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      The Giving Voice to Mothers study: inequity and mistreatment during pregnancy and childbirth in the United States

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          Abstract

          Background

          Recently WHO researchers described seven dimensions of mistreatment in maternity care that have adverse impacts on quality and safety. Applying the WHO framework for quality care, service users partnered with NGOs, clinicians, and researchers, to design and conduct the Giving Voice to Mothers (GVtM)–US study.

          Methods

          Our multi-stakeholder team distributed an online cross-sectional survey to capture lived experiences of maternity care in diverse populations. Patient-designed items included indicators of verbal and physical abuse, autonomy, discrimination, failure to meet professional standards of care, poor rapport with providers, and poor conditions in the health system. We quantified the prevalence of mistreatment by race, socio-demographics, mode of birth, place of birth, and context of care, and describe the intersectional relationships between these variables.

          Results

          Of eligible participants ( n = 2700), 2138 completed all sections of the survey. One in six women (17.3%) reported experiencing one or more types of mistreatment such as: loss of autonomy; being shouted at, scolded, or threatened; and being ignored, refused, or receiving no response to requests for help. Context of care (e.g. mode of birth; transfer; difference of opinion) correlated with increased reports of mistreatment. Experiences of mistreatment differed significantly by place of birth: 5.1% of women who gave birth at home versus 28.1% of women who gave birth at the hospital. Factors associated with a lower likelihood of mistreatment included having a vaginal birth, a community birth, a midwife, and being white, multiparous, and older than 30 years.

          Rates of mistreatment for women of colour were consistently higher even when examining interactions between race and other maternal characteristics. For example, 27.2% of women of colour with low SES reported any mistreatment versus 18.7% of white women with low SES. Regardless of maternal race, having a partner who was Black also increased reported mistreatment.

          Conclusion

          This is the first study to use indicators developed by service users to describe mistreatment in childbirth in the US. Our findings suggest that mistreatment is experienced more frequently by women of colour, when birth occurs in hospitals, and among those with social, economic or health challenges. Mistreatment is exacerbated by unexpected obstetric interventions, and by patient-provider disagreements.

          Electronic supplementary material

          The online version of this article (10.1186/s12978-019-0729-2) contains supplementary material, which is available to authorized users.

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          Most cited references48

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          Beyond too little, too late and too much, too soon: a pathway towards evidence-based, respectful maternity care worldwide.

          On the continuum of maternal health care, two extreme situations exist: too little, too late (TLTL) and too much, too soon (TMTS). TLTL describes care with inadequate resources, below evidence-based standards, or care withheld or unavailable until too late to help. TLTL is an underlying problem associated with high maternal mortality and morbidity. TMTS describes the routine over-medicalisation of normal pregnancy and birth. TMTS includes unnecessary use of non-evidence-based interventions, as well as use of interventions that can be life saving when used appropriately, but harmful when applied routinely or overused. As facility births increase, so does the recognition that TMTS causes harm and increases health costs, and often concentrates disrespect and abuse. Although TMTS is typically ascribed to high-income countries and TLTL to low-income and middle-income ones, social and health inequities mean these extremes coexist in many countries. A global approach to quality and equitable maternal health, supporting the implementation of respectful, evidence-based care for all, is urgently needed. We present a systematic review of evidence-based clinical practice guidelines for routine antenatal, intrapartum, and postnatal care, categorising them as recommended, recommended only for clinical indications, and not recommended. We also present prevalence data from middle-income countries for specific clinical practices, which demonstrate TLTL and increasing TMTS. Health-care providers and health systems need to ensure that all women receive high-quality, evidence-based, equitable and respectful care. The right amount of care needs to be offered at the right time, and delivered in a manner that respects, protects, and promotes human rights.
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            Racial/ethnic disparities in obstetric outcomes and care: prevalence and determinants.

            Wide disparities in obstetric outcomes exist between women of different race/ethnicities. The prevalence of preterm birth, fetal growth restriction, fetal demise, maternal mortality, and inadequate receipt of prenatal care all vary by maternal race/ethnicity. These disparities have their roots in maternal health behaviors, genetics, the physical and social environments, and access to and quality of health care. Elimination of the health inequities because of sociocultural differences or access to or quality of health care will require a multidisciplinary approach. We aim to describe these obstetric disparities, with an eye toward potential etiologies, thereby improving our ability to target appropriate solutions. Copyright 2010 Mosby, Inc. All rights reserved.
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              Discrimination against childbearing Romani women in maternity care in Europe: a mixed-methods systematic review

              Background Freedom from discrimination is one of the key principles in a human rights-based approach to maternal and newborn health. Objective To review the published evidence on discrimination against Romani women in maternity care in Europe, and on interventions to address this. Search strategy A systematic search of eight electronic databases was undertaken in 2015 using the terms “Roma” and “maternity care”. A broad search for grey literature included the websites of relevant agencies. Data extraction and synthesis Standardised data extraction tables were utilised, quality was formally assessed and a line of argument synthesis was developed and tested against the data from the grey literature. Results Nine hundred papers were identified; three qualitative studies and seven sources of grey literature met the review criteria. These revealed that many Romani women encounter barriers to accessing maternity care. Even when they are able to access care, they can experience discriminatory mistreatment on the basis of their ethnicity, economic status, place of residence or language. The grey literature revealed some health professionals held underlying negative beliefs about Romani women. There were no published research studies examining the effectiveness of interventions to address discrimination against Romani women and their infants in Europe. The Roma Health Mediation Programme is a promising intervention identified in the grey literature. Conclusions There is evidence of discrimination against Romani women in maternity care in Europe. Interventions to address discrimination against childbearing Romani women and underlying health provider prejudice are urgently needed, alongside analysis of factors predicting the success or failure of such initiatives. Electronic supplementary material The online version of this article (doi:10.1186/s12978-016-0263-4) contains supplementary material, which is available to authorized users.
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                Author and article information

                Contributors
                saraswathi.vedam@ubc.ca
                kathrin.stoll@ubc.ca
                tkhemet@gmail.com
                rubashkin@ucsf.edu
                cheyneym@oregonstate.edu
                nan@everymothercounts.org
                monica.mclemore@ucsf.edu
                mcadena@youngwomenunited.org
                elizabeth.nethery@gmail.com
                elierushton@gmail.com
                laura.schummers@ubc.ca
                declercq@bu.edu
                Journal
                Reprod Health
                Reprod Health
                Reproductive Health
                BioMed Central (London )
                1742-4755
                11 June 2019
                11 June 2019
                2019
                : 16
                : 77
                Affiliations
                [1 ]ISNI 0000 0001 2288 9830, GRID grid.17091.3e, Birth Place Lab, Division of Midwifery, Faculty of Medicine, , University of British Columbia, Vancouver (Canada), ; E416 Shaughnessy (Mailbox 80), 4500 Oak Street, Vancouver, BC V6H 3N1 Canada
                [2 ]University of California Davis School of Medicine, Sacramento, California, USA
                [3 ]ISNI 0000 0004 0415 7072, GRID grid.252865.e, Department of Midwifery, , Bastyr University, ; Seattle, WA USA
                [4 ]ISNI 0000 0001 2297 6811, GRID grid.266102.1, Department of Obstetrics and Gynecology, , University of California San Francisco and the Institute for Global Health Sciences, ; California, USA
                [5 ]ISNI 0000 0001 2112 1969, GRID grid.4391.f, Department of Anthropology, , Oregon State University, ; Corvallis, Oregon, USA
                [6 ]GRID grid.479125.c, Every Mother Counts, ; New York City, USA
                [7 ]ISNI 0000 0001 2297 6811, GRID grid.266102.1, Department of Family Health Care Nursing and ANSIRH Bixby Center for Global Reproductive Health, , University of California, ; San Francisco, USA
                [8 ]Young Women United, Albuquerque, New Mexico, USA
                [9 ]ISNI 0000 0001 2288 9830, GRID grid.17091.3e, School of Population & Public Health, Faculty of Medicine, , University of British Columbia, ; Vancouver, Canada
                [10 ]ISNI 0000 0001 2288 9830, GRID grid.17091.3e, Department of Family Practice, Faculty of Medicine, , University of British Columbia, ; Vancouver, Canada
                [11 ]ISNI 0000 0004 1936 7558, GRID grid.189504.1, School of Public Health, , Boston University, ; Massachusetts, Boston, USA
                Author information
                http://orcid.org/0000-0001-6396-3638
                Article
                729
                10.1186/s12978-019-0729-2
                6558766
                31182118
                9efbb5ef-98f2-4586-8180-44dbe0194780
                © The Author(s). 2019

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver ( http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.

                History
                : 4 January 2019
                : 30 April 2019
                Funding
                Funded by: New Hampshire Charitable Foundation Transforming Birth Fund
                Award ID: 111794
                Award Recipient :
                Categories
                Research
                Custom metadata
                © The Author(s) 2019

                Obstetrics & Gynecology
                respectful maternity care,mistreatment,pregnancy,childbirth,race,disrespect,abuse,participatory research,hospital birth,home birth,health equity,midwifery,quality measure

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