Cancer Screening for Patients With Intellectual Disability: Exploring Parent and Caregiver Perspectives

AANE maintains this listing of current research for the community’s information and possible participation. These research studies are external and are not ran by, nor affiliated with, AANE. To return to the main research study page that includes the full listing of research studies, study guidelines, and a link to submit a research study, click this link.

Date Posted

Research Study Description

Our goal is to understand the experiences of patients with intellectual disability in regard to screening for cancer, for example colonoscopies for colon cancer and mammograms for breast cancer. For patients not being screened, we hope to learn about any barriers faced. We want to provide parents and caregivers the opportunity to share their thoughts and opinions on this topic. Participants will complete a ~20-minute survey digitally.

The study consists of a one-time digital survey, which will take about 20 minutes to complete. The survey should be completed by the parents or caregivers of the patient with intellectual disability. Caregivers include anyone besides the biological parent that is the primary caregiver for the patient (i.e., sibling, grandparent, aunt/uncle, non-relative guardian, etc.) Patients themselves are encouraged to work with their family member or caregiver to complete the survey if desired.

[email protected]

University of South Carolina Genetic Counseling