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      Silent loss and the clinical encounter: Parents’ and physicians’ experiences of stillbirth–a qualitative analysis

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          Abstract

          Background

          In the United States, an estimated 70 stillbirths occur each day, on average 25,000 each year. Research into the prevalence and causes of stillbirth is ongoing, but meanwhile, many parents suffer this devastating loss, largely in silence, due to persistent stigma and taboo; and many health providers report feeling ill equipped to support grieving parents. Interventions to address bereavement after neonatal death are increasingly common in U.S. hospitals, and there is growing data on the nature of parent bereavement after a stillbirth. However, further research is needed to evaluate supportive interventions and to investigate the parent-clinician encounter during hospitalization following a stillbirth. Qualitative inquiry offers opportunities to better understand the lived experience of parents against the backdrop of clinicians’ beliefs, intentions, and well-meaning efforts to support grieving parents.

          Methods

          We present a secondary qualitative analysis of transcript data from 3 semi-structured focus groups conducted with parents who had experienced a stillbirth and delivered in a hospital, and 2 focus groups with obstetrician-gynecologists. Participants were drawn from the greater Seattle region in Washington State. We examine parents’ and physicians’ experiences and beliefs surrounding stillbirth during the clinical encounter using iterative discourse analysis.

          Results

          Women reported that the cheery, bustling environment of the labor and delivery setting was a painful place for parents who had had a stillbirth, and that the well-meaning attempts of physicians to offer comfort often had the opposite effect. Parents also reported that their grief is deeply felt but not socially recognized. While physicians recognized patients’ grief, they did not grasp its depth or duration. Physicians viewed stillbirth as an unexpected clinical tragedy, though several considered stillbirth less traumatic than the death of a neonate. In the months and years following a stillbirth, these parents continue to memorialize their children as part of their family.

          Conclusions

          Hospitals need to examine the physical environment for deliveries and, wherever possible, offer designated private areas with staff trained in stillbirth care. Training programs in obstetrics need to better address the bereavement needs of parents following a stillbirth, and research is needed to evaluate effective bereavement interventions, accounting for cultural variation. Critical improvements are also needed for mental health support beyond hospitalization. Finally, medical professionals and parents can play an important role in reversing the stigma that surrounds stillbirth.

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          Choose your method: a comparison of phenomenology, discourse analysis, and grounded theory.

          The purpose of this article is to compare three qualitative approaches that can be used in health research: phenomenology, discourse analysis, and grounded theory. The authors include a model that summarizes similarities and differences among the approaches, with attention to their historical development, goals, methods, audience, and products. They then illustrate how these approaches differ by applying them to the same data set. The goal in phenomenology is to study how people make meaning of their lived experience; discourse analysis examines how language is used to accomplish personal, social, and political projects; and grounded theory develops explanatory theories of basic social processes studied in context. The authors argue that by familiarizing themselves with the origins and details of these approaches, researchers can make better matches between their research question(s) and the goals and products of the study.
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            Qualitative analysis for social scientists

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              Global report on preterm birth and stillbirth (1 of 7): definitions, description of the burden and opportunities to improve data

              Introduction This is the first of seven articles from a preterm birth and stillbirth report. Presented here is an overview of the burden, an assessment of the quality of current estimates, review of trends, and recommendations to improve data. Preterm birth Few countries have reliable national preterm birth prevalence data. Globally, an estimated 13 million babies are born before 37 completed weeks of gestation annually. Rates are generally highest in low- and middle-income countries, and increasing in some middle- and high-income countries, particularly the Americas. Preterm birth is the leading direct cause of neonatal death (27%); more than one million preterm newborns die annually. Preterm birth is also the dominant risk factor for neonatal mortality, particularly for deaths due to infections. Long-term impairment is an increasing issue. Stillbirth Stillbirths are currently not included in Millennium Development Goal tracking and remain invisible in global policies. For international comparisons, stillbirths include late fetal deaths weighing more than 1000g or occurring after 28 weeks gestation. Only about 2% of all stillbirths are counted through vital registration and global estimates are based on household surveys or modelling. Two global estimation exercises reached a similar estimate of around three million annually; 99% occur in low- and middle-income countries. One million stillbirths occur during birth. Global stillbirth cause-of-death estimates are impeded by multiple, complex classification systems. Recommendations to improve data (1) increase the capture and quality of pregnancy outcome data through household surveys, the main data source for countries with 75% of the global burden; (2) increase compliance with standard definitions of gestational age and stillbirth in routine data collection systems; (3) strengthen existing data collection mechanisms—especially vital registration and facility data—by instituting a standard death certificate for stillbirth and neonatal death linked to revised International Classification of Diseases coding; (4) validate a simple, standardized classification system for stillbirth cause-of-death; and (5) improve systems and tools to capture acute morbidity and long-term impairment outcomes following preterm birth. Conclusion Lack of adequate data hampers visibility, effective policies, and research. Immediate opportunities exist to improve data tracking and reduce the burden of preterm birth and stillbirth.
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                Author and article information

                Journal
                BMC Pregnancy Childbirth
                BMC Pregnancy Childbirth
                BMC Pregnancy and Childbirth
                BioMed Central
                1471-2393
                2012
                27 November 2012
                : 12
                : 137
                Affiliations
                [1 ]Department of Pediatrics, University of Washington School of Medicine, Seattle, USA
                [2 ]Global Alliance to Prevent Prematurity and Stillbirth, Seattle Children’s Hospital, Seattle, USA
                [3 ]Treuman Katz Center for Pediatric Bioethics, Seattle Children’s Research Institute, 1900 9th Avenue – C9 S6, Seattle, WA, 98101, USA
                [4 ]Department of Bioethics and Humanities, University of Washington School of Medicine, 1959 NE Pacific, Box 357120, Seattle, WA, 98195-7120, USA
                Article
                1471-2393-12-137
                10.1186/1471-2393-12-137
                3533522
                23181615
                c3060cf9-ed39-4a12-8716-12d2f2bfcd47
                Copyright ©2012 Kelley and Trinidad; licensee BioMed Central Ltd.

                This is an Open Access article distributed under the terms of the Creative Commons Attribution License ( http://creativecommons.org/licenses/by/2.0), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.

                History
                : 16 August 2012
                : 21 November 2012
                Categories
                Research Article

                Obstetrics & Gynecology
                perinatal death,parental support,perinatal bereavement,stillbirth
                Obstetrics & Gynecology
                perinatal death, parental support, perinatal bereavement, stillbirth

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