One in every eight couples nationwide struggles to conceive or maintain a pregnancy.
At least 4,000 people are seeking infertility treatment in Charlotte, which boasts a local chapter of the national infertility support group RESOLVE, embryo banks, follicle preservation and alternative health care options.
As Charlotte emerges as a hub of knowledge and resources on the topic, two UNC Charlotte researchers are focused on improving how caregivers and patients communicate around this medical condition.
“Our interest is in helping practices to make sure patients feel seen, heard and understood while maintaining a healthy work-life balance for doctors and nurses,” says Bethany Johnson, research faculty associate in the Department of Communication Studies and a research affiliate for the University’s Women + Girls Research Alliance.
Johnson and Margaret Quinlan, associate professor of communication studies and a core faculty member of the Interdisciplinary Health Psychology Ph.D. program at UNC Charlotte, are exploring the various issues facing individuals across the gender spectrum diagnosed with infertility, as well as new treatments.
Although infertility is generally understood from a biological perspective, research shows that individuals with infertility face undesired emotional and social outcomes from treatment, such as stress, including depression, anger and frustration. Individuals also deal with uncertainty, marital instability, anxiety-related sexual dysfunction, financial hardship and fear of social censure or a lack of social and emotional support.
In addition to issues that individuals face, couples can experience tension in their relationships that could compound other emotional and social outcomes, such as sexual dysfunction, low self-esteem and fear of isolation.
“Families, friends and members of the medical community don’t know necessarily what to say or how to support someone going through infertility treatment,” Quinlan says. “Some things, although well intended, can be hurtful. We hope to inform people of supportive and unsupportive messages.”
In their study, Johnson and Quinlan delve into the issues that accompany infertility and explain them, in part, as a result of the taboo associated with the condition. Their research finds a need for conversation. The general sense of shame associated with infertility stems from pronatalist discourse in society, which is a practice that encourages women to become mothers as their “biological destiny,” the researchers say. This in turn causes a stigma, ending a conversation before it begins.
Johnson and Quinlan have turned to historical medical records, personal accounts and media coverage to examine attitudes about infertility among individuals and within the medical community and the public at large. This historical perspective allowed them to address areas where progress has stalled.
“Our interviewees were looking for people to listen, to not give advice or have solutions but to be there,” Quinlan says.
As qualitative researchers, Johnson and Quinlan examine communication issues and create resources for patients and practitioners to make sense of infertility in formal and informal contexts. Their research revealed a discrepancy in desired patient support and the support patients received during treatment.
Communication surrounding infertility can be difficult given that most patient care happens outside of the office.
“A lot of the infertility treatments are done at home instead of a traditional office setting,” Quinlan says. “Not having someone to contact or ask questions is difficult for patients. It’s a different kind of regimen that doesn’t fit into the hours of 9 to 5.”
The study references interviews from 26 women, most of whom related their experience to that of “cattle on a conveyor belt” being pushed through the infertility process.
Research indicates that the disconnect caregivers display when communicating with patients can be improved in some cases by simply rephrasing the message or using the patient’s name during communication. Johnson and Quinlan also suggest making resources readily available for patients. Examples are a contact for emergency texts or a list of previously approved instructional YouTube videos for at home treatments.
“Infertility treatment is expensive, and insurance doesn’t always cover it,” Johnson says. “It can cost anywhere from $800 to $30,000 for each cycle. In North Carolina, there is no mandate of coverage for infertility care. If you’re paying out of pocket, you may have higher expectations from your health care.”
The work conducted by the professors extends the current research in communication studies and provide preliminary data needed to understand the communication processes between patients and reproductive, endocrinology and infertility (REI) medical practitioners. The ultimate goal is to provide guidance to health care practitioners and patients with infertility as they interact in REI offices and treatment settings.
Scholars who have previously studied infertility have focused more on the emotional and social consequences of treatment. Johnson and Quinlan addressed the challenges arising from communication between patients and practitioners at REI practices during the treatment.
Their study serves as the first entry into the patient-practitioner discourse, starting with the examination of females’ stories, shedding light on issues of female patient agency during infertility treatment, they say.
Words: Leanna Pough | Image: Courtesy of Quinlan and Johnson