AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
EDITH KIEFFER: I’m going to give you a little introduction. Can everybody hear me? Okay. Thanks, to what we’re going to do. You’ve gotten a clue here that we have a philosophy that we’re all learning from each other. We’re in the midst of experiences that we wish to share with you but we are very interested in what you’re doing and we feel like you’ll learn from each other just as much. We have two projects, Healthy Mothers on the Move and Just For You. We’re hoping that by the end of this session you will understand a little bit more, be able to describe and discuss the intervention aims of our projects, the hypothesis, and how we went about structuring and designing these interventions. We also hope that the processes that were used and a number of you have talked about working in the community or how do you engage partnerships?
We’ll be talking in various ways about how we went about doing that, both in the period of development as well as implementation of the projects. We do want to spend some time talking about recruitment and retention. Some of the challenges there will be unique to research potentially, but in many ways all of you in your programs probably face the issue of how do you get women to participate? What attracts women to come into a program and how, you know, and what kinds of things are barriers, challenges, as well as strategies for keeping people involved. We will spend time talking especially about process evaluation. We thought that those, those activities that help us understand to what extent are we doing what we said we were going to do. What barriers and challenges are there to doing this, and what lessons can we learn from the process of developing and implementing and evaluating the programs. And we hope to spend toward the end, a lot of time on that topic. The way we’re going to go about this is brief presentations.
Each of us, it’s kind of elaborate actually. I’ll be talking, then Karen will talk, they we’ll have a group discussion and we’re going to go back and forth on each of these sections. So we’ll see how we do in terms of time management. We have a lot to say and we have a lot to learn. A number of you talked about measurement of outcomes and I’m going to give a little pitch here. In my opinion, I started in the field of birth weight and infant mortality and I was doing this in the state of Hawaii where I noticed working in the Health Department that there were paradoxical patterns of risk and outcome and that in fact the women that should have been the highest risk for low birth weight, due to poverty and adequate prenatal care and a number of other factors, in fact, had the heaviest babies and visa versa. And I was really intrigued by that and being a geographer with my background in Medical Geography, I also was studying socioeconomic and social change in the Pacific Islands and learned that some of the same people that were facing these issues of extreme poverty but rapid social change were actually developing obesity and Type II diabetes at extremely rapid rates.
And I kind of put my two and two together there and looked at who was influenced by that in Hawaii and indeed they were the people having the heaviest babies despite the risk of low birth weight. And the same thing was true, this was Hawaiian and Samoan women, in particular, the same is actually true with many Latino Groups and Native American Groups in the U.S. mainland. So I sort of started to try to think about things a different way. And I would challenge you, both of our projects are not dealing directly with low birth weight. We’re dealing with other aspects of maternal health, which have to do with risk factors for obesity and Type II diabetes. And one of the things you may want to think about is we may not be finding certain outcomes, but we may be able to influence other outcomes that have to do with maternal health. And maybe it’s partly the way we framed the questions. So I’m just posing that as a challenge. Each of these conditions, most of you have probably heard by now about this kind of epidemic of obesity and Type II diabetes. It used to be something no one thought about and all of a sudden it’s been in the news quite a bit. Each of these conditions have severe health social and economic consequences and they’re intergenerational, they effect everybody from the individual to the community and society.
There’s particularly high disparities when it comes to African American and Latino women and I will say also Native American and Pacific Islander women of child bearing age. And increasingly there’s a high, there’s a rapid increase and prevalence among children and youth. Obesity and diabetes during pregnancy have outcomes as well. There’s an increase in birth weight that may not be normal birth weight. It usually isn’t. It’s accelerated fetal growth for the wrong reasons, pregnancy complications and subsequent risk for chronic disease especially diabetes in the mothers and their children. This is just a little data and then I think this will be the last practically data, there’s just a few slides. But this gives you a sense of the disparities. It’s not great among anyone, I mean, the obesity rate is quite high among everyone, but you can see that there are much greater risks among African American and Latino women compared to white non-Hispanic women. And then this is diabetes itself.
This is older data and in fact it’s probably much higher. And this is a combination of impaired glucose, which is on its way to diabetes as well as diabetes. And you can see that among Mexican American women, at a minimum, almost a third of women are effected during childbearing years, a younger period than you’d ordinarily think. The good news is that recent studies have shown that you can prevent Type II diabetes as well as several other conditions with relatively modest weigh reduction as well as moderate physical activity, we’re talking about the Surgeon General’s recommendation, maybe 30 minutes most days of the week of moderate physical activity and healthful dietary patterns. And both of us firmly believe, that’s why we’re here, that pregnancy in the postpartum period are outstanding opportunities and really unrecognized in many ways for reducing chronic risks and for promoting maternal and child health.
We’re going to talk a bit, both of us use in various ways, methods that could be called Community Based Participatory Research. This is a partnership approach to research. It’s now where you go in and study a community and leave, absolutely not. In fact, in my case and I got to know the people, the partners that I was working with over a period of five years before I ever did any research. I got to know them extremely well. I got to know their Boards of Directors and their clients, services and their leaders and just learned what the issues were. Many of these partnerships involve a combination of community-based organizations, health system of various types, and academic organizations as well as residents of the communities in various ways as equal partners in all phases of the research.
The concept is that partners all have expertise to share, and that they also have responsibility for the processes and the outcomes. And, in doing that and respecting that, you build sort of a sense of ownership among everybody for how the project turns out. And the key philosophy is capacity building. So in every case here it may start out that the University knows how to write Grants or knows how to analyze the data but we in many ways are trying to, and the community partners actually have a lot of capacities, many that University folks don’t tend to have, and that in every case we’re sharing our expertise and building strengths. And that a fundamental principle is that the knowledge we gain doesn’t leave the community, it actually leads, there’s sort of an obligation to develop working interventions and programs and policies that could improve community health and well being.
My project I’ll be talking about is called Healthy Mothers on the Move and I’m not going to try the Spanish part just because I’m going to, I’m nervous. But we are, this project again came out of five or more years of work before it started and we want to share some of the lessons learned. A bit of the background, as I mentioned pregnancy in the months following childbirth are outstanding opportunities for intervention, but they’re also a period of increased risk for developing over weight and obesity. There are usually changes in diet and activity patterns. There’s often considerable stress. It may be happy stress, but there’s all kinds of stressors. Depression is also more frequent. And excessive pregnancy weight gain and Karen’s going to get into this more, as well as postpartum weight retention are also frequent during these periods.
A little bit of data from Detroit and these really are the last two data slides. Part of that getting to know you was learning a bit about the characteristics of the people that we were going to be working with. And these are data from a large health system in Detroit that’s fed by a number of prenatal care clinics and we found indeed that over half of African American women gained excessive amounts of weight during pregnancy and more than a third of Latinos. I mentioned the opportunity. One of the reasons is because there’s frequent contact with healthcare providers. As all of you know, because of the way healthcare policy is designed in the United States, this is the only time that many women have the opportunity to have a healthcare provider and it’s a brief window, but there is relatively frequent contact compared to other times in life.
The focus is on the health of the mother and the baby during this period, and from the point of view of the mother and her family as well as the care provider. I wish there was more focus on the mother actually. Frequently, that doesn’t really happen. And then the need for social support and information is usually very strongly felt by women. We used a, I’m not going to get into all of this in incredible detail, but some of you asked how we went about this. Before we started the project we had an ongoing collaboration, a partnership called the Detroit Community Academic Urban Research Center . And we work in two communities of Detroit , the east side and the southwest Detroit . East side is predominantly African American. Southwest Detroit is a community that has a variety of ethnic groups, more diverse than any other community in Detroit , but it’s still highly segregated. And it’s home to the majority of Latinos in Detroit .
We have a community steering committee that’s made, it’s actually a steering committee made up of health systems, academic institutions as well as a number of community-based organizations from both communities. The City Health Department as well as the State Health Department are also represented. And from the very beginning, the steering committee directed every phase of the work. We quickly, what we basically did, is get a CDC grant that helped us collect in depth interview data from pregnant and postpartum women as well as people who they named as influencing their weight, physical activity and dietary beliefs and practices. Those interviews were analyzed by the steering committed. The content, the rapid analysis that Karen mentioned, we did this very rapidly, summarized at the end of interviews and the combination of key themes were presented to separate groups of focus groups of pregnant and postpartum women.
Again following those sessions, the results were brought together, summarized and presented back to the steering committee that figured out how to summarize the data for another group of policy and program heads. People much like yourself as well as directors of community organizations and policy leaders from the state, local, and community level. And we actually had those folks read the quotations from women as illustrations. It really got them into the mode of feeling how the women were expressing themselves about barriers as well as strategies for overcoming those barriers. And we asked the women in the focus groups to come up with strategies. What would work for you in terms of reducing barriers to physical activity, healthy eating, and appropriate weight gain and weight reduction. That all led to intervention planning and eventually to actually a state, a state Grant. CDC, no offense to the CDC person here, they gave us this grant with the promise that there would be an intervention Grant opportunity at the end and then they pulled it out at the very last minute and they said we can’t, we’re not going to be able to fund this.
So we wrote an NIH Grant and at the same time the state, which was on our steering committee said we’ll give you money to get started, which was just incredible. And another partnership that is part of this whole process, also helped lead this phase of the process, they were going to be there in the community. We knew they were going to be there in the community and we felt an obligation that there would be an ongoing process while we chased money to create the intervention. Briefly, these were some of the things that people said about barriers. They identified social barriers to healthy eating that included immense social isolation, different in the Latino and African American communities in form, but in impact the sense that people were trapped in their homes and they rarely got out was a barrier to healthy eating as well as exercise.
Language barriers on the part of Latinos in the community, there in Detroit in an area in which their own community has quite a few Latinos but it’s very spread out. I don’t know how many of you have been to Detroit . Most women feel trapped in their homes and they rarely get out. Lack of social support for desire to change, even when they may seek to change the way they’re eating, they often do not have the support of their family and friends. Conflicting demands on time, all of you can probably relate to that including childcare and other responsibilities. I’m going over this very rapidly. There’s lots more in this. Many women expressed a lack of exposure particularly African American women, young women who had not been, due to the way their work patterns and other, and lack of access to healthy food in the community, they actually hadn’t been exposed to the diversity of preparation methods that their mothers and grandmothers had. And they expressed the need for learning new ways of eating.
Food preferences and dislikes, we often think of things as environmental and social but people often said, we just don’t like that or we think we don’t like that and so you can’t make me eat that. And there was quite a bit about that. Poor access to healthy foods is huge and we realized early on that there’s a circular nature to healthy eating supply and demand. If the food isn’t there, you don’t learn to eat it and you don’t learn to like it. At the same time, if you don’t like it and you won’t buy it, store, owners won’t supply it. And so this is not a simple equation. And also very high cost relative to some other less healthy food as well as poor quality of produce, for example. If it’s there at all, it’s often shriveled and very poor quality, outdated. Exercise, some of the same social barriers I mentioned. Women from Mexico in particular had real background in exercise. They clearly saw the link between exercise and mood, exercise and health, but and they had to exercise quite often, walking primarily, in there home countries. But in Detroit they were very trapped in their homes and didn’t engage in that.
Childcare and transportation were additional barriers and lots of community environmental barriers. Very few if any programs for pregnant and postpartum women, poor access to poor quality facilities, and unsafe physical and social environment. Tremendous barriers of unsafe streets, poor lighting, large amounts of truck traffic that make it perilous to even cross the street, tremendous environmental barriers. And then lack of motivation. Some people saying I work hard all day. I’m not interested in getting up and moving after I’ve come home from work. And lack of knowledge and uncertainty about safety of exercise during pregnancy. We identified quite a few beliefs about what was safe and unsafe during pregnancy and I’m not going to get into all of that, but clearly there was a need for knowing more in order to go ahead and try to exercise. The bottom line was women recommended group programs as a way to overcome many of these barriers at the same time. That if you could provide a safe, trusted, community environment that women could get together.
There was tremendous interest in social support of each other. They could share, they could learn from each other and at the same time learn how to exercise safely and to make healthy recipes. All said, we’re willing to do this if you’ll also provide us with some information about having a healthy pregnancy, just about pregnancy. Many women were on their fifth child and they hadn’t had any pregnancy education. They said programs would have to be to low or no cost, have childcare and transportation and ideally be facilitated by women like them, who could understand what they go through on a day-to-day basis and at the same time who would have some of the expertise that they felt that they could trust. And it would be activity based, not like a lecture, not like school. I know I’m taking quite a bit of time Karen. I’m just going to whip through this quickly and then, this project that came out of this initially was a pilot and then we did get the NIH funding. And the goal was to develop and conduct and evaluate both the processes and the outcomes of a healthy lifestyle intervention designed to reduce factors for Type II diabetes.
The group was pregnant and postpartum women, African American and east side, or Latino from east side and southwest Detroit . We do have a randomized control trial. The reason that became acceptable to people was that the control group actually gets pregnancy education. The norm was none and the steering committee believed it was acceptable to have the group that didn’t get the healthy lifestyle intervention, at least get a high quality pregnancy education intervention. The healthy lifestyle group, they get social support as they suggested from each other as well as from trained community resident family, or women’s health advocates. And they get home visits and group education, which I’ll be talking about in a later part of this. We hypothesized that compared to the healthy pregnancy group, the healthy lifestyle group would have greater changes from baseline to the end of the pregnancy intervention and then again at the end of a postpartum intervention in eating, exercise, and weight gain, and then later weight reduction outcomes that again will be described later. And that these changes would be associated with significant changes in beliefs, attitudes, norms, and perceived control over your ability to change your behavior. And that they would also be associated with increase in perceived social support.
We are trying to change the proportion of women who eat healthfully. Fruits and vegetables and fiber increase and reduced fat and sugar and who exercise regularly at least at moderate levels. Secondarily, we’re not sure we’ll see this, but we are hoping to see an increase in the proportion of women who have appropriate levels of pregnancy weight gain and post partum weight retention, and we’d like to see improved metabolic profiles. We are drawing blood and we have measures of glucose, insulin, lipids, and a number of other factors. We also have a major aim about evaluating our processes. And that’s one of the four aims of the project is our process evaluation. If we hope to see this live on, we need to know what works and why and what doesn’t work and why. Briefly, I mentioned social support. We want to reduce physical and environmental barriers to adopting healthy lifestyles. We are running these activities in community organization locations, but the data is also collected in trusted community organizations. Transportation and childcare are provided for all activities.
And all of the design elements are based on the program recommendations that women and policy leaders recommended during that preliminary study. We also have some behavioral theory underlying this, but I would say the primary driver of the design is what people recommended. Women have to be 18 years of age and older, less than 20 weeks gestational age at recruitment and be African American or Latina, reside in one of the two communities and be able to participate for 11 weeks during pregnancy and six to eight weeks postpartum. We recruited from all the places that you work with as well as neighborhood organizations, flyers, and beauty parlors, laundry mats, and on vans that provide transportation to prenatal care services. We do group orientations and then we refer folks to data collection, which lasts about three weeks and we randomize the women to their group at the end of the last date of collection visit.
I think I’m going to skip this because I feel like I’m going on too long. Well, maybe I’ll just quickly say, we do three visits. Part of the reason for this is in order to participate we know women are going to have to come frequently and this is all, there are home visits but there are many group visits. And we are trying to show that this works. So this is not a service, that’s one of the main challenges here. So we actually want women who will not be able to participate in this, not to, we don’t want them surviving the data collection period is they’re not going to be able to do this. So we purposely scatter it over three weeks. We give a Healthy Mom’s questionnaire, which measures a whole range of things that you can see up here under visit one. We also hand out a pedometer at the first visit and we tape it shut and women record their steps for one week. And then at the second visit they turn their pedometer in and we open it and we also do a nutrition assessment and physical activity assessments. And then at visit three, we do body measurements, a variety of body measurements. We take blood pressure and we draw the blood at the last visit. And then get randomized into their group. So Karen, I am finally ready here.