Assessing Cancer Screening Knowledge and Self-Efficacy in Women with Intellectual and Developmental Disabilities

We collect the following data from each MHMC participant at baseline and follow-up: (1) breast cancer screening knowledge, self-efficacy, and screening expectations (female participants only) and (2) cervical cancer screening knowledge, self-efficacy, and screening expectations (female participants only). Mammography knowledge is measured using the Mammography Preparedness Measure developed by Wang et al [52 (link)] to measure the understanding of mammography’s purpose and the procedure itself among women with IDD. Verbally administered, the instrument asks the participant to role-play, providing advice to the interviewer, who will be getting a mammogram. Questions are asked using plain language about the body parts checked by a mammogram, why it is used, how it is done, and how often it should happen. Parallel questions to assess cervical cancer screening or Papanicolaou testing knowledge along with scripts for both knowledge assessments were created by the authors of this study and are presented in Tables 2 and 3. We further adapted this instrument by including images of a mammography machine and an exam table with stirrups, as visual supports can assist individuals with IDD in processing information [53 (link),54 ].
Self-efficacy refers to an individual’s perception of their capacity to perform certain tasks in their life [35 (link)]. To assess self-efficacy in breast and cervical cancer screening, we modified the colorectal cancer self-efficacy instrument [55 (link)] that has been used in a Native American population [56 (link)], as shown in Table 3. Participants view an image of a ladder and read a script that is loosely based on the self-anchoring striving scale by Cantril. [57 ]. The bottom of the ladder corresponds with a score of zero, or not sure at all and the top of the ladder corresponds with a score of 10 for very sure. Participants are asked the following question, “Imagine that this ladder is a way of picturing your confidence, or how sure you are that you can do something. The top of the ladder indicates that you are very sure, and the bottom indicates that you are not sure at all. For these next questions, what place on the ladder (or number between 0 and 10) matches how sure you feel?” Native American women with IDD and their female caregivers are then asked 4 questions regarding their ability to decide and to get a cancer screening (Tables 4 and 5). Both male and female caregivers are asked parallel self-efficacy questions regarding their confidence in supporting a woman with a disability that they care for through the cancer screening process.