United by Our Interests

Three weeks ago, we released the Community Voices videos and have been really excited about your responses. Hundreds of people have watched our YouTube channel, “Liked” our Facebook page and visited this blog as a result of our campaign. In addition, we have been collecting feedback about our videos at community meetings and events. If you haven’t had a chance to tell us what you think about the videos, please do so here.

When we started reaching out to community agencies all across Cook County to inform them about the National Children’s Study, our goal was to start a two-way conversation. As members of the community, we are well aware how an unhealthy community affects everyone. If we can learn through a long-term study like the NCS how homes, schools, and neighborhoods influence the health and safety of our kids, we believe we could build the evidence that we need to address and potentially prevent many problems. Besides sharing our side of the story, we wanted to hear from community leaders, parents, teachers, healthcare providers, and others about protecting and improving the health of their communities.

In the past couple of weeks, we have talked about the importance of longitudinal studies and the role of participants. In this week’s outtake, one of our partners shares her story regarding her work in the community:




We wanted to find a common ground for the entire community to come together around the NCS. As people who live and work in Cook County, we all want our kids to grow up in a healthy environment. By this, we mean we want them to have access to high quality schools, clean water, stores with fresh produce, and safe parks where they can be active, among many other things. As NCS data become available, it will be used to analyze the effect on health of genetics, personal choice and the environment that could ultimately be used to develop programs and policies that protect the health of our families and communities for years to come.

Our Number One Priority: Study Participants

During the course of our interviews with people who live and work across Cook County, we asked women if they would consider participating in the National Children’s Study (NCS). All of the women with whom we spoke overwhelmingly said “yes” to volunteering for the NCS.  In this week’s post, you can see a sample of those responses:



Regardless of where they are in life (some of them are mothers, some do not have children, others are planning to have children), women throughout the region always ask, what does participation in the NCS entail?

During active recruitment, our main message to women who enrolled in the NCS was that they would be part of a pioneering group of women who would join a national effort to ultimately improve children’s health. We are very thankful to all of our participants who answered the call and continue to be involved in Study activities. All of us should be very proud of our participants because their contribution is invaluable to future generations. Besides the real possibility of helping improve children’s health, our participants joined the NCS because:

1.    They only have to give the Study a small amount of their time.
Participation occurs through periodic visits and phone calls with National Children’s Study staff before and during pregnancy, and as their children grow. Our colleagues at the Cumberland County Maine Study Center have written a series of blog posts detailing what happens at each study visit. Take a look here.

2.    The NCS does not interfere with their life.
The National Children’s Study is not a substitute for regular doctor visits for our moms or their children. Participants won’t be asked to take any medications or treatments.

3.    Participants can decide what information to share.
If they are ever uncomfortable answering a question or participating in any part of a Study visit, they can opt out. If life is too busy, they can take a break and rejoin the Study when it better fits their schedule.

4.    Participants can move to a new home or out of Cook County and still be a part of the Study.
Study participants needed to live in one of several randomly chosen communities in Cook County only when they enrolled. If they move out of town or across the country, they can still be involved in the NCS.

5.    They are part of a ground-breaking study.
As we discussed in last week’s post, no other study has looked at how a wide range of environmental exposures impact children’s health beginning with pregnancy over the long-term. Previous adult studies did not consider whether environmental factors might have a different impact on children.

6.    They receive a small amount of money for their time. 
We recognize the commitment participants are making to improve the health and well-being of children. We are providing compensation and thank-you gifts for participating in the Study.

7.    Participants can change the world!
Doctors, scientists, health agencies and community organizations that work with children could ultimately use information from the Study to improve how we prevent and treat children’s health problems. We can’t stress enough that participation in the National Children’s Study will make a difference for generations to come.

Here for the Long Haul

If you ever stop by our table at a community event, one of the things that you will hear us talk about repeatedly is how big and how long the National Children’s Study (NCS) is. The NCS is simply the largest and longest study of women and children ever to be conducted in the United States. We have never had a study this big, that lasts this long, or that asks this many questions about mothers’ and children’s health. Studying so many children and pregnant women before, during and after their pregnancy for 21 years may help us answer questions about pregnancy and children’s health.

Why is such a long-term study needed? 

Scientists call long-term studies like the NCS “longitudinal.” Longitudinal studies are generally big undertakings, requiring large numbers of study participants and use of extensive resources for their planning and execution. Longitudinal studies are often considered to give very good results, because they are so long and can look at many different parts of people’s lives. Longitudinal studies are useful for studying changes in individuals over time in contrast to surveys, which provide a snapshot at a single point in time. Time, however, is itself one of the most important explanations of change. Therefore, longitudinal studies can give answers to questions concerning change that one-time surveys cannot.

By following children and families for 21 years or more, the NCS will collect information about health at different ages and stages of growth and in various situations, to possibly shed light on the factors that influence health and development as people grow.

As promised in last week’s post, for the next several weeks, we will be posting some outtakes that did not make it into our final set of Videovoice videos. In this week’s clip, Dr. Clavier talks about the importance of longitudinal studies:

As you heard, other large and long-term studies have really made a difference in our understanding of adult health. For example, the willingness of people in a small town in Massachusetts – Framingham – to take part in a study for more than 20 years showed us why smoking is bad for health, among many other things. To learn more about the Framingham study, check out this blog post.

Other studies have given us some clues about children’s health, but none of them was large enough or lasted long enough to give us the information we really need to understand more about children’s health and well-being. The NCS is different. Because the NCS starts before babies are even born and continues until they are young adults, it can tell us a lot more about what really matters when it comes to what makes kids healthy, makes them sick, or what keeps them safe.

The NCS offers our community the opportunity to take part in the largest long-term study of children ever. An unhealthy community affects everyone. If we can learn through a long-term study how homes, schools, and neighborhoods influence the health and safety of kids, we can perhaps address and prevent many health problems.

Community Voices

Seven months ago, the Greater Chicago Study Center (GCSC) embarked on a journey to engage our community partners to find out their thoughts and opinions about children’s health and the National Children’s Study (NCS). First, we asked community partners to recommend local parents active in their communities through volunteering, PTA, school council or other activities. We asked these parents to be GCSC Neighborhood Ambassadors and help advocate for the Study in their local communities.  For the next few weeks, we gathered as a group and gained knowledge and skills in filmmaking and interviewing. If you followed our postings on this blog between October 2011 and February 2012, you were able to see some of the progress that we made in reaching out to individuals all around Cook County. It quickly became evident that the time spent conducting these interviews about our children’s health concerns constituted a rewarding experience for all.

Since February, we have been very busy reviewing the many hours of footage filmed by our Neighborhood Ambassadors in an effort to distill them into concise informational videos. We learned much about some of the main health concerns shared by communities about Cook County children, including asthma, obesity, and diabetes. Some parents shared their personal stories regarding their own children being afflicted by some of these conditions. Additionally, local residents declared their excitement about the NCS because the Study is going to take a closer look at the environment where children are growing up and its relationship to children’s well-being. In fact, the holistic approach to environment, as well as the length and size of the Study, is what distinguishes the NCS from other studies. All of the people whom we approached were eager to express their support for the NCS because they understand its tremendous potential to improve the health of future generations.

After months of hard work, the GCSC is proud to launch Community Voices, two awareness campaign videos in English and Spanish as the result of our VideoVoice project:

We would love to hear your comments about the videos. Please click here to answer a short survey about the video.

As you can imagine, many interesting interviews did not make it into this final set of videos. Check back here next week, as we will post some of them for you.

As part of our mission at the Greater Chicago Study Center, we are committed to addressing issues related to health and well-being of children and their families. We thank you for helping us ensure the success of the National Children’s Study in Cook County.

April is Autism Awareness Month

Molly Losh, Ph.D., Jane and Michael Hoffman Assistant Professor from Department of Communication Sciences and Disorders at Northwestern University discusses the importance of early screening and early intervention for parents who are worried about their child’s development.

Dr. Losh’s research focuses on delineating the nature and basis of language impairment in autism and related neurobiological disorders. Her studies adopt clinical-behavioral and family-genetic methods and designs to characterize patterns of language strengths and weaknesses that define particular disorders, and examine ties to neuropsychological and genetic underpinnings.

For our National Autism Awareness Month feature, she takes on the following questions: How does a child's autism diagnosis affect a family? Should parents consider complementary and alternative therapies for their autistic child? Is there a true rise in the incidence of autism in the US? and she offers some helpful suggestions.

The Home Stretch

As we work putting the final touches on the videos produced by the VideoVoice project participants, we continue to reflect on what we have accomplished through this process. One of the main things we have learned is that community leaders are very aware of the health concerns in their communities. At the same time, local parents and residents seem worried about the environment in which their children are growing up. Whether it is a school in proximity to a Brownfields, or a power plant in the neighborhood, or the safety of a well water source, all of these are real concerns that have been brought up in our conversations in the community. There are many unanswered questions regarding the relationship between the built environment and children’s health. Data gathered through the National Children’s Study could provide insight and guidance for developing strategies to reduce the environmental risk of disease in the future. Our VideoVoice Project Coordinator talks about the lessons from conducting research in a very neighborhood-oriented city:

 However, the NCS goes beyond the physical environment, as it will also pay attention to social and cultural factors. As an observational study, the NCS is taking into account child-rearing practices, family background and composition, maternal and infant nutrition, among many other factors that may affect a child’s growth and development.  Additionally, NCS encourages community involvement in places where the NCS is taking place, here in Cook County and around the country. Maria, one our neighborhood ambassador, talks about this issue in the clip below:

“Well, I learned a lot about how my community feels, what their fears are, what their strengths are, how they view life, what their motivations are, what is it that precisely keeps us living in the same community. All of that in terms of my community. I also learned to listen a little bit more, to take my time to understand the thought process that people have when they are conversing with you. [I also learned] to understand their motivations, to see from an even more human point of view those motivations that make you live in such a beautiful community like ours. I also learned to feel more secure when talking to people. When doing the interviews, each one gave me more strength, more security, more confidence in finding out what we are thinking, what is going on with us and how can we project that. It was really beautiful.”

Informed Consent in the National Children’s Study

Check out this post from Cumberland County Study Center: Informed Consent in the National Children’s Study

Informed consent is the process by which researchers ensure that potential participants have adequate information to make a decision about whether to participate in a research study. An informed consent document is the educational tool providing this information. All individuals invited to participate in the National Children’s Study...

CPD Blog - Cache Valley National Children’s Study expands data collection - CPD

From our friends at Cache County Study Center:

CPD Blog - Cache Valley National Children's Study expands data collection - CPD

Learn and Learn (and Learn)

Over the past couple of months, we have been surprised, sympathetic, and most of all humbled by many of the conversations we have had with people who care so much about their community, their children and their shared future. It has been a great experience being able to record these interviews, and we are working very hard to produce a final set of videos that will hopefully do justice to all the individuals who participated and the communities whom they represent.

While we feel we accomplished one of our goals of learning more about different communities across Cook County, we were also striving to make this project a learning experience for local community residents whom were working with us as neighborhood ambassadors. Early on, we decided one of the main things we were going to work on was interviewing techniques. In the intervening weeks, we also practice some technical skills in handling video and audio equipment. In addition, we became subjects of the interviews ourselves as you have witnessed in this very forum. In this week’s post, Ellie and Rose describe below what they have learned through the VideoVoice process:

But the “learning” does not stop there. In a VideoVoice project, there are actually three areas in which knowledge is gained. As we mentioned before, VideoVoice first affords you the opportunity to learn more about the community. This is particularly helpful for researchers who might be somewhat unfamiliar with the history, background and cultural values of the selected community. Second, VideoVoice provides participants with interviewing skills and an understanding of video production. Finally, VideoVoice aims to share what we learned with the public in general through a final video product. The goal being that the community gains a deeper understanding of our message in their own words. We are anxious to see the end result in the upcoming year.

Happy New Year and look for our next update in 2012!

With a Smile on Our Face

Fresh from one of our last interviews in the community, coincidentally on the first day with fresh snow on the ground, we keep reflecting on what we have learned over the past couple of months as we conducted our VideoVoice project in Cook County. We have interviewed some people who have been really open in telling us how they feel about the National Children’s Study and its goals. Over and over again we have heard from parents, school teachers, community leaders, healthcare professionals and others that the NCS presents a unique opportunity to improve the health of our children. While most people seem to understand the importance of the Study, they are also keenly aware of some of the perceived barriers to participation, whether the length of the Study, the number of interviews per year, language issues, and privacy concerns, among others. However, people we interviewed have been extremely thoughtful not only pointing out some of these issues but also providing their own recommendations on how to overcome them.

If you look back at our first post, we explained that a VideoVoice project like ours seeks participation from community members, strengthens and builds upon those relationships, and mobilizes people to action. It is fair to say that we have been overwhelmed by the level of participation of our community partners and community residents, and as we compile all the interviews for our final video, you will see that people really let their voices be heard. Our call to action will come soon when we release our final product and ask you to help us distribute it widely.

In this week’s clip, one of our neighborhood ambassadors reflects upon interview styles. When conducting VideoVoice interviews, our aim has always been to create a relaxed environment where the interviewee feels comfortable and even forgets that there is a camera and a microphone pointed at him or her. We have accomplished this by interviewing people in their own setting, whether their own home, office, or out in their community. We also practiced how to ask questions in a calm voice and friendly manner. In addition, we assure interviewees that they do not need to prepare prior to the interview. If someone asked to see the questions we will be asking, we have sent a list of the types of questions we ask; while keeping in mind that our intention is to have a frank and honest conversation with them. Have you ever interviewed someone who never smiles? Neither have we.

Suggestion Box

As President Obama said on his Thanksgiving address last week, I hope you all had a wonderful holiday “eating great food, watching a little football, and reflecting on how truly lucky we are.”

Here at the National Children’s Study, we are thankful for the opportunity to contribute to such a significant undertaking as improving the health of all children. We would be unable to do that if we did not have the support of our amazing community partners, who week by week over the past twelve months continue displaying our posters and brochures at their locations, inviting us to community events, and referring people to call our number if they are interested in participating.

As our VideoVoice project is coming to an end, we asked our neighborhood ambassadors for their thoughts and suggestions as the National Children’s Study moves forward in Cook County. Here is what Maria had to say:

“Some of the things that I can recommend are basically the same things that people recommended me or the same concerns they had about it. Among them is the expansion of the selected communities, perhaps to include more communities in order to admit a larger number of children.

Perhaps, contemplate the possibility of having women who become pregnant prior to eighteen years of age because that is a reality in our community. There are many pregnant women under eighteen, [whom] regrettably could be left out of this program having the opportunity to study the effects precisely which that premature pregnancy could have on the baby throughout his life.

Another would be to emphasize more our program through television, radio, mass media, utilize the media so that people know about us even more. Those are the main things that I would suggest the Study.

Of course, to continue working, to persist bringing information to the families. Perhaps one more thing that could work quite well is to bring specific information about topics of interest to our community. For example, health topics, mental health topics… In our Latino community, one of the main concerns is how the environment affects the emotional health of its inhabitants.”

NCS in the Community

On a cold Midwestern day, we traveled to the southwest suburbs of Cook County to interview one of our community partners. Lori Chesna, Executive Director of the Southwest Special Recreation Association, has been a strong supporter on the National Children’s Study Greater Chicago Study Center since the first time we met her almost nine months ago. Lori spoke to us about her interest in the NCS not only on a professional level, as a community leader at an agency that works with families of children with special needs, but also on a personal level as a mother of four.

Lori sees the opportunity to participate in the National Children’s Study as a way for moms and dads to contribute to society. “I would love to be a part of it,” Lori said when asked if she would take part in the Study. “So I encourage anybody to really be involved in a program like this, although it might not affect you, you are helping impact generations to come.” Lori goes on to say how other community organizations should get involved in the NCS and tell families whom they work with to find out if they are eligible to participate.

In this week’s post, one of our neighborhood ambassadors and our project coordinator talk about the impact of the National Children’s Study in the community. Our neighborhood ambassadors have had a fantastic experience in the community not only promoting the Study but also interviewing people for our VideoVoice project. We are really excited for all the footage that has been gathered and cannot wait to put together the final video. In the meantime, we leave you with some initial recommendations and thoughts for the future of the project:

Research vs. Study

Research (noun): studious inquiry or examination; especially : investigation or experimentation aimed at the discovery and interpretation of facts, revision of accepted theories or laws in the light of new facts, or practical application of such new or revised theories or laws

Study (noun): a careful examination or analysis of a phenomenon, development, or question

At first look, both of these terms “research” and “study” seem to refer to the very same concept. However, as the interviews on this week’s post reveal, community residents may have different reactions when they hear each word mentioned. From a researcher’s standpoint, our community outreach goal is to engage potential participants and explain the benefits of joining the National Children’s Study (NCS). In that respect, our neighborhood ambassadors have become the key link between what’s happening on the ground and what the Study wants to accomplish.

Last week, our neighborhood ambassadors talked about how community residents want better and healthier neighborhoods for our children. But how do we achieve that? Policy-makers base their decisions on evidence-based research. The National Children’s Study has the potential to become the richest source of information that could provide recommendations on how to make our communities better places for children to grow up healthy and safe. In order to achieve that goal, we need expecting mothers, couples starting their families, women and local residents from across Cook County and throughout the country to consider the NCS a viable way of public participation.

The current state of affairs may signal that people are eager to make a contribution to society. The NCS is asking mothers-to-be to share their stories so we can gain a better understanding of what affects children’s health before conception, during pregnancy and for years thereafter. By answering survey questions, participating in interviews and providing biological and environmental samples, NCS participants are making a contribution that could improve the lives of generations to come.

Below, Dr. Nadine Peacock, one of our co-investigators, talks about what surprised her about our discussion during our weekly VideoVoice meeting. On the other hand, one of our neighborhood ambassadors explains how she goes about convincing people of the value of the NCS.

What are your views on the National Children’s Study? Please share your comments below after watching this week's clips: