How do Health Disparities affect NICU Families?

Pebbles of Hope “Bridging the Gap” Podcast

Pebbles of Hope speaks with Jenné Johns, director of health disparities at a national managed care organization, in the newly released episode of the Bridging the Gap podcast

Pebbles of Hope releases today the second episode of its podcast series, Bridging the Gap, in which we explore the health disparities that affect NICU families. This episode features a conversation between our Executive Director, Cheryl Chotrani, and Jenné Johns, a director of health disparities at a national managed care organization. Jenné also happens to be the mother of a micropreemie and author of children’s book “Once Upon a Preemie”. Our conversation explored the causes of health disparities, how they affect NICU families, and some of the solutions that are being evaluated across the country. A condensed version of our conversation is below.

What do health disparities mean and why is this such an important issue?

Jenné: Health disparities can be defined as differences in health status among distinct segments of the population. These differences may be influenced by factors such as gender, race, ethnicity, education, income, disability or geographic location. Health equity, on the other hand, is achieving the highest level of health for all people by equalizing the conditions for health across groups, especially those that have historically been disadvantaged. Addressing health disparities helps reduce and, in some cases, avoid preventable premature deaths. In addition, health disparities cost the nation human capital and have a tremendous impact on our economy. A study conducted by the Joint Center for Political and Economic Studies found that the financial cost of health inequities and premature death cost the US nearly $1.24 trillion between 2003 and 2006. The financial and social impact of health disparities make this a major issue that will require national attention and new policies to address this problem.

What contributes to these disparities and how do they come about?

Jenné: Many of the factors that contribute to disparities in health outcomes are called social determinants of health. These are social and economic factors that tremendously impact the health outcomes and life trajectories for various social groups. These factors include things such as education-level, income-level, zip code, access to transportation, among other things, and collectively these factors contribute to over half of a person’s health outcomes. For example, studies have shown that individuals living in certain zip codes close to inner-city hubs in major metropolitan areas have shorter life spans than those living further away from these locations. Many of these neighborhoods are plagued with violence, crime, fast-food establishments that don’t promote health and limited safe areas for children to go outside and play. All of these factors contribute to the persistence of health disparities in this country.

How do health disparities specifically impact NICU families? What effect do disparities have on the health outcomes of babies and/or their mothers in the NICU?

Jenné: Let’s start with the preterm birth rate disparities. African-American, Hispanic and American Indian babies have higher rates of prematurity than their counterparts. Almost 10% of all babies in this country are born prematurely and almost half of those are born to African-American mothers. The gap in preterm birth rates between African-American women and women of other racial groups has also widened according to the latest March of Dimes Prematurity Report Card. Something is happening that is landing some babies in the NICU at higher rates than others, and that requires national attention.

Do you have any thoughts on what is causing this gap? Why has it persisted for so long?

Jenné: Researchers, practitioners, physicians and national thought leaders have postulated that the impact of chronic and toxic stress are impacting and affecting babies in their mother’s wombs. So when women experience life trauma repeatedly, the impact of that can be felt in the womb and shows up as a higher premature birth rate. All of the social determinants of health bundled together in addition to chronic stress building up over time contribute to these disparities. For NICU families, disparities can be felt in two ways. First, on the side of the parent, it can take the form of a mother having to decide between going to a low-wage job for much-needed income and benefits or staying bedside with their baby. They may have difficulty finding transportation to the NICU or may face challenges interpreting the medical jargon that will be thrown at them. For mothers that don’t speak English there may also be language barriers that lead to disparities. On the side of the provider, hospital staff may not always have the proper training to know how to deal with these issues they may come across with their NICU families. Cultural competency plays a big role in how medical professionals respond to families from disadvantaged groups. Communication practices really need to be tailored and targeted to meet the needs of each individual family in order to be effective. Having parent support and psycho-social support is critical and ideally should be offered to all families as soon as they enter the NICU.

What, if any, gaps in care or support did you experience as a former NICU mom?

Jenné: Though my family would not classify as underserved, the hospital in which my son was born was located in an underserved community. At that hospital, we did not have the benefit of having a parent-led support group, which I believe would have made a tremendous difference in helping us cope with the trauma of the NICU. That’s something that I wish would have been made available to me and to all of the families that were in the NICU at that time.

How else might disparities affect the health of a NICU baby?

Jenné: I am fortunate to be a homeowner, so I had a safe, clean environment for my son to come home to when he was discharged from the NICU. Housing stability, safe housing, clean housing is another really big factor and an issue for some underserved families. Some members of the Medicaid population are very mobile, frequently moving from home to home. When you have a fragile baby that you’re bringing home from the NICU, not all of them are going home to a stable, safe and clean environment. It is very easy for a NICU baby to end up back in the hospital, so a family’s housing situation can be a major factor in that.

What can be done to help reduce disparities and narrow the gap?

Jenné: An organization called the Centering Healthcare Institute is leading a phenomenal model nationally that aims to provide prenatal care in a non-traditional way. Their approach involves inviting pregnant women who are around the same gestational age to receive group prenatal care in which they participate in a themed educational discussion on various topics relevant to having a healthy pregnancy and baby. The initial outcomes that have been analyzed for the women that have gone through this model show that these mothers are experiencing lower rates of preterm birth and that the gaps in outcomes between women in different groups can be reduced or eliminated with this approach to care. There is something very powerful about bringing groups of women together who are around the same gestational age of pregnancy, walking them through a 10-visit journey to get to a healthy birth together and then celebrating having a healthy baby.

Another initiative that seems to be helping is the adoption of class standards that encompass culturally and linguistically appropriate services that each healthcare environment can take on to ensure proper staff training, availability of language interpretation resources and diversity among the staff providing care. Hospitals are also now being asked to report outcomes based on race, ethnicity and language, which allows for healthcare providers and insurers to access more data to better understand variations in health between groups so that interventions, programs and services can be targeted to disadvantaged groups more effectively. All of these things will be helpful to improving disparities in preterm birth rates and outcomes during and after the NICU.

The full audio copy of this episode as well as all other episodes of the Bridging the Gap podcast is available on iTunes, Google Play or wherever you get your podcasts.

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