FRIDAY, Nov. 4 (HealthDay News) — Online forums help women who have had a miscarriage or stillbirth cope with their feelings of loss and isolation, according to a new study.
Researchers from the University of Michigan Health System found the women are often driven to the Internet because their feelings are ignored or discounted by their friends or family. They noted that half of the women who participate in these online communities had been trying to cope with their loss for more than a year — some for two decades.
“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,” wrote one participant in the anonymous study of more than 1,000 women on 18 message boards, according to a university news release.
“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 revealed.
Most women in the study said participating in the online message board helped them feel less isolated. One said most important to her was knowing “that I am not the only one this has happened to and that I am not alone in this horrible nightmare.”
The study, published online in Women’s Health Issues, also revealed the women saw the forums as a safe and supportive place to express themselves. They also found the message boards to be easily accessible and convenient. Many preferred being able to take their time typing out their thoughts on a keyboard rather than revealing them in face-to-face discussions.
Most women also felt moderators should be present on the boards, and health care professionals should also participate. Eighty-two percent of those who answered a study question on whether they had learned new medical information from one of the forums said they did.
“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,” study senior author Dr. Christie Palladino, an obstetrician/gynecologist with the Education Discovery Institute at Georgia Health Sciences University, said in the news release.
Despite the fact that black women are twice as likely to have a stillbirth and 60 percent of black women have Internet access, according to the release, just 2 percent of the study participants were black.
“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 study lead author Dr. Katherine Gold, assistant professor of family medicine at the University of Michigan Medical School, in the release. “This suggests an important gap in support for African-American parents that should be explored further,” she said.
More information
The March of Dimes provides more information on coping with pregnancy loss.