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Message boards provide years of help for women who miscarry

In a survey of more than 1,000 women on 18 message boards, researchers find that half had experienced their loss more than a year earlier, and some as many as 20 years earlier.

With about one in six pregnancies ending in miscarriage or stillbirth, plenty of women have to endure the loss of a developing life. For those who turn to online message boards, a new survey finds, there can be great solace in the company of others who have experienced the same loss.

Almost one in six pregnancies ends in miscarriage or stillbirth. David Salafia/Flickr

The survey of more than 1,000 anonymous women on 18 messages boards was launched by researchers at the University of Michigan and Georgia Health Sciences University to better understand how women use these forums and why.

The most common reason women gave for choosing to participate in message boards was to feel that they weren't alone in their experience. "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," one woman said about her reason for visiting a message board.

Researchers were surprised to learn that only half the women surveyed had lost their pregnancy within the past year; it turns out that many are turning to message boards 5, 10, and even 20 years later.

They also report that another unexpected finding was that just 2 percent of the respondents were African American, though black women have twice the risk of stillbirth as white women and 60 percent of African Americans reportedly have Internet access.

"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," says lead author Katherine J. Gold, an assistant professor of family medicine at the U-M Medical School. "This suggests an important gap in support for African American parents that should be explored further."

Gold and colleagues are now pursuing research with bereaved parents who turn to in-person support groups, and they plan to compare the results with this survey, which is published in the journal Women's Health Issues.