Pregnancy apps and online spaces fail to support individuals grieving a pregnancy loss – here’s what to do about it

Approximately 1 in 4 pregnancies in the United States ends in loss. Pregnancy loss, also referred to as miscarriage, is a common reproductive health complication.

Many experience this loss as a significant life event, with a “before” and an “after.” It can cause depression and post-traumatic stress disorder. Yet society largely stigmatizes and dismisses it by not treating it as a loss that deserves to be grieved.

I research the social implications of technology. For the past several years, I’ve been investigating the intersection of pregnancy loss and social technologies. Search engines, social media, online support groups and pregnancy and fertility tracking apps are some of the technologies people use to manage pregnancies, share experiences or exchange social support.

My recent research shows these technologies often do not account for pregnancy loss and, as a result, can cause re-traumatization and distress.

Harmful designs and algorithms

In a recent study, I conducted in-depth interviews with women in the U.S. who had recently experienced pregnancy loss. I found that pregnancy tracking applications failed miserably in considering pregnancy losses.

A participant told me, “There’s no way to tell your app, ‘I had a miscarriage. Please stop sending me these updates,’ like, ‘This week, your baby’s the size of a banana or whatever.’ There’s no way to stop those.”

Similarly, advertising algorithms assumed all pregnancies lead to the birth of an alive and healthy baby. Another participant told me, “I was getting ads for maternity clothes. I was just like, ‘Oh, please stop.’”

The design of mobile apps tells a similar story. I conducted an analysis of 166 pregnancy-related apps and found 72% do not account for pregnancy loss at all, 18% offer an option to report a loss without providing any support, and the remaining 10% passively link to outside sources.

Another tool people use during pregnancy and loss journeys are online support groups. While groups dedicated to loss can be sources of social support where people may find emotional validation, connect with others and feel seen and less alone, I found they can also foster invalidating and harmful experiences.

One participant reported seeing questions “like ‘Can you eat this certain thing while pregnant?’ You get some people who say, ‘Yes, I ate that all through pregnancy.’ Then you get some people who say, ‘I can’t believe you’re doing that to your body, that’s harmful for you.’”

Overall, the design features and algorithms that underpin content and interactions do real harm by perpetuating a single idea of what constitutes a pregnancy – one that is smooth and leads to a happy ending. By not accounting for pregnancy loss, I contend they contribute to its further stigmatization.

My work shows how technology design reinforces stereotypes about experiences like pregnancy loss – and sustains social inequities like marginalization and stigmatization. This, in turn, makes it hard for those experiencing loss to find the resources and support they need.

A more humane approach

If you are someone who has experienced pregnancy loss, I am sorry for your loss. Please know that you are not alone. I hope this article helps validate and make visible some of your frustrating experiences.

If you know someone who has experienced a pregnancy loss, know that the harms and challenges I described above are only some of the frustrations they may face. Acknowledge their loss. Ask how you may be able to support them. Get them meals, offer to pet sit or babysit for them, listen to them, sit in their sorrow with them. Know that holidays and anniversaries tend to be tough. Do not say “you will get pregnant again.” Finally, remember that lesbian, gay, bisexual, transgender and queer people also experience pregnancy and loss.

If you are a designer, developer or someone who makes decisions about products and advertising algorithms, I hope this research illustrates some of the real harms users may experience as a result of using products to manage intimate personal experiences like pregnancies. Please consider designing products that consider the full range of pregnancy and other human experiences. Remember that considering pregnancy loss as an outcome does not mean finding other ways to profit from your users’ loss and grief.

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Nazanin Andalibi, Assistant Professor of Information, University of Michigan

This article is republished from The Conversation under a Creative Commons license. Read the original article.