Helen Burstin, MD, reached out to ask if I know of an online peer-to-peer support group for parents of teens with cancer. For anyone who knows Helen: Don’t worry, it’s not for her own family. She is asking on behalf of a friend, who writes:
“I’ve been able to find groups for parents of children under age 10 as well as groups for teens and young adults with [Acute Lymphocytic Leukemia]. But I’ve yet to find an active group for the parents of teens who have cancer. I’d love to connect with others about practical life issues like school, sleep overs, etc. Of greatest interest to me are peers walking the razors edge of supporting age-appropriate independence and privacy with the realities of their child’s increased dependence.”
– Mom of a teen going through cancer treatment
Let’s help this family. Please share ideas, questions, etc. in the comments below. Thanks in advance for any help you can provide!
Image: A screenshot from the Peer Health Advice video I produced with Reframe Health Lab.
Hi Susannah & Helen,
In the US, the Leukemia & Lymphoma Society seems to have the most resources, and reaching out to their information coordinators directly might signpost to some closed groups (https://www.lls.org/leukemia/acute-lymphoblastic-leukemia/childhood-all). They host regular phone calls that lets caregivers drop in to talk with others going through the same thing (https://www.lls.org/support/online-chats#Caregivers). They also have a system to request a dedicated peer supporter (https://www.lls.org/support/peer-to-peer-support). Finally there is an online community hosted by LLS with 13k+ members, though because it requires a login to join I haven’t probed further than the external pages (https://communityview.lls.org/).
My Google is set to Britain so apologies for the UK bias. In the UK the Teenage Cancer Trust (https://www.teenagecancertrust.org/) is experienced and highly regarded (including ALL) and might be able to signpost deeper than I can. Educational resources from the Children’s Cancer & Leukemia Group (again from the UK but some universal themes here – https://www.cclg.org.uk/write/MediaUploads/Publications/PDFs/Children_and_Young_People_with_Cancer_-_A_Parent's_Guide.pdf)
Good luck and best wishes
Paul, you are a lifesaver! Thanks so much. We will pass these suggestions on to the family.
One idea I had is to look for a blog by a mom or dad of a teen whose challenges match up or run parallel (i.e., also parenting a 16 year old who does NOT want to connect with peers herself or even think about cancer when not actively going through treatment, etc.) Personally, I’ve found great comfort in reading the journey of one person as they move through a challenge that I’m facing (or anticipate that I will face). I also like group blogs about parenting like Grown & Flown to get a range of perspectives on the late-teen/early-20s stage.
So if anyone knows of a blog — or a podcast, or a book, or any form of media — that fits the bill, please share that, too.
Thanks so much, Paul! Great suggestion.
Another idea is to use CaringBridge.com to identify parents who are journaling on behalf of their teen.
Thanks! Great idea.
Another tip from Twitter via @stephanielieber: Imerman Angels which “provides FREE personalized one-on-one cancer support for cancer fighters, survivors and caregivers.”
While not specifically for parents of teens with cancer, MaxLove Project has a private Facebook parent support group for all parents of childhood cancer patients and survivors. Around 20% of active parents have children older than 12. MLP’s mission is to help families improve quality of life and reduce long-term survivorship-related health risks. Parents can sign up to be added to the group and receive additional support here: https://www.maxloveproject.org/super-families-support-network-sign-up-form
Thanks, Justin!
Perhaps you might want to start your own. Check out Mighty Networks, a place where you can start your own community. Hope this might help!
Thanks, Megan, for this comment and for amplifying my post on Twitter. It’s had another round of interest thanks to you.
One person tweeted in reply: “http://bluefaery.org has a secure discussion forum for people with Hepatocellular cancer (HCC)” (and after I inquired if a parent of a teen would find fellowship) “Yes, but bear in mind this is specific to HCC. https://curetoday.com have a broader audience, and if I recall correctly, they do have forums that include carers and parents”