1. Online Peer Support Groups for Pregnancy Loss and Infant Death: Research Meets Real World CathiLammert, R.N. National Share Elizabeth A. Pector, M.D. Spectrum Family Medicine
2. The World in a Wide Web 11/6/10 Lammert and Pector PLIDA 2010 2
3. 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 Lammert and Pector PLIDA 2010 3
5. 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 Lammert and Pector PLIDA 2010 5
6. History & Evolution 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 + F2F 11/6/10 Lammert and Pector PLIDA 2010 6
7. 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 Lammert and Pector PLIDA 2010 7
9. Benefits of online groups 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 11/6/10 Lammert and Pector PLIDA 2010 9
10. Risks of online groups Miscommunication: Arguments, rants, personal attacks Misinterpretation of posts or of delays Privacy breach, identity theft, cyberstalking Information/email overload Inaccurate medical info, late diagnosis Crisis management 11/6/10 Lammert and Pector PLIDA 2010 10
11. Effects of online setting on peer support 11/6/10 Lammert and Pector PLIDA 2010 11
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13. 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 Lammert and Pector PLIDA 2010 13
14. 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 Lammert and Pector PLIDA 2010 14
16. Effects of online setting:Individual, Interpersonal, Group 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
17. 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 Lammert and Pector PLIDA 2010 17
18. Effects of Online Setting:Individual 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 “Bad-to-good” narratives preferred; discomfort in reading good-to-bad, “hopeless” posts 11/6/10 Lammert and Pector PLIDA 2010 18
19. Effects of Online Setting:Interpersonal 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 11/6/10 Lammert and Pector PLIDA 2010 19
20. 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 Lammert and Pector PLIDA 2010 20
21. Theories of group function Yalom’s factors present online hope, universality, cohesiveness, catharsis, information, interpersonal learning, helping. Closed-end groups: Tuckman theory Forming, storming, norming, performing, adjourning (? Transforming) Open-end groups: people come and go, anonymous, invisible, lower commitment than face-to-face 11/6/10 Lammert and Pector PLIDA 2010 21
22. Tuckman’s Theoryof Group Development 11/6/10 Lammert and Pector PLIDA 2010 22 12-4a Figure 12-2a Performing Transforming or Adjourning Norming Storming Return toIndependence Forming Dependence/interdependence Independence From McGraw-Hill
23. Leadership 1: how tostart a group 11/6/10 Lammert and Pector PLIDA 2010 23
24. Establishing an online group 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 24
25. Establishing an online forum Software resources Website software: contact Webmaster Yahoogroups or Topica Free/fee forum software Online guides to establishing group Madara Grohol 11/6/10 Lammert and Pector PLIDA 2010 25
26. Memorial Sites & Social Networking Memorial sites: angels, ultrasound Efforts 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 11/6/10 Lammert and Pector PLIDA 2010 26
28. 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 groups Twitter, LinkedIn, Facebook, topical websites/groups, and members. 11/6/10 Lammert and Pector PLIDA 2010 28
29. 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 Lammert and Pector PLIDA 2010 29
31. 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 Lammert and Pector PLIDA 2010 31
32. Moderating online group 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 11/6/10 Lammert and Pector PLIDA 2010 32
33. 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 Lammert and Pector PLIDA 2010 33
34. Moderator knowledge base Basics: Technology, Group function Coping process for your population Understand meaning of situation to parents Learn cultural proficiency, avoid stereotypes Perinatal psychology Grief 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 34
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 11/6/10 Lammert and Pector PLIDA 2010 36
37. Pointers for moderators (2) Member/moderator boundary blurred Moderator ignored; or member as mentor Dominating 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 Lammert and Pector PLIDA 2010 37
38. 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 Lammert and Pector PLIDA 2010 38
40. Common challenges The Unseen & Uninvited Depression Distinguishing from grief Threats of self- or other-harm Disruption Deception 11/6/10 Lammert and Pector PLIDA 2010 40
41. The Unseen & Uninvited 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 11/6/10 Lammert and Pector PLIDA 2010 41
43. Depression vs. Grief 11/6/10 Lammert and Pector PLIDA 2010 43 Adapted from Dyer, 2001; and Limbo & Wheeler, 1998.
44. 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 Lammert and Pector PLIDA 2010 44
45. Preventing suicide Background Suicidal 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 11/6/10 Lammert and Pector PLIDA 2010 45
46. Preventing suicide Emotional first aid Give 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 11/6/10 Lammert and Pector PLIDA 2010 46
47. 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.htmlThe 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 47
48. After suicide Hsiung Limit 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 11/6/10 Lammert and Pector PLIDA 2010 48
50. 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 Lammert and Pector PLIDA 2010 50
51. 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 meetings Confront off-list. Minimize on-list attention. 11/6/10 Lammert and Pector PLIDA 2010 51
52. 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 Lammert and Pector PLIDA 2010 52
53. 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 Lammert and Pector PLIDA 2010 53
54. 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 Lammert and Pector PLIDA 2010 54
55. Healing the Group How groups react to disruption/deception Emotions: 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 55
59. Future research 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 59
60. 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 Lammert and Pector PLIDA 2010 60
Stats from: Van derHouwen K, Stroebe M, Schut H, Stroebe W, van den Bout J. Online mutual support in bereavement: An empirical examination.
Fluid boundaries: many more varied individuals than similar in some groups.
For convenience, empowerment: Pector & Hsiung, Barak.For no effect on course of grief & use as adjunct to private counseling and f2f network: Van derHouwen K, StroebeM, Schut H, Stroebe W, van den Bout J. Online mutual support in bereavement: an empirical examination. Computers in Human Behavior 26(2010):1519-1525.Forte AL, Hill M, Pazder R, Feudtner C. Bereavement care interventions: a systematic review. BMC Palliative Care 2004;3:3. 1-14.Eysenbach G, Powell J, Englesakis M, Rizo C, Stern A. Health related virtual communities and electronic support groups: systematic review of the effects of online peer to peer interactions . BMJ 2004; 328 : 1166 .
Pector, Hsiung.Gary, J. Cultural and global linkages of emotional support through online support groups. In: Bloom JW and Walz GR, eds., Cybercounseling and Cyberlearning, An Encore. 2004, 219-245.Gary JM, Remolino L. Coping with loss and grief through on-line support groups. In: Bloom JW and Walz G, eds. Cybercounseling and Cyberlearning: Strategies and Resources for the Millenium. 2000. 95-113.
Bold white most important aspects. For moderators: the intimacy, anger & lack of nonverbal cues makes it hard to anticipate, and sometimes to recognize, problems. RE: Therapeutic writing: Pennebaker’s work since 1980s. Experimental therapeutic writing assignments with CBT principles: some have shown with therapeutic writing assignments improvement in PTSD and/or grief measures. Most recently: Van derHouwen K, Schut H, van den Bout J, Stroebe M, Stroebe W. The efficacy of a brief internet-based self-help intervention for the bereaved, Behaviour Research and Therapy (2010). In press. Writing decreased emotional loneliness & increased positive mood, but didn’t alter grief or depressive symptoms. Lurkers reviewed later in talk.
Owen JE, Bantum EO, Golant M. Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors. Psycho-Oncology 2009;18:144-155.Gary JM. Cultural and Global linkages of emotional support through online support groups.
Gary JM. Cultural and Global linkages of emotional support through online support groups. Gary JM, Remolino L. Coping with loss and grief through on-line support groups. In: Bloom JW and Walz G, eds. Cybercounseling and Cyberlearning: Strategies and Resources for the Millenium. 2000. 95-113.
Re: personality effects: some evidence that people in online groups may be more depressed than average. (Pector & Hsiung, Katherine Gold unpublished)Psychopathology: Yalom, Pector & HsiungGender: Mo et al, Musambira et al. Musambira GW, Hastings SO, Bereavement, gender and cyberspace: a content analysis of parents’ memorials to their children. Omega 2006-2007;54(4):263-279.Mo PKH, Malik SH, Coulson NS. Gender differences in computer-mediated communication: a systematic literature review of online health-related support groups. Patient education and counseling 2009;75:16-24. Disclosure: Baddeley JL, Singer JA. Telling losses: personality correlates and functions of bereavement narratives. Journal of Research in Personality 2008;42:421-438. Conscientious: brief, factual, less meaning-making. Neuroticism: self-focused, negative, present-tense; Extraversion more socially oriented narratives.
Re: personality effects: some evidence that people in online groups may be more depressed than average. (Pector & Hsiung)Psychopathology: Yalom, Pector & HsiungGender: Musambira GW, Hastings SO, Bereavement, gender and cyberspace: a content analysis of parents’ memorials to their children. Omega 2006-2007;54(4):263-279.Mo PKH, Malik SH, Coulson NS. Gender differences in computer-mediated communication: a systematic literature review of online health-related support groups. Patient education and counseling 2009;75:16-24. Disclosure: Baddeley JL, Singer JA. Telling losses: personality correlates and functions of bereavement narratives. Journal of Research in Personality 2008;42:421-438. Conscientious: brief, factual, less meaning-making. Neuroticism: self-focused, negative, present-tense; Extraversion more socially oriented narratives.
Yalom ID, Leszcz M. The theory and practice of group psychotherapy, 5th edition. Basic Books, New York, 2005.
It takes more motivation to visit a forum or a scheduled chat rather than passively receiving email.
Capitulo KL. Perinatal grief online. MCN AM J Matern Child Nurs. 2004 Sep-Oct;29(5):305-11.Keane, H. Foetal personhood and representations of the absent child in pregnancy loss memorialization. Feminist Theory 2009;10:153. Musambira GW, Hastings SO, Bereavement, gender and cyberspace: a content analysis of parents’ memorials to their children. Omega 2006-2007;54(4):263-279.DeGroot J. Reconnecting with the dead via facebook: examining transcorporeal communication as a way to maintain relationships. Dissertation Ohio University 2009.Per DeGroot, the deceased-user sites play a role in the grief process. Other articles: Katims L. Grieving on Facebook: How the site helps people. Time, 1/5/10.Miller L. R.I.P. on Facebook: the uses and abuses of virtual grief. Newsweek, 2/17/10.Rankin B. Loss and Facebook: how social media affects grief. Beaumont Enterprise, 8/17/10.Van derLeun J, Using Facebook to Grieve, aolhealth.com, 7/23/10. Castro L, Gonzalez VM. After-life presence on Facebook: initial analysis of cases within the Mexican culture. Hieftje, K. The role of social networking sites as a medium for memorialization in emerging adults. Dissertation Indiana University 2010
Gary, J. Cultural and global linkages of emotional support through online support groups. In: Cybercounseling and Cyberlearning, An Encore. Bloom JW and Walz GR, eds., 2004, 219-245.MadaraGrohol
Gary, J. Cultural and global linkages of emotional support through online support groups. In: Cybercounseling and Cyberlearning, An Encore. Bloom JW and Walz GR, eds., 2004, 219-245.MadaraGrohol
Technology: Madara, Grohol, Yalom ID, Leszcz M. The theory and practice of group psychotherapy, 5th edition. Basic Books, New York, 2005.
Gary, JM. Cultural and global linkages of emotional support through online support groups. Personal observations in online groups.
Owen JE, Bantum EO, Golant M. Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors. Psycho-Oncology 2009;18:144-155.
Guidelines: adapted from SHARE and Pector & Hsiung.
Van Uden-Kraan CF, Drossaert CHC, Taal E, Seydel ER, van de Laar MAFJ. Self-reported differences in empowerment between lurkers and posters in online patieint support groups. JMIR 2008;10(2):e18.
Gilat I, Shahar G. Suicide prevention by online support groups: an action theory-based model of emotional first aid. Archives of suicide researc 2009;13(1):52-63.
Gilat I, Shahar G. Suicide prevention by online support groups: an action theory-based model of emotional first aid. Archives of suicide researc 2009;13(1):52-63.
Hsiung RC. A suicide in an online mental health support group: reactions of the group members, administrative responses, and recommendations. Cyberpsychology & Behavior, 2007;10(4):495-500.Pector impression: protect confidentiality of group and of what was shared in group prior to death; terminate online access via the deceased’s account login. Express sorrow to family in rather generic terms, emphasizing positive aspects of the deceased.
http://www.ncvc.org/ncvc/main.aspx?dbName=DocumentViewer&DocumentID=32458 on Cyberstalking from National Center for Victims of Crime.FTC on identity theft
http://www.nytimes.com/2008/08/03/magazine/03trolls-t.html?_r=1&oref=slogin New York Times, “The Trolls Among Us.”http://www.teamtechnology.co.uk/troll.htm Beware the Troll. http://www.teamtechnology.co.uk/troll-tactics.html Tactics used by Trolls.
