A University of Nebraska-Lincoln social demographer is leading an interdisciplinary team of researchers who are studying this and related questions. Lynn White, professor of sociology, and her team will use a $2,559,414 grant from the National Institutes of Health for a long-term study titled "Pathways to treatments for infertility and the outcomes of infertility."
The grant, issued by NIH's National Institute of Child Health and Human Development-Social and Behavioral Branch, funds a five-year study.
White said the study is important because there is little data on infertile couples who do not seek treatment or on the mental, social and behavioral outcomes of fertility treatments.
"Here's a case of where medical science is ahead of social science," she said.
"There are lots of clinical anecdotes," she said. "But many of the people in clinics are really desperate and they are in the midst of treatment. Those anecdotes suggest that infertility is very stressful and can be a 'marriage killer' but we are only looking at a very narrow slice of the population who have fertility issues. We are only looking at them during a short-term period and we don't know about the long term."
Approximately one of three American women experiences problems with infertility sometime in her reproductive life. This proportion is expected to rise as extended education and a rising age at marriage cause more Americans to postpone childbearing into their late 20s, 30s, and even their 40s. Some 20 percent of American women ages 35-39 are childless, but only half of them expect to stay that way, White said. The statistics suggest many women remain confident of their ability to have children at ages during which their risk of experiencing infertility rises dramatically, White said.
The project has two aims. First, the researchers hope to learn why half of couples who experience infertility do not seek medical help or seek minimal help. Second, they will examine the social and psychological consequences of infertility and infertility treatment on people's lives. White said that among the issues to be examined are ethical and financial barriers to use of assisted reproductive technologies, the roles of family and friends in encouraging or discouraging treatment, adoption as an alternative to treatment, and the effect of infertility and of infertility treatment on depression, marital quality, and life satisfaction.
"We are really interested in learning what causes people to move forward on the medical track; what causes them to reinvent themselves (as permanently childless people) or to begin the adoption process," she said. "We want to follow the trajectories. For some individuals, this can take as long as 10 years."
The researchers plan a national telephone survey that will interview women and their partners now and then reinterview them in three years. The study expects to screen more than 40,000 households, eventually interviewing 7,500 women ages 25-45 and 2,300 husbands or partners. Because the team is especially interested in minority women's access to and response to infertility, the survey will include an over-sample of African American and Latina women. The surveys will be conducted by UNL's Bureau of Sociological Research and Penn State's Social Research Center.
The study is unusual in that men will also be interviewed.
"No one really knows much about how men feel about infertility," White said. "It's been largely studied as a women's problem. We are interested in how couple dynamics affect the process."
White said the study will look to validate what is known as "help-seeking theory," finding out what motivates or prompts people to seek medical help. For many medical issues, White said, how early one visits a doctor for treatment has an impact on the outcome. Scientists are interested in learning why people delay treatment and what might promote earlier help-seeking, she said.
"If we can figure out why people don't seek medical help, we may be able to identify ways to change this, for example, through educating both patients and their doctors," White said. She speculated that some of those barriers might be distrust of doctors, financial barriers (high costs and insurance prohibitions), ethical concerns or embarrassment.
White said one key to the team receiving the grant was the university's investment in the project through a seed grant that funded initial studies that demonstrated the team's research model would be successful.
"Although we wrote a strong proposal and NIH was interested in the topic, we knew that our chances of getting funding were zero to none because none of the NU researchers had a track record in infertility research," White said.
The research team includes social scientists from five institutions and three disciplines. In addition to White, the team includes Julia McQuillan, assistant professor of sociology at UNL; Naomi Lacy, assistant professor in the research division of the University of Nebraska Medical Center's Department of Family Medicine; David Johnson, professor of sociology and human development and family studies, and Laurie Scheuble, senior lecturer in sociology, both at Penn State University; Arthur Greil, a sociologist from Alfred University in New York; and Mary Casey Jacob, a psychologist, who counsels infertile couples at University of Connecticut Health Center. Johnson formerly was a sociologist at UNL and Scheuble, his wife, was on the faculty at Doane College.
Through a joint UNMC-UNL fund to encourage successful grants in health research, the university provided seed money that allowed the team to do a pilot project interviewing 580 women in the Midwest in 2002. The team also received seed money from the Nebraska Tobacco Settlement Biomedical Research Enhancement Fund, which was earmarked for addressing health disparities. The seed grant allowed the team to demonstrate that it could design an effective strategy to oversample African Americans and Latinos.
As part of the preparation for the research, White and Julia McQuillan are seeking women age 25-45 and their partners who have been trying to get pregnant for at least six months or who could have gotten pregnant during the same timeframe. Informal interviews with these volunteers, who will be compensated for their time, will help researchers develop the final survey questionnaire. Information about participating in the study can be directed to 402-472-3672 or 800-480-4549. Those interested are asked to call before May 2004.
RSS