Karen Patricia Williams

Mistrust of Health Care Organizations Is Associated with Underutilization of Health Services

PURPOSE We report the validation of an instrument to measure mistrust of health care organizations and examine the relationship between mistrust and health care service underutilization. METHODS We conducted a telephone survey of a random sample of households in Baltimore City, MD. We surveyed 401 persons and followed up with 327 persons (81.5 percent) 3 weeks after the baseline interview. We conducted tests of the validity and reliability of the Medical Mistrust Index (MMI) and then conducted multivariate modeling to examine the relationship between mistrust and five measures of underutilization of health services. RESULTS Using principle components analysis, we reduced the 17-item MMI to 7 items with a single dimension. Test-retest reliability was moderately strong, ranging from Pearson correlation of 0.346-0.697. In multivariate modeling, the MMI was predictive of four of five measures of underutilization of health services: failure to take medical advice (b=1.56, p<.01), failure to keep a follow-up appointment (b=1.11, p=.01), postponing receiving needed care (b=0.939, p=.01), and failure to fill a prescription (b=1.48, p=.002). MMI was not significantly associated with failure to get needed medical care (b=0.815, p=.06). CONCLUSIONS The MMI is a robust predictor of underutilization of health services. Greater attention should be devoted to building greater trust among patients.

Development of decision-support intervention for Black women with breast cancer.

Background: Adjuvant therapy improves breast cancer survival but is underutilized by Black women. Few interventions have addressed this problem. This preliminary report describes the process we used to develop a decision‐support intervention for Black women eligible for adjuvant therapy. Aims were to use qualitative methods to describe factors that influence Black womens adjuvant therapy decisions, use these formative data to develop messages for a treatment decision‐support intervention, and pilot test the acceptability and utility of the intervention with community members and newly diagnosed women.

Individual, Provider, and System Risk Factors for Breast and Cervical Cancer Screening Among Underserved Black, Latina, and Arab Women

BACKGROUND Socioeconomic and racial/ethnic disparities in breast and cervical cancer screening persist. An exploratory study was conducted to better understand co-occurring risk factors in underserved groups that could inform interventions to improve screening adherence. The objective of this study was to examine associations between breast and cervical cancer screening adherence and co-occurring risk factors in three racial/ethnic groups of underserved women. METHODS Black, Latina, and Arab women (N=514), ages 21 to 70 years, were enrolled into the Kin Keeper(SM) randomized controlled trial in communities around Detroit, Michigan. We used participant baseline assessments (e.g., demographic characteristics, health literacy) to explore screening risks using an additive approach and multivariate logistic analyses. RESULTS For black women, having more health literacy risks were associated with reduced odds of a clinical breast exam (CBE), mammogram, and Papanicolaou (Pap) test; more competing priorities were associated with reduced odds of a Pap test; lack of doctor mammogram recommendation was significantly associated with decreased odds of CBE. For Latina women, lack of doctor recommendations were significantly associated with decreased odds of CBE, mammogram, and Pap test. For Arab women, lack of doctor recommendations were significantly associated with decreased odds of CBE, mammogram, and Pap test; more competing priorities were significantly associated with reduced odds of CBE and Pap test. All results were significant at p<0.05. CONCLUSIONS Characteristics associated with breast and cervical screening adherence differs among Black, Latina, and Arab underserved women. Interventions to improve screening should be tailored for racial/ethnic groups with particular attention to competing survival priorities, health literacy risks factors, and provider recommendations.

Kin KeeperSM: design and baseline characteristics of a community-based randomized controlled trial promoting cancer screening in Black, Latina, and Arab women.

BACKGROUND Although breast and cervical cancer deaths have declined due to early screening, detection, and more effective treatment, racial and ethnic disparities persist. This paper describes the study design and baseline characteristics of a randomized controlled trial (RCT) evaluating the effectiveness of the Kin Keeper(SM) Cancer Prevention Intervention, a family-focused educational intervention for underserved women applied in a community-based setting to promote health literacy and screening adherence to address cancer disparities. METHODS Female public health community health workers (CHWs) were trained to administer the intervention. They recruited female clients from their public health program caseload and asked each to assemble two to four adult female family members for the breast and cervical cancer home-based education sessions the CHWs would deliver in English, Spanish or Arabic. We randomized the clients into the kin keeper group (treatment) or the participant client group (control). RESULTS Complete data were obtained on 514 Black, Latina, and Arab women. Close to half were unemployed and had yearly family income below

Evaluating the Knowledge of Breast Cancer Screening and Prevention among Arab-American Women in Michigan

20,000. Thirty-four percent had no medical insurance, and 21% had diabetes. Almost 40% had no mammography in the last year. Treatment and control groups were similar on most sociodemographics but showed differences in breast and cervical screening history. CONCLUSIONS This innovative study demonstrates the implementation of an RCT using community-based participatory research, while delivering cancer prevention education across womans life span with women not connected to the health care system.

Women's priorities for lay health home visitors: implications for eliminating health disparities among underserved women.

Arab-American women are more likely to be diagnosed with advanced staged breast cancer. We analyzed data from 100 women utilizing a breast cancer literacy assessment tool aimed at understanding functional literacy levels about breast-self exams (BSE), clinical breast exams (CBE), and mammograms. The educational program improved womens knowledge of BSE (OR = 0.15; 95% CI = 0.04, 0.50) and CBE (OR = 0.15; 95% CI = 0.04, 0.54), more for women with higher education. Consideration of womens educational status is an important factor in planning educational programs to improve knowledge on breast cancer screening and prevention in this minority population.

Knowledge and Perspectives of Breast and Cervical Cancer Screening Among Female African Immigrants in the Washington D.C. Metropolitan Area

Abstract While racial, ethnic, and socioeconomic health disparities in maternal and child health persist among women, few studies describe experiences of low-income women during pregnancy. We undertook a qualitative study of womens self-reported experiences with home visitors to gain understanding of priorities for participation and service delivery. Lay health home visitors provided satisfactory services and maintained close relationships with their clients. The mother-to-mother relationship is critical in facilitating continued participation in and ensuring positive health and social outcomes from lay health home visitation services. Many women lacked sufficient social support during their pregnancy and received this from the health visitor. Appropriate integration of lay health visitors with traditional prenatal care may alleviate many of the deleterious stressors that low-income women experience and may ultimately impact racial, ethnic, and socioeconomic disparities in maternal and child health.

African American Women’s Limited Knowledge and Experiences with Genetic Counseling for Hereditary Breast Cancer

Black women in the USA have both a higher percentage of late-stage diagnoses as well as the highest rates of mortality from breast cancer when compared to women of other ethnic subgroups. Additionally, Black women have the second highest prevalence of cervical cancer. Many reports evaluating the cancer outcomes of Black women combine data on African-born immigrants and US-born Blacks. This categorization ignores subtle yet important cultural differences between the two groups, which may ultimately affect breast and cervical cancer screening practices. Therefore, this study investigated knowledge and awareness levels of breast and cervical cancer screening practices among female African-born immigrants to the USA residing in the Washington D.C. metropolitan area. Data were collected from 38 participants through key informant interviews, focus group sessions, and a sociodemographic questionnaire over a 3-month study period. Results suggest that fatalism, stigma, and privacy are among the major factors that affect the decision to seek preventative screening measures for breast and cervical cancer among this population. Additionally, the study implies that cervical cancer awareness is significantly lower among this population when compared to breast cancer. This study highlights differences between women of African descent residing in the USA and the need for continued research to increase understanding of the manner in which immigrant status affects health-seeking behavior. This information is critical for researchers, physicians, and public health educators aiming to design culturally appropriate interventions to effectively reduce the prevalence of breast and cervical cancer among female African immigrants living in the USA.

Answering the Call: A Tool That Measures Functional Breast Cancer Literacy

Genetic counseling and testing for hereditary breast cancer have the potential benefit of early detection and early interventions in African American women. However, African American women have low use of these services compared to White women. We conducted two focus groups with African American women diagnosed with breast cancer (affected group, n = 13) and women with at least one first-degree relative with breast/ovarian cancer (unaffected group, n = 8). A content analysis approach was employed to analyze interview data. Breast cancer survivors had more knowledge about genetic counseling and testing than participants who were unaffected with cancer. However, knowledge about genetic counseling was limited in both groups. Barriers to pursuing genetic counseling and testing included poor understanding of the genetic counseling and testing process, fear of carrying the mutation, concerns about discrimination, and cost. Motivators to participate in genetic counseling and testing included desire to help family members, insurance coverage, and potential of benefiting the larger African American community. Education efforts are needed to increase genetic counseling and testing awareness in the African American community.

A Community-Based Approach to Translating and Testing Cancer Literacy Assessment Tools

There is a need for health care providers and health care educators to ensure that the messages they communicate are understood. The purpose of this research was to test the reliability and validity, in a culturally diverse sample of women, of a revised Breast Cancer Literacy Assessment Tool (Breast-CLAT) designed to measure functional understanding of breast cancer in English, Spanish, and Arabic. Community health workers verbally administered the 35-item Breast-CLAT to 543 Black, Latina, and Arab American women. A confirmatory factor analysis using a 2-parameter item response theory model was used to test the proposed 3-factor Breast-CLAT (awareness, screening and knowledge, and prevention and control). The confirmatory factor analysis using a 2-parameter item response theory model had a good fit (TLI = .91, RMSEA = .04) to the proposed 3-factor structure. The total scale reliability ranged from .80 for Black participants to .73 for total culturally diverse sample. The three subscales were differentially predictive of family history of cancer. The revised Breast-CLAT scales demonstrated internal consistency reliability and validity in this multiethnic, community-based sample.