The Effectiveness of Sickle Cell Education in New York City Public Elementary Schools Edward Brown, MPA, Hester Dowdy, Fred Rosner, MD, FACP, and Lynn St. Clair, BS Jamaica, New York
The present study attempts to ascertain the effectiveness of the health education component of the Queens Hospital Center Sickle Cell Education & Screening Program. The study is limited to children in grades four through six in the New York City public school system. Such elementary school students, representing a large segment of the population, are easily accessible and can be effectively educated about sickle cell disease. The findings indicate that professional sickle cell educators can successfully teach young children about the disease and can do so more effectively than the average schoolteacher. The goals of sickle cell anemia and sickle cell trait-education are to create an informed public by providing accurate data, to convey an understanding of the genetic mechanism responsible for sickle cell disease, and to correct or dispel misconceptions about the anemia and the trait.
Children are a captive audience because they are in school. Dissemination of sickle cell information to this group provides a broad-based approach to health education. The information may stimulate and motivate children to want to know about themselves and their health.
Materials and Methods
Presented at the National Conference of Screening & Education Clinics & Comprehensive Sickle Cell Centers, New Orleans, Louisiana, November 9-12, 1977. From the Sickle Cell Disease Screening & Education Program, Queens Hospital Center, Affiliation of the Long Island Jewish-Hillside Medical Center and the Health Sciences Center, State University of New York at Stony Brook. Requests for reprints should be addressed to Dr. Fred Rosner, Director of Hematology, Queens Hospital Center Affiliation of the Long Island Jewish-Hillside Medical Center, 82-68 164th St, Jamaica, NY 11432.
The usual method of education employed in the schools is a 30-minute illustrated lecture using specially prepared slides, followed by a 15-minute discussion period. Sometimes a blackboard is used instead of slides. The presentation includes basic information concerning the nature and function of hemoglobin. A clear distinction is made between homozygous sickle cell anemia and heterozygous sickle cell trait. The signs and
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
symptoms of the former are described and the essentially harmless nature of sickle cell trait is pointed out. The statistical occurrence of the trait is mentioned. The genetics of sickle cell anemia and trait are explained using several techniques, including Punnet's squares. Comparison is made to other inherited characteristics such as eye color, height, hair texture, etc. The probabilities of genetic transmission of the sickle cell trait and disease are explained, and various measures for dealing with the overall problem of the disease are discussed. In addition, a fact sheet containing accurate basic educational information on sickle cell trait and anemia is distributed (Table 1). For the study itself, a questionnaire was devised specifically for children in the fourth, fifth, and sixth grades who are between 9 and 12 years of age (Table 2). The questions were carefully selected and included inquiries concerning the etiology, the effect, and the transmission of sickle cell disease. The questionnaire was brief, so that responding to it was not a burden for the child. The questions were aimed at gathering information concerning the understanding and retention of facts about the heterozygous and homozygous sickle cell states. In order to insure confidentiality, children were asked NOT to write their names on the questionnaire. 571
We chose six schools where we had previously carried out educational and screening events between four and ten months earlier. In four of the six schools we gave intensive sickle cell education to the teachers who, in turn, devoted one class period of 45 minutes to an educational presentation and discussion of sickle cell disease in their respective classes. In the other two schools, the professional health educators of our sickle cell program directly taught the children. The distribution of the classes in the six schools is shown in Table 3. Four hundred and fifty-five students from 18 classes filled out questionnaires.
Results Because the number of students in each class was rather small, the results were combined for each grade level. There were only minor differences in the number of correct responses to the questionnaire between the fourth, fifth, and six grades. However, there were apparent differences between the schools in which the teachers, after prior intensive training by the sickle cell staff, taught the children, and those schools where the sickle cell staff themselves directly educated the children. Question 1, concerning the identification of hemoglobin, was correctly answered by 86 percent of the children when staff members of our sickle cell program directly educated them but by only 76 percent when schoolteachers served as the educators. A similar difference was noted in response to the statement "we inherit our hemoglobin type from both parents," and in the next question, more than twice as many children knew that sickle cell trait does not turn into sickle cell anemia. Similarly, a much higher frequency of correct responses was obtained in the next three questions, which deal with general information about sickle cell anemia and sickle cell trait. Seventy percent of children educated directly by sickle cell program staff but only 43 percent of children educated by their teachers knew that a person does not 572
Table 1, Fact Sheet on Sickle Cell Trait and Anemia
Sickle cell anemia is an inherited (ie, genetic) disorder of the hemoglobin (red material which carries oxygen) within the red blood cells. In individuals with sickle cell anemia, the red blood cells tend to change from their normal round shape to a sickle shape. If you inherit this genetic characteristic from one parent, you have sickle cell trait, If you inherit this genetic characteristic from both parents, you have sickle cell anemia. Sickle cell trait does not develop into sickle cell anemia. If both parents have sickle cell trait, each time a child is born there is a 25 per cent chance the child may have sickle cell anemia. People who have sickle cell anemia may experience severe pain from time to time. This is called a crisis. Sickle cell anemia is usually diagnosed during infancy or eqrly childhood. If you are an adult, it is extremely unlikely that you have unrecognized sickle cell anemia. Sickle cell anemia may shorten an individual's life. At present there is no cure for sickle cell anemia but it can be treated. Sickle cell trait is not a disease. People with the trait have no symptoms. You cannot know whether or not you have sickle cell trait unless you take a simple blood test. Approximately 1 out of every 12 Black Americans has sickle cell trait. Approximately 1 out of every 40 Hispanic Americans has sickle cell trait. Sickle cell trait and sickle cell anemia appear to a lesser extent in other ethnic groups such as Italians, Greeks, Turks, Arabs, East Indians, and South Americans. All persons-especially those in the above-mentioned ethnic groups-in the child-bearing age should take the test to find out whether they have sickle cell trait.
give sickle cell anemia to his friends. Sixty-six percent of children in the former group but only 43 percent in the latter knew that a child with sickle cell trait can play and have fun like other children. Sixty-five percent of children in the former group but only 48 percent in the latter knew that, in most cases, sickle cell trait will not make you sick. The greatest difference between the two groups was noted in a question dealing with the genetic transmission of sickle cell disease. More than three times as many children in the former group, the group directly educated by the sickle cell staff, compared to the other group, correctly answered as false the statement that parents with normal hemoglobin can have children with sickle cell anemia.
Some questions were equally well answered by both groups of children. For example, more than 80 percent of children in both groups recognized as false the statement that "a person with sickle cell anemia has the same type of hemoglobin as a normal person," and the same percentage correctly recognized as false the statement that "only black people have sickle cell trait." In each school and in each class, fact sheets on sickle cell trait and sickle cell anemia were distributed. To assess the impact of the fact sheet on each child, an additional question was placed on the questionnaire which asked the children whether or not they read the fact sheet. The results were somewhat startling but very informative (Table 4). In schools A, B, C, and
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
Table 2. Questionnaire (For Grades 4-6) Check Correct Answers 1. Hemoglobin is a substance in the red blood cell that carries oxygen and makes the cell red.
TRUE
FALSE_
2. A person with sickle cell anemia has the same type of hemoglobin as a normal person. FALSE_ TRUEE 3. We inherit our hemoglobin type from both parents.
TRUEE
4. 5. 6. 7.
8. 9.
FALSE_ Sickle cell trait can turn into sickle cell anemia FALSE_ TRUEE A person with sickle cell anemia can give it to his friends. FALSE TRUE A child with sickle cell trait can play and have fun like other children. FALSE_ TRUEE In most cases sickle cell trait will not make you sick. FALSE_ TRUE Parents with normal hemoglobin can have children with sickle cell anemia. FALSE_ TRUE If both parents have sickle cell trait there is a 1 in 4 chance that the children will have sickle cell anemia.
TRUE FALSE_ 10. Only black people have sickle cell trait. FALSE_ TRUE
D, the teachers educated the children and distributed the fact sheets. In schools E and F, the sickle cell staff directly educated the children. In school A, about one half of the children read the fact sheet. In schools B and C, nearly all the children read the fact sheet but in school D, only 27 percent read the fact sheet. We interpret these major differences to represent different and varying degrees of enthusiasm on the part of the teachers when they present the materials to the students, or incomplete or even total lack of distribution of the fact sheets. In school E, where our sickle cell program staff directly educated the children and where the children correctly answered most of the questions on the questionnaire, only 19 percent said that they read the fact sheet. We later learned that many of the children never received the fact sheet. Hence, we have increased our efforts to insure proper distribution and reading of the sheets.
Discussion It seems apparent from our study that general information about sickle cell disease, such as its non-contagious nature, its racial characteristics, the difference between the trait and the anemia, the definition of hemoglobin and the essential harmlessness of sickle cell trait is well understood and assimilated by elementary school children in grades 4, 5, and 6. This is reflected in the approximately 80 percent correctness of responses to questions about these subjects if the children were educated by staff of the sickle cell program. There were fewer correct answers if the teachers, following intensive training by sickle cell staff, then educated the children about sickle cell disease. Since the children received the questionnaires four to ten months after the educational event, the information about sickle cell disease was remembered by them for at least that period of time.
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
However, far fewer children correctly answered questions dealing with the genetics and probabilities of transmission of sickle cell trait and sickle cell anemia. Is our method of imparting the genetic information not appropriate? Is the method appropriate but the concepts too difficult to be grasped by young children in the 9 to 12-year age group? The latter possibility seems the more likely one. In an earlier study on genetic counseling, we found that only about 70 percent of adult clients correctly answered questions dealing with the genetics of sickle cell disease. Perhaps we should reconsider the need to provide specific genetic information to all clients and should concentrate on those who need this type of information the most, such as teenagers, premarital clients, and those married couples desirous of having children. General information about sickle cell disease and trait should certainly be provided to everybody. 573
Table 3. Distribution of Students in Six Schools Where the Questionnaire (Table 2) was Administered
Grade Level
Number of Students
School
Grades
5 4 4
23 27 26
5 5 6
23 23 26
A B C D
4,4,5 5,6,5 5,5,5 4,6,5
C
5 5 5
28 20 23
E F
4,5,6 4,4,5
D
4
6 5
27 28 36
E
6 5 4
32 26 20
F
5 4 4
18 27 22
6
4-6
455
School A
B
Total
We have also learned something about the sickle cell fact sheets which are distributed at nearly all sickle cell educational events. Not everybody reads the fact sheets. Not everybody necessarily receives a fact sheet. In our school-children population, the reading of the fact sheet is related to its distribution and the enthusiasm with which it is presented. There appears to be little relationship between the reading of the fact sheet and the ability to correctly answer our questions about sickle cell disease. This observation may mean that the educational effort itself, even without the fact sheet, was very effective in imparting the information, or that the children had previous knowledge about sickle cell disease, whether or not they read the fact sheet. Our findings are in agreement with the results of a study performed at the Center for Sickle Cell Disease at Howard University by Dr. Robert F. Murray, Jr., and his colleagues. Dr. Murray's test was multiple choice, was administered weeks to months following the sessions, and the evaluation followed counseling sessions. Dr. Murray found that persons with a high school 574
Table 4. Percentage of Children who Read the Fact Sheet (Table 1) about Sickle Cell Trait and Anemia Number of Students
education or above retain, on the average, at least 70 percent of the essential facts that are presented to them.* Our study shows that this observation is also true of grade school children. Our study, as well as the study at Howard University, demonstrated that the concepts of inheritance and recurrent risk are most difficult to transmit. This is just the beginning, however. We have already embarked on another study in the high schools of New York City. We have revised the questionnaire to eliminate ambiguities. We have also begun testing the student's knowledge of sickle cell disease prior to our educational effort. Many more studies of this nature could and probably should be carried out to answer the following types of questions: What has been the impact of education and screening and genetic counseling for sickle cell disease? Has it been effective? What has it accomplished? What does the general population know about sickle cell disease? What did they know three or four years ago? Have they been exposed to sickle cell education? How do they react to it? Do they feel better having some knowledge about sickle cell which they didn't have before? How has such knowledge changed their lives, if at all? What methods of education are most effective? Is a movie about sickle cell disease preferable to a lecture? How does an illustrated slide presentation compare in effectiveness to simple distribution of a fact sheet? Does the size of the audience or the type of audience
70 56 78 67 72
62
Yes
No
49% 84% 91% 27%
51% 16% 9% 73%
19% 71%
81% 29%
affect the effectiveness of a sickle cell educational presentation? What have been the positive (and negative) effects, if any, of sickle cell education, screening and genetic counseling on the general population, on society, and on "the establishment"? What impact have such efforts had on federal, state and local funding for sickle cell activities? For the most part, these are still unanswered questions. We have made an initial attempt to get some answers. We hope others will follow suit.
Conclusions Our conclusions from this study are as follows: 1. Professional sickle cell staff can more effectively educate elementary school children about sickle cell disease than the average schoolteacher. 2. Children remernber the information from an educational presentation for at least four months. 3. The reading of the fact sheet relates to its distribution and the enthusiasm with which it is presented. There appears to be little relationship between the reading of the fact sheet and the ability to correctly answer questions about sickle cell disease. 4. Elementary school students (grades 4 to 6) representing a large segment of the population, are easily accessible and can be effectively educated about
sickle cell disease.
Acknowledgement *Personal communications, December 28, 1976, and February 2, 1978.
Supported by Contract #240-76-0032 from the Health Services Administration, Department of Health, Education & Welfare.
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
The present study attempts to ascertain the effectiveness of the health education component of the Queens Hospital Center Sickle Cell Education & Screening Program. The study is limited to children in grades four through six in the New York City public school system. Such elementary school students, representing a large segment of the population, are easily accessible and can be effectively educated about sickle cell disease. The findings indicate that professional sickle cell educators can successfully teach young children about the disease and can do so more effectively than the average schoolteacher. The goals of sickle cell anemia and sickle cell trait-education are to create an informed public by providing accurate data, to convey an understanding of the genetic mechanism responsible for sickle cell disease, and to correct or dispel misconceptions about the anemia and the trait.
Children are a captive audience because they are in school. Dissemination of sickle cell information to this group provides a broad-based approach to health education. The information may stimulate and motivate children to want to know about themselves and their health.
Materials and Methods
Presented at the National Conference of Screening & Education Clinics & Comprehensive Sickle Cell Centers, New Orleans, Louisiana, November 9-12, 1977. From the Sickle Cell Disease Screening & Education Program, Queens Hospital Center, Affiliation of the Long Island Jewish-Hillside Medical Center and the Health Sciences Center, State University of New York at Stony Brook. Requests for reprints should be addressed to Dr. Fred Rosner, Director of Hematology, Queens Hospital Center Affiliation of the Long Island Jewish-Hillside Medical Center, 82-68 164th St, Jamaica, NY 11432.
The usual method of education employed in the schools is a 30-minute illustrated lecture using specially prepared slides, followed by a 15-minute discussion period. Sometimes a blackboard is used instead of slides. The presentation includes basic information concerning the nature and function of hemoglobin. A clear distinction is made between homozygous sickle cell anemia and heterozygous sickle cell trait. The signs and
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
symptoms of the former are described and the essentially harmless nature of sickle cell trait is pointed out. The statistical occurrence of the trait is mentioned. The genetics of sickle cell anemia and trait are explained using several techniques, including Punnet's squares. Comparison is made to other inherited characteristics such as eye color, height, hair texture, etc. The probabilities of genetic transmission of the sickle cell trait and disease are explained, and various measures for dealing with the overall problem of the disease are discussed. In addition, a fact sheet containing accurate basic educational information on sickle cell trait and anemia is distributed (Table 1). For the study itself, a questionnaire was devised specifically for children in the fourth, fifth, and sixth grades who are between 9 and 12 years of age (Table 2). The questions were carefully selected and included inquiries concerning the etiology, the effect, and the transmission of sickle cell disease. The questionnaire was brief, so that responding to it was not a burden for the child. The questions were aimed at gathering information concerning the understanding and retention of facts about the heterozygous and homozygous sickle cell states. In order to insure confidentiality, children were asked NOT to write their names on the questionnaire. 571
We chose six schools where we had previously carried out educational and screening events between four and ten months earlier. In four of the six schools we gave intensive sickle cell education to the teachers who, in turn, devoted one class period of 45 minutes to an educational presentation and discussion of sickle cell disease in their respective classes. In the other two schools, the professional health educators of our sickle cell program directly taught the children. The distribution of the classes in the six schools is shown in Table 3. Four hundred and fifty-five students from 18 classes filled out questionnaires.
Results Because the number of students in each class was rather small, the results were combined for each grade level. There were only minor differences in the number of correct responses to the questionnaire between the fourth, fifth, and six grades. However, there were apparent differences between the schools in which the teachers, after prior intensive training by the sickle cell staff, taught the children, and those schools where the sickle cell staff themselves directly educated the children. Question 1, concerning the identification of hemoglobin, was correctly answered by 86 percent of the children when staff members of our sickle cell program directly educated them but by only 76 percent when schoolteachers served as the educators. A similar difference was noted in response to the statement "we inherit our hemoglobin type from both parents," and in the next question, more than twice as many children knew that sickle cell trait does not turn into sickle cell anemia. Similarly, a much higher frequency of correct responses was obtained in the next three questions, which deal with general information about sickle cell anemia and sickle cell trait. Seventy percent of children educated directly by sickle cell program staff but only 43 percent of children educated by their teachers knew that a person does not 572
Table 1, Fact Sheet on Sickle Cell Trait and Anemia
Sickle cell anemia is an inherited (ie, genetic) disorder of the hemoglobin (red material which carries oxygen) within the red blood cells. In individuals with sickle cell anemia, the red blood cells tend to change from their normal round shape to a sickle shape. If you inherit this genetic characteristic from one parent, you have sickle cell trait, If you inherit this genetic characteristic from both parents, you have sickle cell anemia. Sickle cell trait does not develop into sickle cell anemia. If both parents have sickle cell trait, each time a child is born there is a 25 per cent chance the child may have sickle cell anemia. People who have sickle cell anemia may experience severe pain from time to time. This is called a crisis. Sickle cell anemia is usually diagnosed during infancy or eqrly childhood. If you are an adult, it is extremely unlikely that you have unrecognized sickle cell anemia. Sickle cell anemia may shorten an individual's life. At present there is no cure for sickle cell anemia but it can be treated. Sickle cell trait is not a disease. People with the trait have no symptoms. You cannot know whether or not you have sickle cell trait unless you take a simple blood test. Approximately 1 out of every 12 Black Americans has sickle cell trait. Approximately 1 out of every 40 Hispanic Americans has sickle cell trait. Sickle cell trait and sickle cell anemia appear to a lesser extent in other ethnic groups such as Italians, Greeks, Turks, Arabs, East Indians, and South Americans. All persons-especially those in the above-mentioned ethnic groups-in the child-bearing age should take the test to find out whether they have sickle cell trait.
give sickle cell anemia to his friends. Sixty-six percent of children in the former group but only 43 percent in the latter knew that a child with sickle cell trait can play and have fun like other children. Sixty-five percent of children in the former group but only 48 percent in the latter knew that, in most cases, sickle cell trait will not make you sick. The greatest difference between the two groups was noted in a question dealing with the genetic transmission of sickle cell disease. More than three times as many children in the former group, the group directly educated by the sickle cell staff, compared to the other group, correctly answered as false the statement that parents with normal hemoglobin can have children with sickle cell anemia.
Some questions were equally well answered by both groups of children. For example, more than 80 percent of children in both groups recognized as false the statement that "a person with sickle cell anemia has the same type of hemoglobin as a normal person," and the same percentage correctly recognized as false the statement that "only black people have sickle cell trait." In each school and in each class, fact sheets on sickle cell trait and sickle cell anemia were distributed. To assess the impact of the fact sheet on each child, an additional question was placed on the questionnaire which asked the children whether or not they read the fact sheet. The results were somewhat startling but very informative (Table 4). In schools A, B, C, and
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
Table 2. Questionnaire (For Grades 4-6) Check Correct Answers 1. Hemoglobin is a substance in the red blood cell that carries oxygen and makes the cell red.
TRUE
FALSE_
2. A person with sickle cell anemia has the same type of hemoglobin as a normal person. FALSE_ TRUEE 3. We inherit our hemoglobin type from both parents.
TRUEE
4. 5. 6. 7.
8. 9.
FALSE_ Sickle cell trait can turn into sickle cell anemia FALSE_ TRUEE A person with sickle cell anemia can give it to his friends. FALSE TRUE A child with sickle cell trait can play and have fun like other children. FALSE_ TRUEE In most cases sickle cell trait will not make you sick. FALSE_ TRUE Parents with normal hemoglobin can have children with sickle cell anemia. FALSE_ TRUE If both parents have sickle cell trait there is a 1 in 4 chance that the children will have sickle cell anemia.
TRUE FALSE_ 10. Only black people have sickle cell trait. FALSE_ TRUE
D, the teachers educated the children and distributed the fact sheets. In schools E and F, the sickle cell staff directly educated the children. In school A, about one half of the children read the fact sheet. In schools B and C, nearly all the children read the fact sheet but in school D, only 27 percent read the fact sheet. We interpret these major differences to represent different and varying degrees of enthusiasm on the part of the teachers when they present the materials to the students, or incomplete or even total lack of distribution of the fact sheets. In school E, where our sickle cell program staff directly educated the children and where the children correctly answered most of the questions on the questionnaire, only 19 percent said that they read the fact sheet. We later learned that many of the children never received the fact sheet. Hence, we have increased our efforts to insure proper distribution and reading of the sheets.
Discussion It seems apparent from our study that general information about sickle cell disease, such as its non-contagious nature, its racial characteristics, the difference between the trait and the anemia, the definition of hemoglobin and the essential harmlessness of sickle cell trait is well understood and assimilated by elementary school children in grades 4, 5, and 6. This is reflected in the approximately 80 percent correctness of responses to questions about these subjects if the children were educated by staff of the sickle cell program. There were fewer correct answers if the teachers, following intensive training by sickle cell staff, then educated the children about sickle cell disease. Since the children received the questionnaires four to ten months after the educational event, the information about sickle cell disease was remembered by them for at least that period of time.
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
However, far fewer children correctly answered questions dealing with the genetics and probabilities of transmission of sickle cell trait and sickle cell anemia. Is our method of imparting the genetic information not appropriate? Is the method appropriate but the concepts too difficult to be grasped by young children in the 9 to 12-year age group? The latter possibility seems the more likely one. In an earlier study on genetic counseling, we found that only about 70 percent of adult clients correctly answered questions dealing with the genetics of sickle cell disease. Perhaps we should reconsider the need to provide specific genetic information to all clients and should concentrate on those who need this type of information the most, such as teenagers, premarital clients, and those married couples desirous of having children. General information about sickle cell disease and trait should certainly be provided to everybody. 573
Table 3. Distribution of Students in Six Schools Where the Questionnaire (Table 2) was Administered
Grade Level
Number of Students
School
Grades
5 4 4
23 27 26
5 5 6
23 23 26
A B C D
4,4,5 5,6,5 5,5,5 4,6,5
C
5 5 5
28 20 23
E F
4,5,6 4,4,5
D
4
6 5
27 28 36
E
6 5 4
32 26 20
F
5 4 4
18 27 22
6
4-6
455
School A
B
Total
We have also learned something about the sickle cell fact sheets which are distributed at nearly all sickle cell educational events. Not everybody reads the fact sheets. Not everybody necessarily receives a fact sheet. In our school-children population, the reading of the fact sheet is related to its distribution and the enthusiasm with which it is presented. There appears to be little relationship between the reading of the fact sheet and the ability to correctly answer our questions about sickle cell disease. This observation may mean that the educational effort itself, even without the fact sheet, was very effective in imparting the information, or that the children had previous knowledge about sickle cell disease, whether or not they read the fact sheet. Our findings are in agreement with the results of a study performed at the Center for Sickle Cell Disease at Howard University by Dr. Robert F. Murray, Jr., and his colleagues. Dr. Murray's test was multiple choice, was administered weeks to months following the sessions, and the evaluation followed counseling sessions. Dr. Murray found that persons with a high school 574
Table 4. Percentage of Children who Read the Fact Sheet (Table 1) about Sickle Cell Trait and Anemia Number of Students
education or above retain, on the average, at least 70 percent of the essential facts that are presented to them.* Our study shows that this observation is also true of grade school children. Our study, as well as the study at Howard University, demonstrated that the concepts of inheritance and recurrent risk are most difficult to transmit. This is just the beginning, however. We have already embarked on another study in the high schools of New York City. We have revised the questionnaire to eliminate ambiguities. We have also begun testing the student's knowledge of sickle cell disease prior to our educational effort. Many more studies of this nature could and probably should be carried out to answer the following types of questions: What has been the impact of education and screening and genetic counseling for sickle cell disease? Has it been effective? What has it accomplished? What does the general population know about sickle cell disease? What did they know three or four years ago? Have they been exposed to sickle cell education? How do they react to it? Do they feel better having some knowledge about sickle cell which they didn't have before? How has such knowledge changed their lives, if at all? What methods of education are most effective? Is a movie about sickle cell disease preferable to a lecture? How does an illustrated slide presentation compare in effectiveness to simple distribution of a fact sheet? Does the size of the audience or the type of audience
70 56 78 67 72
62
Yes
No
49% 84% 91% 27%
51% 16% 9% 73%
19% 71%
81% 29%
affect the effectiveness of a sickle cell educational presentation? What have been the positive (and negative) effects, if any, of sickle cell education, screening and genetic counseling on the general population, on society, and on "the establishment"? What impact have such efforts had on federal, state and local funding for sickle cell activities? For the most part, these are still unanswered questions. We have made an initial attempt to get some answers. We hope others will follow suit.
Conclusions Our conclusions from this study are as follows: 1. Professional sickle cell staff can more effectively educate elementary school children about sickle cell disease than the average schoolteacher. 2. Children remernber the information from an educational presentation for at least four months. 3. The reading of the fact sheet relates to its distribution and the enthusiasm with which it is presented. There appears to be little relationship between the reading of the fact sheet and the ability to correctly answer questions about sickle cell disease. 4. Elementary school students (grades 4 to 6) representing a large segment of the population, are easily accessible and can be effectively educated about
sickle cell disease.
Acknowledgement *Personal communications, December 28, 1976, and February 2, 1978.
Supported by Contract #240-76-0032 from the Health Services Administration, Department of Health, Education & Welfare.
JOURNAL OF THE NATIONAL MEDICAL ASSOCIATION, VOL. 70, NO. 8, 1978
