Plida2010 onlinegriefgroupsr1

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  • 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.
  • Dyer
  • Tarasoff: http://www.apa.org/monitor/julaug05/jn.html
  • 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.
  • Tarasoff: http://www.apa.org/monitor/julaug05/jn.html
  • 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.
  • http://www.selfhelpmagazine.com/articles/chronic/faking.html
  • Feldman
  • Geller PA, Psaros C, Kerns D. Web-based resources for health care providers and women following pregnancy loss. JOGNN 2006;35(4):523-532.
  • Geller PA, Psaros C, Kerns D. Web-based resources for health care providers and women following pregnancy loss. JOGNN 2006;35(4):523-532.
  • Plida2010 onlinegriefgroupsr1

    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 />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 />9<br />
    10. 10. Risks of online groups<br />Miscommunication:<br />Arguments, rants, personal attacks<br />Misinterpretation of posts or of delays<br />Privacy breach, identity theft, cyberstalking<br />Information/email overload<br />Inaccurate medical info, late diagnosis<br />Crisis management<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; fast-paced chats.<br />Computer/connection difficulties; privacy<br />Multiple threads or themes at once<br />More conflict & negative peer ratings. <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 existence, relevance & appropriateness of indigenous support systems<br />Understand influence of culture on behaviors, health practices<br />Understand cultural taboos on topics for discussion<br />Spirituality can be both positive & negative<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 />Prompt intimacy<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 />“Bad-to-good” narratives preferred; 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 />No nonverbal cues (which contribute 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 abusive or 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 lost child “real”<br />Limits: angels imaginary; u/s biological<br />Moms post > dads; 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 found 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, ensuring all members have chance to be heard<br />Unmoderated<br />In online groups or self-help groups, natural leaders emerge<br />Natural leaders often mimic the actions of trained facilitators in other groups<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />31<br />
    32. 32. Moderating online group<br />Moderator roles and responsibilities<br />Assess personal readiness to moderate<br />Understand online interaction, cultural competence<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 />32<br />
    33. 33. 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 />33<br />
    34. 34. Moderator knowledge base<br />Basics: Technology, Group function<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 />34<br />
    35. 35. Tech talk: Cyber-language<br />Conventions, emoticons, shorthand<br />DON’T SHOUT IN ALL CAPITALS!<br />Smileys  Angels ^i^, ^j^<br />Hugs (((Jen))) {{{Room}}}, Hugs & kisses () & **<br />DD, DS, DH, DHAC, SIL, MIL, FIL<br />LOL, ROTFL, IMM, OTOH, FWIW, TTYL, #$(!<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 as mentor<br />Dominating member may overrule moderator<br />Hard to provide structure and focus<br />Recognizing distress/risk & intervening<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: Lurkers benefit, but less than active<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 />Depression: Threats of assault to self, others<br />Suicidality--? Address in guidelines<br />Assess risk: Plan? Means avail? Support? Consult local mental health professional or ER.<br />Use local and online resources, private counseling referral, call ER or 911 for member, or local police<br />Online: best to call local police with info on email address, ISP provider, IP address.<br />Homicidality/threat to partner, baby, others<br />Psychiatrist duty to protect (Tarasoff) Assess threat, refer, warn victim, notify police, protective services 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 />Crises may trigger suicide<br />People with few social contacts who feel rejected and unsupported are at more risk<br />Support from suicide-prevention & other groups, can reframe perspective<br />11/6/10<br />Lammert and Pector PLIDA 2010<br />45<br />
    46. 46. Preventing suicide<br />Emotional first aid<br />Give info: referrals to online suicide-prevention sites, hotlines, 1:1 chat help. (suicide.org, hopeline.com, samaritans.org)<br />Educate members on PPD, PTSD, depression<br />Warm, empathic, nurturing, hopeful setting<br />Stable moderator presence; check posts often<br />Delete posts that legitimize suicide<br />Anonymity important for helper & helpee<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<br />Hsiung<br />Limit announcements (risk of contagion)<br />Start (balanced) memorial thread and/or page<br />Don’t idealize/romanticize the deceased or death<br />Allow online ventilation for grief<br />Share resources for grief after suicide<br />Delete posts that legitimize suicide<br />Question: reveal identity of individual to group<br />Question: conveying condolences to survivors<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)<br />Disruption: Broken rules (respect, honesty)<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 />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 />Disruption<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. Delete posts?<br />Alternative lifestyle, language style, dress<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, 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 />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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