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
May 15, 2015
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
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The World in a Wide Web
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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
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Structure, Function, History, Evolution
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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
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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
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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
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Benefits & Risks: Good, Bad, & Ugly
Online
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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
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Risks & Limits of online groups
• 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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Effects of online setting on peer support
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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
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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 with “texting language.”• Multiple threads or themes at once, concurrent
private IM conversations.• More conflict & negative peer ratings online.
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Challenges of culture
• 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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Individual, interpersona
l & group effects online
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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
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Effects of Online Setting:Individual
• 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
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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 Some may feel discomfort in reading good-to-
bad, “hopeless” posts
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Effects of Online Setting:Interpersonal
• Nonverbal cues absent (lose up to 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
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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
opinions or abusive/deceptive members.
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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
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Tuckman’s Theoryof Group Development
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12-4a
Figure 12-2a
Performing Transforming or Adjourning
Norming
Storming
Forming
Return toIndependence
Dependence/interdependence
Independence
From McGraw-Hill
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Leadership 1: how tostart a group
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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
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Establishing an online forum
• Software resourcesWebsite software: contact WebmasterYahoogroups or TopicaFree/fee forum software
• Online guides to establishing groupMadaraGrohol
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Memorial Sites & Social Networking
• Memorial sites: angels, ultrasoundEfforts to make the deceased child “real”Limits: angels imaginary; u/s biologicalMoms post > dads; for 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
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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
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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.
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Ending a group
• 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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Leadership 2: Guide your flock
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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
• Unmoderated Natural leaders emerge Natural leaders often mimic the skills of trained
facilitators.
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Moderator knowledge base
• Coping process for your populationUnderstand 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!
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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, #$(!Text- and twitter-talk—hard to understand
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Moderating online group
• Moderator roles and responsibilitiesAssess personal readiness to moderateUnderstand online interactionEstablish guidelines/terms of serviceMonitor posts oftenIntervene when posts violate guidelinesEncourage progress through grief
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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)
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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
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Pointers for moderators (2)
• Member/moderator boundary blurredModerator ignored; or member acts as mentorDominating “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-moderators
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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
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Obstacles: Challenges
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Common challenges
• The Unseen & Uninvited• Depression
Distinguishing from griefThreats of self- or other-harm
• Disruption• Deception
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The Unseen & Uninvited
• Unseen: Lurker benefits, but less than active userLess 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
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Offering hope
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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
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Adapted from Dyer, 2001; and Limbo & Wheeler, 1998.
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Depression• Threats of assault to self, others
Suicidality--? Address in guidelines Assess 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.
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Preventing suicide
• BackgroundSuicidal people have distorted thinking,
confusion, narrow perspective People with few social contacts who feel
rejected and unsupported are at more riskCrises may trigger suicidal thinking,
hopelessnessSupport from suicide-prevention sites &
hotlines can reframe perspective
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Emotional First Aid
• 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 & helpee• Respond privately to warnings (repeated death
references—ask member to clarify)• Delete posts that legitimize suicide
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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.
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After suicide or death• 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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Disruption, Deception
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Disruption (1): Broken rulesInnocent
Unaware of rule/custom (e.g. “no religion/politics”) Unaware of what might hurt (pregnancy mention) “I forgot” (? grief/depression effects on thinking) Troublesome revelations
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
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Disruption (2)• 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 expressionsAnyone “different” from typical memberAccommodate diversity without changing group
• Cliques within group; outside group or meetings• Confront off-list. Minimize on-list attention.
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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
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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
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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.
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Healing the Group
• How groups react to disruption/deceptionEmotions: angry, amused, sad, betrayed, hurt, afraid,
violated, 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
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Resources, Review, and a look ahead
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Resources (1)
• Perinatal/infant death support : asrm.orgbabyloss.comhygeia.orgmiscarriagesupport.org.nznationalshare.orgpregnancyloss.info
Yahoogroups.com, Topica.com11/6/10
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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
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Future research
• Coping strategies & support for moderators who confront challengesModerator support sites
• 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
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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.
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Thank you!
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