February 29, 2004
(Download the Word transcript of this conference call)
Operator: Good day everyone, and welcome to today's Topical Conference
Call sponsored by the National Center for Cultural Competence
at Georgetown University, entitled, “Cultural Consideration
for Early and Continuous Screening”. As a reminder,
today's call is being recorded. At this time I will turn
the call over
to Wendy Jones.
Good afternoon, this is Wendy Jones from the National Center for Cultural Competence. I'm pleased to welcome all of you to the second in a series of topical conference calls. Today's call, as you have heard, is entitled Cultural Considerations for Early and Continuous Screening. Here at the National Center for Cultural Competence, there a few colleagues with me. Suzanne Bronheim, you have heard her voice already but I will let the other two who are present introduce themselves.
I'm Isabella Lorenzo-Hubert. I'm a bilingual program and family support specialist, Senior Policy Associate with the National Center for Cultural Competence.
Good afternoon, I'm Tony Fisher, Senior Policy Associate with children and youth with special health care needs here at the National Center for Cultural Competence.
Wendy: Thank you. Also on the line we have our Federal Project Officer, Diana Denboba.
Diana: Hello everyone, welcome.
Wendy: I'm sure there may be other people joining us in terms of participants and other people here from the NCCC but we would really love to get started. Let's move into perspectives from the NCCC. Through a cooperative agreement with the Maternal and Child Health Bureau, the NCCC is funded to carry out its goals which is to increase the capacity of health care and mental-health services, plan, implement, and evaluate culturally competent service delivery. The children and youth with special health care needs project of the NCCC sponsor the topical conference call series. The goal of this project is to incorporate cultural and linguistic competence into the strategies, to implement, measure and monitor the six core outcomes for community-based systems for children and youth with special health care needs and their families. This is in keeping with the helping people 2010 goals. And carrying out the president's new freedom initiative.
A major goal of the children and youth with special health needs project is to assist state Title V, children with special health care needs program and MCHB’s discretionary grant (unclear) to fulfill the vision that MCHB has of equal access for all to quality health care in a supportive, culturally competent environment which is family centered and community-based. And also in which health disparities by racial, ethnic and economic status will be eliminated. And that MCH public health agencies will exemplify the highest standards of excellence by employing a highly qualified diverse workforce and providing a respectable and supportive work environment. With all of that said, let's stop for a moment and talk about the call.
The call is structured such that Suzanne, Diana and myself are the call moderators. We will alternate in asking the speakers questions. This process continues back and forth with each of today's speakers. At a point in the call, we will ask the operator to open the line and the operator will assist us with the question and answer period. This will continue until as many questions as possible are answered within the allotted time. The call ends with completion of your evaluation form and closing remarks from the NCCC. I'm going to turn the call over to Suzanne at this moment and she can present Diana for perspectives.
Suzanne: Thank you, I'm very excited. We have a very large number of you on the call today. Even more who are going to access our new callback feature. This is obviously a topic of great interest and I can hardly wait till we get started. First we would like to hear from the Maternal Child Health Bureau, Diana Denboba.
Diana: Hello everyone, welcome. I am here at the central office at the Maternal and Child Health Bureau. With Marie Mann from the genetic services branch, Aisha Jones, who is a scholar here at the integrated services branch, and Dawn Levinson with (unclear). Wendy had mentioned a little bit about what our division of services for children with special health care needs in the Maternal and Child Health Bureau does and is concerned with. We think, along with our partners such as families, city-based organizations, our state programs and others have come up with a model of serving children and youth with special health care needs that is family centered, community-based, coordinated and is set in a city setting where the services are easily accessible to families and there is a financial structure available to pay for the services.
One of the real essential components of a model of services for children with special health care needs is that they have access to early and ongoing and continuous screening. This could be newborn screening, newborn hearing screening, developmental screening, and it is just as important that following screening there be some services or treatment, some kind of follow-up with that. We all know that families come from different perspectives and backgrounds. We are trying to hear from people who have expertise and have lived it in terms of some of the ethnic cultural considerations when we talk about early and continuous screening.
Suzanne: Thank you. Was there anything else, Diana?
Suzanne: Well, we will move on to meeting our speakers for today. We are fortunate to have people with wonderful experience and expertise. For our speakers, I will call on each of you and ask you to just give a brief introduction of yourself and what you're doing. Then we will start the call. We will start with Ms. Yazzie.
Wanda: I'm calling in from Santa Fe, New Mexico. My name is Wanda Yazzie and I am the nurse consultant for the newborn screening program for the State of New Mexico. I help manage and coordinate all the newborn screening activities.
Suzanne: Thank you. Rabbi Ekstein?
Rabbi: I'm Rabbi Ekstein, director of the committee for the prevention of Jewish genetic diseases, Dor Yeshorim, in New York.
Suzanne: Thank you. Isabella already introduced herself.
Isabella: Yes, I am here at the National Center for Cultural Competence and part of one of the hats I wear is to provide early (unclear) for children suspected of having developmental disabilities and delays. (remainder inaudible)
Suzanne: And Ms. Brown.
Desiree: I'm Desiree Brown with the District of Columbia Part C program. I serve as the parent coordinator for the program. The primary focus is family support.
Suzanne: And Ms. Doksum?
Teresa: I'm Teresa Doksum and I'm with Abt Associates in Cambridge, Massachusetts. I’m sitting here in Bethesda with my project officer from (unclear), Penny Kyler, and I am the national evaluation contractor for the gene project. This is a community-based education outreach project and some of the other partners are in the room here with me as well.
Suzanne: Thank you. As we said when we announced this call, we wanted to talk about the cultural issues and considerations because the whole concept of screening is very culture bound. It has a perspective that fits with some of our mainstream culture around finding things early, and fixing things and having control over things. Those are important values that we hold within the public-health arena. But for many families and for people from diverse cultures, they may have a different set of values or a different perspective on this. So what we're going to be talking about today is some different approaches, and the ways to really take into account those differences in culture as we go about meeting the goal of early and continuous screening. For those of you who have been on our call before, you know we generally start with a family and consumer perspective.
We will do that again today, Desiree Brown who is with DC early intervention, is both a parent herself of a child who has been through that screening process and also works with a number of other parents. We will be asking her some questions and she will be sharing some of her perspectives and experience with us. Diana, do you want to start?
Diana: Desiree, thank you for participating on the call. As both a parent who has been through the early intervention screening experience and as a parent support coordinator for the District of Columbia Part C program, we are interested to hear a family perspective on the process of screening. In your opinion, what are some important considerations in approaching families about screening and screening results?
Desiree: First, coming from a twofold experience personally, my major concern would've been understanding the family dynamics. Our initial visit for our son for screening, I did that alone. It was automatically assumed that I did not have a husband or that there were no other supports in place for the two of us. Not acknowledging my husband or extended family members as well. So keeping that in mind, understanding that family dynamics and explaining the entire process no matter what the educational background may have been, that needed to be acknowledged.
Diana: In thinking about this, have you come up with any thoughts about how family is defined within culture for each individual family?
Desiree: I think understanding the family as they come through the door, maybe doing a small assessment, would be extremely helpful. In my work, I have dealt with teen moms where the grandmother is actually coordinating services for the grandchild. Or a single-parent, or their children are in a foster care system, just understanding that family can be extremely helpful. It can take only a few moments just to find out who is living in the home and who is caring for the child.
Diana: Thank you.
Wendy: Hi Desiree, this is Wendy. Sometimes families feel offended by the screening process. What issues, if any, have you encountered?
Desiree: Actually several. I have a family who comes from a high economic background and she felt as though the system was set up just for low income families. That it was just a warehousing of children with disabilities. Explaining the process more thoroughly would've been very helpful. Another problem that I have faced recently was having a family who spoke another language and the screening was not done in a manner that they even understood. Translation services were not even mentioned. It was assumed that the dad understood English enough to translate that information to Mom. The family did not understand the process to even complain that this was not appropriate. They just assumed this was the way it was done and they accepted it.
Suzanne: So Desiree, they just accepted the screening process, whatever it meant or did not mean to them.
Suzanne: What about the outcomes of screening? If they don't understand why it is being done. What about when they are presented with outcomes and how can screeners or practitioners help?
Desiree: Just understanding the family in and of itself. Asking that crucial question, do you speak English? Would you like to have a translator available? Just to understand the document in and of itself. Making that option available. Asking throughout the explanations, do you understand? Make sure you get their feedback. Make sure they understand. I don't think an outcome can even be developed without making sure that family understands their role in the whole process.
Wendy: Desiree and Suzanne, I think you mentioned that sometimes families are afraid to ask questions because they see the doctor or professionals as authority figures. How can people address that?
Desiree: That's a really big question. I think that is where I come into play as well. Making sure there is someone who can, when a family comes into the system, understand what their rights are. Understand what their responsibilities are, as well as those individuals who are caring for the children. Making sure they understand that process. A big role with regards to government, they see the program I work with is a government-funded program and they don't want a lot of questions to be asked of them. They don't want to ask a lot of questions because they don't want a Pandora's box to be opened.
Wendy: When you say Pandora's box, are you talking about especially newly immigrated families?
Desiree: Yes exactly, or families who have been here with illegal status. Making sure they understand that’s not what we are here for. We are here to focus on another purpose.
Diana: Are there any special issues, when you think about dealing with families, are there any special concerns that you see that families might like to see in terms of screening program?
Desiree: Having someone there that they can identify with. Whether that is a translator or someone they've spoken to prior, having that person on-site or available by telephone to assist them with the process. The coaching process helps a lot to make sure they have a preview of the document that they will be viewing. So if they have additional questions, they can ask that prior to the evaluation. Or even the results.
Diana: It looks as though, I know in a lot of instances families to talk with, or have as a support there, other families that they feel understand them. And know the community and speak the same language and have the same cultural background.
Suzanne: Thank you for setting the tone. Obviously there's a lot of issues that families bring to the table when we bring screening to them. We're going to talk today about screening of three different sorts. We are going to start out with Wanda Yazzie. One sort of screening is really a universal screening. Universal newborn screening is an example of this. This is something where you walk in the door, you are born in the hospital, it happens. And then there needs to be follow-up. We really want to talk about some of those cultural issues and how you address those. Diana, do you want to start off?
Diana: Hi Wanda, welcome. Can you tell us a little bit about your role and how you support families in relation to universal or genetic screening?
Wanda: Let me give you some background information. In New Mexico, we screen for six disorders. They are PKU, (unclear) deficiency, galactosemia, congenital adrenal hyperplasia, sickle cell disease, thyroid problems. The way that we do it is you have a goal of doing a good job in terms of screening and testing all babies that are born. But our role here, once the test is done and we have the test results, is to make sure that the baby is identified quickly, in a real quick manner. It has do with all your principles of early detection and prompt intervention. You correspond with the physician to connect our rural practitioners to our academic institutions to our clinical specialists at the University of New Mexico. We are the liaison at that point to make sure that things are done in a timely fashion and we are also the checks and balances to make sure the family understands the implications of the disease, what's involved with treatment. What we try to do is make it very simple for the families to understand. And to act as that liaison between all the healthcare delivery systems. We work with a multicultural group from Hispanics to a lot of our Native Americans, we have many tribes here. We have 19 Pueblos, we have the Apaches, the Navajos. We work with a large group of people. Our role is to make sure that the baby has a medical home, that the parents understand all implications. We connect the practitioners and the academic folks together to make sure standards of care are being practiced.
Diana: That sounds really great and I hope most people know that a medical home is an ongoing regular primary care.
Wanda: That whole concept of medical home, you have to realize that what we want to aspire to, in large portions in our state, is not a reality. Care is not coordinated. Services are not accessible. So that is where I come into play. To make sure the parents have access to that expedite referral system. Be a helper to the rural care practitioner. To let them know what's available within the public health system. So along with that we utilize a lot of the principles of health education and health promotion. Different theories regarding that. How do you get the family to understand, what is their value system? If the parent knows what's involved with keeping their baby healthy, once they understand they can take ownership for that. To seek care. And the quality of life will be improved if they do have a primary care provider. Have a medical home and have proper treatment. Part of our job in that whole discipline is to educate the parent. Educate them about how the body works and very simple terms like the thyroid. What needs to happen for the lifetime of the child. What type of lab work needs to be done and why it is important to keep your well baby checks. So basically to make sure what's available, and make sure they know that these healthcare services are available to them and how to access them.
Diana: Wanda, you said a little bit about it but what is the demographic that you have in New Mexico? Could you give a few examples of how you tailor what you do to cultural and linguistic needs?
Wanda: New Mexico, unfortunately, in terms of our Native American health demographics, we have a growing population of Native Americans. It's hovering around 9 to 12% of our population. We have one of the highest rates of SUID deaths and infant mortality and we have one of the lowest rates of prenatal care. In our state, we have the lowest rate of prenatal care. You have all these coupled with the fact that we have low social economic status. A family of four may only live off of $6,0000 or $7,000 a year. That is really tough. That means they will not have money to go to the clinic, they won't have money to go into Albuquerque, traveling from a very rural location on the reservation for healthcare. So those are the barriers that, nationwide there are about 560 federally recognized tribes. Here in the Southwest, we have the largest concentration. There's only about 2.5 American Indians and Alaskan natives in the United States. The life expectancy for Native Americans is about six years less than the US population. So we only live to be about 70 to 76 years of age. And our mortality rates are really high. We have for instance, diabetes is about 420% higher than the national average. Alcoholism is 770% higher than the national average. Tuberculosis is 750% higher than the national average. So with that you can realize what the barriers are. And disparities in healthcare. Coupled with all that, the poverty level. We are about 32% below the national poverty standards. The unemployment rate is about 2.5% higher.
Diana: Given all that, how do you tailor what you do related to newborn screening so that it can work for families from diverse backgrounds?
Wanda: It's interesting on the flip side of the coin, many of our tribes have health care provided by US public health service, Indian Health Service. I was just out at a small rural clinic yesterday and was talking to one of the doctors there and I was telling him that there is a difference between IHS, which is a nonprofit organization, with other nonprofit organizations. The difference is physicians with IHS are grounded in clinical preventative services. They've heard the terms health promotion, health education, preventative services, they know that all those interventions need to happen way upstream in order to keep the family healthy. I think our natives are well served, it's just unfortunate, the ones that live in the urban towns are less served than those out in the rural environment. Then you also have to access the problems with availability to services.
Suzanne: The concept of genetic screening might be unknown or problematic in a culturally diverse state like New Mexico. What have been some of the concerns that you have run into that families have had about newborn genetic screening?
Wanda: There is always in the history of Native Americans nationwide, we've always been a very vulnerable population. So we have in the early days of research, we have had unethical research practices that were done out on the reservation with our native folk. So people always remember that. People don't remember the good times. They always remember the bad times. So within your tribes, there's always that whole Big Brother concept, government intervention, the feds are coming. There's a lot of negative connotations with that. With me, how I deal with that, I usually work through the Indian health service practitioners in order to get, say for instance, a baby screened. They do have good a healthcare system and I know where to access it. I think that is what is nice about my position is having that experience. You know what you can tap into in the community itself. What resources are available and to get that family in for further screening. In terms of genetic screening, if you're doing DNA analysis, it needs to be explained in simple terms. In the Navajo way, there's a lot of words that cannot be translated from English to Navajo. You need a really good translator in order to explain, say for instance, cancer. You have to explain, there's no word in Navajo for cancer. You have to explain what the cells do and how that grows. And the implications of the complications. So in terms of genetics, it's actually an easier concept for them to realize, because they realize that we came from the earth and we realize evolution. In terms of genetic counseling, and the way the father and the mother’s waters blend, it's a real easy concept for Native Americans to grasp. The major obstacle is access to healthcare and how bridge those.
Suzanne: You had mentioned when we spoke earlier that to some extent, at least among the Navajo, there's almost already a cultural sense of issues related to genetics and how people meet each other. Would you be willing to share that with folks?
Wanda: We were talking about that. Our conversation was having a down syndrome baby, for instance, in the Navajo way is not considered negative. The Navajos believe, and a lot of your native people believe, that people come into your life for a reason. There's always a reason for everything. And that person comes fully integrated into the family. They are given specific roles. It may be doing household duties, but that child is always integrated into the family. In terms of the way our introductions are, in the traditional way, you introduce yourself according to your clan. The way that works is that you identify through your mother's side of the family first. So you are born to a family on your mother's side and your grandmother's side. And you are born for your granddad and your granddad’s father on your dad's side. In that way, when you are at any gathering, you announce yourself. I would say my name is Wanda Yazzie, I was born for Bitter Water on my mom's side. Anyway, you go through your four clans, everyone can identify where you are in the whole clanal structure. By that you know, if you're a woman seeking a husband, you know other people, you know that you cannot marry certain people. I guess that's what I’m trying to say. Based on your clanal relations. You are always supposed to marry four clans away. So ancient peoples have always known that. You can't intermarry, you need to marry a safe distance away from your relatives. This has always been something that ancient people have always known through experience. That what works is four clans away. So that's why a lot of your native people consider the number four sacred.
Suzanne: Diana, do you want to move on to your questions?
Diana: I know that your program has developed a number of ways to reach out to diverse communities in New Mexico and helping them understand newborn screening programs. And you have worked at making these approaches culturally and linguistically competent. Can you tell me a little bit about how you have actually done that? Some specifics.
Wanda: One of the first things is of course, it's interesting when you talk to parents or grandparents. Let's say the tribal elder or Native American. One of the best approaches always is to talk in the third person when you are explaining something. So for instance, if you're talking about thyroid, what I usually do is I use an example. This is what happened to this baby when this baby was born. This was the treatment, this was the different blood drawn for testing, this is the pill the baby was put on. So you always talk in the third person. There's also, in terms of cultural competency, there's always cultural taboos. Boy, do we have tons of them out here. You have to be aware of them and work around them and address things in the third person. In the form of a story always works well. Giving examples in that way. In terms of the linguistics, a lot of people speak English and that's what's nice. But one of the things that we developed in our program was a videotape on newborn screening. Our target audience was expectant parents. The way we went about it was to do a survey, focus groups over the state, we surveyed 90 to 100 folks. Put all those concepts and integrated them into a video. One of the questions we asked them was, have you ever heard of the word genes? Not the kind you wear. The answers we got, I thought these women were so smart. The way they put it in their own words. We integrated a lot of those concepts into our video. The other thing we did was we had it in English, and in Spanish, and I had it translated into Navajo. We worked at the University of New Mexico in Albuquerque and also the Navajo language department and we worked with Indian Health Service. We bumped it off of them, off of their focus group participants. I think two of them were elderly. The only thing they suggested was changing one word, that was once again talking more in the third person. Instead of directly like saying, this is going to happen if you don't do this. The issue of shame. You don't want to shame people, you want to educate to them. Scare tactics do not work with our Native American folks.
Suzanne: Thank you so much. That's a wealth of information. Now we want to talk about some of the different sort of screening, we often do screening and genetic screening of specific populations. The sample we’re going to be talking about today is screening for, it started out as Tay-Sachs but now it includes some other disorders, in the Orthodox Jewish community. There are specific cultural issues. Rabbi Ekstein is our speaker on that. Rabbi, I guess a lot of people on this call may wonder how a Rabbi got in the business of genetic screening. Could you just share with us briefly your personal experiences that led to this?
Rabbi: Unfortunately, I have learned it the hard way. I had my own four Tay-Sachs children which I had to care for. For several years they suffered and they taught me a lot. I came to the conclusion that something has to be done. So that others should not have to share the same experience. This is the worst university, I’m calling it the Hard Way University.
Suzanne: Thank you very much. We do know that there are number of Tay-Sachs screening programs specifically for Jewish communities. They may screen people about to be married or about to have children. There may be private testing and counseling. What are some religious and cultural beliefs within the Orthodox Jewish community that may make the typical approaches to genetic screening problematic?
Rabbi: Because the set up in the community, we are already medically oriented, health oriented. Everybody is taking care of their health very carefully. And also we have a lot of children, we have big families. When a family has in the past, it's changed a lot but in the past, when a family had that problem, the first way was to cover it up. If this is going to be known by my neighbor or by my cousin, this is going to go out. Then my healthy children will not be able to marry. They will be afraid. The philosophy for years and years, including myself, my father, they just want to cover up. The process of denial, we call it. Without any logical explanations, but that's what happened. Even to smart people. We call it the ostrich politic. After the loss of the fourth child, I said well this has to change. It was not easy. I banged the doors, I was thrown out by the door I went in, so I banged windows. I decided not to give up. It was very hard but slowly picked up. Today, thank God, it is accepted. I can say it’s a success of 95% at least or more.
Wendy: That's wonderful. I think probably part of the stigma issue that you talked about had to do with marrying within the community.
Rabbi: Not only do they want to marry Jews, but they want to marry from the same sect. Within the Jewish community, there are different sects. Coming from one side of Hungary or coming from the other side of Hungary, the language they have is different. Jews come from all kinds of different places. So they have different customs, the clothes are different, the food is different, how they talk is different. Usually everybody wants to get married in their own little community. Which makes definitely the risk a lot higher. It almost is like a big family. One community, one sect, could come from five or six main families. And 70 or 80% of this is somehow related to this five or six families. So this makes it even more difficult, the situation. But now, by doing the tests, we can take care of specific diseases. One of my duties is to discourage (unclear) marriages, there are still people who don't listen. There are still people who will do it. But we are trying to do everything possible to make this as uncommon as possible. A lot of people are listening. And not doing it anymore.
Suzanne: You mentioned a little bit about how hard it was for you in developing this program. What was some of the resistance?
Rabbi: The hard part was to decide, well I'm going out with my problem out there. That was the most difficult area. Once I started saying yes, I lost children to Tay-Sachs, I want you to know that you have the same risk as I have. Don't think because it did not happen to you, that it cannot happen. It can happen to anybody. Then people started to help. Still today I have doctors in Europe who try to resist, who say this disease does not happen. I never saw this disease. While he didn't see it, but there are a lot more doctors than disease. So he did not have the chance to see it, but unfortunately it is common. Naturally there is some politics and some interests which could stand in the way. To deal with people is always difficult. I don't think the other speakers have red carpets. They probably have to work very hard to overcome all the different problems on the way. But today I can say we almost are done with the resistance. People understand this is something that has to be done and it almost became an adopted culture.
Wendy: Thank you, this is Wendy. I wanted to ask you a question. You have developed what I understand is a very successful approach to genetic screening that works for Orthodox Jewish community not only in New York but world wide. Can you please describe it for me? How does it work? Who gets tested? Those type of things.
Rabbi: Usually what we try to do is everyone should be tested, man and woman, in the 12th grade in high school. That is our goal. In order to take away the part of emotional. You are not testing someone when you're ready to get married. You are doing it way before, when you don't have any emotional attachment. So people will do it easier at that time. We concentrate a lot in the schools, in the seminaries. Usually we go in the school and make a date, the school sends out letters to the parents and they sign a consent for the children. And on a certain specific day, we come down with the team of specialized phlebotomists. We have a system to make sure no mistakes are happening. We have kits for every individual and they are labeled so there are no mixups. We give everybody a test. For the test, they have to fill out the card. They have to put in their birthdate, their gender, their telephone number and their origin. Are they from Russia, Poland, etc. Or Jews who come from Asia or some converts, this information is very important. It's not the same test for a Slavic Jew as for an Ashkenazi Jew. There's a lot more to do if you are Ashkenazi. So we make sure that we ask them all these questions and they sign a consent form. And that is the first part they have to do. When they reach the age and they want to go out looking for a partner, for a mate, then they have to exchange the numbers. The boy and the girl exchange the coded numbers and both of them are calling the Dor Yeshorim hotline and they give the two numbers, the birthdates, and the operator from Dor Yeshorim will get back to them giving them the results. Telling them it's compatible or not compatible. Most of the calls are compatible. It's very easy. The problem comes when we have to say not compatible. Then we have to spend a lot of time in counseling them. Explaining to them exactly the risks and what they're all about. And make sure they understand what is available for them. What are the options they have. That is more or less how the program works. Then we have another part which is also a major part but we don't talk too much about it. But automatically it is done. In the community, we are well known that we're dealing with genetic problems, so anybody who has a problem, the first thing he's going to call is Dor Yeshorim. Well, the doctor told me that, and they ask for advice. One person has a problem with a specific disease, we have the expert for the special disease. As you probably know, genetics, there are different diseases and experts for every different disease. So one of the most important things is to find the right doctor who is good for the specific problem. So we make sure that we recommend them to the appropriate service he needs. Meanwhile at the same time, we get contact with the family. They call us very often for some help and information and to make sure that the healthy children are not having a reoccurrence of this same disease. So we have a feeling that we know what are the steps for the diseases that you need to ask. You need to add a new test. We say, what is going on. When we see a disease which is more common in the community like, let's say familial dysautonomia, we put in effort and got a researcher to research that. We were a part of identifying this gene. We work together with Fordham University on that. We work together on having some different over-the-counter medications which could help them. And they were very successful. It's not a cure. But it helps them a lot to deal with the problem. So constantly we are involved in the discoveries of the different genes, etc. So today we have a list from nine to ten diseases that we are already testing everybody. And if there is a family who has a specific disease which is not one of those, then we try to make it for the specific family that they should not have the reoccurrence factor.
Diana: Thank you so much. Isabella?
Suzanne: Diana, before we go on, I want to make a little segue if you don't mind. I think what's exceptional about Rabbi Ekstein's program is the fact that it is growing from the community. With the community designing it, they were able to design something that was culturally competent. It dealt with the fact that within their community birth control and abortion are not options related to genetic disorders. So that by moving the screening back to the point where it's before you were at those points and by making it anonymous because of the issue of stigma. Having the community that intimately involved in the process and designing it was a way to make sure it really worked for them. Now we're going to switch over to a third type of screening which is developmental screening for the community. Now, Diana.
Diana: Thank you, we really appreciate having you with us, Rabbi. Isabella, the idea of screening for developmental disorders can be very culture bound. Some cultures value independence above any other qualities and believe that gaining milestones that support independence are critical. Can you contrast that with the Hispanic culture?
Isabella: As you mentioned, in many Western societies there is an emphasis on people being independent, self-reliant and self assertive. Focus on individual achievement. In contrast, in Latino Hispanic cultures, interdependence and cooperation are widely held values. So families look more for politeness, obedience, friendliness, how to get along with others. This is important to understand. Which of the culture values are translated into parents’ expectations for their children when we do activities with the families such as screening. Or providing services. I also wanted to add that for Hispanic Latino families, a view of intelligence does not rely so heavily on the cognitive skills such as expression and creativity, but incorporates them by other attributes of social skills, as I mentioned before. That's important when we come with our screening instruments. Those are the times we are heavy on cognitive skills as well as verbal skills. It's important that we do acknowledge and recognize the critical role of the family. And the cultural linguistic background. We have in mind what are those desirables. The language and the communication as well as the child rearing practices, and how the family is defined. And their beliefs about their wellness and how they perceive the disability. The way they perceive is similar to what Wanda has mentioned in terms of the Navajo. Thinking of it as a very special thing. It's either something that has been given by God or if not, something that was a punishment but still is something special for the family. So when we bring the word disability, sometimes it is more than just explaining the disability but understanding where that family comes from and what is their perspective. Working with the Hispanic Latino families, another aspect that is important is how to look at the education, the socioeconomic status, a lot of times we see families without looking at those important components. In terms of how we provide information as well as services to them. A lot of times we think that given information, written information and translating that information is enough. We forget about the level of literacy or even the words that we use. I have encountered that with words such as stimulation or intervention, or even screening. The words are very unknown for them. So I need to really step back and do a lot of explaining of what I am talking about. Also important aspects when we work with families is to understand the many stresses that the family comes with to the United States. A lot of them are escaping from war in their country or are looking for jobs and are coming here to new systems, new language, new rules. Most of them encounter documentation. Those are very important elements to have when we work with the family. So as Desiree also mentioned, when we come also with project studies funded by government agencies, just the word government is something that people not do not like to hear. From their past experience usually. It's not something that has been supportive to them. So naturally they are not going to be very open about working with you. Also for my work, part of my work I do, as an outreach to the community I provide developmental screening in transitional shelters for Hispanic Latino families. That is another layer in terms of coming to families that have that level of stress. And adding to that, am I a good parent? Am I doing a good job?
Suzanne: Thank you, Isabella. How do you approach screening so that it is more appropriate for families based on their beliefs?
Isabella: The entire process of screening needs to be individualized to each child and family. Needs to be relevant and appropriate. So I just don't go with my screening tools, but I try to have in mind every time when I work with the family, all the aspects that I mentioned before. So of course I have a tool that I need to have as a reference, as a guide. But I do a lot of observation and I do try to set a relationship with the family. A relationship of trust. That is kind of the window for me, or the door that will open for me to be able to work with the family. Latinos like to talk first and get acquainted. We like to feel that we have someone that can understand us. So I like to establish that relationship with the family and to listen from their perspective. Listen to what is happening to them. What are their goals? What are their child rearing perspectives? Usually they are different from Western culture. So I try to use many pieces of the puzzle and not just bring my screening tool.
Wendy: In terms of your screening tools, tell me how you adjust for cultural norm?
Isabella: As I mentioned before, when I ask families about what are the expectations, what are the milestones that they see in their children, many times for example, the child may be one-year-old and maybe is not trying to walk or on the verge of walking. I observe, and I ask as well, that maybe the child did not have that experience of being on the floor or trying to reach to the furniture or things to stand up. It is probably a lack of opportunity that the family has given them. Maybe culturally, you don't put your child on the floor. Because you don't want your child to be dirty. At a certain age, the child is feeding himself. Well, we like to feed our children because we don't want to see the mess. Because it is part of being motherly. In those aspects I try to adjust with my screening tool in terms of looking at what are those differences developmentally, and culturally, for the child.
Wendy: How about when you interact with families and there is more than just mom and dad and the child? How about when there is extended family members?
Isabella: We definitely have to, we are a collective culture, we like to have family around. And it's usually not just one person that makes the decision or takes all the information. So I try to be in touch with the mom to give the information, share that information not only with her but also with the other family members. Of course you have to ask many times. You can do some investigation when you ask the questions. You can ask without even having direct questions. In terms of who feeds the baby, who takes care during the day. You can find out if there's a grandmother or an aunt. Or a sibling that is taking care of the child. So you know those other members are going to be incorporated in your screening or in your activities.
Wendy: How about when you are with the child, say the child you mentioned before, whose mom or caregivers are used to feeding the child. And possibly, according to Western standards, at the time a child should be feeding itself. What do you do in that circumstance? How do you adjust for that?
Isabella: When I go and do a screening and provide information to families, I also bring a developmental screening wheel that is translated into Spanish. What I do is show the family or the mother about what is expected within that age range. We read it together, we look at it together. So the family has an understanding when we talk about what are we looking for. In a very indirect way. I don't want to tell families that this is what the children should be doing. But in a way of getting close and looking at what the child is presently doing, what the family would like for the child to do. And how we can, together, reach that point. But it's always a sharing of information and listening to the families for what they really want for their child. In terms of verbal expression, we look at that, we say talk to your baby, talk to your children. It's a correlation between how much you talk to your child and the outcome of their verbal abilities. But instead of saying, this is what you should do, it's maybe to observe and see if there are opportunities that you can infuse that while you observe child and mother interaction. That is another way of working together.
Suzanne: Thank you. A wonderful set of speakers. We're going to hear from one more person in a second. It relates to the resources. Again, maybe you have been on our calls before and know that we usually try to provide you with a set of resources or references that might enrich the call and expand your knowledge. You have hopefully all received those. One of those was a report hot off the presses. I'm going to ask Teresa Doksum, who is the lead author on that, to tell you a little bit about that report and how it came about and thought it might be helpful to you.
Teresa: Hi, this is Teresa. As I said earlier, we are the national evaluation contractor for the genetics education needs assessment project, which is a five-year cooperative agreement between (unclear) and the March of Dimes. Penny Kyler is the project officer and she said I could speak for her. And also in my hotel room here are two of the national partners in this project. Roxanne Brown and Susan (unclear) who are from the genetic alliance. They are the experts on this project. So the background for the literature reviews that we did is that this project began a couple of years ago. One of the first things you do is find out what has already been done. The purpose of the project is to use community-based strategies to create educational and outreach materials and genetics for underserved communities. To help people make more informed choices about their health. And to ensure that these resources are culturally and linguistically appropriate. So what is unique about this project is that it is a partnership between national consumer advocacy organizations and two communities. One of which is in Washington Heights, New York, the other is in Lansing Michigan. The New York project is focusing on Latinos and Michigan is focusing on African-Americans. Which is why our literature review is only focused on those two populations. But we are working on a publishable manuscript that will include literature on Asian-Americans and Pacific Islanders. There was also a fair amount of literature on that. We're basically doing the background research for the project and produced this report to help those communities. As well as the national partners as they move forward in the project. What they're doing is they are developing local coalitions that also involve the national partners and they are going to be doing needs assessment in their specific communities. They will be developing educational strategies once they analyze the results of the needs assessment. They will implement and evaluate these strategies. Another unique component of this project, and is very important for (unclear), is that the lessons learned from these projects are widely disseminated and replicated in other communities within other organizations. I did this literature and you can read this on your own and it echoes a lot of the same themes that have been brought up by those who are actually trying to do education and outreach in genetics. I want to point out some of the limitations and make a plug for you guys to get your work out there in the published literature. There was not a whole lot out there. This was a ton of work done on how different communities view genetic research. There's a lot less out there on formal evaluations of educational strategies or outreach strategies. There was a fair bit on one-on-one counseling and how to make that more culturally competent. There's a wonderful book by Fisher which had a different chapter on different ethnic groups and discussed the beliefs and the values that need to be taken into consideration by practitioners and clinicians. I want to point you to that resource. If you're interested in culturally competent, one-on-one counseling strategies.
Diana: Do you have a title for that?
Teresa: Hang on a second, it's called Cultural and Ethnic Diversity: A Guide for Genetics Professionals. It's edited by Fisher, N L are the initials. Published by the Johns Hopkins University press 1996.
Suzanne: Thank you. Now for the operator, I think we are ready to open it up for questions. Is the operator there?
Operator: The question and answer session will be held electronically today. You can signal by pressing the star key followed by the digit 1 on your touchtone telephone. A voice prompt on your phone line will indicate when your line is open to ask questions. Please state your name before posing your question. That is star 1 one to ask a question.
We will take our first question.
Questioner: I'm from Tallahassee Florida, I'm both a professional and a parent. I'm challenged, having seen these scenarios from both perspectives, the best way to ask people how to address their cultural or other beliefs and ways to work with them. Some people you can ask out right and others you can't. I think getting started is sometimes a bigger challenge than what happens after that.
Suzanne: So you're asking for suggestions on how to get conversation going?
Isabella: As I mentioned before, I usually try to set a tone of trust and conversation. In general, just asking about the child rearing practices, how do they do things, I gear my questions in general to the family. To have a sense of the values of the family. From there, I get some information and hopefully with my conversation. Not all the time. I am Hispanic and Latino and I speak Spanish. But that does not make me an expert. Not everybody likes me or opens their doors to my conversation. It's always a chance, an opportunity for families to feel their trust.
Suzanne: Wanda or Rabbi Ekstein, do you have any thoughts on talking to different families?
Wanda: That's a hard thing to do and I do a lot of my correspondence over the phone. You can kind of tell by their greeting. If the greeting is in Navajo, then you know you're in trouble. Or if it's in one of the Pueblo languages. When you're talking to the mother, you can glean from them but just broad, general questions. How are you feeling about this? Can you tell me a little bit about yourself? Just to get a feel. What physician are you taking the baby to? Where are you getting the well baby care? From that you can glean a lot. A lot of what we do, it's interesting that Indian Health Service has a whole new initiative regarding integrating a lot of traditional native medicine into the biomedical model. So I think from those two health systems blending together, there's a lot to learn. One of the first things, I was asked to give a little conference with our local public health officers who were having problems building relationships and rapport with our Native American clients. One of the things that we used to tell our practitioners, it takes time. It takes time to build trust. People can sense when you're in a hurry. So with that, Native Americans will interpret it as a negative experience. A negative healthcare experience if the practitioner is rushing and looks hurried. A lot of that interprets into the culture as a negative experience. This man or woman is causing me to have these problems. There's a lot of that number one taboo. Takes a long time to build trust. There are certain things you can do, in a Navajo way, you shake hands real lightly. You make eye contact very brief and then you look away. They believe if you stare them in the eye, you're looking into their soul. So there are certain things you learn along the way. One of the things is knowing your culture group. You have to do a quick assessment to see how compliant they are with their culture group. You could have a young Native American come into the clinic that does not believe in traditional medicine. And that is fine too. Building trust and rapport with the family. The entire extended family. Going to the clinics is real family adventure. Especially here in New Mexico. Everybody goes to the clinic on the same day. Because of the social economic status, people are poor, you try to carpool into the rural mountainous areas and into the city for their healthcare.
Suzanne: The take away message is that some of it is coming from a sense of understanding Western culture approach, which is let's get right into it, let's ask a lot of questions. That is not what is going to work for many backgrounds. It really is more this conversational, giving it time.
Wanda: With a lot of the native tribes, asking a lot of questions is prying. So you can go around tangentially with your good interview skills. Open-ended questions.
Suzanne: Do we have another question?
Questioner: This is Dawn Levinson from (unclear). I have a question. I am wondering how critical you feel it is for a successful outcome to have a provider or counselor of the same cultural, racial or ethnic background as the client?
Suzanne: Who would like to take that?
Wanda: I'll take a stab at that. There's good and there's bad in terms of being the bearer of bad news. We see this a lot when I used to work for Indian Health Service, clinicians being from the community and being the bearer of bad news. Everytime that client comes back, they always associate that as a negative consequence. Let's say it was a bad pregnancy or a bad outcome. You see that a lot. What I have seen is that with our native practitioners, lots of times they will go work in another Native American community but not necessarily their own. I'll give you an example. I was just down in Santo Domingo, went yesterday and there was a Navajo practitioner practicing with the Pueblo. It's tough psychologically and socially on native practitioners to practice in their own communities. You get a high rate of burnout and it's hard to retain them. This might have implications for mainstream America.
Rabbi: Number one, there's no one straight answer question for both questions asked before. As the previous speaker, I have difficulty remembering names, just mentioned, there are some things which are very uncomfortable to say, bad news. There are other types of counseling when you need to explain the problem to a person and if you don't understand the background of the person, then you don't know how to talk to them. So it's very important, before you counsel somebody, you should know his background, his cultural beliefs, and so on. The community and every family is different. You cannot make a straight, this is how you do it and here is the exact recipe to talk to them. Even in the Western community, I understand there are different people and different attitudes and you have to know and be smart enough when you see someone to learn how to talk to them. You start slowly and use common sense and find out what you have to do.
Suzanne: Do we have time for one more? Is there another question?
Operator: There are no further questions.
Suzanne: Wendy, I’ll turn it back to you.
Wendy: Thanks, Suzanne. We wanted to thank everyone for there participation. Speakers, federal guests, and participants from a range of states. If I name the states it could take up the rest of our time. But just quickly, North Dakota, Maryland, Missouri Utah, Maine, Nebraska, Washington State and DC, California, Illinois, Tennessee, Iowa, New York, New Jersey, Ohio, Rhode Island, Louisiana, Vermont, Kentucky, Missouri, Texas, Hawaii and India. We are so pleased for all the numbers of people who registered for the call, 120, with almost an equal number for the replay. We are glad to be able to offer that option, as well as the transcript, which will be posted on the web site. So we will thank Viable Technologies for also being on the line and doing such a great job of transcription. I would like to speak briefly about the evaluation forms. You will notice the evaluation form, which came as an attachment, has a separate fax number. It's not the National Center for Cultural Competence. It is Public Research and Evaluation Service or PRES. PRES is helping us with evaluation of all NCCC project activities. So if you would please complete the evaluation form and fax it back to Dr. Harrison at 313-535-8460, we would appreciate it. We will take the information and feedback that you give us and use it to improve the remaining two topical conference calls. Diana, do you have a closing remark?
Diana: I would like to thank all of our speakers, all of our participants and the NCCC and in closing, just to let you know that Iowa is involved in something with trying to work with the Mexican government. In terms of the healthcare that has been provided before people immigrated to Iowa. There is a national program which is trying to get immunization records from Mexico into the United States. I would also like to give a special thank you to Penny Kyler for helping us identify speakers for the call.
Suzanne: Thank you all and thank you from all of us who are speakers. And for all that you are doing. I will say good afternoon to all of you and goodbye.