Barriers and Facilitators of Parent-Child Communication in Children With Cancer Predisposition
St. Jude Children's Research Hospital
Summary
Testing children, adolescents, and young adults (CAYA) for a genetic risk for cancer can help with early prevention and detection of cancers through regular follow-ups and medical care. After receiving genetic test results, CAYA may not accurately understand what their results mean, and parents are often unsure about talking with their CAYA about their genetic risk for cancer. By understanding how parents communicate with their CAYA, the investigators can improve future genetic education to reduce cancer risk. Primary Objectives: * Identify qualities of parent-CAYA (child, adolescent, and young adults) communication about CAYAs' genomic cancer risk, and their association with CAYAs' psychosocial and prevention outcomes. * Examine the association between sociodemographic, cancer-related, and psychosocial factors and parent-CAYA communication regarding CAYAs' genomic risk for cancer. * Identify barriers and facilitators of parent-CAYA communication regarding CAYAs' genomic risk for cancer.
Description
This sequential explanatory mixed-methods, multi-informant study will include CAYAs (ages 10-24 years) with a P/LP germline variant in a known cancer predisposition gene, with this age range selected to inform CAYA informational needs around transition to adult care. CAYAs and parents will complete questionnaires and direct behavioral observations of parent-CAYA communication to (1) observationally characterize the content, qualities, and associates of parent-CAYA cancer predisposition communication and (2) examine the association between qualities of parent-CAYA communication about CAYAs' can…
Eligibility
- Age range
- 10–24 years
- Sex
- All
- Healthy volunteers
- No
Inclusion Criteria: * Patient aged 10 to 24 years (inclusive) * Patient underwent germline genetic testing with a Pathogenic/Likely Pathogenic (P/LP) variant in a known cancer predisposition gene that increases risk for developing cancer * P/LP result disclosed to the patient * Patient has a primary caregiver willing to participate * Patient and participating caregiver able to speak and read English Exclusion Criteria: * Patient is only a carrier of a recessive variant that does not alone increase risk for cancer * Inability or unwillingness of patient or participating caregiver or to give…
Location
- St. Jude Children's Research HospitalMemphis, Tennessee