Ilhom Akobirshoev, Senior Research Associate, Heller School for Social Policy and Management

Office of the Vice Provost for Research: Thanks for coming to talk to me, Ilhom. I’m excited to follow up with a Provost Research Grant recipient on what you’re working on now.

Ilhom Akobirshoev: We’re specifically looking to work on research funded by the National Institute of Health that looks at the pregnancy experiences of women with intellectual developmental disabilities, and the experiences during pregnancy of women who are deaf and hard of hearing.

OVPR: Tell me about the problem.

IA: There hasn’t been any publication on pregnancy, let alone birth outcomes, among women with disabilities. I look at the racial and ethnic disparities in birth outcomes and cost of delivery. There are significant disparities in birth outcomes between black, white, and Hispanic women. Black women are at higher risk of low birthweight, preterm birth, and other adverse outcomes. Interestingly, we did not find the same pattern in women with intellectual or developmental disabilities that’s being observed in the general obstetric population regarding birth outcomes. One of the problems that we keep finding and seeing in the population of women with intellectual and developmental disabilities is that there’s a lack of training among OBGYN nursing staff. These people have unique needs that have to be addressed. Through this research we’re raising the red flag that these women are prone to these risks. They are more likely to have pre term birth, and low birth weight.

OVPR: Why do you think this problem exists?

IA: These issues could come up due to a communication problem. It’s these women’s right to give birth and they need the opportunity to give birth safely, and we’d like to expect normal outcomes. There need to be social services available and a more holistic approach to make sure safe births are the norm for women with any disabilities.

OVPR: What accounts for the differences in costs between mothers with and without disabilities?

IA: I look at racial disparities in what the hospital charges for labor and delivery costs for hospitalizations. I look at Massachusetts data and national data on hospital discharge records for this subsample of women with intellectual disabilities. If you’re a black or Hispanic woman--controlling for confounding factors such as education, income, comorbidities, length of stay during delivery, caesarian section--you will be charged 10-15% more than a white woman. We initially thought that a reason for this difference was maybe minority women are clustered within certain higher cost hospitals, city hospital or teaching hospitals, but we control for that, and we still see the same pattern in Massachusetts and in the national data. These findings are very compelling.

OVPR: What is a contextual environment?

IA: In any analysis, we want to see what predicts adverse outcomes, we would like to know the most powerful predictors that lead to these outcomes: For example, it could be the house we were born into, the neighborhood, it’s our parents’ education, and etc. The contextual environment is usually referred to socioeconomic, demographic, and neighborhood characteristics, which can be associated with or influence the outcomes of interest. For example, if researchers after controlling for all confounding factors, and find that lack of insurance is independently associated with poor health or birth outcomes, then this means that the most likely intervention to improve health outcomes or birth outcomes should be providing affordable health insurance to those who lack health insurance.

OVPR: What do you hope to accomplish with this research?

IA: At Lurie Institute, with all our research when we identify disparities we want to raise a flag. For example, on the research on hospital delivery charges we ask the question—why do two women with the same issues and similar socioeconomic characteristics get charged differently when they’re admitted for delivery to the hospital depending on the color of their skin or ethnicity? At Heller and Lurie we try to disseminate our research findings to key audience who are in a position to address the problems or disparities that we identify with our research. For example, for all our findings about birth outcomes among women with disabilities, we try to reach and publish in clinical journals which doctors and OBGYN staff read. Then doctors can start using this knowledge immediately in their counselling and take preventative measures with regard to their patients with disabilities. Next step, we’re going to develop guidelines by involving key stakeholders how to improve the quality of health care for all women during pregnancy.

Most of our research answers the question of WHAT happens but now we are also asking the HOW questions and trying to make connections.