Parental Grief Expression in Online Support Groups

Parental Grief Expression in Online Support Groups
Jessica Elder, LMSW, LCSW Jenna’s Corner Online Community Children’s Brain Tumor Foundation Intro: Welcome. I’m Jessica Elder. I’m a clinical social worker and work part time at the Children’s Brain Tumor Foundation, where I’ve been managing support programs for bereaved parents. I also have a full time job working for a child development agency, Southwest Human Development. Before I begin, I’d like to have an understanding of who is in the audience. Can you raise your hand if you are a bereaved parent? Professional? Thank you. I am glad you are joining us here today. Please feel free to ask questions, share information and participate throughout the presentation.

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 To start today’s discussion, I’ll be giving you a quick introduction to CBTF and JC. I’ll be discussing the initial development of the online community and support groups, review some general statistics about group participation, review observations and themes that were identified throughout the groups, discuss an evaluation tool I created and the outcomes of the evaluation, review the benefits and challenges of participating in an online group, and discuss implications and next steps.

Children’s Brain Tumor Foundation National 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. CBTF is a national organization that provides support programs for children diagnosed with brain/spinal cord tumors and their families, as well as brain tumor survivors and the bereaved. Our bereavement program consists of counseling and resources, a mentoring program, a private facebook group, an annual 1 day conference ,and the online support groups.

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 In 2009, we decided to start the process of developing an online community. With our goal to provide services on a national level, and online community seemed like a good fit. We came up with a proposal, designed the community with the help of an IT company, and obtained funding from an organization called Jenna’s corner. Once the online community was in place in 2010, I decided that I would use it to facilitate live, online support groups for bereaved parnents.

Jenna’s Corner Online Community
A place for parents, survivors, siblings, professionals and others to gain information, peer support and guidance. 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. To join JC, follow this link and request membership To participate in chat room discussions, follow these steps (next page): The name of our online community is Jenna’s Corner Online Community. I would like to show you the process of how members join and participate in groups. To become a member, all you have to do is visit the link and request membership, while answering a series of short questions. Once CBTF staff approves you as a member, you will have access to the live chat discussions.

1 2 1. Visit www.cbtf.org 2. Log-in to JC
To participate in a chat, you would follow these simple steps: 1. Visit 2. Log-in to JC

3 4 3. Chat 4. Bereaved Parent Chat

5 5. Enter Chat Room

Initial Online Group Development: Facilitation
Facilitation Process Monthly advertising: instructions and reminders through s, calendar mailings, CBTF website and bereavement facebook community Facilitation: Welcome, introductions and summarizing content. Topics: Parent driven Here is some basic information about how the facilitation process works. First, I advertise the date/time of the group. Once the group starts, I welcome each member as he/she enters the chat room. I invite her to share an introduction, or whatever she feels comfortable sharing. As new members continue to enter the chat room, I do the same as well as summarize the introductions that have already been made. Members typically enter within the first 15 minutes of the session and do not always enter at the same time. The topics brought up during the live chat are always parent driven, meaning parents get to pick the topics or discuss whatever they’d like.

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 Before I discuss the themes presented within the chat room discussions, I’d like to review some basic statistics with you. I’ll be discussing the content of groups that took place during the evaluation period.

Online Group Participation Statistics
Online Group Participation Pattern

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

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 I’d be curious to see what you think the most common topics are (if you haven’t already seen the answers on your handouts)…. When I say “parental grief” I know this is a very broad term. What I’m referring to in the this presentation, is grief symptoms, coping with grief, and grief experiences. I realize that all of these topics could fall under the topic of parental grief.

Change, Adjustment and Finding Purpose
Parental Grief “I found purpose through my commitment to be a wife and mother, but don't feel it.” 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.” The topic of how grief has created change and major adjustment came up quite frequently. Many parents talked about struggling to find purpose in their lives. This topic was presented by parents who were newly bereaved.

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.” Parents often described their grief, talked about the grief experience, and shared what their grief looks like. The topic of acceptance was also brought up frequently. Acceptance was described as a major challenge, particularly among the newly bereaved.

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. This is a short vignette, which I have taken from one of the online chats. I’d like for us to read it together. What do you see happening in this conversation?

Parental Grief “I really miss my child, it's painful.”
Members Discussed Pain of Grieving: “I really miss my child, it's painful.” “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 The pain of grieving was discussed very frequently, among all bereaved parents, no matter how long they’ve been bereaved.

Sadness and Depression
Parental Grief Sadness and Depression Waiting “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.” “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.” Newly bereaved parents often talked about the sadness and depression they felt around loss. They also discussed waiting for grief to “get better,” or lessen. They often looked to the bereaved parents who were bereaved for longer periods of time, and asked “When will I feel better?”

Parental Grief Child’s diagnosis Responses and reactions from others
Triggers of Anger & Where Anger is Directed “My anger was with everything at first.” 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

Anger Around What Could Have Been…
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.”

Parental Grief Describing Grief Experience and Seeking Normalization
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?

Parental Grief Grief and Relationships
“I feel so lonely” [due to grieving differently than spouse] 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.” The topic of grief and how it affects relationships came up frequently. People discussed both negative and positive effects, as well as challenges.

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 Here is another vignette, which gives an example of a relationship conversation taking place. Do you see the difference between how M, the newly bereaved mother, presents her experiences versus the J and D?

Parental Grief Recognition of How Grief Changes and Progresses
“I think I'm moving in a positive direction” “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.” Parents also recognized changes in their grief, and progress. They discussed what grief looks like in the first few years, versus several years or more.

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.” Parents talked about sources of motivation, hope and even identified some positive results from their grieving experience

Negative Social Situations and Interactions
Feelings around reactions and statements from others “Not everyone gets it.” 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]

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.”

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. What do you notice about the three mothers in this conversation? All three parents are relating to a common experience.

Supportive Responses From Others “I like when others can allow me to talk about my child.” 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.”

Milestones, Special Days and Holidays
Challenges: Milestones and Special Days “The fourth anniversary took my by surprise.” 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.” Many parents discussed the anticipation of days, and how the anticipation was often more difficult than the day itself. For newly bereaved parents, the focus was fear of how bad they would feel on that day. The fourth anniversary took me by surprise: this was a parent, bereaved for 4 years, who thought that the anniversary would be easier to cope with that year, but it took her by surprise and was very difficult.

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

Coping… “Birthdays and anniversaries are special and sacred. Not many people understand their significance.” 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

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 I had 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. I hate them. Facilitating a question from J in order to promote discussion of how to cope…

Surviving Sibling Grief
Challenge of Observing Surviving Sibling Grief “My son isn’t happy anymore-he needs help. He misses his brother” 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.” Parents discussed what child/teen grief looks like. Many were wondering if their child was grieving appropriately, or if his grief was normal.

Parenting/Supporting Grieving Children “How do I know if he is OK?” 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.”

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

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 What do you see happening between the members here? You’ll see that with this topic, both parents are struggling together and supporting each other equally (the focus is on the surviving child).

Coping: Faith and Spirituality
Faith, Beliefs &Religion Have Been Shaped By Loss: “I find myself praying to my child much more than GOD.” “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

Using Faith and Spirituality to Cope “Faith is a key element to my acceptance” “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”

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. What do you see happening here (discussions to validate faith)

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

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

“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.

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!!! What do you see happening here (validating continuing bonds)

“My family made a promise to stick together and get through it.”
Coping: What Helps Us Motivation “My family made a promise to stick together and get through it.” 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.”

Coping: Support that Helps
Support and Community Involvement “It is essential to remember that I am not alone.” 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.”

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

How the Group Process Works: “My grief lifted slow and steady.”
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 This slide is about how the group process works, and what happens during a group, that makes it an effective intervention.

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. What do you see happening here?

Expressed Appreciation “It’s just nice to be with people who get me.”
Group Process Expressed Appreciation “It’s just nice to be with people who get me.” “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

Humor in the Chat Room General Humor (non-grief related topics)
Sarcasm Making fun of others’ offensive statements (turning anger into humor) Making fun of challenges

Humor in the Chat Room Vignette: Humor in the chat room
Mothers A and D discuss anticipation of Christmas. A talks about using humor to cope with the holidays: A: What I have found rather unbelievable lately is all of the families who manage to live life and avoid the tragedy we could not. Every time I open an xmas card this year with someone's smiling kids plastered on it, I am in awe of how they have managed to live such a life. As far as soothing myself this holiday season I have been turning to humor more than before. I am actually laughing at things (dark humor, admittedly) that should probably make me cry. (Hopefully, this is not a sign that I have lost my mind). People just constantly say such insensitive, stupid things to me so, this season, I have just been finding those things so out of line that it actually makes me laugh a bit. D: The photo cards with 2, 3, 4 kids are difficult, that's true. A: Seriously. Not sure why people think those cards are appropriate to send to bereaved parents but it’s just another act of insensitivity Jessica Elder: A, I don't think you lost your mind-I've heard others say this and if you're laughing, that's great. As for the cards, very good point to make. I'm sure it's exhausting, irritating, sad to open each card and then have to deal with the "why would they do that" question A: Yes, Jessica, and as an example of my newfound odd humor, last year I think I went more into the "why would they do that" whereas this year I open the card (occasionally I criticize it - not nice, I know) and roll my eyes at how dumb people can be.

Evaluation Results An evaluation tool was sent to 18 bereaved parents (groups June 2010-Feb 2012). 10 question evaluation via Survey Monkey 14 out of 18 parents completed the survey (78% response rate)

Evaluation Results Why did you participate in a live, online chat? Please check all that apply I wanted to meet other bereaved parents=12 (85.7%) I wanted to feel supported=7 (50%) I wanted to talk about my grieving experience=7 (50%) I wanted to talk to or get support from professionals=6 (42.9%) I wanted to learn more about grief=6 (42.9%) I had a specific concern or question about grief (for example, a concern around a grieving sibling or a family issue)=2 (14.3%) Other Responses: I wanted to feel less alone and isolated. I was curious about other parents’ processes with Brainstem Gliomas. Still searching for etiology and cure. I wanted to know if anyone knew of a chance of a cure. I wanted to hear other bereaved parents’ way of handling grief The most common reason for participating: meeting other parents

Evaluation Results 13/14 (92.9%) felt that the online groups helped them in some way. 1 parent felt that the group might have helped for “a moment.” The online chat(s) helped me because I (please check all that apply): Met other parents who shared a similar experience=12 (85.7%) Felt supported by other bereaved parents=9 (64.3%) Had the opportunity to talk about my loss in a safe environment=9 (64.3%) Felt comforted during the chat=7 (50%) Felt supported by professionals=7 (50%) Felt comforted during the chat and for some time after=6 (42.9%) Gained knowledge about my grieving experience=6 (42.9%) Received answers or information=5 (35.7%) Gained information about grief resources and support services=4 (28.6%) Other: I was curious how others are coping but most interested in interactions with medical teams and what each parent did…the course of action to try and help their child. Had another opportunity to reach out and help others. The most common reason why groups were helpful: meeting parents

Evaluation Results 13/14 (92.9%) parents felt less isolated after participating in the live, online chat. I felt less isolated after participating in a live, online chat because (please check all that apply): I was connected to other bereaved parents=10 (71.4%) My feelings and experiences were understood by others=10 (71.4%) I was able to talk to talk to the facilitators= 7 (50%) I was able to explain my experiences to a group that listened=7 (50%) N/A I did not feel less isolated: 1 (7.1%) Other I was able to support others I felt less isolated in that realm but still felt isolated in my daily life. Our children had a similar diagnosis. Still looking for thread...etiology, cure, etc. Most common reason for feeling less isolated during groups: connected to parents

Evaluation Results I like online groups because (please check all that apply): They are supportive=11 (78.6%) They are convenient=10 (71.4%) I like accessing information and services via internet=3 (21.4%) I do not like to be emotional in front of others=3 (21.4%) There is not much support available where I live=2 (14.3%) It is easier to write about my experiences, rather than talk about them=2 (14.3%) I like being anonymous=1 (7.1%) I do not like in-person groups=1 (7.1%) N/A I did not like the online group=0 Other: I prefer face to face groups I really thrive in group experiences They utilize the internet in a helpful, productive way (even though I don't particularly like the internet!! )

Evaluation Results Results suggest that parents would participate more often if (please check all that apply): More topic based discussions were available=5 (35.7%) They were offered on different days=4 (28.6%) They were offered at different times=4 (28.6%) More parents participated=4 (28.6%) There were more chats available=2 (14.3%) Other: I will likely continue participating if I am free It is just a schedule thing for me. I have actually set my calendar and still forget I would want to make sure those in the groups were somewhat further along than me and were being proactive role models.

Evaluation Results Additional Results to Consider:
11/14 (78.6%) felt the online groups can help them cope with their grief. One parent responded “Perhaps [groups help me to cope] -I don’t want to regress but it feels good to talk about my daughter.” 9/14 (64.3%) felt they learned something about their grief

Online Group Benefits Benefits for parents presented during evaluation discussion. Benefits for Facilitators: Reward of observing parent connections and mutual support Reward of providing a helpful service Observation of parents finding hope, purpose and happiness following loss Learning about the grief experiences Convenience (can be facilitated any time, remotely) Reach families in all states Unique intervention taking advantage of modern technology Can use facilitation skills used in in-person support groups Meaningful, rich content through writing

Online Group Challenges
For parents, the following might be challenges: Participation is unpredictable: parent connections may or may not continue depending on participation Participation number varies and influences flow of group (small groups versus large) Speed of conversation Difficult for parents uncomfortable with typing or internet Following several conversations at once Expression through writing/typing can be misunderstood (sometimes nature, tone or mood of writing is unknown) May not be the right fit for a parent’s individual needs Chat rooms might have slower responses if internet is not working properly (otherwise fast) Username/name confusion Not accessible to parents without internet

For Facilitators: Advertising/Outreach Unpredictable number of participants; not knowing what to expect. Focusing on each member’s needs while addressing each topic presented Speed of message delivery and pace of conversation: typing fast to respond and keep conversation flowing Sometimes responses don’t occur immediately (for unknown reason-is parent thinking, writing, taking a break, upset, etc.?) Monitoring comfort of members (facial expressions and tone unknown) Being thoughtful about responses in writing Potential for misunderstandings through writing Confusing usernames and keeping track of real names How do we address challenges? Collaboration Co-facilitation helps! Planning

Challenges: keeping up with introductions, private conversations, username/name confusion, & speed of messages. Dec :55pm Jessica Elder: Welcome! Dec :55pm C: Very excited to be joining you tonight Dec :55pm D: Good Evening. I am here in LA and lead a group in an hour but would like to join you for awhile. Dec :56pm Jessica Elder: D, you are welcome to join us for as long as you'd like. Dec :56pm Jessica Elder: C, I'm glad you made it! Dec :56pm C: Thank you for your help last night - I appreciate it Dec :57pm D: Thank you. I sent you my application for the Jan. 21st event today. Dec :57pm Laurie Burke: Greetings from Memphis , everyone! Dec :57pm Jessica Elder: Any time. A few others should be joining us shortly. Sometimes people join a little late as well. Would the two of you like to introduce yourselves and share a little about your situations? Whatever you feel comfortable sharing? Dec :57pm Jessica Elder: Hi Laurie-everyone, Laurie is my co-facilitator and she joins me each month Dec :58pm C: Hi Laurie - welcome - Jessica was kind enough to help me set up last night - This is a wonderful outlet for us Dec :59pm Laurie Burke: Nice to meet you, CB! Dec :00pm jfott2000: Hi Everyone Dec :00pm Jessica Elder: Welcome J! we were just welcoming 2 new members Private Conversations Speed Introductions Username: jfott2000 vs. name

Groups March 2012-Present 7 groups have been facilitated since February 6 new first-time parents (26 parents total reached) New first-time parents include newly bereaved, and parents bereaved for up to 10 years Parents’ roles are evolving (newly bereaved in June 2010 are now acting as mentors) Average number of participants per group is growing (8 parents participated in a recent group) Last group co-facilitated by Laurie Burke and Jessica Elder took place in July Jessica is now co-facilitating with bereaved parent mentors.

Implications and Next Steps
Continue online group intervention! Provide more groups as attendance grows Provide topic-based groups Groups for fathers Professional guest facilitation ( me if you are interested!) Co-facilitation with parent mentors Consider timing of groups Improve online community features and access Consider parent grief topics when providing all support services Literature review and research

Questions and Comments
Thank you for your time! Jessica Elder, LMSW, LCSW Children’s Brain Tumor Foundation Bereavement Program Manager

Parental Grief Expression in Online Support Groups

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Parental Grief Expression in Online Support Groups

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