The social network of infertility: Study examines couples' privacy preferences

August 9, 2011

(Medical Xpress) -- Couples who are having trouble getting pregnant adjust how much information they share with friends and family, depending on whether it's the husband or the wife who feels stigmatized about their reproductive difficulties, a new study shows.

Researchers at the University of Iowa and Penn State University found that when the woman is concerned about people's reactions to their , both the husband and the wife disclose more to their social network. If the man is feeling stigmatized, both partners share less.

Study author Keli Ryan Steuber, assistant professor of in the UI College of Liberal Arts and Sciences, is eager to learn more about the "why" behind this finding in future research. Based on interviews with 50 , she speculates that it has to do with protecting the husband's public face, and responding to societal pressure to pursue .

"It aligns with the idea that couples do more work to maintain the husband's public persona," said Steuber, who coauthored two recent papers on the topic with Penn State's Denise Haunani Soloman.

"For women, it may be a response to our pronatalist culture. There's an expectation that women want children, and sometimes those who are voluntarily childless are labeled as selfish or too career-driven. We wonder if that overrides the stigma of infertility, to the point that women and their husbands feel compelled to clarify: 'We're not choosing to not have children. We can't have children.'"

Steuber surveyed 50 married couples on the East Coast who were coping with infertility for eight months to five years. Nearly 80 percent of participants had no previous children.

They answered questions about medical and financial aspects of their infertility, their relationship, and their feelings about the experience. The couples identified five support people in their lives -- three who provided support to both of them, and two who were closer to one member of the couple. Researchers analyzed how much was shared with whom, and the reasons behind the decisions.

About 15 percent, or 4.3 million of the 28 million in the United States, have difficulty conceiving. Communication about it is tricky, Steuber said, because having children is sometimes perceived as a community event. Grandparents and other relatives may insert themselves into the discussion, and people drop hints or pry for information about when couples plan to start a family.

It can be an especially tough topic for couples to talk about because of the uncertain outcome.

"I've had women say things like, 'My whole life, if I worked hard enough at something, I've eventually gotten it … . This is the first time where, no matter how hard we work at this, we don't know what the result is going to be,'" Steuber said.

To further complicate matters, each member of the couple might have different or competing preferences for how much news is shared, and who should be in the loop.

"With a breast cancer diagnosis, for example, we can assume the woman feels like she has more ownership over that news, and that the husband would default to her preferences," Steuber said. "With infertility, both partners may feel equal ownership over the information. And, because of the ups and downs of infertility, it's a constant renegotiation of preferences. They might become pregnant and then go through a miscarriage, having to make decisions about who they tell again and again."

The researchers discovered that couples were generally OK with spouses having different privacy restrictions for different support-network members. The key to keeping peace, Steuber said, is explicit conversations about privacy rules and the reasons behind them -- like whether preferences are related to personal insecurities, general discomfort with disclosing the information, or trust issues with specific individuals.

"The privacy rules you create as a couple might be different for each person, and that's ok. Different comfort levels with sharing information didn't coincide with as much relationship turbulence as we expected," Steuber said. "But boundaries are easy to violate if they're not crystal clear. It's important to have detailed discussions, and to reevaluate the rules in light of a new development in the process.

"It could be, 'It's fine if you tell your mom, but please ask her not to tell your sister.' Or, 'I understand that you need to talk to your mom about it, but respect that I don't want to talk to her about it.'"

The study found that wives share more about infertility than husbands, and that women typically turn to other women for support. Women often struggle with how to be a good friend to another woman who's dealing with infertility -- especially if one has children and the other desperately wants to be a mother. The best approach, Steuber said, is to ask how you can best support that friend.

"Let your friend know that you're there for her, to talk about it as much or as little as she wants. Find out whether she wants you to ask how her IVF treatments went, or if you should wait for her to bring it up. See if she is OK with hearing about your children -- maybe she knows they're an important part of your life and wants to hear about them, but maybe it's too hard and she'd rather focus on other topics," Steuber said. "By asking, it shows that you care enough to be sensitive to her feelings."

Consistent with prior research, the study indicated that husbands lean on their wives as a main source of emotional support. Researchers also learned that if either partner experiences doubts about the marital relationship (level of commitment, or concerns about the relationship's future), the husband worries that he may have communicated to family and friends about their infertility in a way that was uncomfortable to the wife.

Couples were more likely to reveal details of their experience to people they would feel comfortable confronting about a breach in confidentiality. That is, they want to feel close enough to that friend or relative to say, "We wish you hadn't told your neighbor details about our pregnancy complications" so they can manage their privacy preferences without destroying the friendship.

The next step in Steuber's research will be to examine how couples use online support networks, such as Facebook, blogs and message boards, to seek support for infertility.

"We know that these communities can be helpful in terms of social support," Steuber said. "People will post something and get a reassuring response by other people going through a similar experience. Or, they might not get a response at all, and feel turned off by that. We're curious about the interpersonal benefits and disadvantages of communicating on these online forums."

Steuber also plans to explore how online interactions with strangers compare and interfere with the support they're getting from face-to-face relationships with their spouse, family or friends.

The findings were published recently in the Journal of Applied Communication Research, and the Journal of Social and Personal Relationships. The research was part of Steuber's dissertation, which Solomon advised. Steuber received funding from the Hellene Runtagh and the Don and Carol Miller Graduate Funds through the College of Liberal Arts at Penn State.

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