"People often need to share stigmatized life events and emotions associated with them. However, many do not, and sometimes they suffer as a result of this inhibition due to the psychological distress associated with keeping a secret."
If we have learned anything on social media in 2017 it's that everything isn't okay. Far from it. But we are finally starting to talk about it - according to researchers at Drexel University who study our relationships with social network sites. Their latest work, an examination of how and why women decide to disclose pregnancy loss on Facebook, sheds light on a shift in our social media behavior that is making it easier for people to come forward and share their painful, personal and often stigmatized stories.
"While many use Facebook to largely talk about happy and light topics and believe that to be the expected norm on this platform, some people make complicated decisions to talk about things that are not all that happy," said Nazanin Andalibi, a doctoral candidate in Drexel's College of Computing & Informatics, and lead author of the recently published study "Announcing Pregnancy Loss on Facebook: A Decision-Making Framework for Stigmatized Disclosures on Identified Social Network Sites." "Our research looks at why and how people decide to use social media to share their traumatic experiences that often have a social stigma attached to them."
The study, which will be published in the Proceedings of the 2018 ACM CHI Conference on Human Factors in Computing Systems, and presented at the conference in April 2018, is the first piece of research to use the lens of pregnancy loss to look at how and why people use social media to share their sensitive and stigmatized stories.
Andalibi and co-author Andrea Forte, PhD, an associate professor in the College of Computing & Informatics, chose to focus on pregnancy loss disclosures because one in five pregnancies in the United States lead to a pregnancy loss, yet most people - approximately 55 percent - still think it's a rare occurrence. A discrepancy in understanding of this magnitude tends to fuel stigmatization and feelings of isolation - by contrast, raising awareness can not only help reduce the stigma, but also aid in the emotional process of recovering from such a loss.
"Pregnancy loss is a stigmatized reproductive health complication, associated with negative wellbeing effects such as depression and PTSD, changes people's sense of identity, impacts their relationships, and it often elicits negative or unsupportive responses when disclosed, Andalibi said. "Understanding how and why women talk about pregnancy loss on social networking sites could help us and technologists to design services that facilitate safe disclosures and supportive interactions to form around them when people experience distress and stigma. The potential for improved well-being through access to social support makes pregnancy loss a productive context for research on designing social computing systems for safe disclosures and support seeking."
By interviewing 27 women, all social media users, who had recently experienced pregnancy loss, the researchers built a framework for understanding why people are now turning to social media to end their silence and share their stories. These findings can also be applied to other phenomena such as the 12 million who recently shared their experiences of sexual assault using the hashtag #MeToo.
One of the main reasons people are coming forward, they suggest, is that social media is now part of the healing process.
"People often need to share stigmatized life events and emotions associated with them. However, many do not, and sometimes they suffer as a result of this inhibition due to the psychological distress associated with keeping a secret," they write.
By sharing their loss themselves, the women maintained control of the narrative around their parenthood journey. Many had already shared news of their pregnancy online, so talking about the pregnancy loss allowed them to avoid difficult unwanted questions, while also coming to grips with the loss themselves. It was also seen as a way of honoring and remembering the baby, as well as eliciting social support.
Another motivation for turning to social media, according to the research, is the benefit of sharing with a large network of people.
Many women found it to be a highly efficient way of sharing a painful story once instead of repeating it over and over again in individual conversations, which was perceived to be incredibly difficult.
"I didn't want to talk to people about it because I didn't want to deal with their feelings about it," one participant told the researchers. "I didn't want to feel like I had to manage their feelings...that's easier on social media because they're not in front of me. I definitely had friends who cried when I told them. I don't want to deal with somebody else's tears about it. You don't have to do that on Facebook."
This broad-spectrum sharing, which is a definitive characteristic of social media, also makes it easier for others to express support or share a similar story in hopes of building strength in numbers, educating others and reducing the social stigma.
These posts often inspire others in a network to come forward with their own stories because they see people talking about it and feel as though the stigma has diminished. The researchers call this behavior "Network-Level Reciprocal Disclosures." They suggest that by seeing others post, people knew and felt pregnancy loss was not unique to them. And by observing posts that did not receive negative responses, participants felt that sharing about their loss may be more appropriate than they originally thought - and even if that was not the case, they would at least not be the only people taking that chance.
This behavior, which is becoming more prevalent on social networks today, is at the heart of the sexual assault awareness movement that organically coalesced on social media via the hashtag #MeToo.
"Our theory of Network-Level Reciprocal Disclosure suggests that it is likely that by seeing others say #MeToo, those who did end up saying #MeToo as well, were inspired and felt safer to do so themselves, and wanted to be a source of support for others," Andalibi said. "It is likely that others' disclosures made them feel like they were not alone, and that there are others they know in their life who have also experienced abuse. Seeing reactions to others' posts could have made it easier to gauge their potential audience's reaction as well. Some may have used #MeToo to take control of their story, share as part of healing, receive support from others, and contribute to constructing a societal conversation about abuse."
Even with support from others and confidence gleaned from seeing the conversation grow in a positive direction, many people still want to ease into sharing their story or need a timely nudge.
According to the study, women who shared their pregnancy loss publicly on social media often did so after first revealing it on an anonymous forum, like Reddit - as a way of testing out the message and the responses to it while being shielded from the emotions of interacting with a familiar audience.
"Processing their experiences on more anonymous sites helped people decide exactly what and how to share, and reduced anxiety about sharing," they wrote. "Anonymous disclosures paved the way for disclosures on Facebook. This indicates the distinct and complementary roles of anonymous online spaces, such as Reddit, and identified spaces, such as Facebook."
Many of the participants also noted that October's Pregnancy and Infant Loss Awareness Month push gave them the exact opportunity they needed to take to social media and talk about their experience.
"I think that, similar to how the pregnancy-related subreddits are a space in which it's appropriate to share information about pregnancy, that awareness month creates a context in which people feel like it's not totally arbitrary. They are participating in something," one participant told the researchers.
Both findings suggest that creating spaces and times specifically for making these disclosures can help people to come forward. It's important for social network sites to understand this behavior, according to the researchers, because it could help them build a more inclusive space if they embrace their role as forums where people can find support and support one another. The researchers suggest that social network sites could facilitate this process and help to reduce the stigma associated with difficult human experiences by implementing these changes:
"Taken together, awareness campaigns, the efficiency of one-to-many disclosures, and opportunities for anonymous lower-risk disclosures elsewhere contribute to women's decisions to disclose pregnancy loss experiences on identified social network systems, which, through the mechanism of network-level reciprocation, creates an increasingly disclosure-friendly context for those who come after," the authors wrote.
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