Improving Shared Decision Making about Cancer Screening for Native American Women with IDD

2019

Disparities exist in rates of breast and cervical cancer screening among American Indian (AI) women as compared to white women. Women with intellectual and/or developmental disabilities (IDD) also experience disparities in their rates of cervical and breast cancer screening compared to women without disabilities for a variety of individual, family-related and systemic reasons. The proposed research study seeks to address breast and cervical cancer screening disparities among AI women with IDD. Using a community-based participatory approach, we will work collaboratively with identified partners, AI women with IDD, their family caregivers, their health care providers, and with leaders in partnering Native communities to culturally adapt an existing breast and cervical cancer education program (Women Be Healthy 2 [WBH2]) for AI women with IDD. An Advisory Board (AB) will provide guidance on research approach and implementation. Aim 1: Build partnerships with American Indian groups and communities that express a need for cancer prevention for Native women experiencing IDD, in order to collaboratively adapt the WBH2 program. We will first assess interest and needs among tribal groups or Native organizations (e.g. urban American Indian centers) related to breast and cervical cancer screenings for AI women with IDD. The outcomes of Aim One will be to identify partner groups, create a research collaborative team, secure any required tribal council approvals and/or resolutions of support, and obtain Institutional Review Board approval for activities in Aim 2. Aim 2: Adapt WBH2 with input from Native women experiencing IDD, their caregivers, their health care providers, and their Native community members. To address Aim 2, in-depth interviews will be completed with AI women with IDD (N=24), family caregivers (N=24), health care providers (N=24), and leaders in partnering Native communities (N=12) to explore barriers and facilitators to cancer screening and the cultural relevance of the WBH2 program. These efforts will lay the groundwork for sustainable research partnerships to evaluate implementation of the adapted WBH2 program. The MPIs and Co-I will mentor NACP students, as well as an AI graduate student at the University of Arizona, in research throughout the project.

Training Trainees, Performing Research or Evaluation, Developing & Disseminating Information, Continuing Education/Community Training

Health-Related Activities, Other - Cultural Diversity

Students/Trainees (long or intermediate trainees), Community Trainees / Short term trainees, Professionals and Para-Professionals, Family Members/Caregivers, Adults with Disabilities

Racial or Ethnic Minorities, Disadvantaged Circumstances, Geographic Areas, Reservation, Urban, Specific Groups

State

Federal

N/A