We are fortunate to have several resources in our cancer center. I am part of a clinical psychology group and AYA and other cancer patients, survivors, and caregivers have access to our services. We also have a palliative care team that works with cancer impacts, spiritual care services, an affiliated fertility clinic (including a psychologist who specializes in fertility issues), an active AYA support group at our local Gilda’s Club, an active fertility support group at the fertility clinic.
What we do not have is an easy way to connect AYA patients / partners coping with fertility issues with other AYA patients. My patients appreciate both the general AYA support group and fertility support group, but neither quite reflect their unique needs. We are looking to develop a group or peer support program for this purpose. I would love any advice from others who have experience with this type of group.
@ecostanzo-I’m curious about how the AYA you’ve worked with/seen referred to resources are connected. In other unique health populations managing the psychosocial aspect of treatment connect through social media (e.g. Facebook) or forum posting (e.g. Reddit). Has your group had any success connecting people in the community vie internet-based resources?
Hi ecostanzo and ACLARA9791! In the cancer center where I work, we have a group of AYA patients that meet once a month. We have a private Facebook group that assists in marketing our social outings and any updates on AYA information, including scholarships and other community services available. Over the past 4 years, I have worked towards increasing patient engagement on social media via Facebook or Instagram, to no avail. Even so, we continue to meet monthly and provide social outings for them to come together in community. It was revealed to me at our last meeting that the patients have since begun to communicate through other social media apps on their own. Success!! This is what we all strive for is to provide support for our patients. However, we do continue to have barriers in locating additional community support groups as many are internet-based.