Internet message boards for pregnancy loss: who's on-line and why?

Abstract

Background: Pregnancy loss is common, but its significance is often minimized by family, friends, and the community, leaving bereaved parents with unmet need for support. This study sought to describe demographics, usage patterns, and perceived benefits for women participating in Internet pregnancy loss support groups.

Methods: We requested permission to post an anonymous Internet survey on large and active United States Internet message boards for women with miscarriages and stillbirths. The study purposefully oversampled stillbirth sites and included both closed- and open-ended questions. The University of Michigan Institutional Review Board approved the study. Closed-ended questions were summarized and evaluated with bivariate analysis. We performed a qualitative analysis of open-ended data using an iterative coding process to identify key themes.

Results: Of 62 sites queried, 15 granted permission to post the survey on 18 different message boards. We collected 1,039 surveys, of which 1,006 were complete and eligible for analysis. Women were typically white, well educated, and frequent users. They noted message boards helped them to feel less isolated in their loss and grief and they appreciated unique aspects of Internet communication such as convenience, access, anonymity, and privacy. Pregnancy loss message boards are an important aspect of support for many bereaved mothers. African-American women seem to be substantially underrepresented on-line despite being at higher risk for stillbirth.

Conclusion: Internet message boards serve a unique function in providing support for women with miscarriage and stillbirth. The benefits are often significantly different from those encountered in traditional face-to-face bereavement support.

Figure 1

Time Since Pregnancy Loss Among Message Board Users