Abstract 2431: Working with stakeholders to adapt a cancer screening education program for Native American women with intellectual disabilities
Authors: Armin Julie S. , Williamson Heather J. , Baldwin Julie , Rothers Janet , Cherup Ellen , Chico-Jarillo Tara , Etcitty Jennifer , Lockwood Bailey , Nasimi Bonny 
Published: August 2019

Background: Women with intellectual and developmental disabilities (IDD) are less likely than the general population of women to receive recommended breast and cervical cancer screenings. In addition, rates of breast and cervical cancer screenings are lower among Native American (NA) women than among White women. Using a community-informed approach, this project addresses the specific cancer screening needs of NA women with IDD and their networks of support in order to adapt an evidence-based cancer screening education program for women with IDD.

Methods: In this formative research project, the research team has engaged in a step-wise project that adheres to best practices for conducting ethical community-informed research with NA communities and ensures a feasible and acceptable cancer education program. 1) The university-based research team established a 6-person advisory board to guide partnership development, identify potential community needs, and contribute to study recruitment. 2) An ecosocial qualitative needs assessment examined facilitators and barriers to women’s screening practices. In-depth interviews with Native women with IDD (N=24), family caregivers (N=24), health care providers (N=24), and leaders in partnering rural and urban Native and Native-serving communities (N=12) were completed. 3) Working with urban and rural partners to understand and interpret the team’s qualitative data, the team will culturally adapt a cancer screening education program for diverse groups of NA women with IDD.

Results: During advisory board interactions, community meetings, and event participation, the research team identified individual, interpersonal, community, institutional and policy components influencing NA women with IDDs cancer screening. In a review of the cancer education curriculum, advisory board members identified several areas for adaptation, including: length of program, discussion of women’s body parts, involvement of spiritual leaders and family members, involvement of health care providers, and integration with customary transition rituals for Native women. During community discussions, the team learned that NA women may not have seamless access to cancer treatment; we are working with the advisory board and community stakeholders to limit the gaps between cancer screening and treatment programs for women who are part of the project.

Conclusions/Next Steps: After working with community partners to analyze qualitative data and adapt the cancer education curriculum for Native women with IDD, the team will pilot test the adapted curriculum for feasibility, acceptability, and preliminary knowledge and self-efficacy outcomes.

Citation Format: Julie S. Armin, Heather J. Williamson, Julie Baldwin, Janet Rothers, Ellen Cherup, Tara Chico-Jarillo, Jennifer Etcitty, Bailey Lockwood, Bonny Nasimi. Working with stakeholders to adapt a cancer screening education program for Native American women with intellectual disabilities [abstract]. In: Proceedings of the American Association for Cancer Research Annual Meeting 2019; 2019 Mar 29-Apr 3; Atlanta, GA. Philadelphia (PA): AACR; Cancer Res 2019;79(13 Suppl):Abstract nr 2431.