Primary Care Providers' Experiences Recommending and Performing Cervical Cancer Screening for Women with Intellectual Disabilities: A Qualitative Study.

Women with intellectual and developmental disabilities (I/DD) are less likely to receive cervical cancer screening (CCS) relative to women without disabilities. Primary care providers (PCPs) play key roles in recommending CCS. The purpose of this study was to identify factors PCPs consider when recommending and performing CCS for women with I/DD. Using a qualitative approach, in-depth semi-structured interviews (N = 13) were conducted with majority family medicine-trained PCPs. Through inductive data analysis, it was found that most PCPs reported recommending CCS; however, follow-through for performing CCS varied. PCPs attempted to align their CCS recommendations with national guidelines and provided counseling and education to families and patients about CCS while taking an individualized risk-benefit approach. Despite most PCPs reporting a lack of knowledge or training related to providing I/DD-specific care, PCPs attempted to draw upon experiences with similar populations to recommend and perform CCS. There is an opportunity to improve knowledge of PCPs related to performing CCS for women with I/DD.

An Adapted Cancer Screening Education Program for Native American Women With Intellectual and Developmental Disabilities and Their Caregivers: Protocol for Feasibility and Acceptability Testing.

BACKGROUND: Women with intellectual and developmental disabilities (IDD) do not undergo breast and cervical cancer screening at the same rate as women without IDD. IDDs are diagnosed in childhood, are lifelong, and involve difficulties in adaptive behaviors and intellectual functioning. Native American women also experience disparities in breast and cervical cancer screenings. Despite known disparities, women with IDD are often not included in health promotion programs, and there is a need for evidence-based programming for those with intersectional identities, such as Native American women with IDD. OBJECTIVE: This study aims to assess the feasibility and acceptability of My Health My Choice (MHMC), an adaptation of the Women Be Healthy 2 program. There are 2 parts to the study: adaptation of the Women Be Healthy 2 program and feasibility and acceptability testing of MHMC. METHODS: Individuals aged over 18 years who identify as Native American females with IDD and their caregivers (N=30 women-caregiver dyads) are eligible for the study. Participants, who are affiliated with 2 partnering sites in Arizona (1 rural and 1 urban), complete pre- and postsurveys assessing knowledge, self-efficacy, and screening expectations before and immediately after completing the program. In addition, all participants complete brief satisfaction surveys after each of the 6 educational sessions. A subsample of Native American women with an IDD (n=12), caregivers (n=12), and community health educators (n=2) who participate in the MHMC program will provide semistructured qualitative input regarding the content, delivery, and cultural relevance of the program. RESULTS: The adaptation of the culturally responsive MHMC program was completed in August 2021. In November 2021, the project team began recruitment for feasibility and acceptability studies. Feasibility will be examined using participation metrics, and acceptability will be measured using satisfaction measures. Pre- and postmeasures in cancer screening knowledge, self-efficacy, and screening expectations will examine improvements among participants. CONCLUSIONS: The results of feasibility and acceptability testing of MHMC will guide future implementation studies of the program. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/37801.

Adapting a Cancer Screening Education Program for Native American Women with Disabilities.

Like other minoritized groups, people with disabilities experience lack of access to health care. People with intellectual and developmental disabilities (IDD), which are lifelong disabilities diagnosed in childhood requiring varying levels of support for completing daily activities, are less likely to receive preventive health care such as cancer screening. Furthermore, Native American women are less likely than White women to receive cancer screenings. In this qualitative research with Native American women with IDD, their caregivers, healthcare and service providers, and community leaders, we asked, "What are the influences on breast and cervical cancer screening for Native American women with IDD?" with the goal of adapting an existing cancer screening education program. Semi-structured in-depth interviews (N = 48) were audio recorded and transcribed verbatim for analysis. Two coders used a constant comparative method to code and revise the a priori codebook with subthemes and new codes. Results highlighted individual, interpersonal, and community/institutional influences on screening, emphasizing the individual effects of social inequity on this population, the importance of ableist bias in recommending cancer screenings, and opportunities to integrate traditional ways of knowing with allopathic medicine. Results of this work were used to adapt a cancer screening education program for Native American women with IDD.

Community-Engaged Research to Address Health Disparities of Indigenous Women With Disabilities.

INTRODUCTION: To address health disparities among underserved populations, occupational therapists can participate in community-engaged research and practice to improve access to preventive health services. METHODS: This study used grounded theory and participant observation approaches to identify lessons learned from a community-engaged research project to improve cancer screening rates for Indigenous women with an intellectual and/or developmental disability (IDD). Audio recordings of meetings with a community advisory board (AB) were analyzed with an inductive coding approach, and results were member checked with AB members. The AB members (N = 8) were involved in statewide Indigenous health, cancer, and disability activities. Six of the eight AB members identified as Indigenous. RESULTS: Key themes highlighted within the Indigenous research framework included reflection, relationship building, project planning, and project execution. Results of this phase of the research project highlight the importance of codesigning research projects with Indigenous communities. CONCLUSION: The findings have limited transferability to other research contexts. However, this study highlights the need for future research on best practices for occupational therapists to participate in community-engaged research projects to address health disparities in underserved populations, such as Indigenous women with IDD.

Are Researchers Addressing Cancer Treatment and Survivorship Among People With Intellectual and Developmental Disabilities in the U.S.? A Scoping Review.

People with intellectual and developmental disabilities (PWIDD) often encounter barriers in the health care system when seeking general and specialized medical care. Literature has shown that PWIDD experience a lack of proper screening for and prevention of cancer compared to the general population. However, less is known regarding the cancer care and survivorship of PWIDD, especially in the United States. In this review, we examine what is currently known about the primary, psychosocial, and palliative care of PWIDD diagnosed with cancer. Our analyses reveal an immediate need for improvement in caregiver support, collaboration among health care providers, and ethical approaches to information disclosure for this population, as well as the establishment of more reliable standards of care through additional research with PWIDD.

A Scoping Review of Barriers and Facilitators to Pap Testing in Women with Disabilities and Serious Mental Illnesses: Thirty Years After the Americans with Disabilities Act.

Background: Thirty years after the Americans with Disabilities Act (ADA) was passed, promising equal access to health services for people with disabilities and serious mental illness, research on Pap testing continues to uncover health disparities among women with disabilities and women with serious mental illnesses, including those that identify as an ethnic/racial minority. Aim: The purpose of this paper is to describe and present the literature on the barriers and facilitators women with disabilities and women with serious mental illnesses face with receiving a Pap test using the social ecological model. We also examined the degree to which racial/ethnic minority women were included in these articles. Method: A scoping review was conducted where the research team searched United States academic literature from 1990 through February 2020 in PubMed, Medline, and CINAHL using general subject headings for disability, mental illness, and Pap testing. Results: Thirty-two articles met inclusion criteria. More barriers than facilitators were mentioned in articles. Barriers and facilitators are organized into three groups according to social ecological model and include individual (e.g., socioeconomic status, anxiety, education), interpersonal (e.g., family, living environment), and organizational factors (health care provider training, health care system). Participant's race/ethnicity were often reported but minoritized populations were often not the focus of articles. Conclusions: More articles discussed the difficulties that women with disabilities and women with serious mental illnesses face with receiving a Pap test than facilitators to Pap testing. Additional research should focus on the intersectionality race/ethnicity and women with disabilities and women with serious mental illnesses in relation to Pap testing.