After pregnancy loss, Internet forums help women understand they are not alone

October 19, 2011

Nearly one in six pregnancies end in miscarriage or stillbirth, but parents' losses are frequently minimized or not acknowledged by friends, family or the community.

"Women who have not gone through a stillbirth don't want to hear about my birth, or what my daughter looked like, or anything about my experience," said one woman, responding in a University of Michigan Health System-led study that explored how Internet communities and message boards increasingly provide a place for women to share feelings about these life-altering experiences.

The of more than 1,000 women on 18 message boards opens a new window into who is using the forums and why. The findings will be published in Women's .

The researchers were surprised to find that only half of the women surveyed were in their first year of loss after a pregnancy. Many were still coping with the emotional impacts five, 10 and even 20 years later.

"To my family and most friends, the twins have been gone for nearly a year and are entirely a subject for the past," another woman wrote.

A second unexpected finding was that only 2 percent of survey respondents were African American, despite nearly 60 percent of having internet access and despite having twice the risk of as .

"This is the largest study to look at who uses Internet message boards after a and it demonstrates a significant between the women who experience loss and those who responded to the survey," says lead study author Katherine J. Gold, M.D., M.S.W., M.S., assistant professor of at the U-M Medical School. "This suggests an important gap in support for African American parents that should be explored further."

By far, the most common reason women gave for participating in the message boards was that it helped them to feel that their experience wasn't unique.

One woman explained that the most important aspect of the forums was knowing "that I am not the only one this has happened to and that I am not alone in this horrible nightmare."

Another common theme was that the online environments provided a safe and validating space for the women to express themselves. Others appreciated the ease and convenience of the Internet and their ability to spend more time composing their thoughts than they would be able to in a face-to-face conversation.

Most participants agreed that boards should have a moderator or facilitator, and that health care professionals should participate. Of the 908 women who answered the question, 82 percent said they had learned new medical information from one of the forums.

"The fact that so many women learned new medical information from the message boards shows what an important resource they can be in this regard," says study senior author Christie Palladino, M.D., M.Sc., an obstetrician/gynecologist with Georgia Health Sciences University's Education Discovery Institute.

Gold and her colleagues are currently pursuing similar research with bereaved parents who attend in-person support groups and plan to compare and contrast the results.

Explore further: Infant mortality linked to subsequent risk of stillbirth finds new US study

More information: "Internet Message Boards for Pregnancy Loss: Who's On-Line and Why?," Women's Health Issues, doi:10.1016/j.whi.2011.07.006

Related Stories

Infant mortality linked to subsequent risk of stillbirth finds new US study

September 21, 2011
Women whose first pregnancy ended in infant death are significantly more likely to have a subsequent stillbirth finds new research published today (21 September) in BJOG: An International Journal of Obstetrics and Gynaecology.

Recommended for you

Brain disease seen in most football players in large report

July 25, 2017
Research on 202 former football players found evidence of a brain disease linked to repeated head blows in nearly all of them, from athletes in the National Football League, college and even high school.

Safety of medical devices not often evaluated by sex, age, or race

July 25, 2017
Researchers at Yale and the University of California-San Francisco have found that few medical devices are analyzed to consider the influence of their users' sex, age, or race on safety and effectiveness.

Why you should consider more than looks when choosing a fitness tracker

July 25, 2017
A UNSW study of five popular physical activity monitors, including Fitbit and Jawbone models, has found their accuracy differs with the speed of activity, and where they are worn.

Dog walking could be key to ensuring activity in later life

July 24, 2017
A new study has shown that regularly walking a dog boosts levels of physical activity in older people, especially during the winter.

Alcohol to claim 63,000 lives over next five years, experts warn

July 24, 2017
Alcohol consumption will cause 63,000 deaths in England over the next five years – the equivalent of 35 deaths a day – according to a new report from the University of Sheffield Alcohol Research Group.

Alcohol boosts recall of earlier learning

July 24, 2017
Drinking alcohol improves memory for information learned before the drinking episode began, new research suggests.

0 comments

Please sign in to add a comment. Registration is free, and takes less than a minute. Read more

Click here to reset your password.
Sign in to get notified via email when new comments are made.