ASPO Abstracts

Improving Cancer Screening Surveillance of Native American Women with Intellectual and Developmental Disabilities

Authors: Lockwood, B., Baldwin, J., Rothers, J., Lelli, L., Sasse, S., Etcitty, J., Armin, J., Williamson, H.J.

Category: Cancer Health Disparities
Conference Year: 2020

Abstract Body:
Purpose: The purpose of this project is to identify cancer surveillance methods among Native American (NA) women with intellectual and developmental disabilities (IDD) in Arizona. Previous nationwide studies in the U.S. indicate that both women with IDD and NA women are less likely to receive breast and cervical cancer screenings than the general population of women and white women, respectively. With 22 federally recognized tribes in the state and a NA population that exceeds national proportions, there is a need to understand the health of NA women with disabilities. Methods: This community-engaged project is being overseen by an Advisory Board (AB) consisting of individuals involved in statewide efforts related to cancer screening, NA health, and IDD services. The team evaluated existing data sets for their feasibility to identify cancer screening adherence among women with IDD and NA women. Input about potential data sources and areas for data development was elicited from the AB and data experts in Native American or disability surveillance through in-depth interviews (N=12). Results: The research team identified potential data sources regarding cancer screening for women with IDD and NA women; after review, these were deemed poor data sources for comprehensive cancer surveillance of NA women with IDD. The researchers and partners collaborated to develop culturally appropriate, functionally-based questions about cognitive impairment to develop surveillance strategies regarding cancer screening among NA women with IDD. As some NA languages do not have a language equivalent for the term disability, the team implemented questions that quantify disability status by identifying support needs. Interviews with data experts revealed the need for culturally relevant questions and greater community involvement in the surveillance of NA women with IDD. Conclusion: This project can inform further research, practice and policy efforts for the IDD population who also identify as members of a racial/ethnic minority group. Further research is needed to identify surveillance strategies across all race/ethnic groups with IDD. Greater knowledge about racial minority populations with IDD will enable public health programs to better ensure universally accessible health care.

Keywords: intellectual and developmental disabilities (IDD); Native American populations; cancer screening; health surveillance