Everyone’s experience with a brain tumor is different, but there are many common themes and issues that are similar for patients and their caregivers. Caregiving needs are often complicated by neurocognitive, behavior and personality changes. Some patients experience memory loss, visual impairments, attention deficits and may have difficulty processing information. For example, a patient with a brain tumor may not be able to be responsible for their own medication management due to issues with memory and no concept of time. This can create conflict between the patients and their caregivers, as the loss of independence is a common concern. Often there are lower levels of quality of life for this patient population and their caregivers compared to other types of cancers. Caregivers often receive little support as “the focus is on the patient, the emotional aspects of caregiving often go unnoticed and unsupported” (Schubart, Kinzie & Farace, 2008, p. 70).

Many people experience these common issues in isolation, resulting in fear, insecurity and depression. With peer support and education, patients and caregivers can feel more confident and empowered to gain control over a difficult situation. As oncology social workers, we are often the most knowledgeable to address caregiving concerns and provide psychosocial support to this population. Developing a support group specific for patients with a brain tumor and their caregivers is one way to address these unique issues and concerns. Connecting patients and caregivers who understand the unique issues that come with this population can be very helpful in their ability to cope. Our skills as facilitators can provide the opportunity for patients and caregivers to explore their thoughts and feelings in a safe and supportive environment.

The Brain Support Group at Cone Health Cancer Center consists of an ongoing, open-ended psychosocial support group that simultaneously serves patients with a brain tumor and their caregivers. The group meets once a month and shares a light meal together, allowing time for interaction with others. The meeting consists of a speaker or working on an activity to provide time for communication and sharing within the group. This format has been successful as caregivers are near patients. These patients and their caregivers benefit from a support group separate from other types of cancer that addresses the more pertinent needs of the brain tumor population.

Support groups can be challenging to facilitate and, especially with this special population, one needs the support and guidance of others. There are many resources available to you as you consider starting a brain tumor support group at your own oncology site. Through my new role as Brain Tumor SIG Coordinator, I have gathered several resources that those interested in this unique population may find helpful. I am very excited we have our Brain SIG community as one way to share these specific resources. If you are not familiar with the My Communities feature on the AOSW website, go to AOSW.org to check it out. Once on the site, click on My Communities, then scroll down to the Brain Tumor SIG and go to Brain Tumor SIG Forum for specific resources to assist you.

I hope the Brain Tumor SIG will be a great source of support and a way to share information with your fellow AOSW members!