Researchers have found that Internet forums help women feel less isolated in their loss and grief after having miscarriages or stillbirths and gives them a chance to share their true feelings without being judged.

“We found that Internet forums helped women feel less isolated in their loss and grief. They also appreciated the unique aspects of Internet communication, including the convenience of it being available 24/7, the ease of access, and their ability to share their feelings anonymously,” said Dr. Katherine J. Gold, M.D., M.S.W., M.S., an assistant professor of family medicine at the University of Michigan Medical School.

Nearly one in six pregnancies end in miscarriage or stillbirth. Patient’s losses are frequently not acknowledged by friends, family, and 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.

These message boards act as a group discussion in helping one to overcome their emotional impacts by sharing their experience with others who can relate.

"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.

The survey of more than 1,000 women on 18 different message boards opened up a new window for researchers to find out who is using the forums and why.

Researchers were surprised to find that only half of the women surveyed were in their first year of loss after a pregnancy, whereas many were still coping with the emotional impacts 5, 10, and 20 years later.

Another surprising finding for researchers was that only 2 percent of the women surveyed were African American, despite black women having twice the risk of stillbirths as white women.

“This is the largest study to look at who uses Internet message boards after a pregnancy loss and it demonstrates a significant disparity between the women who experience loss and those who responded to the survey," said Dr. Gold.

Most women who participated in the message boards stated that it helped them to feel that their experience wasn’t unique.

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

Gold said the boards provided a comfortable place for women.

“The women who responded to our survey overwhelmingly said that the online message boards helped them feel that they were not alone in their experiences. They said online forums provide a safe and validating space where they can share their true feelings without fear of being judged,” said Gold.

Out of the 908 women who answered the questions, 82 percent said that they learned new medical information from one of the forums.

Most of the participants agreed that boards should have a moderator and that health care professionals should participate in the forum as well.

“Some boards may welcome a moderator while others may not want to include a medical professional. But since 82 percent of people who responded to this question said that they had learned new medical information from a message board, it is important that the information they get is accurate,” said Gold.

Where can women who experience miscarriages find these boards?

There are many Internet forums on the topic of pregnancy loss.

“We contacted 62 sites and ended up posting our survey on 18 message boards. The National Pregnancy and Infant Loss Support organization manages several message boards for bereaved parents ( Women looking for a forum that will be a good fit for them might also start with a Google search for “pregnancy loss support,” said Gold.

Gold and her colleagues are currently pursuing their research to compare women’s experience through online support to in-person support groups.

“We are currently conducting additional research that will compare women’s experiences with online support resources to in-person support groups.”