The Parents Leadership Community (PLC) of the Basser Center for BRCA is a group of parents supporting their children who are, or may be, faced with a BRCA1 or BRCA2 mutation. The PLC is a supportive forum for parents, while also providing a resource to stay informed about the latest advances in BRCA research and care.

To learn about how to become involved in the Parents Leadership Community of the Basser Center for BRCA, contact Carolyn Brown or call 215.573.0550.

Talking with Your Family About BRCA Mutations

Allison Werner-Lin, PhD, LCSW is an Associate Professor at the University of Pennsylvania's School of Social Policy and Practice Senior Advisor to the Clinical Genetics Branch of the National Cancer Institute, and a Licensed Clinical Social Worker in the State of New York. To answer questions about how families impacted by BRCA can support adult children, Dr. Werner-Lin draws upon nearly twenty years of research on the experiences of young adults with BRCA and other inherited cancer risk variants as well as her mental health practice as an oncology social worker specializing in children and families affected by cancer.

How can help I my adult child who is struggling emotionally with their own BRCA status?

Watching a child struggle at any age is fraught for parents. We want our children to be happy and healthy. When our children struggle, we often struggle, too. Many parents try to manage their own distress by being as helpful as possible to our adult child (whether or not our adult child views our actions as helpful!). Here are a few steps that may help parents identify ways they can help their adult children navigate emotional distress

Distinguish your adult child’s emotional distress from your own. Parent distress may ebb and flow in intensity differently from their adult child, so attuning to ourselves can help us identify the source of our distress and seek appropriate support for ourselves. This approach also helps keep interactions with our adult children focused on their needs rather than our own.

Find a quiet time to check in. Parents may see their adult child’s behavior as evidence of worry or distress. This is part of how our brains work to make sense of the world — we interpret what we see through our own lenses, our own experiences. Before you step in to provide help, consider a quiet, private “check-in” with your adult child to see how they’re doing. You may choose to share what you’ve observed that tells you there are struggling. Gently ask whether your own interpretations are correct. If your child tells you they are, indeed, struggling with their BRCA mutation status, ask if they’d like to share their concerns with you now or at a time in the future that is good for them. Sometimes your child may need time to gather thoughts, and that’s alright. If you suspect your child withholds sharing emotional distress to be sure they aren’t burdening you, you may decide to name that suspicion and invite your child to share with you while promising to let them know if you become overwhelmed.

Ask, don’t assume. Parents often have specific ideas about what might be helpful to provide their adult child that are different from what the adult child would find helpful to receive. I encourage you to ask your adult child whether you can be helpful and how. Some young adults may prefer action-focused help — laundry, child care, attending appointments together. Other young adults may prefer emotion-focused help — talking through options, listening to their fears, seeking our pleasurable distractions. Both are meaningful ways to support your children and to strengthen your relationship.

Read more about how to talk to your adult children about BRCA

Past PLC Events

This Parents Leadership Community event focused on the emotional realities of being a BRCA mutation carrier and the parent of a child who has, or may have, a BRCA mutation. Hear from Basser Center Executive Director Susan Domchek, MD, Basser Parents Leadership Community co-chair and Basser Center Advisory Board member Susan Getz, Basser Center Advisory Board member Heidi Rieger, Basser Young Leadership Council co-chair Jenny Sorin, and Associate Professor at the University of Pennsylvania's School of Social Policy and Practice, Allison Werner-Lin, PhD. The discussion was moderated by journalist Jill Harris.