Date of Award

8-16-2024

Document Type

Open Access Thesis

Department

Genetic Counseling

First Advisor

Amy Wardyn

Abstract

Intellectual disability (ID) is defined as a combination of deficits in cognitive and adaptive function, both of which must be present early in life. Adults with ID frequently have unique healthcare needs; however, they also require care that is routine for all adults. This includes cancer screening. The goal of this study was to evaluate whether or not adults with ID are undergoing cancer screening, understand the barriers they have faced in obtaining screening, and collect recommendations from parents and caregivers on ways to improve access to and facilitate screening for this population. We surveyed parents and caregivers of adults with ID via an original electronic questionnaire on REDCap. Data from 20 respondents was analyzed using frequencies, percentages, and quotes from open-ended responses. Twelve patients were noted to have a family history of cancer, and nine had undergone one type of cancer screen at least once. The majority of parents or caregivers had thought about cancer screening for the patient with ID and had mentioned this topic to healthcare providers in the past. Respondents cited a variety of barriers to obtaining cancer screening for the patient with ID, including lack of healthcare provider knowledge in how to care for adults with ID and the inaccessibility of routine cancer screening options. Some suggestions to improve accessibility of cancer screening included better communication between caregivers and medical professionals, alternative, less invasive screening options, and the ability to bring a support person or item to appointments and procedures.

Rights

© 2024, Jennifer Ryan

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