Barriers and Facilitators of Parent-Child Communication in Children With Cancer Predisposition

This study examines how parents and children with cancer predisposition syndromes communicate about genetic risk. Children who carry inherited mutations in cancer predisposition genes — variants that significantly increase their lifetime risk of developing certain cancers — face unique psychological challenges, as do their parents who must decide how and when to share this information, and how to support their child emotionally while managing their own anxiety. Understanding the barriers and facilitators to these crucial conversations can help healthcare providers better support families navigating this difficult situation. Eligible participants must be patients aged 10 to 24 years who have undergone germline genetic testing and carry a pathogenic or likely pathogenic variant in a known cancer predisposition gene, with the result already disclosed to them. They must have a primary caregiver willing to participate alongside them, and both patient and caregiver must be able to speak and read English. Children who are only carriers of recessive variants without elevated cancer risk, or those with significant cognitive deficits, medical conditions precluding participation, or whose caregivers are under 18 are excluded. Participants will complete surveys and potentially interviews about their communication experiences, concerns, and support needs. This research matters because for a child to grow up knowing they carry a hereditary cancer risk is a profound psychological burden — and the quality of parent-child communication about this risk can either buffer or amplify that burden. Better guidance for families could reduce anxiety, improve adherence to cancer surveillance, and ultimately save lives through earlier cancer detection.