AMCHP 2005 ANNUAL CONFERENCE
DELIVERING RESULTS, IMPROVING PREGNANCY & BIRTH
February 19-23, 2005
EDITH KIEFFER: So, why don’t we go ahead and, just jump back in. What we thought we’d do is, talk till about - just talk together ‘till, say 10:30 - 10:35 at the outside, and just kind of your comments and thoughts - oops this is somebody’s chair might pick that up - your comments and thoughts so far and then we are going to put our recruitment and retention in our process evaluation slides. Sort of do them together and then allow ourselves to have another twenty, twenty-five minutes at the end so we can really pull the lessons back out. So, what are your kind of - I know I had a couple conversations at the break of what are your thoughts so far, including actually, we’re from two different universities so we have never done this before, going back and forth. So, any comments you just had, are your themes that your hearing, are you getting what you wanted out of the work shops? So, can I call you, I know you had a really great comment to make and we wanted to address it more.
KAREN PETERSON: The programs that are being described are really great and they sound really strong and very sound and the reasons behind it as well, you know, etcetera. I was really interested and excited about your angle about the community and the community based participatory approach and kind of the very powerful kind of community change between ongoing processes and research and how that can be built in.
EDITH KIEFFER: Okay.
KAREN PETERSON: And I would love to hear more about those aspects of the program and that stuff.
EDITH KIEFFER: Yeah, okay.
KAREN PETERSON: I mean it’s not coming through quite as (inaudible).
EDITH KIEFFER: Okay. Just so that we don’t sort of do one, are there others, that have a similar theme and then we can expand on all of it.
KAREN PETERSON: It may not be very similar but I guess I am curious about so what are their plans for ongoing expenses—
EDITH KIEFFER: Oh, that’s—
KAREN PETERSON: --and what happens after you know. I mean that’s always something that
(Cross Talk)
FACILITATOR 2: That’s a piece. That’s a piece. Yeah.
EDITH KIEFFER: It’s a piece. It is the next section. I think that’s a little more the next section but that is good to know.
KAREN PETERSON: I think to piggy back from the community participation question, things that you found out like, some woman weren’t entering pregnancy, entering prepared, didn’t even prepare until 27 weeks or something like that. What can you give back to the community about what you found out by being so close to these women, is there anything? And they wanted they had all of these questions about prenatal care and what was happening with their pregnancy and what can we give back to those who were providing the prenatal care about why aren’t they talking about this? So—
EDITH KIEFFER: Right.
KAREN PETERSON: I would like to see those ties back to the community and wondered if you did that?
EDITH KIEFFER: Okay
FACILITATOR 2: So, if you - okay-—
(Cross Talk)
KAREN PETERSON: I was wondering too if there was any difference, you said some of the mothers came to the group meeting—
EDITH KIEFFER: Yep.
KAREN PETERSON: --But was it different with a grouping in Michigan where it started since pregnancy? Is there any difference in the starting—
EDITH KIEFFER: Oh, interesting .
KAREN PETERSON: --point literally or–
(Cross Talk)
EDITH KIEFFER: Yeah, yeah, that’s good, I mean that question, actually I thought as we were talking that we need to get our data together and think about—-
KAREN PETERSON: Can I ask a question really quick?
EDITH KIEFFER: Yeah, go ahead.
KAREN PETERSON: The question is, is there any, she was saying that in Boston —
EDITH KIEFFER: -Um-hum.
KAREN PETERSON: --that they had to do their groupings special (inaudible).
FACILITATOR 2: Right.
EDITH KIEFFER: Yeah.
KAREN PETERSON: And I was asking if there was any difference in the start of the pregnancy and if they say—
EDITH KIEFFER: That’s a good question.
KAREN PETERSON: --later or if it’s a difference from start of pregnancy or start of postpartum.
EDITH KIEFFER: Right, which links back to social support. It will be very interesting when we actually look at our data to
see - we won’t exactly be able to compare but to some extend the forging of a bond among woman and their desire to see each other again does potentially help lead to them coming back. One more and than I think I want to go back to the community, or two more. Just—
KAREN PETERSON: Well, in terms of working women.
EDITH KIEFFER: Yeah.
KAREN PETERSON: Was there a difference in recruitment or retentions if the women were working at some of these jobs like, Wal-Mart jobs—
EDITH KIEFFER: Um-hum.
KAREN PETERSON: --or hotel maids or whatever? And were they less likely to be working if they were pregnant and after—-
EDITH KIEFFER: Yeah.
KAREN PETERSON: --they had postpartum.
EDITH KIEFFER: During the postpartum?
KAREN PETERSON: Yeah.
EDITH KIEFFER: Okay.
KAREN PETERSON: I was just wanting to you know, change it too, see how you were able to maintain (inaudible)—
EDITH KIEFFER: Right. Okay, what –
KAREN PETERSON: I think we have what—
FACILITATOR 2: Say that again.
(Cross Talk)
EDITH KIEFFER: Retention, maintaining, yeah right.
KAREN PETERSON: --see if they maintain the progress in the process. We have managed to have support groups and so forth. They come and they start and it’s like maybe I should stay. It’s something else –
EDITH KIEFFER: Yeah. So that –
KAREN PETERSON: --and if we have the money to do this, where will, how do we get them there?
EDITH KIEFFER: Okay, and that’s mostly going to be the next section.
KAREN PETERSON: Yeah, that’s what I wondered, so.
EDITH KIEFFER: So—
FACILITATOR 2: So, if we put the retentions in the—-
EDITH KIEFFER: --I am going to put those questions—
FACILITATOR 2: --to give back to the community and the retention right? So, be sure to remind us—
EDITH KIEFFER: Right.
FACILITATOR 2: --to come back to that.
EDITH KIEFFER: I have written a note down.
KAREN PETERSON: (Inaudible) you were - why didn’t you work with the healthy start for the simple home visiting program—
EDITH KIEFFER: Um-hum.
KAREN PETERSON: because there is home visiting program in healthy start that—
FACILITATOR 2: Yep.
KAREN PETERSON: --has to continue. Seeing this, this pregnant woman after, for two years after they get, the babies that are born.
EDITH KIEFFER: Okay.
KAREN PETERSON: So, they need to do some things and I was thinking--
(Cross Talk)
EDITH KIEFFER: That’s a good question.
KAREN PETERSON: --in Puerto Rico how-
-
EDITH KIEFFER: Yeah.
FACILITATOR 2: Yep, yep.
KAREN PETERSON: --maybe through the healthy start home visiting program will be—
FACILITATOR 2: That’s a great idea.
EDITH KIEFFER: I was—-
FACILITATOR 2: Somebody, oh, somebody joined us, you’re from? Do you want to introduce yourself to? We all introduced ourselves so we won’t go back through but—
EDITH KIEFFER: We might want to go back.
FACILITATOR 2: --I think this is actually part of Gloria’s question because, so where do you work?
EDITH KIEFFER: But then I want to go back.
(Cross Talk)
KAREN PETERSON: (inaudible) projects of the District of Columbia , two healthy starts projects, actually we have three.
Edith Kieffer: That’s great.
KAREN PETERSON: We have two departments of health which I am responsible for and one at the Mary Center .
FACILITATOR 2: Okay
KAREN PETERSON: In upper, in Northwest DC .
FACILITATOR 2: Yeah.
EDITH KIEFFER: Okay.
KAREN PETERSON: And we were one of the fifteen original healthy start that started (inaudible)—
FACILITATOR 2: Oh, my gosh, that’s fantastic.
KAREN PETERSON: Yes, so we’ve been at it since 1991.
FACILITATOR 2: Oh, my gosh.
EDITH KIEFFER: Okay. Thank You. Well, the way I’ve seen these questions, some of these, we need to address to the next section and we will come back to them. The question about the community participation, it sounded like there was quite a bit of interest in discussing that. Like, how did we do that and maybe a link might comment also to recruitment issues as to opposed to retention issues because that’s been one of the main challenges and one of the ways in which community participation has mattered so much, does that sound okay?
FACILITATOR 2: Go ahead.
EDITH KIEFFER: I mentioned at the early parts that we started with an ongoing partnership. So, these were - we already had established trusting relationships among the partners. So, this included community organizations as well as the health, the city and the state health department and the university and we had had a history of working together, and I kind of, you know, you have to start somewhere. So, I would say that the first time that I started working with my main community partner initially was a conference of health center that has a community board and is very community focused, came out of the Latino community in the early ‘70’s as a free clinic and has built from there. That partnership was extremely important and when I first started working with that center they sort of gave me a test. In other words, they sort of said we’ll work on this little project together and we’ll see whether we can trust you, and when we have problems are you there for us, which has very much been the case.
I still get phone calls and emails from him. I’ve got this, you know, policy guy breathing down my neck and I need to figure out how this data could be presented. He calls me, you know. At the same time I call him with certain problems, this is the center director. So, I would say for any of you who are starting with relationships it’s a matter of building trust and that trust is even more slowly built with community organizations who may have traditional mistrust of academic institutions in particular, but sitting down together being on the steering committee and working together to solve problems is one of the ways you build trust. As is giving time that you don’t have to help solve an organizations problems that they’re facing on a day to day basis and that’s one of my number one lessons learned I guess, is I’m really busy and I may feel like I don’t have time for this but it may be the most important thing I do, is to do something that they need. In the case of this project, our first challenge was the failure of the grant opportunity that happened.
So, everybody in the steering committee said how can we start this some other way, and the state came in and sort of bailed us out, but before that we were thinking about ways that we could even just get started at a much smaller scale. And I’m going, I don’t want to take up the whole conversation and maybe let you guys ask me questions about that but these are examples of building partnership and building trust. Maybe another example would be instead of having the data, like when we did our interviews with pregnant woman, one of the things we did was we recruited interviewers from the community organizations. They identified people to do the interviewing and then we planned training sessions together, so we actually did the training of the interviewers together, and then when we were having problems with interviewers not showing up to do the interviews, it became a shared responsibility. You remember I mentioned those different sort of principles, well because we were jointly involved in planning the strategy and they identified the interviewers, they also helped us solve some of the problems with, why aren't they showing up, and maybe we should cut our losses with this person and find another person to train, but they felt vested in the issue. These are examples.
FACILITATOR 2: So, I'm reflecting too, like in response to your question and there’s a number of how do we give back and it's all a part of that cycle this, you know, originally we were chatting upstairs and I thought, gee, I said gee, our project, I think, was more - I think a lot of universities really lay it out on the table as we do something called community based research, which means if you can get an organization to let you do the research in the hall, that's dubbed as participatory research and what Edie's describing is, I would even call it participatory, but even sometimes we make another distinction that I feel a little better about ethically. It's called a partnership model so it’s, ‘cause a true participatory research, would actually, the question would rise from the community. Now, I realize I was under -so I'll throw that out. It's the (inaudible) partnership research, where you can build a venture together where you go back and forth and I heard a really strong - because that coalition was built then a number of people in the room are experts at coalitions. That's the thing that can carry and sustain through all the troubles.
But I realize I was thinking about our life trajectory and I kind of undersold our project because they came in at a later point in the trajectory and some of the slides that got taken, in fact, one I skipped over. Bobby, who is one of the people in our co-investigators, she's a physician at Brookside Community Health Center where I worked as a WIC nutritionist - she was in the next office over. She lives in the community and she's always worked there for like thirty years. The predecessor to our project and the reason we had the question about what about postpartum health, did come from the community, but it came from a really interesting, kind of troubling for us, source, which was in the late '80s.
I was working at Mass Department of Public Health, and the infant mortality rate in Boston, in the neighborhoods that were about two miles from the major medical centers was three times - it was, like, eighteen, I think - it was three times that the state average, a, horrifying, b, well you know, it was just all the adjectives we could bring to bare, very dramatic and the community really rose up in outrage and said this is just untenable, and finally the big, major medical centers that were about two or three miles away and I think a lot of us, at least in urban areas, I’m not clear how you do it with a rural setting and other settings, the organizations finally had to sort of group together, the big hospitals, and do some efforts, which actually involved healthy start in terms of reducing infant mortality, so there was progress made on that with some concerted effort, and about the time the predecessor of this got study started, which was five, six, seven years after that, the people in the health centers were saying, to Bobbie, actually, because she worked with them, look, we've got the infant mortality rate under control now, What about these women, and this was in a time when it was almost impossible to even get an article published on postpartum women's health because everyone was so baby centered.
They said we think we're seeing problems with depression, we think we're seeing other kinds of problems and it's different for women in different racial ethnic groups. So, sometimes I do this talk as a class. We bring in all the focus group and qualitative data that actually showed that depression is actually a really significant issue. So, in that sense, I guess we have a seed of being - but what are your reflections about that? What are you hearing? Is this participatory? Is it partnership or is it just a couple of universities thinking they were doing that because it was cited in the community?
EDITH KIEFFER: And your own experiences?
KAREN PETERSON: (Inaudible) about potential of research, and so challenging in terms of funding, and(inaudible) where, you know, it gets to be such a challenge (inaudible) but, that I think really sharing ownership with the community can bring to light very different issues than what potentially (inaudible) going in - in fact there isn't a lot of room in individual women minds or community (inaudible)or political rule to address our outside interests. Until those priorities are addressed or unless they're folded in and how can we do that as people who are, you know, trying to get the money to support this very under funded and understaffed ways?
EDITH KIEFFER: But still make sure that community receives back, is that what you're saying? I have a thought on it, but are there others here who have experience with that that would like to contribute their thoughts?
KAREN PETERSON: We just started a project a little less than two weeks ago.
EDITH KIEFFER: And you're in New York City ?
KAREN PETERSON: It was just what you said. The city councilman for the District of Central Harlem really was very distraught over the idea that the United States had higher infant mortality than Cuba, and so he approached the department because it's also (inaudible) and making sure that the community along with other communities get their fair share of the scarce dollars for New York City. They take issues they feel are very potent and, you know, infant mortality of course is one of those, and so he approached us and said, what are you people going to about this, and so---
[Laughter]
EDITH KIEFFER: You people, we people, we people.
[Cross Talk]
KAREN PETERSON: And we said, what do you want us to do about it, you know, what did you have in mind, and so we first met with him and started, you know, there's a lot of mistrust, because government is often portrayed in ways by, you know, politicians that are less than flattering and so, you know, certainly we had some anxiety about going into such a project, but at the same time, there were other providers that were saying, what are you people going to do about this, and so we had them coming at us from both ends to say, you know, do something, fix this problem, and we thought about it long and hard and said, that’s nice, but have you realized that four times more women are dying? What about the mothers? What about that part of the equation? If you lose a mother, you lose a parent, you lose a wife, a mother, to other children it's a big deal, and, you know, our first meetings had to do with us really understanding what the definitions were. The providers, when you say infant mortality, they think of (inaudible) and, you know, everything happens in life before twenty-eight days which, of course, is not infant mortality alone and when you talk to the community based (inaudible) they're thinking that's anybody up to two or three---
[Cross Talk]
EDITH KIEFFER: Yeah, that’s great.
UNIDENTIFIED SPEAKER: Somebody who walks and talks and, you know, goes to Head Start, and so, you know, first we needed to really spend time making sure we share the same, you know, definitions and then the same commitment. We had a couple of meetings to say, are you on this, and the ground rules were set. The ground rules were about nobody has any money so (laughter) what can you take out of what we all have and spread it around to the good of the women that we all collectively serve, and validated the fact that, just what you said on the slides, you know, that everybody brings something to the table. We have technical expertise, we've got tons of researchers sitting around in offices picking lint out of their belly button,(laughter) that's our favorite phrase.
EDITH KIEFFER: I love that. I love it. It's good
.
KAREN PETERSON: We can't take it. Those of us who looked in the faces of people and felt their pain just, you know, no matter how long I stay in public health, I don't think I could ever get away from the feelings of, you know, being in a room and having someone dialogue directly and we said, yeah, that's nice, but what are you going to do with it, and so we had all these, what are you going kinds of things happening all at the same time and, you know, what we decided to do was to make it participatory because again, that's a new thing for me. (Inaudible) are participatory. There is no way around it.
[Laughter]
It is a life. It is everything because everyone depends on everybody else to take care of this person who can't talk. So, in my mind, I was very clear on what I thought participatory, you know, collaborative projects were, and you know, others less so, because they had had a very different experience and, you know, there's a lot of in trepidation even within the department in terms of the people will never accept it and they'll scream and they'll yell, and we said well, it matters how you treat people whether they scream or yell, and you know, we're coming together on things, so it's worked. I don't know that you can be totally participatory until you have built all of the energy and the dynamics and trust, and now they trust us. So, now we have as of three weeks ago, the Bronx . This particular project is in Harlem , and Bronx , which has a lot more deliveries than Harlem , is saying, what are you going to do about this?”
[Laughter]
EDITH KIEFFER: That's fantastic, that’s good.
KAREN PETERSON: Well, it's good and it's bad. Be careful what you wish for.
[Cross Talk]
EDITH KIEFFER: Yeah, that’s true.
UNIDENTIFIED SPEAKER: You know, and it’s, but it is good and they're like, aren't you coming to our meeting and here's our list (inaudible) and we want to sign you up and we're having this meeting on this day because we want to talk about - because New York's governor is going to - they're saying is going to cut back Medicaid a billion dollars to New York City this year, and we still have those hundred and twenty-five thousand deliveries and babies to take care of—
EDITH KIEFFER: [interposing] Deliveries sure. Absolutely.
EDITH KIEFFER: --So people are really pretty impassioned, they feel that that's the largest area of Medicaid utilization in New York City is the Bronx, and so they don't want to see the money go away, and the city council has been gracious to us every year, giving us the money, you know, gracious in one sense that, you know they give us the money, but then we have to parcel it out to all the other agencies to utilize, which is, you know, we have three people that do nothing but contracts all day, you know, evaluating, are they successful, are they not, but not successful in the way we'd like to see it, I mean I think the next level would be to be able to say, this is an effective program, not that this program saw twenty mothers and thirty babies and, you know, that's really not the kind of evaluation that we like to see, and you know, we did bring in a professor who gave the stakeholders a conference on evaluation and the importance of it as we go for it together trying to get these projects done. Because we usually fund individual organizations, now we're funding individual projects, and so the mental hygiene or mental health group is looking at perinatal depression, which includes the CDO's, the (inaudible) center includes other people. It's more labor intense for us because we have to keep the ball in the air, and we have to keep them, you know, we’ve had a few people fight and say, they don't like me and I don't like, you know, the academics versus the community based people.
EDITH KIEFFER: [interposing] Sounds familiar.
[Laughter]
KAREN PETERSON: So, that's been special in trying to work it out and, you know, get people on the same page. It's not easy, but we don't all have to be on the same page. So, the academics they want to get the grant from Legacy or whatever, fine, you know, the community based people, they want to have a writer’s workshop for moms. I said, but how about some health messages, you know, around smoking, because that's what environmental, that's one of the things that's on (inaudible). So we're just kind of working it out. I mean, I think it's going take us, we went into this thinking it was going to be three to four years before we had built some capacity, you know. Now, I think it's going to be twenty years.
EDITH KIEFFER: Well, that’s cause each thing grows on, I know we probably (inaudible) switch (inaudible).
KAREN PETERSON: Just real quickly, I think when you’re looking at partnership, you're really gotta make sure that the population in which you are serving is actively involved.
EDITH KIEFFER: I agree.
KAREN PETERSON: And we've learned this over the years with our Native Alaskan tribes, with having basically, 126 tribes and 7 different types of Alaskan Natives, they have a very different philosophy each one of them, and their leadership models are very different, and so since our health disparity is so great around infant mortality and probably most significant around post prenatal mortality, going into the villages and pulling the elders together and having them describe what they think the mission is, because we found with infant mortality, there is sort of a general acceptance that you're going to lose some babies, and so they didn't find that to be an issue, because historically that's been accepted. So, although it's important to us, it wasn't important to them. It was more important to them around post neonatal mortality. We're fortunate that a lot of our interventions developing the air flight system, going in and teaching stabilization techniques and now the development (inaudible) stable program and going into our original health sites to teach a very challenged and clinical staff that turns over about every six months, has made quite an impact on the infant mortality rate. But what their, what the native elders issue is post neonatal, because those babies have come back to the community, they see them and then all of a sudden, they die, and so then that was closer to them.
EDITH KIEFFER: Right.
KAREN PETERSON: So I think to me when I think of partnership I think of getting in that community and really—
EDITH KIEFFER: [interposing] really listening.
KAREN PETERSON: --doing that rapid assessment that you talked about to find out is the problem that they think is the problem the same as yours?
EDITH KIEFFER: Right.
KAREN PETERSON: Especially when they’re going in a very different direction—
EDITH KIEFFER: [interposing] absolutely.
KAREN PETERSON: --and then have total meltdown around what your goals are—
EDITH KIEFFER: [interposing] what you’re going to do.
KAREN PETERSON: --and then perceive it to be non-cooperation and non-interest.
EDITH KIEFFER: Yeah. I think that’s absolutely right and that’s one of the nice things about having the people who quote go in to talk being the people themselves because it’s hard not to filter, it’s hard for people not to filter towards what they want to hear or what they believe and its really important to learn to listen and to observe, and I mean, there is a lot we could talk about and I know need to go onto the next thing. I just wanted to say that this trust building, I think having everybody from their perspective see that there’s a reason why other people feel the way they do in the partnership and that they - to share experiences over time people start to see what you need. In other words, of you’re on this committee and you feel like your needs and no ones listening to you, it’s going to turn everybody off. But if eventually there is a respect for the experiences of each person on that committee and a lot of what you what you said built on that, and a lack of fear of taking on some conflict that’s another key because sometimes there are conflicting needs, conflicting interests, in our case we had a brand new - our project was the first project that brought together Latinos and African American organizations in the same project. There were tensions, if we had let that just kind of sit there we would not get anywhere. We had to let it erupt a few times and then try to figure out how we were all going to move forward. So, I just wanted to point out there’s lots of elements to this. I am going to try to (inaudible) so go ahead, Yeah, were going to blast through our slides—
FACILITATOR 2: [interposing] what were going to do is—
EDITH KIEFFER: --and then were going to come back and we’ve got five--three or four kind of pending questions that we hope we can follow up on the recruitment retention.
FACILITATOR 2: Giving back to the community so—
EDITH KIEFFER: [interposing] and some of that’s going to come out in the next few slides and in the process evaluation and knowing your questions I hope we can directly address that. Wow.
KAREN PETERSON: --I think we can (inaudible) but if we both do, like, 10, 12, and then—
EDITH KIEFFER: Yeah. Okay. So I mentioned recruitment briefly, I am going to before I actually get into retention I’m going to say that our project was truly challenged at the recruitment phase. I mentioned by peoples - especially eastside African American women not entering care until very late. The steering committee made up of community organizations, community residence and prenatal care providers spent some time discussing this because the providers were having the same problems. Community organization leaders had some of the potential solutions and as we’ve gone along, we’ve gotten better at identifying women to participate in non-traditional locations through word of mouth and other mechanisms that at first were not even on the table for discussion. So, that’s just an example of problem solving.
We do have a challenge and it is a challenge for the providers, for everyone there. There’s a lot of reasons why people don’t come in and they think, they challenge all providers as I am sure you all know as well as somebody trying to do a research project. On retention, you packets have a number of the materials we use. Transportation and childcare has been mentioned a lot, it’s doesn’t, it’s not the only answer but if you don’t do it, people just aren’t going to be able to participate. Most of the women that are pregnant also have other kids. So, it’s not like were dealing with people in our case there not first time moms in many cases. With childcare we’ve had trusted childcare providers in trusted community locations and that’s made a huge difference. With transportation, we have huge problems with our transportation services and they’re not - they are linked to the problems of the infrastructure more broadly in Detroit so I won’t go on about that, but we’ve had spend a lot of energy within our steering committee trying to come up with reliable transportation providers.
Lots of incentive, people, the women themselves said it would be really important to have fun stuff at each meeting and that they should be woman centered not just baby centered. So, we give lots of little packages, little gift bags and some of the items are related to the intervention. For example, pedometers are one of our incentives and so they get - they use them during data collection, separate pedometers but during the actual intervention they get a pedometer and they use it for self-monitoring but they also - it’s fun for them to have it. They said they love having one. But we also give body lotions and the types of lotions that women in the community said they want to have. So, cocoa butter was really popular in southwest Detroit because it’s believed to affect stretch marks. So we give those out and then we give money at each of the data collection points and we recognize that it takes a lot of time and in the case of blood, that’s a sensitive subject and so we give them enough money and it was a key discussion item in the steering committee. When is it coercive? When are you giving so much money to people in a low income community that you’re actually bribing them to participate? It’s a real sensitive question and yet at the same time respect that they’re spending time and that you - they deserve to get something important for this important data.
We make weekly phone calls - I can’t emphasize more the importance of contact because people change their addresses frequently, they move, their phones get disconnected. The women also exchange phone numbers with each other and sometimes it’s other women who are able to keep track of another woman who seems lost but they know where they are. So, that’s a social support mechanism but it’s also proved important for retention. We send birthday cards, we send missed you cards, when they - so some of it’s staff to participant, they call them. We send congratulations on the birth of their baby cards and then ask for some information back that will help us keep in touch with them. And then in the case of participants to staff - again we ask them to let us know when they’ve given birth as well as when they’ve changed their addresses or changed their contact information.
We also keep track of reasons for withdrawal if somebody isn’t showing up, we call and try to find out is it just a barrier that we can help solve or is it that they actually aren’t participating anymore and then we try to find out why. Official scheduling of appointments has become - has been a real problem with data collection and it’s turned some women off. Real difficulties with our data collectors and we find that for our interventions it’s not hard to get a home visit scheduled but for the data collection it’s hard. So, your packet - I’m going to just whip through this has copies of our recruitment flyer that we post everywhere and we have then also in postcard form. We also send out a monthly newsletter that has - again has messages that came up as questions from women who are participating as well as things like exercise tips and recipes, and a number of other things. And everybody gets this whether they’re in the pregnancy group or the lifestyle group. So these are just examples.
They’re in English and Spanish, we had a lot of -our population is predominantly Mexican ancestry. There are Puerto Rican women, there are Dominican women not as many and there were lots of discussions about appropriate wording and things like that. That’s a constant problem, and then these are an example of the birth announcements. Did you want me to go directly into process? I think we said we would do that. I’m going to skip over this quickly - the actual instruments because in your packets you have some of the instruments. These are just examples. So, for every group meeting whether it’s the control group or the healthy lifestyle group, we ask the participants for their feedback on how the session went. And these are just a couple of examples of questions. We also ask the group leader, the woman’s health advocate in the case of our healthy lifestyles group, our healthy pregnancy group is taught by a staff person from one of our community organizations that does home visiting sometimes and does perinatal care work.
They provide the control group sessions. So we ask the facilitator, were you able to cover all the material, what didn’t go right? What did go right? Which areas were you able to cover and which ones weren’t and why? We also have an independent observer who goes to every meeting and they check off the same things as the facilitators do. So, they’re looking for whether content was covered as well as how it was covered or not. That’s done at every meeting. We also do at the end of the intervention, we do focus groups with the women themselves and we do a separate focus group with the group leaders or the women’s health advocates. We also interview the host sites which are all community organizations about things that they think impaired the ability to - what about their role and how they felt about it? What kinds of things would make it easier to deliver this from their perspectives?
This will be really important when it comes to later sustaining this activity. And then we learned a few things. One thing for us is that group programs can work. In our case the group - this is during pregnancy was very important. In fact it was just getting people to meeting one. Because once they got there, even if they had tremendous social issues, which many of the women do, they were getting a lot of support from the advocate but also from each other, so they look forward to coming. There are always people who can’t come because of doctor’s appointments other appointments, scheduling conflicts that is an issue, but it was very important as was the trust that where they were going was safe for them. Many, many, many of the women in the Latino group are undocumented.
They had to believe that the place they were going was a trusted place and we recruit primarily in a site that’s very trusted for years and years as a place that’s not going to turn them in, and so because of where it is, their willing to be recruited to this project. Again the pregnancy education is so rare that it becomes something that people really want. I think I’m going to skip over some of this but just to say that we learned that we had too much, we still do. We still have too much packed in every meeting and so it’s hard. It’s a challenge to get through the material and at the same time, just like today, allow for adequate discussion and sharing. We learned that it’s really important to integrate goal setting so from the pilot we actually started doing something like what Karen’s project does, which is fill out goals, develop goals during the home visits that then people work on and share during their sessions. And increase the number of activities that are actually interactive, hands-on, and fun as opposed to just talking. We absolutely had to address preexisting beliefs that were identified by women or we weren’t going to get anywhere, and not put people down at all for believing them but share information about another way to do things.
Okay. Let’s see if there was anything else. There - oh, just a bit about training and I’m sure all of you must deal with this. We are talking about community resident women, boundary issues and knowing when to stop is a huge problem we have not solved yet. Women are not telling us they’re taking women home, they’re driving them around, they’re calling, they’re going to their baby showers and they have truly formed a bond and it’s very hard for them to set the boundaries around when to stop and how to end, very big issues. So, were having to build in more training in that area. Not sure whether were going to succeed and then definitely we already had created some resource directories but obviously women’s primary issues in many cases is not eating less-more fruits and vegetables it’s, the heats off or my husbands beating me or any number of issues, the police came and took away my partner during the night.
Those are huge issues, so in every case our staff is trained to not deal with the issue, ‘cause their not trained for that, but know where to refer. And this is a quote that came from our original work with women in the community, which kind of tells it all in terms of how to go about this. We’re not doing for them we’re providing them with resources and mentoring, but not doing for them. So, that’s about all they have to say and then these are some of the people, community partners, lots of people. It cost a lot of money to do this and I will switch it over to you.
Karen Peterson: (Inaudible) when are the meetings, during the day or (inaudible)?
EDITH KIEFFER: Oh, good question. Yeah. During the - for the Latino women they said, please do it during the day, from 10 to 12 in the morning is prime time, their kids re off to school. One huge difference that we learned about early on was that the Latino women are not working outside the home almost at all. There is a very traditional value to being home and so their - the only time we can do it is during the day. It was completely the opposite for the African American women they are often required to work as a part of the welfare requirements. They’re often not home until at least late in pregnancy. On the other hand, we found that just scheduling in the evening, which we did at first, presented tremendous challenges for other reasons. And we ended up with a model where we switched back to the day and that was the steering committee had to grapple with that issue. So, some women can’t participate no matter what you do. It’s worked better for Latino women because they’re there.
KAREN PETERSON: Do you do any Saturdays (inaudible)?
EDITH KIEFFER: We don’t, and in some ways it would better, in some ways it would be worse ‘cause childcare issues are huge and you have everybody. Also, in the Latino community, the women are expected to be home. We can talk about more of that in the group.
KAREN PETERSON: I have an idea. Tell me what you—
EDITH KIEFFER: Yeah.
KAREN PETERSON: (Inaudible) the Latino (inaudible).
EDITH KIEFFER: Yeah, yeah.
KAREN PETERSON: (Inaudible).
EDITH KIEFFER: Do you mean within Latino women?
KAREN PETERSON: Um-hum.
EDITH KIEFFER: Yeah, well, first of all we developed it, so the only women participating for now in the Latina group are Spanish-speaking women. That doesn’t totally solve it but we don’t have English - we don’t do the Latino curriculum in English. It’s only done in Spanish.
KAREN PETERSON: (Inaudible).
EDITH KIEFFER: And then within the group, we don’t have a lot of diversity. Probably 90% of the women are Mexican and there are still diversity issues. A lot of it has to do with the very first meeting, one of the things we do is talk about respect for each other’s differences and differences in language, differences in words and we actually set some ground rules for communication during the first meeting. We don’t have all the answers. Some of the women - but in our community, the women who are most likely to, say Puerto Rican women in Detroit, are more likely to be English speakers. And we’re going to face that for the first time right now because we’ve decided to create a mixed ethnic group English language class that will have African-American and Latino women from both communities. And I’ll let you know, we don’t know what’s going to happen yet.
[Cross Talk]
KAREN PETERSON: (Inaudible).
EDITH KIEFFER: Yeah.
KAREN PETERSON: And also, I’m working on Friday (inaudible).
EDITH KIEFFER: Right.
KAREN PETERSON: So that’s a big, big, big challenge, you know because (inaudible).
EDITH KIEFFER: It is, it’s a tremendous challenge and our advocate staff is, two of the women are Puerto Rican and three of the women are Mexican and they have to talk together about how to, some of it is using both words, being able to say, Okay, this is another way to say this, and there’s no right or wrong.
FACILITATOR 2: This was also for us, thinking about working with the organization. So, in the partnership model, I think your finger right on something and I’ve kind of forgotten to mention it in the intervention. It’s building on what Evie’s saying. So, in the Boston and sort of New York City area, I think the women are coming more from the DR and the PR, yeah, and the Dominican Republic or Puerto Rico and very few from Central America, occasionally people from Colombia and from South America.
EDITH KIEFFER: Wow.
FACILITATOR 2: And when we develop the materials, we actually translated and back translated and, you know, we had a student from Puerto Rico doing the translation.
EDITH KIEFFER: Yeah.
FACILITATOR 2: But when the materials went to the health mentors, they hit the roof because there weren’t a lot—
EDITH KIEFFER: [interposing] t hat’s what happened.
FACILITATOR 2: --but there were a few words that were coming from a traditional Spanish or traditional something and they said, they are not going to compute with Puerto Rican women, and I’ve only worked in Boston area or in Mexico and I know there are certain words you would never want to say in the other—
EDITH KIEFFER: Right.
FACILITATOR 2: --(inaudible) they would be embarrassing. So, we actually, I would say one of the key things here that would rest again on the long-standing partnerships in listening is it was very simple, just literally any time that we developed anything, a handout, a anything, it went first to the F net workers, who themselves, and this is Edie’s theme as well—
EDITH KIEFFER: Right.
FACILITATOR 2: --I hadn’t realized it. One Cecilia, our Cecelia was - your Cecelia was virtual, right?
EDITH KIEFFER: Yeah.
FACILITATOR 2: Our Cecelia was real and she—
Edith KIEFFER: [interposing] w ell, actually she was a real person but she transcending eventually, she became the name we used for everybody.
FACILITATOR 2: Oh, I like this. So we have to keep the two Cecilia’s together. Our Cecilia was from Colombia and then all our other three women, Antoine, Ilene and Altagrasia, they were all from Puerto Rico , I think one was from Dominican Republic . So, between them they had to come up with a similar thing where certain words that could be troublesome. You know, we probably should move - can we move to - we’ll just do the last slides, although was there a burning question here? Let me do those, just so we don’t cut you off.
EDITH KIEFFER: I should also say, the curriculum is a guide for the advocates for the most part and one the ways they make it real is when they’re talking, they may use a number of terms and be open for discussion, it didn’t start out that way, we had to learn.
FACILITATOR 2: Oh, that’s also a very good point. I shouldn’t be rushing on the slides, is ours is also a script, so it’s used as a script and you want it there for the fidelity and sort of an even intervention. But it was very, very much a script that people did not follow it word for word. It allowed them flexibility. The other thing we did is they really insisted, and somehow we came up with the idea that we would have a grand rounds, meaning we would get together, all the field staff doing the education and then the researchers once a month and literally go over any issues. Are there women that are having a tough time, what are some of the strategies around recruitment and retention? So we would drive an hour and a half each direction to Wooster , which is in the central part of the state. It’s actually very funny ‘cause it’s a working class area, largely white but we would meet at the F Net office halfway between and come in and we had all of our team, where we’d have Dunkin Donuts, coffee, and then, you know, lunch. But all the things that - taking a day out of work, one day a month, that’s a lot but I think it actually helped us. I had an idea, which is, I thought I could send around the list of participants and we seem to have - you know, it says if my senses were just starting to have a conversation. And if you felt so inclined and wanted to circle your name, I propose we, at least for the short term, we could send that around to one another and then if we have papers coming out but I could see this potentially growing into something else and I don’t know what it could be. But if you had some interests. Okay. Do that. Okay. So let me—
EDITH KIEFFER: (inaudible).
FACILITATOR 2: --breeze through mine. So, on the Just for You side, do you have a copy of these slides? This was one of our very first handouts we had just for recruitment and this just shows one principle, which is when you’re working from a graphic point of view and you have in Boston area, White, African-American and Latinas, it’s challenging to come up with sort of an image that would be appealing and then you saw others that were even more generic in our recruitment materials, but that’s one example. In the WIC program, nutritionists would hand this out. The next two slides really talk about the - in terms of our - sort of the - what you say - you had a question over here about how do you recruit and then retain people in the program. One of the huge challenges we found was that our organizations we were working with, WIC, who was our recruitment and then also helped us with retention because this is an important thing with retention.
Edie had mentioned the cards and things like that. We had to literally go – Judy, our project director, would go once a month to a WIC office downtown and they would help us go back and look and see if they had more up-to-date addresses, for example, so in order to keep women in the program. We also found that over time, and I’m sure you may find this with some of your other program partners, people are so overburdened with the funding cuts, literally to spend a minute to describe the study, they did not have that minute. The choice was between getting the kid to the lab for an immunization or recruiting them for our study. I wouldn’t want them to not send the child to the lab. So, those were, so we had to actually - it was an interesting discussion internally but finally we decided and we talked with the state level group that we would - we had these apple awards, so people got an incentive if they were of the five or six WIC programs.
The ones that recruited the most women, they would get a certificate or a $10 certificate they could use for their WIC program, so we did it kind of as a program-wide thing. We had to actually double the number of WIC programs we participated with, so again it’s the organizational structure around the recruitment and retention. The other thing is when we had to lay off all our faculty, part of that was to also double the people that we had delivering the intervention -actually not delivering the intervention, that did the recruitment and the follow-up. And I think the last part of the answer to your question is, again maybe it would be only, well, it would only be particular to an intervention study but I’m reflecting it on now, is we actually used the evaluation staff to help us retain everyone. Does that make sense? So, even though you have this thing is sort of respondent burden and you have to get a survey, we put some of our resources there and we had ways of communicating without contaminating the intervention, so to speak. I hate those words.
So that people trying to deliver the intervention, if we got an updated address, things like that, they would get that information. Then we also, in terms of keeping women in the intervention itself, and I don’t, I don’t know how this would translate to different program settings here, but the basic message would be, be as creative as possible in the modality that would still let you provide, I hate, the word intervention doesn’t even sound participatory, participatory to me anymore, at any rate what we did is decided that for participants who really couldn’t figure, you know, it was just difficult for them to have a home visitor come, that we could do it by phone and we dug through and we actually, one of the people, my boss Marie, at the time the department chair, had worked with the healthy start evaluation, and she had found that the validity of information you got in a home visit versus a telephone visit, at least from an evaluation perspective, was about the same. I mean, it’s not the same as having someone there, but from a validity perspective, it didn’t do terrible violence to the intervention design.
So, overall we found that women love the phone calls, and they like the home visits once people could actually come over, but that was tough. We had five home visits, we actually combined the last two together, we had people doing phone calls, and people doing home visits and there’s a form which is in the back of the packet that I had handed out, the stapled packet, called our intervention tracking form, and you can look through that at your leisure and if you actually have questions, I can give you Carrie’s phone number or email, where the, each of the intervention staff would write down the women’s goals and any thoughts on the conversation, they would fax that to us, and then we would make it available to the phone callers and vice versa.
This does raise really serious issues around confidentiality and human subjects protection, so it could only come in on one fax machine, it had to be checked very, you know, we had to say, it’s coming now, we’d get it, we’d take it into our office, and even though it’s just nutrition and physical activity, it doesn’t matter what it is, it’s still protected by human subjects, that would maybe different for some of the program interventions, but nevertheless, there’s patient information and women’s, program participants information. The monetary and gift incentive, somebody had said did we go back to our community partners, we actually did at one point, was we felt we had to make more, you know, things for babies, you know, people donate things that the mother did find appealing for the babies, for themselves that needed in the home, so we did go that route.
Little photo albums, things like that that mother’s wanted and could use. I think in the interest of time I won’t go through this, but you can read these quotes, one of our doctoral students really recently did another type of process evaluation, which is sort of an after the intervention was over, she went back to half of our control subjects and half of our intervention subjects, and she said, talk to me about the community, talk to me about the constraints, and she did English speaking women, Spanish speaking and two different groups in both of the two metropolitan areas, and then again, getting at your issue, we had to put the women from South America in with the women from the Caribbean, and that didn’t necessarily work that well for us, they were comfortable together, but their experiences were very different, it was hard to pull that out.
So, I’d wish I had had the resources, and the woman who did the focus group was from Argentina . Now, everybody loved her, and she was used to working in the Boston community, but, so she was used to working with women from the Caribbean, but nevertheless, the lessons and how people approach their view of their culture and their community, what happened to them in The United States, appeared to be very different depending on where they had come from, so. So, I’ll let you read these quotes, well, some of them we’ll just have to, I mean this one is, I was reading, I mean she’s actually published, she’s sending this as a published article, and some these I just, you know, I want to weep when I read them, years go by and you do not know who lives upstairs. And this really talks about this pace of life here, and really the prioritization of time for family.
This came out extremely important, and Edie talked a lot about childcare and all the literature on pregnant interventions, and pregnant and postpartum women would say, guess what, transportation, childcare issues, people can take phone calls, they can’t come out to home visits in the postpartum period, I want to come back to that whole issue, if people are enrolled in a group in pregnancy, what would you do. But, the notion to people who came from other countries that you had to pay for childcare was just astounding that it was a commodity, not something was part of the community. And this talked a lot about people, people had a lot of observations about how they would go anywhere to get any kind of coupons, savings, are field workers had to work a lot with women around how to use coupons, yeah, I love that there’s a law to grab some milk, if you consume a lot of milk. And then, this was actually more in our Springfield area, which is the western part of the state, a lot, and this is more where women were from South America rather than from the Caribbean, the notion that if you needed something quick, so this was around the issues of time and childcare we’re driving, which didn’t surprise us, but we need to address this better in future intervention.
Again, back to working women, and some of the other issues around that, this is an issue, so there’s a lot more quotes and things (inaudible) developed and if you like and want to circle there, we can send you these articles as they start to come out. People who worked had to do things that were terribly convenient, and they just literally didn’t have time. So, in terms of process evaluation, there’s this other kind of process evaluation and again we can, you know, if we have a group email going, we can share more information on this and other examples. I think this sometimes comes out in process evaluation, but I was listening to all the, what everybody’s bringing up around funding and how do you show that you delivered something and then how do you what worked, so the research and program evaluations show does it work, but one of the things we’ve been hearing, at least in Massachusetts is at least let us show that we delivered it.
At least let us show that, because that’s something we can show on the short term. So, again we have the intervention tracking form, which we distil down into, this is really processed implementation evaluation. Was the intervention delivered as planned, and it also is a beautiful almost history of how it happened and how it changed, that nobody can read, including myself, but basically the key points are we had home visits on the left hand side, and the question was, among people getting aero to five home visits, which were hard to schedule, how many phone calls do they get, and in the end we still had 71 women out of about 350, who got nothing despite all our, I mean you can not believe, we had the most elaborate systems for finding people, who got nothing.
They literally got nothing over a year, and we were laying ourselves on the subway tracks to try to, you know, please, we’ll come up and yeah, we’ll be there, and they come, you know, we’d meet people at McDonalds, you can’t imagine, but then, 63 women did get at least get one phone call who got no home visit, and then when we got to our results, you can guess what we found, no results or just marginal results if you compared intervention (inaudible) but if we go into the high intensity women, they changed beautifully, so it brings me back to how do you recruit and then your question, which is how do you retain people, that’s the (speaking foreign language)
UNIDENTIFIED SPEAKER: (Inaudible)
EDITH KIEFFER: Yep, yeah, well, why don’t we come back to that at the end then, lets just hold that question about working with the partners, yeah, would that be okay. Because we’re almost done here and then I think that deserves sort of some deepening, and I think it would interest a lot of people in the room, again, these are in your copies of the slides, so you’ll see some of the issues we had in delivering the intervention, which is in a way, it’s a part of retention, it’s a part of how do you deliver it. It was very difficult to schedule it, especially the initial visit, but once we did, then we could establish the rapport with the women. And we had issues around boundaries as well, I was really glad to hear that Edie. A lot of issues with caller ID and well, not that you bring up partners, partners not wanting people to come into the home even if the woman did, this came up occasionally.
All sorts of cancellations and no shows, and then, you know, just other things you can imagine in terms of inviting people in. we found that people loved the phone calls, particularly if we’d had at least one home visit, and then Michelle, who was a social worker and had worked in the health centers, and Iyana, who was a Latin America woman, and we had all people who were fluent in Spanish, but largely Latina, doing the phone calls. This was part of the intervention that overwhelmingly we were able to deliver. The last thing I’ll just note there, and they we’ll go back and just sit down is, we did not ourselves intervene at the level of community, this goes back to the community participatory thing, we tried to work at the interpersonal level through our health worker, health mentor, and through the organizations to facilitate to sort of access the communities resources.
The other thing that I wanted to mention here in the context of a research is, we had women doing physical activity, perhaps more than they’ve ever done before. We used the phone calls as a way to check for any medical overuse complaints, so again, Bobby, who’s the internist who’s at one of the health centers, she oversaw those phone callers. So, we had a system built in to check for that. I think these challenges everybody in the room would learn and maybe I’ll just leave that up and we’ll segue way back to and Edie will lead us sort of in the final, we’ll make sure we come back to some of the issues you raised, including dissemination and working with our partners.
EDIE: Our project is much less far along, you’re basically done and they’re analyzing data, correct?
EDITH KIEFFER: I think the word is (inaudible).
EDIE: Done for, done in.
EDITH KIEFFER: Done in.
EDIE: And our project is only half way through, so we don’t have, we’re just beginning to analyze our process data and we certainly don’t have outcome data, so just in that sense I don’t have as many lessons learned except for the things that get in the way, and someone asked me at the break, what do you do when you find out that some of the things that you’re doing just aren’t going to work. Karen talked about changing the intervention, what does that do in a research study, what is your (inaudible) going to say and things like that. I don’t know that I have the final answer, except that I shared with her that I think the funders in some cases would rather see something happen, like you’d be able to create the project, than to stick to something that clearly isn’t working, especially if it means you’re going to run out of money and not be able to find anything.
So, we’re on the brink of making some changes, not so much to the curriculum, but to the structure of the project, and I think you already did do some of that, so I don’t know if that helps, but the other thing is we’re very aware, right now, halfway through the project, our steering committee is already beginning to discuss, how would we sustain this in the long run. One of the barriers we face is that things change between the time we wrote the grant and we got the grant, and then we got the grant, and literally day by day, and of course the change which all of you are familiar with, is things tend to go down hill, a tremendous loss of resources, two of our community partners disappeared altogether, especially Eastside Partners, they’re not there anymore because of lack of resources.
Our transportation was all worked out and then they lost money, so they’re gone, and so there’s this constant need to kind of recreate and figure out what you’re going to do and it all cost money. But, and then the other thing was, we assumed that the way to sustain this would be through our state and local organizations that had general funds, and in some cases they lost those general funds as well. I like the idea of healthy start because it’s had a life, you know, that seems to have gone one. We’re all facing this challenge, and I imagine as we go ahead, what we’re going to be doing is saying, how can we cobble this together in different ways in our community health center. There may be possibilities for replicating what they do in our group, we’re showing the success of group activities, they’re beginning to think, maybe we can do part of our pre natal care visit as a group visit, and build in some of the things that you’re finding success with, and that may actually help keep women into pre natal care, since---
UNIDENTIFIED SPEAKER: (Inaudible)
EDIE: (inaudible) center pregnancy, yeah, I’ve heard of that, but that’s one way that we’re finding.
EDITH KIEFFER: So that we make sure we end on time, and then if you want to catch us and we can talk more, I think I want to make sure we talked about the peace around, how do you give back to the community and the (inaudible) I can say one quick thing on dissemination, or do you wan to add to that?
EDIE: No, go ahead, and then I will.
EDITH KIEFFER: The dissemination, see it kind of links to the (inaudible) with these sort of step of building the coalition, building the relationships early on, which I hear everybody has had to do, now the, as these funding sources shifted and someone else said, gee, sometimes you have no money, and sometimes you have five hundred thousand, was that you, (inaudible)
UNIDENTIFIED SPEAKER: Yes . (Inaudible)
[Laughter]
EDITH KIEFFER: So the state WIC program, actually now the US Department of Agriculture is giving monies more to the state programs rather than to the universities, so they, for example, approached me and they have to now develop more – over the next ten years – client-centered counseling. They can no longer take the twenty-four hour recall, like I always did as a nutritionist for ten years, and say, you need – you have four fruit and vegetables, you need two more, and, you know, ride them. They actually have to develop more behavioral (inaudible) and he said, oh, okay. Well, you know, you helped us with this research study – we can help you with that. And then they have a strong request to us to help them do the program evaluation (inaudible).
And it’s interesting because, we are talking – just like a week ago – and I said, well okay. They decided, well, we’ve got to call Washington . I said, the real question is always, how sure do you want to be. If you need to have this randomized control, if you need to show it’s better than WIC now, we’d have to do all this randomization. Can you ask them, is it enough to show that there’s a plausible, you know, that it worked. They said, well let’s try for that, because they want to roll it out statewide, all 180 programs.
FACILITATOR 2: That would be great.
EDITH KIEFFER: Not our project, it’s an adaptation of another kind of counseling technique called emotion-based interviewing. But it’s a real challenge for program evaluation except it’s one I love because people now, even in the research community, are so much more willing to accept something other than a randomized control design.
FACILITATOR 2: Right, right.
EDITH KIEFFER: So you can do like a pre-post design, and it’s really fun to have – being in public health in a health center, then at a state health department, then at a university to be able to do research designs. And I think CDC if you can push them, do research designs that really let programs do their work, which is tough.
FACILITATOR 2: Right.
EDITH KIEFFER: Edie, you are going to jump in there.
EDIE: Yeah, and I’m trying to think of where, what-
-
EDITH KIEFFER: Well, we were talking about giving back to the community and dissemination.
EDIE: Yeah. Okay.
EDITH KIEFFER: So one of the ways of giving back is to help the (inaudible).
FACILITATOR 2: Yeah.
EDIE: Two thoughts – I mentioned originally this bigger partnership and Karen; you said something about this is an interpersonal intervention or at best it’s a social support intervention with a group. What about the community context? This project is one of several, so we actually have concurrently going on a broader intervention that’s trying to address community-level factors; increase the supply of and demand for healthy food at the community level. We’re working directly with some of the same community organizations to change their food policies at meetings. We’ve got mini markets selling fresh produce. We’re doing food demos. And there’s another project that’s doing a lot of other things. Part of it is this cross fertilization of projects, so we actually refer women who are involved in this project to some of the community activities; there’s salsa aerobics classes, for example, going on in the community. And there’s other – the eastside women actually said, “We want that too.” So they have a class as well.
So one of the things we do is not only refer people across projects, but we disseminate through those projects. They’re further along. They have newsletters. We don’t at this point, that go out to the community as a whole. So we will put some of our information about our classes and about our lessons learned in those newsletters and in those community meetings where we talk – because one of the dissemination mechanisms is not just through print, media, or websites, but it’s also going to meetings of community organizations and talking about what’s going on. That way you also build a constituency of people who then can say, “We want this to continue.” I don’t’ think we have the ideal solution.
The money issues are tremendous for everybody. I think we’re all facing that. In our case, we don’t have the ability to work with EFNEP or WIC. We have some potential with WIC in the sense that the leaders, the leadership, is really interested in doing this, but they don’t see the time that their staff would have to do any of the activities. And unfortunately our EFNEP program is very rigid, and they won’t do anything other than what they always have done. So we’ve failed even at a – with our other intervention that works with adults.
Adults that are not pregnant are not – just to do their traditional things we couldn’t, kind of, get in there. We’re hoping, again through our partnership, to demonstrate some of the successes and then come at them again with the possibility that this is something they may want to try doing. And I like the idea of Healthy Start because they’re one of our active partners, and that may be one way.
FACILITATOR 2: So we have about three minutes, and you’re the perfect person to raise your hand, because we want to go back to the community.
KAREN PETERSON: One of the things that I think is so powerful about the approach is that throughout your presentation, you identified so many structural level issues that have been pretty challenging for you in implementing a successful program, transportation, access to prenatal care, or connecting with prenatal care in the first trimester. All of these major things and you have this ready coalition, and I know that—
FACILITATOR 2: Yeah.
KAREN PETERSON: --when my colleague brought that up. And to me, that is the power of doing these—
FACILITATOR 2: It is.
KAREN PETERSON: --community based approaches, and (inaudible) by coalitions and how wonderful is it to be able to impact on some of these structural level issues that are going to have (inaudible) impact (inaudible) it just really, I think, reminded myself why it’s worth the effort, because it’s a lot of time and effort and money.
FACILITATOR 2: Yeah. It is.
EDIE: And it really is. It’s a commitment. One of the things that the coalition has learned to do is respect each others needs, as I mentioned, and academics – traditionally people would just kind of say, well, you just sit in your office and write. One of our—
FACILITATOR 2: Now, you know who really do those [unintelligible]
EDIE: Yeah. Well one of our – we, we don’t, I haven’t written anything in a couple of years.
FACILITATOR 2: Who said that? You said the [unintelligible]
EDIE: Because I’m in Detroit trying to solve problems. But one of our projects – one of our sister projects – was defunded [sic] because they didn’t publish enough. And all of the sudden they kind of said—
FACILITATOR 2: Oh that’s the project we got. We got that project [laughter].
EDIE: See. And so---
FACILITATOR 2: It was a trade off.
EDIE: (inaudible) luckily [laughter].
FACILITATOR 2: That’s kind of embarrassing. [Unintelligible]
EDIE: That’s right, they didn’t publish enough, and all of the sudden the community members on the steering committee said, wow, we’d lost this.
FACILITATOR 2: Oh.
EDIE: So we need to also respect your time, and that you need to sometimes say no to us and shut yourself up into the office and write. And you have people harassing you, why are you talking to me, you should be writing. So, I mean, it’s – but it has to go both ways. And also even looking for multiple sources of funding, each part of the coalition may understand different types of resources for getting funding, and non-funding. Other ways of doing things that don’t require money.
FACILITATOR 2: Great. So let’s just take another couple minutes and – is it, Ruth – and then—
KAREN PETERSON: I have more questions, probably not fair to ask because I know it wasn’t part of your design, but just from (inaudible). You looked at – in Boston – you looked at women postpartum. Do you have a gut feeling that maybe you lengthened the pregnancy intervals by working with them this way? And—
EDIE: Yeah.
FACILITATOR 2: You do. That’s cool.
KAREN PETERSON: - see I think that’s a very important –
EDIE: No but finish – yeah, just you said it; I go, just intuitively, because I have no – [unintelligible, foreign?] – I have no idea. But I have that.
KAREN PETERSON: That, that, yeah all you may have is just that feeling and I wondered if you are able to tell yet if you improved those outcomes, like fewer pre term births –
EDIE: We want to. Yeah.
KAREN PETERSON: and low birth weight (inaudible) infants and that sort of thing.
EDIE: I don’t know yet –
KAREN PETERSON: Okay.
EDIE: --but my theory is that we’re going to show that, and not – we may not show the increases in healthy eating and exercise at a statistically significant level. But I’m wondering if the social support itself, and the general advice giving, is actually going to help with pregnancy outcome, so [laughs]. And we are planning to measure that.
KAREN PETERSON: I think that’s that squishy thing that you can’t get your arms around but I think it’s very important.
FACILITATOR 2: And you know, Ruth, in the – our, when we originally described the grant, we say well it’s a new opportunity that’s really about women’s reproductive health and it’s about the next pregnancy as well as her own health, and then chronic disease risk in the long term, but we only intervened on the chronic disease risk. And for me, and also our community partners who are driving from where you are, which is what about reproductive health and the length of the interval as it affects the next child.
KAREN PETERSON: Because all our pregnant – our PPOR – are pregnancy, repro - I can’t think of the word (inaudible).
EDIE: And it all starts to mush, doesn’t it? Yeah.
KAREN PETERSON: Prenatal Periods of Risk.
EDIE: Yes.
KAREN PETERSON: What we’re seeing is really, where you have to really address tings, is before the woman ever gets pregnant in the first place.
EDIE: Right. [Collectively] Yeah, absolutely.
KAREN PETERSON: That’s (inaudible) have the opportunity with your-
EDIE: With the post—
KAREN PETERSON: With yours.
EDIE: Well and so do we. Because these women will go on –
KAREN PETERSON: (inaudible) will go on—
EDIE: --you know, and hopefully they’re healthier.
KAREN PETERSON: Right.
FACILITATOR 2: You had a comment in the back. Or a question –
KAREN PETERSON: (inaudible) is the research, but came in tomorrow there had already been research.
EDIE: Yes.
KAREN PETERSON: (inaudible) and so the agency chose that model, and when they chose the model it was the fact that we didn’t have to recreate.
FACILITATOR 2: Yeah.
EDIE: Yes, serious.
KAREN PETERSON: Somewhere down the line as people start to ask me for outcome, well, I didn’t start with that, you know, the understanding that somebody was going to ask for outcome, so I’m trying to figure out how do you, in this process, evaluation, and then you have people who really want to ask you research based questions at the end of the day. And you haven’t really set the stage (inaudible). That’s where a lot of people are right now. In the beginning it had already been researched enough, they’re worried about that (inaudible, but as you change the legislature (inaudible).
FACILITATOR 2: You’ve got to have data.
KAREN PETERSON: (Inaudible) turns them into those people that are (inaudible) come in to the table are asking more research – they’re (inaudible) and research. So now they’re asking those questions after the fact, after you disseminate your program, you’ve finished your research. But somebody really wants to take it from research to reality—
EDIE: Yeah, yeah.
KAREN PETERSON: --how do you connect the dots so that at the end of the day I haven’t done pure research, but I am able to say that I have similar outcomes?
EDIE: Right.
FACILITATOR 2: Well one of the things—
EDIE: We have to do a follow up.
FACILITATOR 2: --I mean, we’ve been thinking about this a lot and the program I run is exactly on that point. It’s what are those research designs and strategies that start at – in effectiveness – trial and then go out, and that’s why I wanted to put a little emphasis on the process implementation evaluation which is often a good place to start. What does it take to deliver? Because it takes so long to affect health outcomes, the other thing – it’s more on the childhood obesity side, and I know somebody else is working with child obesity, I don’t know if it was you, Carolyn, or who it was, or Colorado we were talking maybe a bit about that – is using, my other passion is surveillance systems, so using existing data. But it puts a lot of pressure back on the departments of health and there are two people running the statistics office, you and somebody I think in the back there. How to use existing data to monitor over time, but that’s also tricky because sometimes your program won’t impact the whole population so you have to find out who actually received the intervention and then see if it’s impact.
But I see this as the next big challenge, like, the workshop in two years should really be about, what about – and going back towards documenting – yeah, because people want, I mean, we hear from the CDC, from Robin Hammery and Bill Deets in division of nutrition; well Congress wants to see (inaudible) my change, give us that money for the sidewalks, and this, and check back in five to eight years. It’s like, well that’s not, you know—
EDIE: Yeah, that’s one. We have a reach project, I don’t know how many of you are familiar with that, but it’s from CDC and they, you know, they originally wanted us to reduce health disparities in diabetes in five years. Well, it takes time, you know, and we have a multi level—
FACILITATOR 2: Yeah, yeah.
EDIE: --intervention because that’s what community residents identified intuitively as needed. But it takes time. And funding cycles don’t go that fast usually.
UNIDENTIFIED SPEAKER: (inaudible) reducing infant mortality by 50% (inaudible)—
Yeah, right. It’s unrealistic.
KAREN PETERSON: It took the district to 2001 to reduce it to 45%. I think Boston was one the programs that was successful in (inaudible) within five years. But of the fifty new programs funded only a few were able to do that, and they’ve since expanded to about ninety-four programs.
FACILITATOR 2: Okay.
KAREN PETERSON: So they too have come to the realization that it’s not going to happen in two or three years or five years (inaudible).
FACILITATOR 2: Right.
EDIE: Especially if it involves inter-generational processes and a healthy woman over time.
FACILITATOR 2: So listen, we’ll stop now, just because I always hate when things, you know, people say you get to go at 11:30 and you don’t really. But we’ll be here for like five or ten minutes, and for those of you who circled your name, we’ll at least send around an e-mail thing so we have our addresses and as at least papers come out and promise not to bug one another, but on the other hand, if there’s something we can share – for myself, before turning back to Edie – I just want to say thank you so much. I learned a lot and—
EDIE: [interposing] me too.
FACILITATOR 2: --I actually am going to rush home and I realized I have not set up a time to go back to the WIC centers and say, here’s what we learned. Here’s what we’re learning. What sense do you make of this?
EDIE: Yeah. That’s tremendously important.
FACILITATOR 2: And I’m really embarrassed I haven’t done that yet. So, thank you.
EDIE: And it’s key to put together real simple information sheets, just things that anyone can use to make their points to whoever they need to make it to. Like little bullet pointed – yeah, very important – I was going to say, I didn’t include it in the packets but I have two – one article that’s published that I could send to people who are interested, about the early process we used for planning this – and then there’s a book chapter that’s going to come out in June on using focus groups for community based planning. I can’t distribute it yet, but it’s something that I could distribute once it’s published.
FACILITATOR 2: Maybe just send it to the circled names.
EDIE: Yeah, to the circled names, is that—
[Collective Agreement]
EDIE: Apparently it’s going to be on the AMCHP website, yeah. Okay, so if anyone’s interested in more details about the how did we do that, yeah. Okay.
[Multiple Speakers]