideQuestion: reveal identity of individual to groupQuestion: conveying condolences to survivors



Disruption, Deception

11/6/10


Disruption (1)• Disruption: Broken rules (respect, honesty)

Innocent Unaware of rule/custom (e.g. “no religion/politics”) Unaware of what might hurt (pregnancy mention) “I forgot” (? grief/depression effects on thinking)

Deliberate Cyberstalking (individual, or vs. group purpose)

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

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

Trolls & Fakers 11/6/10



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


Disruption (2)• Disruption

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. Delete posts?

Alternative lifestyle, language style, dress Anyone “different” from typical member Accommodate diversity without changing group

Cliques within group; outside group or meetingsConfront off-list. Minimize on-list attention.

11/6/10


Deception (1)• 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


Deception (2)

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


Clues to trolls/fakers• 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


Healing the Group

• How groups react to disruption/deceptionEmotions: angry, amused, sad, betrayed, hurt, afraid,

embarrassed, distrustingPerpetrator may: quit, claim innocence, get angry at

group, or make fun of other members for gullibilitySome groups break apart, or split into two camps

Some still want to believe the deceiverRe-form & move on; may delete posts by perpetrator.

• Help remaining members reactLimited in-group discussion; “take it outside.”11/6/10


Resources, Review, and a look ahead

11/6/10


Resources (1)

• Perinatal/infant death support : asrm.orgbabyloss.comhygeia.orgmiscarriagesupport.org.nznationalshare.orgpregnancyloss.info

Yahoogroups.com, Topica.com11/6/10

58

Resources (2)

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

Grohol http://psychcentral.com/howto.htmSuler

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

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

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


Future research

• Social media and loss supportMemorial sites, deceased-user sites

• Privacy risks with social media• How online loss documents may

affect parents or siblings in future

11/6/10


Summary

• 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


Thank you!

11/6/10

Documents

Plida2010 onlinegriefgroupsr1