Emmanuel M. Ngui

“You Learn to Go Last”: Perceptions of Prenatal Care Experiences among African-American Women with Limited Incomes

African American infants die at higher rates and are at greater risk of adverse birth outcomes than White infants in Milwaukee. Though self-reported experiences of racism have been linked to adverse health outcomes, limited research exists on the impact of racism on women’s prenatal care experiences. The purpose of this study was to examine the experiences of racial discrimination during prenatal care from the perspectives of African American women in a low income Milwaukee neighborhood. Transcripts from six focus groups with twenty-nine women and two individual interviews were analyzed to identify important emergent themes. Validity was maintained using an audit trail, peer debriefing, and two individual member validation sessions. Participants identified three areas of perceived discrimination based on: (1) insurance or income status, (2) race, and (3) lifetime experiences of racial discrimination. Women described being treated differently by support staff and providers based on type of insurance (public versus private), including perceiving a lower quality of care at clinics that accepted public insurance. While some described personally-mediated racism, the majority of women described experiences that fit within a definition of institutionalized racism—in which the system was designed in a way that worked against their attempts to get quality prenatal care. Women also described lifetime experiences of racial discrimination. Our findings suggest that African American women with limited incomes perceive many provider practices and personal interactions during prenatal care as discriminatory. Future studies could explore the relationship between perceptions of discrimination and utilization of prenatal care.

Anatomy of Good Prenatal Care: Perspectives of Low Income African-American Women on Barriers and Facilitators to Prenatal Care

BackgroundAlthough early, consistent prenatal care (PNC) can be helpful in improving poor birth outcomes, rates of PNC use tend to be lower among African-American women compared to Whites. This study examines low-income African-American women’s perspectives on barriers and facilitators to receiving PNC in an urban setting.MethodsWe conducted six focus groups with 29 women and individual structured interviews with two women. Transcripts were coded to identify barriers and facilitators to obtaining PNC; codes were reviewed to identify emergent themes.ResultsBarriers to obtaining PNC included structural barriers such as transportation and insurance, negative attitudes towards PNC, perceived poor quality of care, unintended pregnancy, and psychosocial stressors such as overall life stress and chaos. Facilitators of PNC included positive experiences such as trusting relationships with providers, respectful staff and providers, and social support.ConclusionsFindings suggest important components in an ideal PNC model to engage low-income African-American women.

Relationship of Paternity Status, Welfare Reform Period, and Racial/Ethnic Disparities in Infant Mortality

The objective of this study was to examine the relationship of paternity status, welfare reform period, and racial/ethnic disparities in infant mortality. The study used retrospective analysis of birth outcomes data from singleton birth/infant death data in Milwaukee, Wisconsin, from 1993 to 2009. Multivariate logistic regression was used to examine the relationship between paternity status, welfare reform period, and infant mortality, adjusting for maternal and infant characteristics. Data consisted of almost 185,000 singleton live births and 1,739 infant deaths. Although unmarried women with no father on record made up about 32% of the live births, they accounted for over two thirds of the infant deaths compared with married women with established paternity who made up 39% of live births but had about a quarter of infant deaths. After adjustments, any form of paternity establishment was protective against infant mortality across all racial/ethnic groups. Unmarried women with no father on record had twice to triple the odds of infant mortality among all racial/ethnic groups. The likelihood of infant mortality was only significantly greater for African American women in the postwelfare (1999-2004; odds ratio = 1.27; 95% confidence interval = 1.10-1.46) period compared with the 1993 to 1998 period. Study findings suggest that any form of paternity establishment may have protective effect against infant mortality. Welfare reform changes may have reduced some of the protection against infant mortality among unmarried African American women that was present before the welfare legislation. Policies and programs that promote or support increased paternal involvement and establishment of paternity may improve birth outcomes and help reduce infant mortality.

Methods and protocol of a mixed method quasi-experiment to evaluate the effects of a structural economic and food security intervention on HIV vulnerability in rural Malawi: The SAGE4Health Study

BackgroundPoverty and lack of a predictable, stable source of food are two fundamental determinants of ill health, including HIV/AIDS. Conversely, episodes of poor health and death from HIV can disrupt the ability to maintain economic stability in affected households, especially those that rely on subsistence farming. However, little empirical research has examined if, and how, improvements in people’s economic status and food security translate into changes in HIV vulnerability.MethodsIn this paper, we describe in detail the methods and protocol of an academic-NGO collaboration on a quasi-experimental, longitudinal study of the mechanisms and magnitude of the impact of a multilevel economic and food security program (Support to Able-Bodied Vulnerable Groups to Achieve Food Security; SAFE), as implemented by CARE. Primary outcomes include HIV vulnerability (i.e., HIV risk behaviors, HIV infection), economic status (i.e., income, household assets) and food security (including anthropometric measures). We recruited participants from two types of areas of rural central Malawi: traditional authorities (TA) selected by CARE to receive the SAFE program (intervention group) and TAs receiving other unrelated CARE programming (controls). In the intervention TAs, we recruited 598 program participants (398 women, 200 men) and interviewed them at baseline and 18- and 36-month follow-ups; we interviewed 301 control households. In addition, we conducted random surveys (n = 1002) in the intervention and control areas with a 36-month assessment interval, prior to and after implementation of SAFE. Thus, we are examining intervention outcomes both in direct SAFE program participants and their larger communities. We are using multilevel modeling to examine mediators and moderators of the effects of SAFE on HIV outcomes at the individual and community levels and determine the ways in which changes in HIV outcomes feed back into economic outcomes and food security at later interviews. Finally, we are conducting a qualitative end-of-program evaluation consisting of in-depth interviews with 90 SAFE participants.DiscussionIn addition to examining pathways linking structural factors to HIV vulnerability, this research will yield important information for understanding the impact of a multilevel environmental/structural intervention on HIV, with the potential for other sustainable long-term public health benefits.

Contending with Psychological Distress in Contexts with Limited Mental Health Resources: HIV-Positive Kenyan Women's Experiences

This study describes the psychosocial distress experiences of HIV-positive women in Kenya. In-depth narrative interviews were conducted three times over six months between 2009 and 2010 with 54 HIV-positive women living in Kenya to explore how the women perceived psychological distress and the steps they took to find support to cope with their HIV-positive diagnosis. Thematic analysis revealed that the women described psychological distress as: physical and emotional shock, worry, and hopelessness and suicidality. The women reported receiving support to cope through spiritual connections, family and friends, others coping with HIV/AIDS, and health care agencies. This study heightens awareness of the critical value of understanding culturally relevant mental health evaluations in a limited mental health access context.

Ethical Responsibilities and Perceptions of Stakeholders of Genetic Research Involving Racial/Ethnic Minority Participants

Background: Genetic research involving racial/ethnic populations has novel ethical implications for various stakeholders, but ethical acceptability among stakeholders regarding such research is not clear. Methods: As part of a multifaceted National Institute of Mental Health (NIMH)/National Human Genome Research Institute (NHGRI) funded survey, we used repeated-measures factorial multivariate analysis of variance (MANOVA) to compare the perspectives of institutional review board (IRB) chairs (n = 203), investigators (n = 183), and community members (n = 192) on the ethical acceptability of participating in and reporting of psychiatric genetic research focused on racial/ethnic minority groups. Stakeholder views were assessed with two sets of three questions. Results: All stakeholder groups perceived participation in genetic studies focused on racial/ethnic groups as ethically acceptable and endorsed as ethical any decisions by racial/ethnic minorities to decline to participate in such studies if concerned about possible discrimination/stigmatization based on the study findings. Stakeholders disagreed considerably on the ethical acceptability of researchers or journal editors choosing not to publish genetic study results focused on racial/ethnic minority groups based on potential harm of the study findings. Conclusion: Findings show community and professional stakeholders support participation in genetic research focused on specific racial/ethnic groups but recognize that the results of such studies may contribute to discrimination or stigmatization. Stakeholders differed in their perspectives of investigators and editors in balancing ethical issues intrinsic to advancing science versus minimizing harm to potentially vulnerable populations.

How to Engage Communities in Research

Interest in community engagement has grown enormously over the past several decades. Although community-engaged scholarly work does not get the priority it deserves, it is increasingly being embraced by academic and funding institutions. Community engagement, however, remains a challenge for many academics, especially those who work in cross-cultural settings or with marginalized populations. This chapter examines the concept of community engagement and its complexities and describes some frameworks of community engagement and how academics can engage communities in research. It concludes with a brief overview of key ingredients and ethical considerations in the community engagement process.