Guilt, Shame and Lack of Emotional Support Are Common after Miscarriage
Miscarriages end one in every four pregnancies and are by far the most common of all pregnancy complications. Yet 55 percent of respondents to the Einstein/Montefiore survey believed that miscarriages are ‘uncommon’ (defined in the survey as less than six percent of all pregnancies).
A survey of more than 1,000 U.S. adults has found that misperceptions about miscarriage and its causes are widespread. Results of the survey, conducted by researchers at Albert Einstein College of Medicine of Yeshiva University and Montefiore Health System, show that feelings of guilt and shame are common after a miscarriage and that most people erroneously believe that miscarriages are rare. The findings were published online today in the journalObstetrics & Gynecology.
Nearly one million miscarriages occur in the U.S. each year. Miscarriages end one in every four pregnancies and are by far the most common of all pregnancy complications. Yet 55 percent of respondents to the Einstein/Montefiore survey believed that miscarriages are “uncommon” (defined in the survey as less than six percent of all pregnancies).
“Miscarriage is a traditionally taboo subject that is rarely discussed publicly,” said Zev Williams, M.D., Ph.D., director of the Program for Early and Recurrent Pregnancy Loss (PEARL) at Einstein and Montefiore. “We initiated this survey to assess what the general public knew about miscarriage and its causes and how miscarriage affects them emotionally.” Dr. Williams is also assistant professor of obstetrics & gynecology and women’s health, and of genetics, at Einstein.
Dr. Williams and colleagues devised a 33-item survey to assess perceptions of miscarriage; 10 items were specifically directed to men or women reporting a history of miscarriage. The survey was posted online using Amazon.com’s MTurk, a crowdsourcing web service. The anonymous participants—adults 18 or over from 49 states—received 25 cents as compensation. Of the 1,084 valid survey responses collected over a 3-day period in 2013, 45 percent were from men and 55 percent from women. Fifteen percent reported that they or their partner had suffered a miscarriage. Participants generally mirrored 2010 national census statistics with respect to gender, age, religion, geographic location and household income.
Among other significant survey findings:
- Twenty-two percent of participants incorrectly believed that lifestyle choices during pregnancy (such as smoking or using drugs or alcohol) are the single most common cause of miscarriage, more common than genetic or medical causes. Actually, 60 percent of miscarriages are caused by a genetic problem – abnormal chromosomes. Other established causes include structural abnormalities of the uterus, endocrine disorders such as hypothyroidism, and autoimmune disorders such as anti-thyroid antibodies. Less-educated respondents – defined as not having completed college – were twice as likely as higher-educated respondents to believe lifestyle choices are the most common cause; men were 2.6 times likelier than women to have this misperception.
- Twenty-eight percent of those suffering a miscarriage reported that celebrities’ disclosure of miscarriage had eased their feelings of isolation, and 46 percent said they felt less alone when friends disclosed their own miscarriages.
- Participants incorrectly believed that a stressful event (76 percent) or longstanding stress (74 percent) can cause miscarriage. Other incorrectly perceived causes of miscarriage included lifting heavy objects (64 percent), having had a sexually transmitted disease (41 percent), past use of an intrauterine device (IUD) (28 percent), past use of oral contraceptives (22 percent) and getting into an argument (21 percent).
- Of men and women reporting that they or their partner had experienced a miscarriage, 47 percent reported feeling guilty, 41 percent felt they had done something wrong, 41 percent reported feeling alone and 28 percent reported feeling ashamed. Only 45 percent felt they had received adequate emotional support from the medical community.
- Thirty-six percent of participants—including those who had never experienced pregnancy loss—reported that suffering a miscarriage would be extremely upsetting, equivalent to losing a child.
- An overwhelming majority (88 percent) of participants would want to know the cause of a miscarriage if something could be done to prevent a future miscarriage, and 78 percent would want to know the cause even if nothing could be done to prevent a miscarriage in the future.
“The results of our survey indicate widespread misconceptions about the prevalence and causes of miscarriage. Because miscarriage is very common but rarely discussed, many women and couples feel very isolated and alone after suffering a miscarriage. We need to better educate people about miscarriage, which could help reduce the shame and stigma associated with it,” said Dr. Williams. “We want people who experience miscarriage to know that they’re not alone—that miscarriages are all too common and that tests are available to help them learn what caused their miscarriage and hopefully to help them in subsequent pregnancies.”
The article is titled “Public Perceptions of Miscarriage: A National Survey.” Other PEARL-affiliated authors were former Einstein medical students, lead author Jonah Bardos, M.D., M.B.E, now a resident at Mount Sinai Medical Center, New York, NY; and Jenna Friedenthal, M.D., now at New York University-Langone Medical Center, New York, NY. Additional authors were Daniel Hercz, M.Sc., at University of Sydney Medical School, Sydney, Australia; Stacy Missmer, Sc.D., at Harvard School of Public Health, Boston, MA.
The research was supported by the department of obstetrics & gynecology and women’s health at Einstein and Montefiore and the National Institutes of Health (HD068546). The authors report no conflicts of interest.
About Montefiore Health System
Montefiore is a premier academic health system and the University Hospital for Albert Einstein College of Medicine. Combining nationally-recognized clinical excellence with a population health perspective that focuses on the comprehensive needs of the communities it serves, Montefiore delivers coordinated, compassionate, science-driven care where, when and how patients need it most. Montefiore consists of eight hospitals and an extended care facility with a total of 2,747 beds, a School of Nursing, and state-of-the-art primary and specialty care provided through a network of more than 150 locations across the region, including the largest school health program in the nation and a home health program. The Children’s Hospital at Montefiore is consistently named in U.S. News’ “America’s Best Children’s Hospitals.” Montefiore’s partnership with Einstein advances clinical and translational research to accelerate the pace at which new discoveries become the treatments and therapies that benefit patients. The health system derives its inspiration for excellence from its patients and community, and continues to be on the frontlines of developing innovative approaches to care. For more information please visit www.montefiore.org.
About Albert Einstein College of Medicine
Albert Einstein College of Medicine of Yeshiva University is one of the nation’s premier centers for research, medical education and clinical investigation. During the 2014-2015 academic year, Einstein is home to 742 M.D. students, 212 Ph.D. students, 102 students in the combined M.D./Ph.D. program, and 292 postdoctoral research fellows. The College of Medicine has more than 2,000 full-time faculty members located on the main campus and at its clinical affiliates. In 2014, Einstein received $158 million in awards from the National Institutes of Health (NIH). This includes the funding of major research centers at Einstein in aging, intellectual development disorders, diabetes, cancer, clinical and translational research, liver disease, and AIDS. Other areas where the College of Medicine is concentrating its efforts include developmental brain research, neuroscience, cardiac disease, and initiatives to reduce and eliminate ethnic and racial health disparities. Its partnership with Montefiore Medical Center, the University Hospital and academic medical center for Einstein, advances clinical and translational research to accelerate the pace at which new discoveries become the treatments and therapies that benefit patients. Through its extensive affiliation network involving Montefiore, Jacobi Medical Center—Einstein’s founding hospital, and three other hospital systems in the Bronx, Brooklyn and on Long Island, Einstein runs one of the largest residency and fellowship training programs in the medical and dental professions in the United States. For more information, please visit www.einstein.yu.edu.