Hello, AOSW! Allow me to introduce myself. I am a clinical social worker writing to you from Levine Cancer Institute in Charlotte, North Carolina. I serve as the social worker for the outpatient Neuro-Oncology and Immunotherapy Clinics. Recently, I have taken over as the chair of the Brain Tumor SIG and cannot wait to get started working with you!

Prior to my current position at LCI, I worked as a social worker for the Trauma Survivors Network, which kindled my passion for the field of neuro-oncology. Although this organization worked with traumatic brain injuries, I became dedicated to supporting the loss that individuals and family members experience when their world seems to have shifted out of focus. Brain tumors effect everything from the physical trauma of diagnosis, surgery and treatment to the behavioral changes that can be seen with progression and growth—not news to any of you (Pelletier, Verhoef, Khatri, & Hagen, 2002).

As the new SIG chair, my hope is that this community of neuro-oncology social workers can come together to network, share ideas, trade resources and connect in a way that brings to light the different needs patients with a brain tumor and their families face. I’m looking to hit the ground running and am excited to put together a working group of like-minded individuals to:

• Update and compile a list of comprehensive brain tumor resources on the AOSW website,
• Construct a monthly email to all SIG members to stay up-to-date on new resources, events and research on our topic,
• Share relevant CEU events and educational materials within our network,
• Act as a guide and expert for others within AOSW,
• Create a strong presence on our SWON network.

Recently, my predecessor, Grier Hock, updated the Brain Tumor SIG Resource list with an article developed by the American Brain Tumor Association on the need for brain tumor-focused support groups. The article is informative and in-depth and, to me, raised some important questions:

• Should support groups look different for the brain tumor population?
• Do patients and caregivers need separate meetings?
• Informative and educational vs. supportive and conversational?
• Where do ethics play a role in these support groups?

In my experience, each one of these questions is fluid and ever-changing. Brain tumors grow rapidly and can change a person’s demeanor, memory and appearance seemingly instantly. These changes may manifest in group meetings and require a deviation from the plan. They may initiate important conversations between caregivers and/or other patients. They may cause problems within the group dynamic or add undue stress to other patients in similar situations.

Alternatively, these changes commonly bring togetherness, support and understanding among group members. It can allow caregivers the chance to connect with others with like experiences. Whatever the risks and benefits may be, it is important to remember that no two tumors are alike, just as no two diagnoses are alike. I challenge each of you to look at your own support groups and consider this, “Does my group fit the needs of this population? If not, what can I do, right now, to improve it?”

I am eager to work with and meet many of you in the year to come. I invite you to share any additional comments or experiences with me or through the SIG on the AOSW website. I look forward to fostering a shared community of professional development and interests through this new endeavor!

Reference

Pelletier, G., Verhoef, M.J., Khatri, N., & Hagen, N. (2002). Quality of life in brain tumor patients: The relative contributions of depression, fatigue, emotional distress, and existential issues. Journal of Neuro-oncology, 57, 41-49. https://doi.org/10.1023/A:1015728825642