Researchers with the Indiana University School of Liberal Arts at IUPUI are bringing attention to grief felt by patients after a reproductive loss by helping to create a tool that can reshape clinical practice and aid patients facing complicated grief.
Approximately 2 million American women experience pregnancy loss each year. After such a loss, patients can experience grief, post-traumatic stress, anxiety, depression, suicidal behaviors and profound threats to identity. In clinical settings, mental health issues after reproductive loss can be missed if health care providers lack the tools to detect the symptoms and measure their intensity.
Researchers Jennifer J. Bute and Maria Brann, professors in the Department of Communication Studies at IUPUI, responded to this need by joining a team of researchers creating the Reproductive Grief Screen tool, which is composed of five targeted questions designed to be used in clinical settings. Their research was supported by the Institute of Reproductive Grief Care, where both Bute and Brann serve on the Health Care Task Force.
Bute and Brann said that physicians often implement questionnaires designed to measure symptoms of other conditions, such as postpartum depression, after a reproductive loss, rather than targeting specific symptoms that patients experience after a miscarriage, stillbirth or medical abortion.
"We grieve about many things, but it's a different type of grief when you're grieving the loss of an unborn child," Brann said.
"We have found that women who experience reproductive loss often have complex grief or grief that lasts for a long time, and there's no real way to screen for that," Bute said. "Things like postpartum depression screening tools just don't fit the context very well. Those questions are more specific to having just given birth and how you're feeling after that experience, so something like that could actually worsen the trauma that you're going through. The tool is designed to fill that gap and offer something that's uniquely designed for this specific kind of grief."
The stigma around reproductive loss often silences those who are experiencing it, according to the researchers. Discussions around sexual health and death can make people uncomfortable. The lack of conversation around reproductive loss affects millions of Americans.
"I always tell students when I'm teaching this topic that everybody knows somebody who's gone through this, whether they realize it or not, and that's how ubiquitous it is," Bute said.
In their research interviews, Bute and Brann found that both individuals and physicians often struggle with navigating those conversations. Their hope is that this tool will give patients and physicians a comfortable way to begin the conversation.
"We have this kind of societal rule that you don't even mention that you're pregnant until you get past the first trimester because of the fear that you'll have to tell someone that you've lost a baby," Brann said. "So we're not supporting women and the excitement for their pregnancy, and we're also saying, 'We don't want to support you when you have this loss either.' It's very difficult."
In their research, they discovered that people often hear unintentionally hurtful comments after reproductive loss. Comments like "at least you weren't that far along," "you could always try again" or "at least you didn't have a baby and then lose it" are examples of well-intentioned but hurtful responses.
"A lot of women don't communicate what they're feeling or what they're experiencing because of that fear of being hurt again," Brann said. "We found that they also feel like they have to manage other people's emotions, saying things like, 'I don't want to tell them because I don't want to make them feel bad.' So they're constantly trying to take care of others around them."
The next phase in the development of the screening tool entails testing it in a larger sample of people and perfecting the language used in the questions. That step will be followed by implementing the tool, as well as training health care providers on how to process patients' responses to the questions and how to refer patients for additional help outside the clinical setting.
Brann and Bute offered advice based on their research for how people can respond to someone dealing with reproductive loss:
- Let them know you are there for them.
- Let them know they have the right to feel the emotions they are experiencing.
- Offer nonverbal support, such as a comforting hug or simply listening.
- Do not trivialize their loss.
If at a loss for words, Brann and Bute also offered some phrases that could be helpful in validating their feelings and experiences without trivializing what they have experienced:
- "I don't even know what to say right now, but I'm so glad you told me."
- "I can understand why you feel this way."
- "This must be really hard for you."
- "I'm here for you."
Brann and Bute said it is also important to understand that there is no time limit on how long people may experience feelings of grief after their loss.
"We've talked with women who've experienced a loss 40 or 45 years ago, and they're still grieving," Brann said. "There's not a timetable for grief. People grieve in their own time and in their own ways, and I think we have to respect that."
