AMCHP 2006 ANNUAL CONFERENCE
EARLY CHILDHOOD: BUILDING THE FOUNDATION FOR LIFELONG HEALTH
March 4-8, 2006
KARIN DOWNS: So in looking at these numbers, we realized that we've done a very good job of addressing or answering the what, but we really felt that we needed to go the one step further. We needed to augment all the quantitative data with a more qualitative approach. We needed to ask the question: Why? And why were we doing a focus group? We were doing a focus group to really put the face on the numbers.
You know, how are women experiencing their poor birth outcomes? How are the ‑‑ you know how are they experiencing the healthcare system? Are they experiencing differential access to goods, services and opportunities? I want to go back to the definition of institutional racism, which was differential access to goods, services and opportunities, because of race.
And so we wanted to get at are these women experiencing a different experience within the healthcare system because of their race?
So focus groups are a very important tool for us. The moderator develops the questions and guides the conversations. The observer or the recorder carefully records women's answers and summarizes them and checks to make sure that we are capturing what women really want to impart to us. The other thing that's very important about focus groups is it's not just women relating to the moderator but relating to each other and connecting with each other and through that relationship with each other describing their experiences and confirming or coming up with new angles to interpret their experience.
So there are four questions that we ask. The first one is the ice breaker. That establishes the common ground. It's a neutral question. It finds a common ground among the participants. You know ice breaker questions could just be as simple as how long have you lived in Springfield? How old are your children? Something that establishes the relationship.
The next question is a transition question. We want to link the participants to the intent of the investigation within the general context of their lives.
Some transition questions could be: How do you feel about the healthcare you received? How do you think your prenatal care was? How about before you were pregnant, how was that care like for you? Then we get to the key question. This addresses the core or central issue that we're trying to get at. It's the heart of the issue. Were you able to access resources? If not, why not? Were your concerns validated? How did women, you know, we're trying to get at. We wouldn't phrase it like this but we're trying to get at how did they experience the power differential between themselves and their providers. Did they feel they could ask their providers questions? Although we actually never finished the focus groups in Springfield, we're going to. Beth had mentioned this is the final project. I have to qualify; it is still a work in progress. We are still collecting data and we hope to fill it out a bit more.
But there were two focus groups in different parts of the state. One was in Wooster, that was run by the Wooster Healthy Start initiative. It was a focus group that was run with Ghanaian woman and in Wooster there's an alarmingly high infant mortality rate within that population. They ran a series of focus groups. These are some of the answers that women came up with.
They felt they were confused by the healthcare system. They didn't know how to navigate the Social Services. Many of them were undocumented and they were concerned about legal issues. They did not want to access healthcare for fear that they would be deported or reported to INS which actually would not have happened but still there was a perception that they were at risk.
Many of them felt that the healthcare providers viewed them as uneducated or stupid, because of their accent. And they didn't want to go back. You know they would show up in the emergency room if they absolutely had to, but they really did not want to voluntarily access the healthcare system.
They felt intimidated by the healthcare providers. And after their babies were born, Beth alluded to this, they were very fearful of the state system. They thought that DSS was going to take their kids away. They did not want to share some of their practices, such as co‑sleeping. In other words this big campaign about SIDS and you shouldn't co‑sleep. Well, they do. So rather than putting their child in another room, which they wouldn't do, they just don't talk to authorities. They just hold that information to themselves.
In another focus group that we ran for the perinatal depression, a young woman, very articulate young woman, felt that when she approached her healthcare provider there was a preconceived notion of who she was based on her race. They assumed she was young, uneducated and didn't have a supportive partner. None of which in her particular case was true. She was very well educated. She had a very supportive partner, but she felt very reluctant to disclose and open up to her healthcare provider, just because she felt she had received very differential treatment.
So that's the heart of the matter. Then we end with, we finish with an ending question: This brings the discussion to some kind of closure. I think here we feel that it's very important to ask women. What concerns you most about the care you received? And ask for their suggestions, their input. You know what would have made your experience better?
And one project in California that Dr. Michael Lu was telling us about when they asked women what would make things better, they came up with wonderful lists of 100 acts of kindness. I'm sure many of you are aware of that. But they're very simple things like don't touch my belly and offer me your seat, offer me a seat when I get on the bus and things like that.
So I think we want to end the focus groups with you know what would you like people to know about your experience and how might we be able to implement some of your suggestions?
So that sort of concludes the qualitative and the quantitative data analysis. But so we have all this analysis. So we know a little bit ‑‑ a bit more about the what. We may start to know a little bit more about the why. But we want to contextualize it. We want to put it within the framework of society.
So there were several tools that we used and I wanted to say one thing at this point which is all of these process methods at this point were conducted at the state level with a small group of us who are working first in the AMCHP action learning lab and then learning matrix and our goal going forward as I said this is a work in process, our next goal really is to take this process and replicate it in the community. We're not quite there yet, but we are working with our community partners to do, to implement this next part.
So the process methods that we found most useful were drawing up an ecological model. Coming up with a very quick and dirty SWOT analysis, developing a logic model, and I'm sure you all have experience with logic models. You can't be here without knowing about logic models. And then coming up with a training plan is the way that we take this process to the community level.
So an ecologic model, for those who work in grids we love this. The ecologic model along the X axis ‑‑ I think in grids and I always put all of my thoughts into grids.
So along the X axis, along we have four categories. The biological environment, the physical environment, the social environment and the healthcare environment. And along the left‑hand side, and you can all see the ecologic model in the back of this report. Along the Y axis we have community level and then family level and then finally the personal individual level.
And we look at what are all the things that we're looking at, everything from all over society, and how might all those things impact birth outcomes.
So, for example, I'll just go to the next slide, which is the matrix diagram of an ecologic model, but I just wanted to give you some examples of what we came up with about the healthcare environment and the impact on the community level. Healthcare environment impacts access to healthcare, health insurance coverage, immigrant status disclosure, mental health, transportation issues, differences in diagnostic testing, treatment, preventive services. Provider patient racial ethnic discordance, and issues of power and authority. That's just an example of some things that may impact birth outcomes at the community level.
At the family level, family financial resources to access care may impact healthcare outcomes or birth outcomes. And family value towards preventive care may also impact birth outcomes.
And at the individual level, for example, use of available prenatal and postpartum care may impact outcomes. And I would add to that interconception care. Uses of substances, alcohol, cigarette smoking, drugs may impact outcomes. Nutrition, for example, may impact outcome. And this was a big one: Lack of trust of healthcare services.
So that's just a way of mapping within, it can seem a bit overwhelming to try to figure out how to we're going to impact birth outcomes. But this is stepping back from the data, stepping back from the trees to look at the forest.
The other thing I wanted to mention about the ecologic model is that it really helps underscore what we might be able to change and what we might not be able to change. Some of these factors we just acknowledged as being way beyond our control. Whereas we could identify certain key areas within the ecologic model that we might be able to address.
The SWOT analysis, stands for strength, weaknesses, opportunities and threats. This is a quick and dirty thumbnail sketch of resources available and how we might want to use them. Strength and weaknesses refer to internal and current strength and weaknesses whereas opportunities and threats really refer to outside factors that both support or might impede a particular program approach.
We also have the full SWOT analysis in the back of this so you can refer to that. But it's interesting that lack of sustainable funding was both an internal weakness and a threat and you know comes up again in opportunities, you know, potential funding. We're hoping.
But these were just a way that we charted some of our strengths and weaknesses in our state.
And logic models. Last but not least. I guess we have another one. Logic models. Sort of take the SWOT and ecologic model one step further. Logic models really link programs causally, they connect the input with the actions to the outcomes and to the goal.
We found that it was very helpful to start with the goal and then to work backwards from there. What did we want to achieve? One thing that we did in Massachusetts was this is just an example of one little piece of a logic model that we had developed. One was we wanted to improve birth outcomes for everyone in the state, especially focusing on birth outcomes for African Americans and other minorities.
And we felt that one way to do this was to ensure equal and high quality care at all Massachusetts birth hospitals. Now we all know that that's too little and that's not enough of an impact. But we thought, okay, that's one thing we can look at. And so it's a single point of impact. And what we did was we decided that, okay, so how would we ensure consistent and high quality care in Massachusetts? We realized we're the Department of Public Health and we're the state and we can regulate. So we're going to use our power wherever we can and so we decided to revise the perinatal regulations and you know within the perinatal regulations, we did really focus on ensuring that everyone could get the best standard of care regardless of where you live, regardless of your race, religion, creed, anything else. Age.
So this is just another, this is another view of the logic model, the inputs inform the activities which inform the outputs short‑term intermediate long‑term impacts. You can see the full logic model if you haven't had enough in your life already in this book as well.
So the last sort of process that we really wanted to develop was the training plan. I won't go too much into this, but the point of the training plan was really to impart a lot of our skills to people at the community level so that they themselves could have access to the data.
As Emily was going through the data, we realized that there's a lot that we could have done. We could have done logistical regressions. We could have done very fancy different analyses, but the point of using bivariate analysis, PAR and PPOR was to put these very simple tools, analytic tools in the hands of the people who are most impacted by the data.
So that's why we really wanted to develop a training plan that would treat, that would show people how they could access community data, how they can run their own focus groups. They can ask the questions themselves, how they can do the population attributable risk. How they can do their own PPOR. So the training plan was really our attempt to move data into action.
This is another diagram that we are borrowing from the matrix program. And I would encourage all of you to go on line at the end of this and look up www.matrix.com. There's a lot of great information they have on the website. But basically the data portion is what we've done. That's what we have used to identify the issue.
The action really were all the process methods that we used to develop the plan. The feedback is really incorporating program evaluation to inform program development and also to feed back into identifying what additional data we may use. It's all cyclical pattern.
We are very fortunate in Springfield to work with the Springfield FEMR team. The team is multi‑disciplinary. We have a lot of political buy‑in, and their goals are congruent with, are congruent with the Department of Health goals to address the racial disparity in birth outcomes.
One thing I wanted to say about the matrix, they really did a very good job of identifying everybody who needs to be at the table to elicit change or to impact policy and program and the roles that need to be taken into account, there needs to be at the table there needs to be a decision maker. Somebody who can influence policy.
There also needs to be the technical analyst, the person who can look at the data, both the qualitative and quantitative data and say what does this mean for our community.
We also have to have a program analyst, someone who defines program priorities and last but certainly not least we need to have the voice of the community advocates, the person who ensures that the women who are affected by the programs and the policies are at the table and giving their perspective. Too often we can get too disconnected from our intents. We have very good intentions based on data, but we really need to hear from people in the communities who are affected by the birth outcomes.
So we found in the Springfield FEMR that we had all these roles. We had the decision makers, the technical ‑‑ well technical analysts through University of Massachusetts and the program, there were a lot of people doing good program work. And there are an abundance of great community advocates.
So we are undertaking sort of a three pronged approach. Identifying the perinatal disparities at the community level. That's a lot what we've already done. We've shared a lot of our data that Emily presented with the community.
The next part, the identifying factors in the community. Now we've done that through the ecologic model but we're repeating that process with people in the FEMR, because of course they know their community much better than we do and there may be many factors they think of that impact birth outcomes in their community. So we will go through both the SWOT and the ecologic model and logic modeling workshop in the community.
And then place all of their work in the context of you know the role of race simply in understanding, understanding the role of racism in perinatal disparities. This is where we draw on work from other communities. We draw on experts like Michael Lu and James Colin, and we bring their frame works to the people in Springfield to give them an understanding of what might be at work in their community that they may not have thought of, what might have worked in other communities that they could bring to their community.
After those three parts are completed, then we work on developing the plan, the strategic plan that will provide a framework for evidence‑based programs through the use of analytic and process methods as we just described.
Engage in planning. Identify strategies to increase public awareness and inform policy action. I think we feel that it's important to really communicate beyond just the FEMR. This is an issue that needs to go way beyond just the people who are working on it and concerned about it. We need to raise awareness. We need to really get that outrage, the voice of the advocates at the table as well.
And then we need to go one step further. We need to disseminate the results throughout Springfield and other Massachusetts communities and this is where we gain much more awareness of what we're doing.
Beth mentioned earlier that one thing that we really hoped to do that we're working towards is creating the statewide communication. There's a lot of good work that's going on in different communities in Massachusetts, in Boston, in Springfield, in Wooster. There are other efforts that are going on in other communities, but people aren't talking to each other. They're not connecting. They're not sharing approaches. They're not sharing resources. So this is the next step is that we need to broaden out what we've done at the Department of Public Health and what we're doing in Springfield to really create those connections among all the community members.
Broaden awareness. Mobilize concern and engage the advocates. And engage the policy makers.
And here we are, you can also contact any of the other people who worked with us on the final project. And we'd like to take questions.