Pursuing Research Justice Through Community-Academic Partnership to Address Racial Disparities in Preterm Birth.

BACKGROUND: The California Preterm Birth Initiative is a community-engaged research effort focused on addressing racial disparities in birth outcomes. OBJECTIVES: To highlight three community-academic partnership strategies and identify partners' lessons learned and recommendations. METHODS: We conducted interviews (n = 38), four focus groups (n = 23), a document review (n = 174), and meeting/event observations (n = 36). We performed content analysis and structural and emerging coding of the data, which involved extracting and sorting information into themes. LESSONS LEARNED: Five themes emerged across the strategies as essential for successful partnerships addressing racial disparities: 1) incorporate a racial equity approach; 2) value community knowledge; 3) ensure accountability to community priorities; 4) build relationships and trust; and 5) address structural barriers to community-academic partnerships. CONCLUSIONS: Community-academic partnerships addressing racial health disparities should confront internal and structural power dynamics early on and support affected communities to lead the efforts, including committing to funding and capacity-building activities to ensure research justice.

Adaptation of the Person-Centered Maternity Care Scale in the United States: Prioritizing the Experiences of Black Women and Birthing People.

INTRODUCTION: Mistreatment by health care providers disproportionately affects Black, Indigenous, and other people of color in the United States. The goal of this study is to adapt the global Person-Centered Maternity Care (PCMC) scale for use in the United States, with particular attention to the experiences of Black women and birthing people. METHODS: We used a community-engaged approach including expert reviews and cognitive interviews to assess content validity, relevance, comprehension, and comprehensiveness of the PCMC items. Surveys of 297 postpartum people, 82% of whom identified as Black, were used for psychometric analysis in which we assessed construct and criterion validity and reliability. The University of California, San Francisco California Preterm Birth Initiative's Community Advisory Board, which consists of community members, community-based health workers, and social service providers in Northern California, provided input during all stages of the project. RESULTS: Through an iterative process of factor analysis, discussions with the Community Advisory Board, and a prioritization survey, we eliminated items that performed poorly in psychometric analysis, yielding a 35-item PCMC-U.S. scale with subscales for dignity and respect, communication and autonomy, and responsive and supportive care. The Cronbach's alpha for the full scale is 0.95 and for the subscales is 0.87. Standardized summative scores range from 0 to 100, with higher scores indicating more PCMC. Correlations with related measures indicated high criterion validity. CONCLUSIONS: The 35-item PCMC-U.S. scale and its subscales have high validity and reliability in a sample of predominantly Black women. This scale provides a tool to support efforts to reduce the inequities in birth outcomes experienced by Black, Indigenous, and other people of color.

Development of the person-centered prenatal care scale for people of color.

BACKGROUND: Given the stark disparities in maternal mortality and adverse birth outcomes among Black, indigenous, and other people of color, there is a need to better understand and measure how individuals from these communities experience their care during pregnancy. OBJECTIVE: This study aimed to develop and validate a tool that can be used to measure person-centered prenatal care that reflects the experiences of people of color. STUDY DESIGN: We followed standard procedures for scale development-integrated with community-based participatory approaches-to adapt a person-centered maternity care scale that was initially developed and validated for intrapartum care in low-resource countries to reflect the needs and prenatal care experiences of people of color in the United States. The adaptation process included expert reviews with a Community Advisory Board, consisting of community members, community-based health workers, and social service providers from San Francisco, Oakland, and Fresno, to assess content validity. We conducted cognitive interviews with potential respondents to assess the clarity, appropriateness, and relevance of the questions, which were then refined and administered in an online survey to people in California who had given birth in the past year. Data from 293 respondents (84% of whom identified as Black) who received prenatal care were used in psychometric analysis to assess construct and criterion validity and reliability. RESULTS: Exploratory factor analysis yielded 3 factors with eigenvalues of >1, but with 1 dominant factor. A 34-item version of the person-centered prenatal care scale was developed based on factor analyses and recommendations from the Community Advisory Board. We also developed a 26-item version using stricter criteria for relevance, factor loadings, and uniqueness. Items were grouped into 3 conceptual domains representing subscales for "dignity and respect," "communication and autonomy," and "responsive and supportive care." The Cronbach alphas for the 34-item and the 26-item versions and for the subscales were >0.8. Scores based on the sum of responses for the 2 person-centered prenatal care scale versions and all subscales were standardized to range from 0 to 100, where higher scores indicate more person-centered prenatal care. These scores were correlated with global measures of prenatal care satisfaction suggesting good criterion validity. CONCLUSION: We present 2 versions of the person-centered prenatal care scale: a 34-item and a 26-item version. Both versions have high validity and reliability in a sample made up predominantly of Black women. This scale will facilitate measurement to improve person-centered prenatal care for people of color and could contribute to reducing disparities in birth outcomes. The similarity with the original scale also suggests that the person-centered prenatal care may be applicable across different contexts. However, validation with more diverse samples in additional settings is needed.

Risk and Protective Factors for Preterm Birth Among Black Women in Oakland, California.

This project examines risk and protective factors for preterm birth (PTB) among Black women in Oakland, California. Women with singleton births in 2011-2017 (n = 6199) were included. Risk and protective factors for PTB and independent risk groups were identified using logistic regression and recursive partitioning. Having less than 3 prenatal care visits was associated with highest PTB risk. Hypertension (preexisting, gestational), previous PTB, and unknown Women, Infant, Children (WIC) program participation were associated with a two-fold increased risk for PTB. Maternal birth outside of the USA and participation in WIC were protective. Broad differences in rates, risks, and protective factors for PTB were observed.

Research priorities of women at risk for preterm birth: findings and a call to action.

BACKGROUND: Traditional hierarchical approaches to research give privilege to small groups with decision-making power, without direct input from those with lived experience of illness who bear the burden of disease. A Research Justice framework values the expertise of patients and communities as well as their power in creating knowledge and in decisions about what research is conducted. Preterm birth has persisted at epidemic levels in the United States for decades and disproportionately affects women of color, especially Black women. Women of color have not been included in setting the agenda regarding preterm birth research. METHODS: We used the Research Priorities of Affected Communities protocol to elicit and prioritize potential research questions and topics directly from women of color living in three communities that experience disproportionately high rates of preterm birth. Women participated in two focus group sessions, first describing their healthcare experiences and generating lists of uncertainties about their health and/or healthcare during pregnancy. Women then participated in consensus activities to achieve 'top-priority' research questions and topic lists. The priority research questions and topics produced by each group were examined within and across the three regions for similarities and differences. RESULTS: Fifty-four women participated in seven groups (14 sessions) and generated 375 researchable questions, clustered within 22 topics and four overarching themes: Maternal Health and Care Before, During, and After Pregnancy; Newborn Health and Care of the Preterm Baby; Understanding Stress and Interventions to Prevent or Reduce Stress; and Interpersonal and Structural Health Inequities. The questions and topics represent a wide range of research domains, from basic science, translational, clinical, health and social care delivery to policy and economic research. There were many similarities and some unique differences in the questions, topics and priorities across the regions. CONCLUSIONS: These findings can be used to design and fund research addressing unanswered questions that matter most to women at high risk for preterm birth. Investigators and funders are strongly encouraged to incorporate women at the front lines of the preterm birth epidemic in research design and funding decisions, and more broadly, to advance methods to deepen healthcare research partnerships with affected communities.

Health care experiences of pregnant, birthing and postnatal women of color at risk for preterm birth.

BACKGROUND: Chronic stress is a known risk factor for preterm birth, yet little is known about how healthcare experiences add to or mitigate perceived stress. In this study, we described the pregnancy-related healthcare experiences of 54 women of color from Fresno, Oakland, and San Francisco, California, with social and/or medical risk factors for preterm birth. METHODS: This study was a secondary analysis of focus group data generated as part of a larger project focused on patient and community involvement in preterm birth research. English and Spanish speaking women, age 18 or greater with social and/or medical risk factors for preterm birth participated in two focus groups, six weeks apart. Data from the first focus groups are included in this analysis. RESULTS: Five themes emerged from thematic analysis of the transcripts. Participants described disrespect during healthcare encounters, including experiences of racism and discrimination; stressful interactions with all levels of staff; unmet information needs; and inconsistent social support. Despite these adverse experiences, women felt confidence in parenting and newborn care. Participant recommendations for healthcare systems improvement included: greater attention to birth plans, better communication among multiple healthcare providers, more careful listening to patients during clinical encounters, increased support for social programs such as California's Black Infant Health, and less reliance on past carceral history and/or child protective services involvement. DISCUSSION: The women in this study perceived their prenatal healthcare as a largely disrespectful and stressful experience. Our findings add to the growing literature that women of color experience discrimination, racism and disrespect in healthcare encounters and that they believe this affects their health and that of their infants.

A Novel Method for Involving Women of Color at High Risk for Preterm Birth in Research Priority Setting.

Involvement of patients and the public is now recognized to be essential for the good conduct of research. Patient and public involvement in research priority setting and funding decisions is only beginning to be recognized as important, and methods for doing so are nascent. This protocol describes the Research Prioritization by Affected Communities (RPAC) protocol and findings from its use with women at high socio-demographic risk for preterm birth. The goal was to directly involve these women in identifying and prioritizing their unanswered questions about pregnancy, birth and neonatal care, and treatment so that their views could be included in research priority setting by funders and researchers. The RPAC protocol may be used to meaningfully involve under-represented groups at high-risk for specific health problems, or those who face disproportionate burden of disease, in research strategy and funding priority setting.