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Plida2010 onlinegriefgroupsr2

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Plida2010 onlinegriefgroupsr2

  1. 1. Online Peer Support Groups for Pregnancy Loss and Infant Death: Research Meets Real World<br />CathiLammert, R.N.<br />National Share <br />Elizabeth A. Pector, M.D.<br />Spectrum Family Medicine<br />
  2. 2. The World in a Wide Web<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />2<br />
  3. 3. Overview: What we’ll cover<br />Structure, function, history, evolution of online support<br />Benefits and limits of online peer support<br />Effects of online setting on individual and group<br />Leadership: establish & facilitate a forum<br />Challenges of online support<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />3<br />
  4. 4. Structure, Function, History, Evolution<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />4<br />
  5. 5. Structure & Function<br />Bereavement: 10% of all online groups<br />Only health conditions (43%) & weight loss (13%) are more popular<br />23% of Yahoo loss groups are for child loss<br />Demographics & use patterns<br />Mainly: North American/European, young, women, loss of child, less religious<br />1 hour/day average use<br />Fewer use chats than email groups<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />5<br />
  6. 6. History & Evolution<br />1980s: Usenet Newsgroups<br />1990s: Listservs, Email lists, Boards/Forums, Virtual Environments, Chats<br />2000s: Social media/multimedia<br />Blogs<br />Myspace, Facebook, Twitter, etc.<br />Skype/Vonage etc.: Virtual + F2F<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />6<br />
  7. 7. Evolution: what’s new?<br />New formats: social media, more interactive multimedia websites<br />New technology (smart phones, Skype, digital video/photos, 3D ultrasound)<br />New losses: fertility, multiples, prenatal diagnosis, fetal surgery<br />“Global village”: age, racial, ethnic, social, spiritual, language diversity<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />7<br />
  8. 8. Benefits & Risks: Good, Bad, & Ugly Online<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />8<br />
  9. 9. Benefits of online groups<br />Low cost, convenient 24/7<br />Empowerment<br />Information, recognition<br />Enhanced well-being, confidence, control<br />Improved social & emotional support<br />Less isolation, stress, depression, pain, health care utilization<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />9<br />
  10. 10. Risks & Limits of online groups<br />Miscommunication<br />Privacy breach, identity theft, cyberstalking<br />Information/email overload<br />Inaccurate medical info, late diagnosis<br />Crisis management<br />NO effect on course of grief; little on health<br />Adjunct to private counseling/F2F network<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />10<br />
  11. 11. Effects of online setting on peer support<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />11<br />
  12. 12. Online vs. face-to-face<br />Both provide:<br />Empathy & support<br />Information & advice<br />Sense of community<br />Shared experiences <br />Self-disclosure<br />Catharsis<br />Learning from peers & mentors<br />Helping & advocacy<br />Challenge distorted thinking (Limited)<br />Unique online:<br />Asynchronous or chat<br />Social equality<br />About 45% lurk<br /><ul><li>No nonverbal cues</li></ul>Writing: therapeutic; time to think, archived<br />Anonymity:<br />Hides disturbing traits<br />Loosens inhibitions<br />intimacy<br /> anger<br />Enables deception<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />12<br />
  13. 13. Challenges online vs. F2F<br />Online groups: members share deeply about sensitive topics, but are alone with emotions.<br />F2F groups: nonverbal cues, greater depth & breadth of comments, more interaction<br />A few can dominate; what does silence mean?<br />Hard to schedule chats<br />Fast-paced chats with “texting language.”<br />Multiple threads or themes at once, concurrent private IM conversations.<br />More conflict & negative peer ratings online.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />13<br />
  14. 14. Challenges of culture<br />Literacy: limited English or grammar; slang<br />Cultural competence <br />Respect differences <br />Work to overcome barriers<br />Understand cultural support systems<br />Understand influence of culture on behaviors, health practices<br />Understand cultural taboos on topics for discussion<br />Expressions of religion/spirituality<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />14<br />
  15. 15. Individual, interpersonal & group effects online<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />15<br />
  16. 16. Effects of online setting:Individual, Interpersonal, Group<br />Relationship-building<br />How individuals act and react online<br />How interpersonal interactions occur online<br />How individual & interpersonal effects impact group welfare<br />How people integrate on- and offline relationships<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />16<br />
  17. 17. Effects of Online Setting:Individual<br />Personality affects narrative disclosure style<br />Neurotic: self-focus, good-to-bad sequence, ruminative<br />Conscientious: brief, factual, death words, less meaning<br />Extraversion: “social” (support, intimacy, advice), growth<br />Psychopathology: some unsuitable for group<br />Psychosis (schizophrenia, bipolar in manic phase)<br />Personality disorder (borderline, schizoid, factitious, extreme OCD)<br />Actively suicidal/homicidal<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />17<br />
  18. 18. Effects of Online Setting:Individual<br />Gender may affect expression<br />Women focus on emotion, men on info<br />Less difference in mixed-gender groups<br />Depression may be more prevalent in online group participants than general population.<br />Individual may feel distress or optimism in reading stories, comparing self with others<br /> Some may feel discomfort in reading good-to-bad, “hopeless” posts<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />18<br />
  19. 19. Effects of Online Setting:Interpersonal<br />Nonverbal cues absent (lose up to 90% of meaning in communication)<br />Possibility for misinterpretation of words<br />Inaccurate mental image of peer<br />Delayed response may be distressing<br />Objectification of others<br />Less consideration of peer’s state of mind<br />Easy to express hostility toward a screen<br />Rants, flames<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />19<br />
  20. 20. Effects of Online Setting:Group<br />Tone of group influenced by majority gender<br />People at different places in grief<br />Lay leaders emerge if no official leader<br />Lurkers read, benefit, don’t contribute<br />Group division: choosing sides for/against opinions or abusive/deceptive members.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />20<br />
  21. 21. Theories of group function<br />Yalom’s factors present online<br />hope, universality, cohesiveness, catharsis, information, interpersonal learning, helping.<br />Closed-end groups: Tuckman theory<br />Forming, storming, norming, performing, adjourning (? Transforming)<br />Open-end groups:<br />people come and go, anonymous, invisible, lower commitment than face-to-face<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />21<br />
  22. 22. Tuckman’s Theoryof Group Development<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />22<br />12-4a<br />Figure 12-2a<br />Performing<br />Transforming or Adjourning<br />Norming<br />Storming<br />Return toIndependence<br />Forming<br />Dependence/interdependence<br />Independence<br />From McGraw-Hill<br />
  23. 23. Leadership 1: how tostart a group<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />23<br />
  24. 24. Establishing an online group<br />Decisions<br />Structure: Forum/Board, email, chat<br />Private vs. publicly accessible<br />Multiple forums vs. one group<br />Separate “pity party/venting” or off-topic<br />Inclusion/exclusion criteria<br />Find resources for those you DON’T serve<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />24<br />
  25. 25. Establishing an online forum<br />Software resources<br />Website software: contact Webmaster<br />Yahoogroups or Topica<br />Free/fee forum software<br />Online guides to establishing group<br />Madara<br />Grohol<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />25<br />
  26. 26. Memorial Sites & Social Networking<br />Memorial sites: angels, ultrasound<br />Efforts to make the deceased child “real”<br />Limits: angels imaginary; u/s biological<br />Moms post > dads; for sons > dtrs; messages to child; not much gender difference evident.<br />Deceased-user sites (Facebook)<br />Posted “conversations” continue relationship<br />Social support via community of grievers<br />“Rubber-neckers”: distant or no relationship<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />26<br />
  27. 27. Organization Website Model<br />Consider user equipment, education, computer literacy, <br />disability<br />
  28. 28. Promoting your group<br />How big do you want to be?<br />Options include:<br />Listing in “google groups”<br />American Self-Help Group database, NORD (raredisorders.org)<br />Conferences, f2f groups<br />Twitter, LinkedIn, Facebook, topical websites/groups, and members.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />28<br />
  29. 29. Ending a group<br />Allow period for farewells<br />Provide list of similar groups and non-group resources<br />Encourage a suitable member to establish another group elsewhere<br />Summarize positive growth in group over its tenure<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />29<br />
  30. 30. Leadership 2: Guide your flock<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />30<br />
  31. 31. Types of group leadership<br />Designated leader/moderator<br />In closed-end groups, often presents or directs discussion on a specific topic<br />In open-end groups, may discuss specific topic or merely facilitate conversation<br />Unmoderated<br />Natural leaders emerge<br />Natural leaders often mimic the skills of trained facilitators. <br />11/6/10<br />Lammert and Pector PLIDA 2010<br />31<br />
  32. 32. Moderator knowledge base<br />Coping process for your population<br />Understand meaning of situation to parents<br />Learn cultural proficiency, avoid stereotypes<br />Perinatal psychology<br />Grief for lack of expected outcome<br />Signs of PPD, PTSD, Complex Grief<br />Limits of group support:<br />Peer groups do NOT provide psychotherapy!<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />32<br />
  33. 33. Tech talk: Cyber-language<br />Conventions, emoticons, shorthand<br />DON’T SHOUT IN ALL CAPITALS!<br />Smileys  Angels ^i^, ^j^<br />Hugs (((Jen))) {{{Room}}}, <br />Hugs & kisses () & **<br />DD, DS, DH, DHAC, SIL, MIL, FIL<br />LOL, ROTFL, IMM, OTOH, FWIW, TTYL, #$(!<br />Text- and twitter-talk—hard to understand<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />33<br />
  34. 34. Moderating online group<br />Moderator roles and responsibilities<br />Assess personal readiness to moderate<br />Understand online interaction<br />Establish guidelines/terms of service<br />Monitor posts often<br />Intervene when posts violate guidelines<br />Encourage progress through grief<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />34<br />
  35. 35. Are you a good moderator?<br />Balanced between self and group needs<br />Empathic, inclusive (good listener, positive attitude toward members)<br />Strong, able to withstand conflict, emotion<br />Flexible, creative in approach<br />Impartial: support group agenda, not own.<br />Focus on process, trust group & process<br />Humor, and distance from own loss(es)<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />35<br />
  36. 36. Pointers for Moderators (1)<br />Openness (intimate/deep, intense, easier for embarrassing topics). <br />Easy to share info<br />Hard to identify & address hidden emotions<br />Takes time to develop group, cohesion is a challenge, hard to deepen discussion (F2F in addition to online group enhances cohesion)<br />Conflicts escalate quickly, hard to defuse<br />Flirtatious, passive/aggressive, defensive behavior<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />36<br />
  37. 37. Pointers for moderators (2)<br />Member/moderator boundary blurred<br />Moderator ignored; or member acts as mentor<br />Dominating “self-designated helper”<br />Hard to provide structure and focus<br />Recognizing distress/risk & intervening—later<br />Balancing individual/group needs<br />Private warnings when guidelines are violated<br />Discipline: temporary to permanent banishment<br />Co-moderators in different locales a good idea<br />Private chat between co-moderators<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />37<br />
  38. 38. Sample guidelines<br />The group is welcoming, supportive, and nonjudgmental.<br />Moderators don’t intervene unless guidelines are violated.<br />Everyone’s situation is unique. There’s no “right way” to cope.<br />Don’t tell others how to cope. Do share what helped you.<br />Everyone’s story is important. Not worse/better; different.<br />We’d like you to share, but you don’t have to.<br />We aim for equal time: please don’t dominate or interrupt.<br />Respect differences: situations, opinions, feelings.<br />Avoid flames, rants, personal attacks, obscenity. <br />Be honest but careful. Some aren’t who they seem to be. <br />If you suspect dishonesty or identity theft, tell moderator. <br />Provide validating information on moderator request.<br />Meet other members in public; notify someone of meeting.<br />The group is for peer support, not professional therapy. Referrals to appropriate professionals may be available.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />38<br />
  39. 39. Obstacles: Challenges<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />39<br />
  40. 40. Common challenges<br />The Unseen & Uninvited<br />Depression<br />Distinguishing from grief<br />Threats of self- or other-harm <br />Disruption<br />Deception<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />40<br />
  41. 41. The Unseen & Uninvited<br />Unseen: Lurker benefits, but less than active user<br />Less social benefit<br />Less satisfied<br />Lurkers in health support groups are older, more recently diagnosed, lower mental well-being<br />Uninvited: Facebook “Emotional Rubberneckers” <br />Sometimes Appreciated<br />Sometimes Annoying<br />Genuinely upset vs. seeking attention/voyeur<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />41<br />
  42. 42. Offering hope<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />42<br />
  43. 43. Depression vs. Grief<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />43<br />Adapted from Dyer, 2001; and Limbo & Wheeler, 1998.<br />
  44. 44. Depression<br />Threats of assault to self, others<br />Suicidality--? Address in guidelines<br />Assess risk: Plan? Means avail? Support? Consult local mental health professional (on-call advisor) or ER.<br />Use local and online resources, refer to private counseling, call member’s ER, local police or 911.<br />Consider a call to your own local police with info on email address, ISP provider, IP address.<br />Homicidality/threat to partner, baby, others<br />Psychiatrist duty to protect (Tarasoff) ? Moral “duty to intervene.” Assess threat, refer, warn victim if possible, notify police, protective services if possible, etc. <br />11/6/10<br />Lammert and Pector PLIDA 2010<br />44<br />
  45. 45. Preventing suicide<br />Background<br />Suicidal people have distorted thinking, confusion, narrow perspective <br />People with few social contacts who feel rejected and unsupported are at more risk<br />Crises may trigger suicidal thinking, hopelessness<br />Support from suicide-prevention sites & hotlines can reframe perspective<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />45<br />
  46. 46. Emotional First Aid<br />Educate members on PPD, PTSD, depression<br />Warm, empathic, nurturing, hopeful setting<br />Stable moderator presence; check posts often<br />If needed, give referrals to online suicide-prevention sites, hotlines, 1:1 chat help. (suicide.org, hopeline.com, samaritans.org)<br />Anonymity important for helper & helpee<br />Respond privately to warnings (repeated death references—ask member to clarify)<br />Delete posts that legitimize suicide<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />46<br />
  47. 47. Preventing suicide<br />Abstracted sample from JourneyofHearts.org<br />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….<br />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.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />47<br />
  48. 48. After suicide or death<br />Limit announcements/story (risk of contagion)<br />Moderator may wish to only notify of death, not cause<br />Start (balanced) memorial thread and/or page<br />Don’t idealize/romanticize deceased or death<br />Allow online ventilation for grief<br />Share resources for grief after suicide or death<br />Delete posts that legitimize/promote suicide<br />Question: reveal identity of individual to group<br />Question: conveying condolences to survivors<br />Self-care for moderator important. <br />11/6/10<br />Lammert and Pector PLIDA 2010<br />48<br />
  49. 49. Disruption, Deception<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />49<br />
  50. 50. Disruption (1): Broken rules<br />Innocent<br />Unaware of rule/custom (e.g. “no religion/politics”)<br />Unaware of what might hurt (pregnancy mention)<br />“I forgot” (? grief/depression effects on thinking)<br />Troublesome revelations<br />Deliberate<br />Cyberstalking (individual, or vs. group purpose) http://www.ncvc.org/ncvc/main.aspx?dbName=DocumentViewer&DocumentID=32458<br />Identity theft http://www.ftc.gov/bcp/edu/microsites/idtheft/<br />Trolls & Fakers <br />11/6/10<br />Lammert and Pector PLIDA 2010<br />50<br />
  51. 51. Disruption (2)<br />Personality, psychiatric or substance disorder<br />Multiple complaints about a member<br />Group welfare should not be sacrificed for 1 member<br />Dismiss/ban/moderate; Debrief? (Watch confidentiality)<br />Offer other support options to banned. Delete posts?<br />Alternative lifestyle or expressions<br />Anyone “different” from typical member<br />Accommodate diversity without changing group<br />Cliques within group; outside group or meetings<br />Confront off-list. Minimize on-list attention.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />51<br />
  52. 52. Deception (1)<br />Deception: <br />“Fun Fakers” and “Munchhausen by Modem”<br />Clues: Facts don’t fit, “too good/bad to be true”<br />Investigation: Truth may be stranger than fiction! <br />Confrontation: private, then public<br />Fraud<br />Beware requests for money, baby stuff, photos<br />Suspect: drama, complications, many kids/multiples<br />Father sometimes unaware of faked pregnancy<br />It is better to support a faker than to deny support to someone real—Maureen Boyle, MOST<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />52<br />
  53. 53. Deception (2)<br />Trolls may: cause irritation disrupt an online group, steal money, build false hopes, abuse children. 2 main types:<br />people who have the psychological need to feel good by making others feel bad. <br />people who pretend to be someone that they are not - they create personae that you think are real, but they know is fictitious.<br />Source: teamtechnology.co.uk<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />53<br />
  54. 54. Clues to trolls/fakers<br />Posts duplicate material elsewhere on Internet (health sites) <br />Characteristics of the “illness” are described as caricatures <br />Near-fatal illness alternates with miraculous recovery<br />Claims are fantastic, contradicted by later posts, or disproved <br />Continual drama in poster’s life--when other members earn attention (Caution: Truth sometimes IS stranger than fiction!)<br />Blasé attitude about crises <br />Others writing on poster’s behalf (family, friends) have same text style. <br />Lesson: members must balance empathy with circumspection. <br />Source: Marc D. Feldman.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />54<br />
  55. 55. Healing the Group<br />How groups react to disruption/deception<br />Emotions: angry, amused, sad, betrayed, hurt, afraid, violated, embarrassed, distrusting<br />Perpetrator may: quit, claim innocence, get angry at group, or make fun of other members for gullibility<br />Some groups break apart, or split into two camps<br />Some still want to believe the deceiver<br />Re-form & move on; may delete posts by perpetrator.<br />Help remaining members react<br />Limited in-group discussion; “take it outside.”<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />55<br />
  56. 56. Resources, Review, and a look ahead<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />56<br />
  57. 57. Resources (1)<br />Perinatal/infant death support : <br />asrm.org<br />babyloss.com<br />hygeia.org<br />miscarriagesupport.org.nz<br />nationalshare.org<br />pregnancyloss.info<br /> Yahoogroups.com, Topica.com<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />57<br />
  58. 58. Resources (2)<br />Madara http://www.mentalhelp.net/selfhelp/selfhelp.php?id=863<br />Grohol http://psychcentral.com/howto.htm<br />Sulerhttp://www-usr.rider.edu/~suler/psycyber/psycyber.html<br />Munro http://www.kalimunro.com/article_conflict_online.html<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />58<br />
  59. 59. Future research<br />Coping strategies & support for moderators who confront challenges<br />Moderator support sites<br />Social media and loss support<br />Memorial sites, deceased-user sites<br />Privacy risks with social media<br />How online loss documents may affect parents or siblings in future<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />59<br />
  60. 60. Summary<br />Online groups began 30 years ago and continue to evolve<br />Unique aspects of online setting affect interaction<br />Moderators need new skills for online work—these enhance F2F work<br />There are limited benefits, some risks, and manageable challenges.<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />60<br />
  61. 61. Thank you!<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />61<br />

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