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Loss, Grief and Bereavement Program

The loss of a child is a devastating experience for parents, family members and friends. It does not follow the expected course of life.  The process of grief differs from person to person. For many it is long and painful, and it causes some to feel alone and forgotten by others who go on with their lives.

You may want to seek assistance and support through this difficult time for you and your other children. However, many people do not know where to look or who to turn to for information. It can be difficult and overwhelming to make phone calls or search for resources online. The social workers at CBTF are available to help you determine what services may be helpful to you and your family, and how to find them.
 
The Children’s Brain Tumor Foundation now offers a Loss, Grief and Bereavement Program for families who have lost a child. Our goal is to support families through this difficult experience by connecting them to other bereaved families, providing supportive services, and offering therapeutic and educational information. From talking with bereaved parents and family members, we know everyone has his or her own unique way of grieving. We realize support services or support groups may be very helpful to one person, but not helpful to another. Therefore, we offer different forms of support services to address varying needs. All services were created using feedback and input from bereaved parents who informed us of their experiences and needs. A description of our services within the Loss, Grief and Bereavement Program is provided below.
 

Bereavement Phone Counseling and Support

CBTF has clinical social workers who are available to provide support and counseling over the phone. Please call us at 866-228-4673 or email jelder@cbtf.org if you have a question, need help locating a resource or would like to talk.

 

Family-to-Family Network for Bereaved Families

Through our Family-to-Family Program (F2F), we are able to connect bereaved parent mentors to bereaved parents looking for peer support. We would also like to connect bereaved grandparents and bereaved siblings. Mentors receive training and are available to support others through phone, email, or in-person.
If you would like to become a parent mentor for bereaved parents or meet a parent mentor, please call us at 866-228-4673 or email jelder@cbtf.org


Please email jelder@cbtf.org to inquire about dates and times of upcoming phone trainings.

“The feeling of connecting to other parents is that sense of knowing that you are not alone.”
   -quote from a bereaved parent

“As a mentor, I appreciated the opportunity to reach out to other parents who have experienced the greatest possible loss, lend them an understanding ear, share my story, and offer hope that they will get through and be able to one day live productively, and feel joy again.”
   -quote from a bereaved parent mentor
 

CBTF Bereavement Support Groups

In-Person Groups
CBTF can help you locate a support group in your area. You can also find a large list of grief organizations that provide support groups at the bottom of this page. Contact jelder@cbtf.org

Phone Groups
CBTF is planning to offer phone support groups and educational discussion groups led by grief professionals. If you would like to participate or be informed of upcoming phone groups, please email jelder@cbtf.org with your name, contact information and availability. We will add you to our distribution list and notify you of upcoming groups.

Online Groups
Jenna's Corner, CBTF's  Online Community, offers a group for Bereaved Parents and Caregivers. As a group member you can participate in message board discussions around various topics related to bereavement and grief. These discussions are available to you 24 hours a day, 7 days per week. As a member, you can also start your own discussion topics. In addition to message board discussions we plan monthly live chat room discussions for bereaved parents and caregivers. Both message board and chat rooms discussions are co-facilitated by CBTF and grief professionals. For more information, call CBTF or email jelder@cbtf.org
 

Jenna's Corner Online Community

Bereaved parents and family members can connect to each other through Jenna's Corner, CBTF’s online community. You can join an online community here - just follow the instructions to create your account. Jenna's Corner currently offers live chat room discussions facilitated by grief professionals, in addition to message board discussions available to you 24 hours a day, 7 days a week. If you would like to join CBTF's online community but need assistance, please email jelder@cbtf.org
  
Message Board Discussions
Message Board discussions are available 24 hours a day. Parents can start their own discussions or can comment on existing discussions. Current topics include helping grieving children/teens, coping with anniversaries/holidays/birthdays, and self care and grief. There is also a new message board inviting parents to share information about their children, and examples of how they honor their children. To participate in message board discussions, log in to Jenna's Corner, click on "groups," and enter the group for "Bereaved Parents and Caregivers" where you will see a list of discussions.

Experiences and Quotes from Bereaved Families

Memorial Quilt

Parents and siblings are welcome to create a free “quilt square” in memory of their loved one. This personalized memorial page is a place where you may post photos, stories, and updated journal entries for yourself and family to view. The quilt square provides families a way to share memories and honor their children. Friends and family may visit the page you have created. Guests may leave comments to share their special memories and sentiments or make a donation in the child's honor.
 

Events

We are open to planning social gatherings for bereaved families to give them the opportunity to connect to others. If you live in the NYC, CT or NJ area and would be interested in attending a social event, please inform us by emailing jelder@cbtf.org  If you live elsewhere but want to attend social gatherings or events, email us or call, and we will assit you in locating resources that may be available to you. Information on any upcoming events for bereaved families will be posted here.  

There are no events at this time.

Research Opportunities

The following is a research opportunity available to bereaved parents. For more information please contact the name and number listed below:

8/4/2011

Hello,

I am a master's prepared nurse and am studying what it is like for parents after their child dies. I would like to talk with you and learn more from you so that I can help nurses to provide better care for mothers and fathers after the death of a child in the future. If your child died from cancer at least 1 year ago, and was between 0-18 years at the time of his or her death, please contact me by email or telephone if you would like to learn more about volunteering to be a part of this study.

I look forward to speaking with you.

Chris Denhup, APRN, Doctoral Nursing Student

College of Nursing, Seton Hall University

Email: christine.denhup@student.shu.edu

Telephone: 203-257-6202

 

Share Your Suggestions

Your input and suggestions are greatly appreciated and will help us to develop effective support programs for bereaved families. If you would like to, please email jelder@cbtf.org or call 866-228-2473 to offer your input and suggestions. 
 

CBTF Information and Resources       

Contact Us

Please call 866-228-4673 or email jelder@cbtf.org for more information on the CBTF Loss, Grief and Bereavement Program.
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