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:

Prenatal Care

In this week’s post, one of our neighborhood ambassadors brings up the important issue of prenatal care and how the National Children’s Study (NCS) is focusing on this significant stage of a woman’s pregnancy:

If you listened closely, however, Rose also mentions how the NCS is going to “make mothers more aware of things that they weren’t aware before.” As in any study, a possible research bias may occur if study participants change their behavior simply because they are being studied. This is called the “Hawthorne Effect,” which bears the name of the Hawthorne Works factory outside of Chicago.

Now let’s take a closer look at prenatal care:

In its most basic definition, prenatal care is the health care that a doctor or clinic gives to a pregnant woman. The American Academy ofFamily Physicians and the American College of Obstetricians and Gynecologists recommend prenatal care visits take place at least:

• Once every four weeks during the first six months of being pregnant
• Once every two weeks during the seventh and eight months of being pregnant
• Once every week during the last month of being pregnant
• Or more often as directed by the doctor

In the state of Illinois 86 percent of mothers begin prenatal care in the first trimester. However, that number varies widely by race/ethnicity where Black and Latina mothers have lower rates than White moms. Even though the proportion of mothers receiving early prenatal care is at a record high in our increasingly diverse society, disparities in care and outcomes remain among racial and ethnic groups, presenting a host of challenges for many families. In addition, there are differences in the women’s stage of pregnancy when seeking prenatal care, as well as dissimilarities in the type of providers sought at various stages of pregnancy. Some women may not seek care until very close to birth, and the provider may be a hospital. The National Children’s Study will take all of these characteristics into account to seek a better understanding of important questions such as:

• Can good nutrition help overcome potential risks from other environmental exposures that can affect the fetus?
• How does infection at various times over the course of pregnancy impact the fetus? 
• How are exposures to environmental toxicants, stress, prenatal nutrition, and other factors, such as genes, linked to a child’s risk of autism, ADHD, and other developmental disorders?

Results from this effort can help revise standards of care for prenatal screening, as well as inform guidelines for the management of certain conditions during pregnancy, such as diabetes. While Rose was right to point out how the NCS may make participants aware of certain things, it is highly unlikely that a Hawthorne-type effect might be at play in terms of prenatal care.

Questions, Questions, Questions

As part of the local NCS team, we participate in community events such as health fairs, Baby expos, Parent Cafes, block parties, among many others, and we try to provide people with enough information about the National Children’s Study, so they can consider joining our efforts. But people always have questions, and that is one of the reasons why we created this blog to provide yet another way for you to get in contact with us and help answer those questions.

If you stopped by our table at a recent event in your community and took a brochure home with you, we bet that after taking a few minutes to read it over, now you have some questions. You can always call, text or visit the website listed on the back the brochure. In addition, you can visit our Facebook page and post on our wall, send us a Tweet or even post a comment below. No matter which way you decide to contact us, one of our friendly community outreach folks will get back to you.

This past week, NCS Staff sat down with the neighborhood ambassadors to discuss different ways in which they approach people and have conversations about the NCS. Maria described to us a conversation she had with a pregnant mother at a Spooktacular event at the community center in her neighborhood.

“A pregnant woman came up to my NCS table, picked up a flier, read it and then paced around for five minutes. After finishing a conversation with another woman, I asked her if she had ever heard of the NCS and she said she had and then posed a variety of questions because she said she was thinking about participating. I found out her name was Monica*, and she first asked if she would have to take her child to a clinic or have additional doctor visits. I said no, the NCS is an observational study, and told Monica that means there are no treatments, medications or interventions and that the study will not interfere with how her family makes any decisions about their child’s life, including healthcare.

Monica then said that she heard that we would come to her house and that she was worried about this. I told her that our schedulers would work with her in finding times that work best with her schedule and that, for each Study visit or interview, we would explain what information would be collected beforehand. In addition, I told Monica that home visits become less frequent as her child gets older.

Monica then said that she was happy that the NCS would call her ahead of time to schedule a home visit but that she still did not really understand what it would mean to participate in the NCS. I told her that as a study participant, she will be asked to answer surveys or interviews over the phone, by mail, in-person or online a few times a year. She can also at any time opt out of the NCS and rejoin at a later time, but I made sure to let Monica know that her participation would help her children’s children live healthier lives in the future.”

We have been in contact with hundreds of parents from across Cook County, and many of them have decided to join us. If you are considering taking part in the Study, we are here to help. So, go ahead, leave us a comment below and take the first step in improving the lives of generations to come.

* Not her real name.

Q&A on dairy free diets (part 2)

We like the part where it says "Many illnesses and diseases can be decreased if we just knew what was going on inside our bodies." That is why we are conducting the National Children's Study. The NCS will look at the environments babies are exposed to before, during and after they are born. For a scientific description of the Study go here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3095263/?tool=pubmed Thank you Kate for sharing this.

Q&A on dairy free diets (part 2)

Environmental Factors

We started this project because we are “all committed to observe, listen carefully, evaluate the evidence, engage, and incorporate the voices of the communities and people interested and involved in the study.[1]”

The National Children’s Study has the potential to impact millions of children and families across the country to lead healthier, safer and happier lives in the future. The Study plans to accomplish this by focusing on environmental factors and their influence on the health and development of children. The NCS defines the “environment” very broadly. First of all, environment includes your physical surroundings, and as the interviews on this week’s post reveal, many community residents that we talk to do worry about the quality of the air, water and soil in their community and how that might affect their children’s health.

For us, environment does not only include geographic location and differences between neighborhoods, but also biological factors such as diet and family health history. The Study also plans to look at other factors such as family size and composition. There are also emotional factors such as behavioral inhibition, and social factors such as closeness to family and friends. As children get older, the Study will also observe their cognitive development, peer and cultural influences. In addition, the Study intends to examine chemicals in the environments where children live, learn, and play. As this video from HealthyChild.org  shows, there are more chemicals in the environments where children grow up today than ever before:

The NCS wants to find out how the interaction of all these environmental factors makes some children predisposed to certain diseases. In addition, the NCS also seeks to find which factors are actually helpful in preventing some children from developing illness. The goal of NCS is to provide policy makers with valuable data to improve prevention programs and the necessary tools to combat the negative environmental impacts on children’s health and development.

The issues raised by our neighborhood ambassadors in the following videos come out of their conversations with parents in the community. We know that some communities in Cook County disproportionately suffer from premature deaths, high rates of asthma and emergency room visits due to air pollution. In addition, lead poisoning is still major concern nationwide as there are 36.7 billion square feet of lead paint remaining in the United States, which is enough to coat the entire city of Chicago with four layers.[2] Expecting parents who are interested in increasing our understanding about these and many other environmental health issues are signing up for the National Children’s Study. Even if you are not planning to have more children, watch the videos below and then click the links on the left to find out other ways in which you can get involved:

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[1] Hirschfeld S, Kramer B, Guttmacher A. Current Status of the National Children’s Study [commentary]. Epidemiology. 2010;21:605–606.

[2] Source: HUD National Survey of Lead and Allergens, 2000

Ask the Pediatrician

Dr. Myrtis Sullivan, Chair of the Community Advisory Board of the National Children’s Study Greater Chicago Study Center, is a board-certified pediatrician with many years of clinical experience at a large public hospital. Dr. Sullivan’s research focuses on chronic diseases of childhood and adolescence (particularly bronchial asthma); breastfeeding and community-based collaborative research.

On November 12, 2011, Dr. Sullivan will be our featured speaker at our first National Children’s Study Baby Shower in Cook County. Dr. Sullivan will be taking questions from the audience about your children’s health, growth and development. We would like to offer the opportunity to all our readers to ask questions as well. Starting today, we will be collecting questions for Dr. Sullivan, so please leave your question in the comments below, OR write it on our Facebook wall, OR ask us via Twitter using #ncsmom. We will accept questions, but will only answer those that are thought to be of general interest to other parents in the Ask the Pediatrician forum. Make sure to follow us on Twitter as we will be live-tweeting the event on November 12^th, and after the event we will post a summary right here on our blog.

Disclaimer: This information is not meant to replace the advice of the physician who cares for your child. The information is designed to support, not replace, the relationship that exists between a patient/site visitor and his/her existing physician. All medical advice should be considered incomplete without a physical exam, which is not possible without a visit to your Pediatrician. This advice is meant for informational use only.

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:

Progress in the Field

As we continue our work in the community, attending events throughout Cook County, making presentations, talking to mothers and fathers interested in participating in the Study, we have been learning a great deal about what people’s concerns are in terms of the health of their community and what they want for their children.

Some parents have told us they are worried about living in proximity to a power plant and how that might affect their children’s health. One dad wanted to know if his son might have to stay behind in school like he did when he grew up. A community leader is concerned about lead poisoning as his community is mostly made up of older homes. An elected official talked about households using well water and not knowing how often they check the water quality. Others have mentioned the lack of resources in their community including access to parks and safe places for children to play.

Our VideoVoice project is a chance for people to go “on the record” expressing those concerns and giving feedback to the Study. Our neighborhood ambassadors have been asking local parents, community leaders, healthcare providers and others to participate in interviews, and the reaction has been overwhelmingly positive. Over the next several weeks, we will be producing a number of community videos which reflect the attitudes of people in our community about the National Children's Study. We will be sharing those videos through here and other means. In the meantime, two of our neighborhood ambassadors share their experiences working to promote the Study in the Latino community:

What have you learned from your first interviews?

"Working with people, doing the interviews has been very good because I have come to find out, in the first case, that the same experiences people have had are the same most of us have had. We are not really as different as we may seem, and our concerns remain mostly the same. We all want the well-being of our children; we want the well-being of our community and ourselves."

How do you think people in your community will respond to the NCS?

New this week: Check out our picture slideshow on the left, and while you're there click the "Like" button to like us on Facebook!

Welcome to the NCS-GCSC VideoVoice Project!

For the past several months, teams from Northwestern University, University of Illinois at Chicago, and the University of Chicago have been working with community organizations to spread the word about the National Children’s Study (NCS) which is being conducted in Cook County as well as other counties throughout the US.

The NCS is the most comprehensive study about environmental factors that affect children’s health ever conducted in the U.S. Enrollment in the Study is still ongoing, and with continued community support, the NCS will be a success here locally.

We have some exciting news to share regarding our current outreach efforts in Cook County. We are starting a new VideoVoice project to find out what community members think about the NCS. Similar to Photovoice, VideoVoice is a community-based participatory research technique that:

• Elicits participation by those affected by an issue
• Builds realtionships with and among community members
• Catalyzes grassroots social action

The Greater Chicago Study Center has also recently invited local community members to become “neighborhood ambassadors” who will participate in our VideoVoice project and will continue promoting the Study throughout Cook County.

This Blog will be an opportunity to share our weekly activities in the community, including pictures and videos. You will also get to know our neighborhood ambassadors and their role in the National Children's Study. Feel free to comment below, we'd love to hear your thoughts and feeback! 

Here are our first videos with two of our neighborhood ambassadors: