Talking About Cancer Screening with Women with Intellectual and Developmental Disabilities

Talking About Cancer Screening with Women with Intellectual and Developmental Disabilities

Mammograms and Pap tests are effective breast and cervical cancer screening tools for all women. While cancer incidence rates are similar for women with and without disabilities, women with intellectual and developmental disabilities (IDD) are not screened at the same rates as their non-disabled peers.   Reasons for the disparate screening rates for women with disabilities include lack of knowledge or understanding about exams, anxiety or fear, and absence of recommendation by physician.

Many caregivers of women with disabilities, including parents and siblings, struggle with the best ways to talk about the procedures.   The Lurie Institute for Disability Policy at Brandeis University developed an initiative, Women Be Healthy, aimed to teach adult women with IDD and their caregivers about cervical and breast cancer screening.   Resources, including video clips designed for caregivers and women with disabilities to watch together, short guides, and a full curriculum can be found on their website.

Caregivers are encouraged to regularly discuss with women with IDD their receipt of preventive women’s health screenings.  It is also helpful to seek out ways to reduce anxiety surrounding the screenings such as practicing deep breathing, listening to music, or accompanying her to the appointment. It is important to emphasize that these screenings are part of being a healthy woman, just like a regular physical examination or a dentist’s appointment.  Caregivers might list important women in the individual’s life, and mention that they all include these procedures as part of their health routine. One way to frame these procedures is that even though they might seem strange or different, they help the doctor to know what is going on inside her body. 

Another useful tip for caregivers in talking about and preparing for screenings, is to be honest about what the experience is like.  It can be beneficial to look at online images of the mammogram machine, stirrups and speculum prior to the appointment, or to even schedule a time to go to the doctor’s office ahead of time to see them up close.   This takes an element of the unfamiliar out of these new procedures.   While the prospect of these screenings may seem intimidating for both patients and caregivers, with some preparation, these life-saving procedures are accessible for patients of all ability levels.