Sickle Cell Anemia

The results for this research have been presented in a one primary division. In this division is the group of the pregnant females with sickle cell disease; this category describes the relevant population characteristics of the females informants who were interviewed coupled with their perceptions in regard to the disease. The perception considered in this study was in how the disease affects the working and school activities, the effects of the disease on the relationships between the respondent and others, the expectations of transitioning and the expectation of the future. 

Pregnant Females with the Sickle Cell Disease

Demographic Characteristics

The population characteristics of 10 pregnant respondents with the disease who took part in the research are included in table 1.

Although the sickle cell disease mainly affects both gender equally, the current study concentrated on the pregnant females who are at the reproduction age. The respondents ranged in the age between 13 years and 55 years, although most of the respondents who completed the interview had an average of 25.4 years and slightly older females’ respondents as compared with younger respondents. Majority of the respondents n = 10 (100%) identified themselves African American. These percentages were almost the same as those of general demography of the disease in Mississippi, which is estimated to be 95% percent as African American, 3 % as Latino, 1% from multiracial while the reminder 1% from other races. All the interviews were carried out in English. Most of the interviewees n=8 (80%) stated that they at least knew something about the traits of sickle cell disease; they did know either the traits of hemoglobin, sickle cell anemia. Most of the respondent associated the disease with its possibility of being passed from parents to child genetically, while the n=2 (20%) of the respondents were not aware of the kind of disease they had.

From the respondents, all respondents were African American where, n=9 (90%) of them were single, while only one respondent was married. Those who had less than high school level of education up to high school were n=6 (60%). The low levels of education seem to be significant since almost two third of the respondents had gone up to high school, and only 20% of the population of the respondent indicated a higher level of education up to four years in college. The above low levels of educations among the African American can be attributed to the economic status, since all the respondents n=10 (100%) indicated their earning to be less than $50,000 per annum. More than two third of the respondent were either unemployed or, they were still in college. From the table 1, 50% of the respondent had no formal employment as compared to 30 percent of the respondent who indicated that they were in formal education it is only 10 percent of them who were in college, while n=1 (10%) declined to respond to the question regarding occupation status. In connection to the religious affiliation, n=8 (80%) of the respondent indicated to be affiliated to religions, where majority of them were Christian, 20 percent of the respondent did not any affiliation to religion.      

Other researches have been conducted on the prevalence of the sickle cell disease among African American. According to result obtained in one of the researches, SCD is believed to be affecting 1 out of 500 African American individuals at birth. It is further estimated that there are more than 50,000 African Americans who have the sickle cell traits or the sickle cell disease. The sickle cell disease is believed to be as a result of genetic disorder that affect the individual’s hemoglobin a result that might have deleterious outcomes on a the life of an individual.

The sub-theme, on the respondent’s level of knowledge concerning the sickle cell disease. The level of information regarding the awareness of characteristics of the sickle cell differs significantly among the African American females who respondent to this question; there was approximately a fifth of the respondents who claimed that there had vague knowledge concerning the traits of the condition. On the other hand, n=8 (80 percent) of the respondent portrayed some knowledge concerning the traits, where majority associated the condition to genes and give an explanation on who these traits could be passed  from mother to the unborn baby through genes (genetically acquired traits). Among the respondent, who indicated to have some levels of knowledge regarding the condition (sickle cell) traits, they had obtained this information from the medical professional as one of the respondents indicated during the interview:

Q. Tell me what you know about sickle cell trait. 

Participant:  Well actually I just found out a little while back about this … I had a lack of knowledge about it …but uh…I do know that having the sickle cell trait…I am a carrier and I can pass this down … so I do know that I am a carrier and I have to be aware of that I am a carrier.

Q. You say you just found out about this….What do you mean by that?

Participant:  When I got pregnant, they tested me for sickle cell and told me I had sickle cell trait.

You say “they” tested you for sickle cell trait…Who is they?

Participant:  My doctor

 For those respondents who associated the traits to the genes and the possibilities of passing these genes to their unborn babies they had the following to say:

Participant 002

1. Tell me what you know about sickle cell trait. 

Participant:  If the mother has it, she may be able to pass it on to her partner or her baby.

Participant 003

1. Tell me what you know about sickle cell trait. 

Participant:  The trait is not the whole disease.  It’s just you know….your just a carrier of the trait…If you were to meet someone with the trait also there is a fifty percent chance you will have a baby with the full blown sickle cell disease.

On the other hand, there were some respondents who felt that they knew little about sickle cell trait or the idea they had been not quite related to the characteristics of the condition. The individuals in this category were only 20% percent of the participants. The two responses that they gave are highlighted below.

Participant:  001

Q. Tell me what you know about sickle cell trait.

Participant:    nothing.

Do you have sickle cell trait

Participant:  yes

You don’t know anything about it?

I just know my baby may get sickle cell.

Theme on the knowledge about the characteristics of the sickle cell condition seems to be well understood among the respondent with n=10 (100%) of the participant having substantial knowledge about the genetic acquisition of the condition which could happen to the unborn babies in respect to the respondents. Looking into the responses for the second theme regarding the knowledge pertaining the sickle cell disease

From the question, n=3 (30 percent) of the respondents attributed the disease to the genes, stating that the disease could be genetically acquired. For example, in response to the question number 2 the respondent 004 had the following to say:

Q. Tell me what you know about sickle cell disease.

Participant:  Sickle cell disease…um…if I am correct….um…. it’s when the person with the sickle cell trait ….say for instance right now, I am pregnant, and my child, if my partner has sickle cell trait, and I have the sickle cell trait, then we can pass that on to my child to have the sickle cell disease …isn’t that when both parents can pass it to the child.

That is correct.

There are other respondents n=2 (20 percent) who based their knowledge about sickle cell disease on the causes of hemoglobin. One of the respondents, who explained his knowledge from this point of view, stated that:

Participant 009

Tell me what you understand about sickle cell disease.

Participant:  I know it’s when your blood cells are shaped like half-moons and they get caught up on each other and cause blood clots.

While,

Participant 003

Q. Tell me what you know about sickle cell disease. 

Participant:  Sickle cell disease is a disease that causes sickling of the cells that makes it hard for them to go through the capillaries…um…the hemoglobin that attaches to the cell is low because it’s sickle-shaped.

Contrary to these results from the Mississippi, research works from elsewhere in the world indicates women suffering from sickle cell disease can have a successful pregnancy and a healthy baby. However, such a woman is required to be extra careful in avoidance of problems during the pregnancy, which can affect both the health of the mother and that of the unborn baby. The disease is severe, and the pains episodes may be frequent for women suffering from sickle cell disease. Further, researches indicate that due to this condition in pregnant women, there is a high risk of pre-term labor and low-birth weight of the newborn babies. However, with significant prenatal care and monitoring during pregnancy, women suffering from sickle cell disease or sickle cell traits have a high probability of having a health pregnancy. It should be noted that, during prenatal care, there are tests that can be conducted to establish if the unborn babies will acquire sickle cell traits, sickle cell disease, or neither one. These tests are conducted during the second month of pregnancy. Females with sickle cell traits or disease are supposed to consult a genetic counselor and seek more information regarding the disease and the probabilities that they might pass these traits to their babies during pregnancy. Many researchers have been conducted to investigate the medical effects of sickle cell disease, yet it is of interest to unpack the SCD and its relevance within African Americans. The main objective addressed under this theme is a study of African American pregnant females with SCD and the level of information concerning the condition that is at their disposal.

Theme on the differences between the individual who suffered sickle cell traits and those who are health or do not suffer from the sickle cell traits.

Under theme on how are the respondent felt different from other people who did not suffer from the sickle cell traits, n=8 (80 percent) indicated that they did not feel any difference in comparison to the individual who were free from these trait. It is only n=2 (20 percent) of the respondent who felt that there were some difference between them and the people who were health or free from sickle cell traits. In response to question three, the respondent 004 stated:

Participant 004

Q. What makes people with sickle cell trait different from people who do not suffer from sickle cell trait?

Participant:  Um…I think it is the pain….I think it is the pain level sometimes.  Now that is with the disease…tell me about people with sickle cell trait, like for instance, yourself, what would make you different than….me, some one that does not have sickle cell trait?  Nothing.  I don’t think anything.

Participant 008

Q. What makes people with sickle cell trait different from individuals who do not have sickle cell characteristics?

Participant:  I don’t know.

Okay, you have sickle cell trait…am I correct?

Participant:  that’s what they say.

Who are they?

Participant:  my doctor (named)

I do not have sickle cell trait…what makes you different from me?

Participant:  Nothing, I guess.

Theme on the Importance of Screening of Sickle Cell Traits

Even though, the screening for the sickle cell traits and sickle cell disease is currently performed through newborn Screening in most States in the U.S., the plan of follow up for newborn babies should be considered and given relevant attention. This is in line with avoidance of leaving a large number of people who are sickle cell disease carriers unnoticed, which increase the chance of such people to enter into the childbearing level without proper information in regard to sickle cell traits or sickle cell disease.

Theme on the opinions of the respondents on the screening of sickle cell trait received an overwhelming approval by the respondents with n=9 (90%) of the respondents indicating that the screening is a ‘good’ idea and only n=1 (10 percent) of the respondents vaguely supporting the idea if done to her spouse. The participant 008 answering the question number five indicated:

Q. Tell me how you feel about screening for sickle cell trait.

Participant:  I don’t know.

If I told you that you’re having sickle cell trait could make your baby have sickle cell disease if you boyfriend has sickle cell trait, would you want your boyfriend to get tested?

Participant:  I guess.

However, the other n=9 respondent supported the idea as a good idea. In support for the idea, participant 005 indicated:

Q. Tell me how you feel about screening for sickle cell trait.

Participant:  I think that is a great idea.

Tell me why you think we should be screening for sickle cell trait.

Participant:  Because you will know um….if your ….you’ll know what you’re getting involved with as far as your mate…you’ll know what preventative measures to take, so I most definitely think that you should screen.

Those who supported the idea of screening for the traits of sickle cell disease believed that by having the right information in regards to their status, it could be easier for them to seek proper health care during pregnancy to reduce the chances of passing these traits to their kinds. For an example;

Participant 007

Q. Tell me how you feel about screening for sickle cell trait.

Participant:  I think that people should get screened for sickle cell.

Q. Tell me why you think they should?

Participant:  Because a person should know if they have the trait so that they will know if their kids will get it.

There are many other studies that have been carried out on the importance of screening for the sickle cell traits and sickle cell disease. Successful recruitments of African Americans pregnant women for the SDC screening are based voluntary involvement and cultural sensitivity for the target population. Most of the health control and prevention researches and studies have had limited ability to access the African American women population, this has resulted in to an under presentation of the African Americans in health research. For improved recruitment and active participation, it is advisable to incorporate restrictions, beliefs and other concerns pertaining African Americans culture. This is more applicable when seeking information regarding the screening of the spouses. Though, n=10 (100%) of the respondents supported the idea of screening the spouses for the sickle cell traits and sickle cell disease, this theme may be viewed differently by male African American, who tend to dominate in relationship.

Limitation of the current study

One of the primary limitation of the current work is its failure in already knew their status in terms of traits before asking them about their health beliefs. Considering that, they were previously informed about their sickle cell traits status and the status of their partners, the participants would be correct at the risk of acquiring those traits or contacting sickle cell disease. The future studies should address this limitation.

The demographic variables that are assessed in the current work include the age of the respondents, ethnicity, marital status (whether the participant lived with their partners), level of education, economic status, occupation, and religion affiliation. Either from the analysis, it appears that the majority of pregnant women who had traits of sickle cell or sickle cell disease happened to be African Americas. Marital status and economic status was thought to have influence on the individuals’ interest in embracing screening for the sickle cell traits and sickle cell disease. This would be possible because the participant would be having active partner during their pregnancy. Level of education is also seen to influence the amount of information that is assessable to the participant concerning the status of sickle cell disease and the characteristics of the condition.

Chapter Five

Conclusion

The current study has successfully that education level on and the information pertaining sickle cell disease during prenatal care has a significant influence on the knowledge of sickle cell disease and approval for screening for the sickle cell traits and sickle cell disease. The feasibility for modeling a successful model of communication of the prenatal matters is possible if there is an active participation of all parties involved. From the research conducted in this paper, it is clear that with the minimal level of education it is possible to improve the level of information accessible on the issues of sickle cell disease and the acceptability of the sickle cell traits screening.

The traits of the present state of the health beliefs among African Americans childbearing demography is in the process, considering that the sample size is a restriction in coming up with the final decision from the information obtained. Considering the data obtained at this point, the variables that seem to influence the information accessible to the pregnant African American is the level of education, occupation and the economic status among the pregnant females in Mississippi. Accordingly, these variables seem to have influence on the acceptability of screening programs. There was significant information that was obtained during the development of the study and during its implementation. First, it became clear that the success of the project calls for active participation of all parties involved in health care study. Without the support from the respondents and the health professionals consulted, the participation would have been limited. In the future, the data should be applied in further research and should incorporate the outcome of focus groups that were interviewed. This information should also be applied in planning education sessions for the members of African American community. This will result into improvement of the informational materials of sickle cell disease and sickle cell traits screening.

Future proposed use of this data plans to incorporate the results into focus group interviews and education planning sessions with members of the African American community, in order to improve the public educational materials on SCD and SCT screening. Utilizing input of the participants have actively pursued prenatal care and so may already be more open to health care information and additional testing than the general population of African American women of childbearing age. It was thought though that limiting participants to those individuals who are currently pregnant are also those most likely to benefit from the information prior to dealing with the results of newborn screening. When these participants deliver, a small percentage of them will be identified by the Western Pennsylvania Sickle Cell Comprehensive Sickle Cell Program, and this early experience with information on SCD and SCT may reduce the shock of this contact regarding their newborns hemoglobin status.