Being Known: A Grounded Theory Study of the Meaning of Quality Maternity Care to People of Color in Boston.

INTRODUCTION: Experiences of people of color with maternity care are understudied but understanding them is important to improving quality and reducing racial disparities in birth outcomes in the United States. This qualitative study explored experiences with maternity care among people of color to describe the meaning of quality maternity care to the cohort and, ultimately, to inform the design of a freestanding birth center in Boston. METHODS: Using a grounded theory design and elements of community-based participatory research, community activists developing Boston's first freestanding birth center and academics collaborated on this study. Semistructured interviews and focus groups with purposefully sampled people of color were conducted and analyzed using a constant comparative method. Interviewees described their maternity care experiences, ideas about perfect maternity care, and how a freestanding birth center might meet their needs. Open coding, axial coding, and selective coding were used to develop a local theory of what quality care means. RESULTS: A total of 23 people of color participated in semistructured interviews and focus groups. A core phenomenon arose from the narratives: being known (ie, being seen or heard, or being treated as individuals) during maternity care was an important element of quality care. Contextual factors, including interpersonal and structural racism, power differentials between perinatal care providers and patients, and the bureaucratic nature of hospital-based maternity care, facilitated negative experiences. People of color did extra work to prevent and mitigate negative experiences, which left them feeling traumatized, regretful, or sad about maternity care. This extra work came in many forms, including cognitive work such as worrying about racism and behavioral changes such as dressing differently to get health care needs met. DISCUSSION: Being known characterizes quality maternity care among people of color in our sample. Maternity care settings can provide personalized care that helps clients feel known without requiring them to do extra work to achieve this experience.

Trust yet verify: physicians as trusted sources of health information on HPV for black women in socioeconomically marginalized populations.

BACKGROUND: Human papilloma virus (HPV) infection is highest among Black women and women of low socio economic position (SEP). These groups face inequities in access to health information on HPV. OBJECTIVES: Our study sought to understand key information channels for delivering health information regarding HPV and the HPV vaccine to Black women of low SEP in Boston, Massachusetts. We anticipated that, owing to a legacy of experiences of discrimination, Black women of low SEP would prefer information from trusted and accessible sources, including friends, family, and community agencies, rather than clinical providers. METHODS: We conducted a qualitative analysis using focus groups. We conducted five focus groups among 25 women in Boston, Massachusetts. RESULTS: Contrary to what we anticipated, we found that women in all of the focus groups preferred to receive information from a physician or health center. Participants preferred to receive print materials they could triangulate with other sources. Notably, study participants had high access to care. CONCLUSIONS: Our study suggests that physicians are trusted and preferred sources of information on HPV for Black women of low SEP in Boston. Our data underscore an important avenue for intervention: to improve dissemination of HPV-related information through physicians, including outreach in community settings.

Addressing cancer disparities via community network mobilization and intersectoral partnerships: a social network analysis.

Community mobilization and collaboration among diverse partners are vital components of the effort to reduce and eliminate cancer disparities in the United States. We studied the development and impact of intersectoral connections among the members of the Massachusetts Community Network for Cancer Education, Research, and Training (MassCONECT). As one of the Community Network Program sites funded by the National Cancer Institute, this infrastructure-building initiative utilized principles of Community-based Participatory Research (CBPR) to unite community coalitions, researchers, policymakers, and other important stakeholders to address cancer disparities in three Massachusetts communities: Boston, Lawrence, and Worcester. We conducted a cross-sectional, sociometric network analysis four years after the network was formed. A total of 38 of 55 members participated in the study (69% response rate). Over four years of collaboration, the number of intersectoral connections reported by members (intersectoral out-degree) increased, as did the extent to which such connections were reported reciprocally (intersectoral reciprocity). We assessed relationships between these markers of intersectoral collaboration and three intermediate outcomes in the effort to reduce and eliminate cancer disparities: delivery of community activities, policy engagement, and grants/publications. We found a positive and statistically significant relationship between intersectoral out-degree and community activities and policy engagement (the relationship was borderline significant for grants/publications). We found a positive and statistically significant relationship between intersectoral reciprocity and community activities and grants/publications (the relationship was borderline significant for policy engagement). The study suggests that intersectoral connections may be important drivers of diverse intermediate outcomes in the effort to reduce and eliminate cancer disparities. The findings support investment in infrastructure-building and intersectoral mobilization in addressing disparities and highlight the benefits of using CBPR approaches for such work.

Case management intervention in cervical cancer prevention: the Boston REACH coalition women's health demonstration project.

BACKGROUND: The Boston REACH Coalition developed a case management intervention for Black women in primary care settings to identify and reduce medical and social obstacles to cervical cancer screening and following up abnormal results. METHODS: The 5-year intervention was evaluated among 732 Black women aged 18 to 75 who were at high risk for inadequate Pap smear screening and follow-up. Case managers provided social services referrals to address patient-identified social concerns (e.g., transportation, housing), as well as navigation to prompt screening and follow-up of abnormal tests. The three study aims were to (1) identify the social factors associated with Pap smear screening at baseline before intervention, (2) evaluate the correlation between exposure to case management intervention and achieving recommended Pap screening intervals, and (3) evaluate the correlation between exposure to case management intervention and having timely follow-up of abnormal Pap smear tests. RESULTS: We found that a lack of a regular clinical provider, concerns communicating with providers, poor self-rated health, and having less than a high school education were important correlates of recent Pap smear screening before the case management intervention. During the case management intervention, we found a significant increase in achieving recommended Pap smear screening intervals among women with a recent Pap smear at study entry (increasing from 52% in the first year to 80% after 4 or more years; p < .01), but not among women who entered the study without a recent Pap smear (increasing from 31% in the first year to 44% after 4 or more years; p = .39). During case management intervention, having social support for childcare was associated with regular screening among women without a recent Pap smear (odds ratio [OR], 3.52; 95% confidence interval [CI], 1.28-9.69). Insurance status was the key factor in timely clinically indicated follow-up of abnormal results (uninsured OR, 0.27; 95% CI, 0.08-0.86), rather than case management intervention. CONCLUSIONS: Exposure to case management was associated with regular Pap smear screening among women who recently engaged in screening. Future research should focus on systems changes to address social determinants of health, including strategies to facilitate screening for Black women without social support for childcare. To improve follow-up of abnormal results, financial access to care should be addressed.

Building a regional health equity movement: the grantmaking model of a local health department.

The Boston Public Health Commission's Center for Health Equity and Social Justice provides grant funding, training, and technical assistance to 15 organizations and coalitions across New England to develop, implement, and evaluate community-based policy and systems change strategies that address social determinants of health and reduce racial and ethnic health inequities. This article describes Boston Public Health Commission's health equity framework, theory of change regarding the elimination of racial and ethnic health inequities, and current grantmaking model. To conclude, the authors evaluate the grant model and offer lessons learned from providing multiyear regional grants to promote health equity.

Mammography use among Black women: the role of electronic medical records.

BACKGROUND AND AIMS: Accurately documenting mammography use is essential to assess quality of care for early breast cancer detection in underserved populations. Self-reports and medical record reports frequently result in different accounts of whether a mammogram was performed. We hypothesize that electronic medical records (EMRs) provide more accurate documentation of mammography use than paper records, as evidenced by the level of agreement between women's self-reported mammography use and mammography use documented in medical records. METHODS: Black women aged 40-75 were surveyed in six primary care sites in Boston, Massachusetts (n = 411). Survey data assessed self-reported mammography prevalence within 2 years of study entry. Corresponding medical record data were collected at each site. Positive predictive value (PPV) of self-report and kappa statistics compared data agreement among sites with and without EMRs. Logistic regression estimated effects of site and patient characteristics on agreement between data sources. RESULTS: Medical records estimated a lower prevalence of mammography use (58%) than self-report (76%). However, self-report and medical record estimates were more similar in sites with EMRs. PPV of self-report was 88% in sites with continuous access to EMRs and 61% at sites without EMRs. Kappa statistics indicated greater data agreement at sites with EMRs (0.72, 95% CI 0.56-0.88) than without EMRs (0.46, 95% CI 0.29-0.64). Adjusted for covariates, odds of data agreement were greatest in sites where EMRs were available during the entire study period (OR 4.31, 95% CI 1.67-11.13). CONCLUSIONS: Primary care sites with EMRs better document mammography use than those with paper records. Patient self-report of mammography screening is more accurate at sites with EMRs. Broader access to EMRs should be implemented to improve quality of documenting mammography use. At a minimum, quality improvement efforts should confirm the accuracy of paper records with supplemental data.

Addressing social determinants of health to improve access to early breast cancer detection: results of the Boston REACH 2010 Breast and Cervical Cancer Coalition Women's Health Demonstration Project.

BACKGROUND: The Boston Racial and Ethnic Approaches to Community Health (REACH) 2010 Breast and Cervical Cancer Coalition developed a case management intervention for women of African descent to identify and reduce medical and social obstacles to breast cancer screening and following up abnormal results. METHODS: We targeted black women at high risk for inadequate cancer screening and follow-up as evidenced by a prior pattern of missed clinic appointments and frequent urgent care use. Case managers provided referrals to address patient-identified social concerns (e.g., transportation, housing, language barriers), as well as navigation to prompt screening and follow-up of abnormal tests. We recruited 437 black women aged 40-75, who received care at participating primary care sites. The study was conducted as a prospective cohort study rather than as a controlled trial and evaluated intervention effects on mammography uptake and longitudinal screening rates via logistic regression and timely follow-up of abnormal tests via Cox proportional hazards models. RESULTS: A significant increase in screening uptake was found (OR 1.53, 95% CI 1.13-2.08). Housing concerns (p < 0.05) and lacking a regular provider (p < 0.01) predicted poor mammography uptake. Years of participation in the intervention increased odds of obtaining recommended screening by 20% (OR 1.20, 95% CI 1.02-1.40), but this effect was attenuated by covariates (p = 0.53). Timely follow-up for abnormal results was achieved by most women (85%) but could not be attributed to the intervention (HR 0.95, 95% CI 0.50-1.80). CONCLUSIONS: Case management was successful at promoting mammography screening uptake, although no change in longitudinal patterns was found. Housing concerns and lacking a regular provider should be addressed to promote mammography uptake. Future research should provide social assessment and address social obstacles in a randomized controlled setting to confirm the efficacy of social determinant approaches to improve mammography use.