Parental Grief Expression in Online Support Groups

1. Parental Grief Expression in Online Support Groups Jessica Elder, LMSW, LCSW Jenna’s Corner Online Community Children’s Brain Tumor Foundation

2. Today’s Discussion • Intro to CBTF • Development of Jenna’s Corner online community • Online group participation statistics • Observations and themes • Evaluation and outcomes • Online group benefits and challenges • Implications and next steps

3. Children’s Brain Tumor FoundationNational non-profit with support programs for children, families, survivors and the bereaved. Our mission is to improve the treatment, quality of life and the long term outlook for children with brain and spinal cord tumors through research, support, education, and advocacy to families and survivors.

4. Initial Online Group Development Development Plan: • Obtained funding and designed online community • Target population: Bereaved parents/caregivers who have lost a child to a brain or spinal cord tumor • Two facilitators: Jessica Elder, LCSW from CBTF; Laurie Burke, M.S., PhD student from the University of Memphis • Groups: monthly & open for 1.5 hours • Format: live chat room in Jenna’s Corner • First group: June 2010 • Introduced bereavement groups: website, database, and outreach

5. Jenna’s Corner Online Community JC is sponsored through a generous donation by Jenna's Rainbow Foundation, an organization that supports special projects for critically ill children and their families. A place for parents, survivors, siblings, professionals and others to gain information, peer support and guidance. To join JC, follow this link and request membership http://www.cbtf.org/registration To participate in chat room discussions, follow these steps (next page):

6. 1 2 1. Visit www.cbtf.org 2. Log-in to JC

7. 3 4 3. Chat 4. Bereaved Parent Chat

8. 5 5. EnterChat Room

9. Initial Online Group Development: Facilitation Facilitation Process • Monthly advertising: instructions and reminders through emails, calendar mailings, CBTF website and bereavement facebook community • Facilitation: Welcome, introductions and summarizing content. • Topics: Parent driven

10. Online Group Participation Statistics • Evaluation Period: 6/2010-2/2012 • 18 participants from 6/2010-2/2012 (26 total) • 19 groups (26 total) • Range of participants per group: 1-7 • Mean (average number of participants per group): 3 • Regular, returning participants: 6 • Participants included 2 fathers • Range of time bereaved: approximately 2 months-11 years • Average length: 81 minutes

11. Online Group Participation Statistics Online Group Participation Pattern

12. Facilitator Observations • Participation: often driven by birthdays, anniversaries, holidays and special events • Topics: influenced by parents present and length of bereavement period • Challenges: presented differently depending on length of bereavement • Beneficial to have parents bereaved for different periods of time in the group (parents have different roles) • Parents were supportive of other parents’ needs and contributed to all topics

13. Online Group Topics Topics most frequently initiated by parents from June 2010-Feb 2012: Parental Grief (adjustment, affect on family relationships, pain and sadness, anger) Negative Social Situations and Interactions Milestones, Special Events and Holidays Surviving Sibling Grief Coping: Faith and Spirituality, Continuing Bonds, Support

14. Parental Grief Change, Adjustment and Finding Purpose “We are different than other parents-this is a new life.” “I’m not as happy as I used to be. Things have changed-it’s difficult.” “I am trying to readjust my life.” “I had purpose when caring for my son-I feel lost without him.” “Losing our child has changed our family dynamic and we don’t like it.” “I found purpose through my commitment to be a wife and mother, but don't feel it.”

15. Parental Grief Challenge of Acceptance • “Our loss is the worst…” [comparing to other types of losses] • “If I accept death, I am dishonoring my son.” • “This is our life, without my son…I can’t reach acceptance. I can’t accept this.”

16. Parental Grief Vignette: Grief and Acceptance Parent “M” was telling the group that her daughter died 2 weeks after diagnosis and she struggles with acceptance. J and D have been bereaved for longer periods of time: J: M, 2 weeks, I don't know what to say. I had 8 months. D: Wow. I just met another who lost her newborn before he reached a month. M: She had a biopsy the next day, then vitals crashed that night and emergency brain surgery. She never woke up and we took her off life support 10 days later. Laurie Burke: What a terrible ordeal to endure M: That is my biggest problem....acceptance Laurie Burke: And, you too, J, 8 months is not long at all D: We had four years with J. We feel fortunate. Laurie Burke: Yes, that four years must have helped some to prepare, D, but I also bet you were very, very busy and it must have still been hard to take it all in Jessica Elder: I think all of you have unique situations, and all have been so difficult. I'm really glad you are all here together right now M: She didn’t suffer thank God, but then she had no chance to fight either D: Yes, we were very busy. When J learned that he wouldn't make it, he accepted his fate beautifully. And I've found that other children/teens also accept their fate. They all teach us so much.

17. Parental Grief “I really miss my child, it's painful.” Members Discussed Pain of Grieving: • “I’m tired of living w/out my daughter-I’m tired of not seeing her.” • “It’s a physical separation from the kids we gave birth to.” • “We have the hardest time, when we're alone with our thoughts; alone time is no longer pleasurable for me.” • “What hurts the most is watching my son's loneliness.” • Mourning the loss of potential in children • The pain of watching other parents/children live their lives

18. Parental Grief Waiting “I feel stuck…my grief seems worse.” “Nothing has changed. When will it get better?” “I thought this got easier…I’m waiting.” “It’s been one year and my grief feels exactly the same.” Sadness and Depression • “I am disinterested in what life has to offer…” • “I find it difficult to enjoy life again.” • “I’ve thought about death to be with my child, but would never act on it due to my obligations.” • “My grief makes me negative.” • “I feel isolated.”

19. Parental Grief “My anger was with everything at first.” Triggers of Anger & Where Anger is Directed • Child’s diagnosis • Responses and reactions from others • “I’m angry when others forget about my child or don’t acknowledge her.” • GOD and/or church community • Lack of focus/progress in brain tumor research

20. Parental Grief “Life is so unfair” Anger Around What Could Have Been… • “Our children are missing out on so much.” • The children should be, could have been, etc.… • “My anger is with what cancer took away from my son.” • “How could they take his life away-his potential?” • “He should be here with us.”

21. Parental Grief Describing Grief Experience and Seeking Normalization Describing Grief An “unpredictable rollercoaster” “Grief bursts” and moments that “blind side” Specific, detailed reference to time when describing loss: “It has been 280 days since….” Is my grief normal?

22. Parental Grief “I feel so lonely” [due to grieving differently than spouse] Grief and Relationships • Grief and its effect on marriage/relationships • Relationship challenges: not receiving needed support from spouse • Differences in male/female grief • Positive effects on relationships “Our relationship has strengthened.” • Working through differences-changing expectations of spouse • “Learning that males and females grieve differently had a positive impact on our relationship.”

23. Parental Grief Vignette: Grief and Relationships This session included one father and two mothers. D and J have been bereaved for longer periods of time. The topic of male/female grief was initiated: J: I found that I grieved more during the journey and my wife did more grieving after. Laurie Burke: oh that's interesting, J M: J, me and my hubby grieve so differently Jessica Elder: M, that seems to be a very common feeling... M: in the beginning that was really hard on our marriage...the different grieving. I find that with many of the parents I talk with, sometimes one or another of the parents are upset that the grieving is different. Laurie Burke: Yes, it is a common experience that people grieve differently and that's something we could sure discuss D: That seems to be universal. My husband and I grieve differently, too. D: We have gotten used to that. Jessica Elder: It seems to take time to learn each others' grieving differences

24. Parental Grief “I think I'm moving in a positive direction” Recognition of How Grief Changes and Progresses • “Is the first year the worst?” • “Second year is just as difficult as the first, for different reasons.” • “In the second year, we realize that our loss is permanent.” • “I now have more good days than bad.” • “My grief lifted slow and steady.” [parent bereaved for 11 years] • “I’m not in a fog anymore.”

25. Parental Grief Hope and Looking for the Positive: • “I found strength from my son and how he fought cancer-I want to live by his example.” • “We learned not to take life for granted-he was taken in an instant.” • “It's essential to remember that I'm not alone.” • “Grief has shaped me.”

26. Negative Social Situations and Interactions “Not everyone gets it.” Feelings around reactions and statements from others • Anger at others due to responses, reactions, ignorance and insensitivity • Feeling rejected due to responses from others • “You're so strong” • Dissatisfaction with others’ inability to offer appropriate support • “Others have expectations for me to be OK.” • “Society’s expectations of me are overwhelming.” [in reference to dealing with the holidays]

27. Negative Social Situations and Interactions Challenges: Answering questions: “How many children do you have?” Talking about loss with family/friends: “People don’t want to hear about my sadness.” Discomfort in social situations: “Socialization is difficult-I have to pretend to be happy or OK.” What Helps: Recognizing that grief is unique and personal, and cannot be guided by the expectations of others “I learned who my real friends were and only talk to them.” “I’ve learned not to care what others think.” “It helps to lower your expectations of others.”

28. Negative Social Situations and Interactions Vignette: Frustration with Others’ Responses Three mothers discussed their frustration with how others respond to them: L: I guess the thing I hate the most is people saying how strong I am J: people just don’t get it. C: how about "I don't know how you do it?” Like we have a choice? L: yeah hate that one too L: my response was "denial" Jessica Elder: this topic has come up many times in the past, and we have even talked about writing a book to educate the public because of the large amount of ignorance... J: about people saying how "strong" you are - my husband and I like to say this about that.....when people say how strong you are its like watching someone getting tossed around in the surf at high tide on the beach and commenting that they are such a great swimmer. Not only do comments like that hurt b/c we had no choice but to walk this path but they magnify how much people do not understand our lives, our loss and what we are going through.

29. Negative Social Situations and Interactions “I like when others can allow me to talk about my child.” Supportive Responses From Others • Support from medical staff during end of life and after • Support from friends • School’s acknowledgement of child (yearbook, special event, recognition) • “I feel comforted when my son’s friends talk about him.” • “I love it when someone walks into my home and asks about my daughter.” • “I like it when others say my child’s name.”

30. Milestones, Special Days and Holidays “The fourth anniversary took my by surprise.” Challenges: Milestones and Special Days • Anticipation and fear of birthdays and anniversaries • Sadness and anger during birthdays and anniversaries (especially for newly bereaved) • Challenge of life events and milestones (watching classmates) • “She’ll never have one.” [wedding] • Family occasions: “Vacations are hard.”

31. Milestones, Special Days and Holidays Holiday Challenges Anticipating/dreading all holidays [especially newly bereaved members] Halloween is hard too [forgotten holiday] Obligation to celebrate for surviving sibling Feeling obligated to celebrate due to family pressure Mourning past love for the holidays and what they could have been like this year (son reaching the age where he would have been trick-or-treating, sitting on Santa’s lap, etc.) Watching others enjoy the holidays

32. Milestones, Special Days and Holidays “Birthdays and anniversaries are special and sacred. Not many people understand their significance.” Coping… • Discussion around how to cope • “Having a plan for the day helps.” • Staying connected to my child on special days (Christmas: fill stocking, writing letters, place at table, etc.) • Making dreaded days special • “I gave my son a pendant on the day he outlived his big brother.” • Creating memorials and fundraisers on special days help

33. Milestones, Special Days and Holidays Vignette: Coping with the Holidays Discussion Three mothers discussed the approaching holidays during a September group. J has been bereaved for 2 years while L and C have been bereaved for one year or less: J: The holidays are horrible. Jessica Elder: J, looking back, is there anything you wish you could have done differently during the holidays? L: oh I know the holidays will be hard...I have Christmas, her birthday, her death, my birthday, and her diagnosis date all within one month J: In that first year, I tried to just put one foot in front of the other, everyday, and trudge through the thick, sad fog of life. J: OMG L Jessica Elder: wow L C: J was right, you have to lower y0ur expectations of yourself. Just getting thru a day is such a challenge J: Looking back, I would not have pressured myself in any way to participate in life for the benefit of anyone but myself. L: So feeling like your just going through the motions is normal? J: I would have burned all of those f-ing (sorry again) holiday cards plastered with pictures of people’s kids as soon as they arrived. (why someone would send that to a person who has just lost a child I will never understand) J: If you are even going through the motions that's good. C: I felt Ihad to do everything the same as always for the other kids but nobody's heart was in it. I know!!! those cards!!! J: those cards. Ihate them.

34. Surviving Sibling Grief “My son isn’t happy anymore-he needs help. He misses his brother” Challenge of Observing Surviving Sibling Grief • Child/teen grief: “Is he grieving?” • Difficulty of watching surviving child grieve and suffer • “I’m worried about losing my son too…” • Pain of observing one sibling without the other: “He lost his brother and best friend.”

35. Surviving Sibling Grief “How do I know if he is OK?” Parenting/Supporting Grieving Children • Wondering if surviving children’s grief is “normal” • Questions: “Does he talk about his brother?” • Surviving child anger: “My son is taking out his anger on me and I don’t know how to help him.” • Challenges of parenting a grieving teen • Difficulty of knowing difference between normal grief and teen behavior • Supporting grieving children • Strategies: “I need to model that it’s OK to talk about his brother.”

36. Surviving Sibling Grief Hope • “Four years later, I think he's basically happy and healthy.” • Grief has positively shaped our children • Benefit of grief counseling and camps • Benefit of volunteering

37. Surviving Sibling Grief Vignette: Surviving Sibling Grief Two Mothers discuss surviving sibling grief and challenges. C has been bereaved for 4 years, while J has been bereaved for one year: J: I can see it in my son also, the anger. With him we have a hard time knowing if he is trying to 'cut the strings' so to speak or if he is grieving. Laurie Burke: With your son, it's probably a bit of both C: How old is your son? Is he the only one here with you now? J: 18 and yep. He was stuck with us the first 6 years and now... C: My son D lost his only sibling, too. He's 16. J: He is heading to college in the fall. How old was he when your son died? Driving now... C: And, yes, it's very difficult to tell the difference between grieving and normal teen stuff. C: My son was 12 when his brother died. In 6th grade. C: Four years later, I think he's basically happy and healthy. Jessica Elder: It is very hard to tell what is teen stuff, but when bereaved parents share situations there seem to be a lot of common experiences that bereaved teens share... C: Where is he going to college, and for what? J: It's difficult to watch them suffer isn't it. My son was always worried about his sister being in pain and he asked constantly from diagnosis on when she would die. Our doc was really great with him. Jessica Elder: That's good J-it's important that he was supported by so many others during this time and I'm sure it made a huge difference, even if he can't quite articulate that

38. Coping: Faith and Spirituality “I find myself praying to my child much more than GOD.” Faith, Beliefs &Religion Have Been Shaped By Loss: • “My faith has been shaped by loss.” • “I get less out of worshipping now.” • “My faith was tested.” • “I am trying to use my religion/faith, but need to re-adapt it.” • Anger toward GOD (in the beginning) • Making sense of GOD's role

39. Coping: Faith and Spirituality “Faith is a key element to my acceptance” Using Faith and Spirituality to Cope • “Faith in afterlife helps me to cope.” • “Knowing I will be with my son again is comforting.” • “I’m bothered when people don’t believe in afterlife.” • “I’m hoping for a bigger purpose. I can't cope without faith.” • Envisioning child in heaven • Comfort in knowing child is in “the next life”

40. Coping: Faith and Spirituality Vignette: Faith and Spirituality Discussion Two mothers started a discussion of the role of faith and spirituality in dealing with grief: D: I think it's the most important part. What else do we have except the belief that our children are flourishing in the next life? P: right D Jessica Elder: and spirituality is related so many things…for example, it ties in with having conversations with your child. It is behind so much of the grieving process D:Yes, it validates these conversations that we have. Laurie Burke: Are there any specific things that either of you would like to know more about it relation to spirituality's role in bereavement? Not saying I have answers but I'd like to know what answers are needed D: We who have lost our child definitely have a firsthand grasp on life after death. P: I can't live in a world without faith. I may not understand it or agree with it, but there must be a bigger purpose to it all, to what happened. If not that would be the biggest disappointment. At one compassionate friends meeting, I heard a bereaved mom say that she no longer prays to God or Jesus, just to her deceased son Laurie Burke: For those who are spiritually inclined, it is the way we make meaning, especially following something as devastating as the loss of a child P: I find that I sometimes pray to M, and Jesus D: Losing a child is such a difficult experience, and I hesitate to upset anyone's belief........sometimes we just hang on by a thread...........and I don't want to sever that for anyone. Laurie Burke: yes, true....but on the other hand, your faith might also provide strength and solace for others D: P, I, too, found myself praying to J much more than to God.

41. Coping: Continuing Bonds “Our children are always right here with us.” Continuing Bonds • Praying to child • Having conversations with child • Wishing for dreams • Looking for connections • Looking for signs • Sharing stories of feeling connected

42. Coping: Continuing Bonds Fearing loss of bond… Fear of forgetting memories Fear of time passing and children becoming further from memory Fear of forgetting any details about child Fear of others forgetting child Fear that subsequent children will cover up memories

43. Coping: Continuing Bonds “The best therapy is to never forget.” Using Continuing Bonds to Cope • Envisioning child active in parent’s life • Keeping the child alive: “We have photos everywhere.” • Writing letters • Feeling that a dying person is a connection to child • Attending special events (i.e. prom) to imagine child there.

44. Coping: Continuing Bonds Vignette: Validating Continuing Bonds Two mothers discussed how they maintain their bonds: F: I do talk to her, I ask her for signs. I want that for all of us [in my family]. My son is just so sad. Laurie Burke: Well, F, people who find maintaining a continuing bond helpful, use a variety of means to do so Laurie Burke: Some ways people keep an ongoing bond are everything from keeping close at hand a photo or other article of clothing or item that was special to the loved one, or maintaining a facebook page, or keeping and listening to a voice recording, or even simply talking to the person D: I gave my son a pendant with J’s picture on it, on the day he outlived his big brother. He wears it constantly. Jessica Elder: That's a sweet idea D-glad it helps him stay connected F: I'm not embarrassed to admit we have photos everywhere, I will talk to anyone who will listen about her. It makes me cry which bugs them but its really ok, and I sleep with her stuffed frog. Now you all know I’m strange. D: I really feel that our angel children are with us all the time. I talk to J all the time. Laurie Burke: hahaha....NO, sorry, F....you are actually quite normal! Jessica Elder: no F-not at all! You and many others do these exact same things D: You're not strange. If you DIDN'T do those things, you would be strange!!!

45. Coping: What Helps Us “My family made a promise to stick together and get through it.” Motivation • Honoring child’s wishes helps • Identifying positive experiences resulting from grief (new friendships, experiences, realizations) • Teaching others about grief: “It would help if we knew others were being educated.” • “Family is my motivation to move forward.” • “My child is my motivation to live.”

46. Coping: Support that Helps “It is essential to remember that I am not alone.” Support and Community Involvement • Staying connected with the brain tumor and cancer community • Grief resources: counseling, hospice support programs, grief camps, support groups (if specific to child loss) • Writing/journaling • Reading grief books • Church and community support • Fundraising and memorial events: “Projects help me to not feel so alone.” • Volunteering,facilitating support groups, mentoring: “It helps me to support others.”

47. Accessing Support Some Reported Challenges of Accessing Support: • “We have to schedule our grief.” (grief affects participation). • Fear of feeling worse when listening to others’ stories • Feeling as if nothing will help

48. Group Process “My grief lifted slow and steady.” How the Group Process Works: • Parents seek validation and normalization: “Is this normal?” “Did you feel this way?” “Is it strange that I…?” • Parents feel understood: “You get me.” • Parents can tell their stories, listen and provide mutual support • Seeking suggestions and answers: “How do I cope with this? ” • Parents offer hope by sharing how their grief has progressed and what has helped: “I remember feeling exactly how you felt.” “This is what helped me…” • Parents offer support to new parents/newly bereaved

49. Group Process Vignette: The group process Two newly bereaved mothers talk to a mother who has been bereaved for 5 years (G). G: J would have been 20 yesterday. On Mar. 10 we observe 5 years. That's when he died. B: Oh so close together. Hard days, I imagine. G: I'm glad they're close together. G: I'm in the midst of eleven very special days. But of course, very few people understand that. B: I guess you get them over with at the same time? K - you mentioned getting professional help for your child. Do you know of resources in your area? B: D - sounds like after 5 years, you are in a different place than some of us. Do tell what you mean about11 special days. K: I am sure we do but I never realized until now that it has all surfaced.... he misses N terribly but kept it all in G: I feel that our family has adjusted to being a family of 3. And I take many cues from my son D. I feel so much better when he's happy. G: K, it's only been 1 year. That's not very long. G: Getting through that first year is an incredible accomplishment.

50. Group Process “It’s just nice to be with people who get me.” Expressed Appreciation • “It helps to be listened to.” • “I like having a captive audience.” • “I do feel better.” • “Telling my story helps.” • “I’m glad I joined tonight-I’m not angry anymore.” • Appreciation for getting resources, information and support from facilitators and parents • Humor: finding a moment to laugh