Every year around the world, 312,000 children with sickle cell disease are born.
About 3,000 of these births occur in the United States, and one in 12 African American children is born with the sickle cell trait (Chakravorty, 2015). As a result of public health improvements such as increased prophylactic penicillin, hydroxyurea, and vaccine administration, Piel et. al. (2013), said sickle cell anemia mortality is expected to decrease globally by 2050.
There is no information in the literature about the contribution of U.S. immigrants from countries with high incidence of sickle cell disease to the sickle cell incidence in the United States. However, Nigerians account for 15 % of African immigrants in the United States (Grieco et. al., 2012), and the WHO has estimated that the carrier frequency for sickle cell anemia among Nigerians is about 20% (Modell & Darlison, 2008). Therefore, the attitude and disposition of young immigrants in the United States to sickle cell screening and premarital genetic testing as well as their romantic choices could be important predictors of the incidence of sickle cell anemia. The goal of this research study was to assess the level of awareness and attitude of Nigerian college students in the United States to sickle cell screening and premarital genetic testing.
The findings of this study indicate that among this population of young people of African ancestry, the level of awareness of sickle cell disease is nearly 60%. Ninety percent of the study participants were knowledgeable about how the disease is acquired.
Seventy-two percent of the participants knew the genetic cause of sickle cell disease and
79% correctly understood the purpose of premarital genetic screening. These levels of knowledge and awareness are higher than those reported among other populations of African Americans (Long et. al., 2011). However, participants’ attitudes toward genetic screening revealed that only 57% of the study population would undergo premarital genetic screening. The reasons given for not being willing to undergo premarital genetic screening include fear that the test result might not be favorable, thereby leading to an end to their romantic relationship (31%) or an unwillingness to interfere with God’s will (7%). Fifty-four percent of the study participants reported they would continue their romantic relationship if premarital genetic screening revealed the possibility of affected children, while only 19 % would end their romantic relationship based on genetic testing results.
Interpretation of the Findings
Brousseau et. al., (2009) stated that recent estimates of sickle cell incidence in the
United States do not include estimates of Whites, Asians, and immigrants, and are higher than all previous estimates. The findings of the current study are consistent with those of Gustafson et. al. (2007), who found that many African-Americans have some
understanding of the severity of sickle cell disease. However, even though many African-Americans recognize the benefit sickle cell testing plays in avoiding the occurrence of the disease in their offspring, their general attitude to sickle cell testing and genetic
counseling remain mostly noncommittal. The findings of the present study are also consistent with those of Long et. al. (2011), who found African Americans have a lower than expected level of adaptation and implementation of knowledge from sickle cell
disease education. Long et. al., (2011), suggested that this might be because many African Americans believe that their personal chances of producing offspring with sickle cell disease are low. Gallo et. al., (2010) suggested that another possible complication could be the tendency to value a potentially stable long-term relationship over the risk of having children with sickle cell disease.
According to the HBM, which was chosen as the conceptual framework for this study, individuals at risk for health challenges will consider changing habitual unhealthy behaviors once they understand the severity of the risk and the benefits of making timely behavioral changes (Hochbaum, G., Rosenstock, I., & Kegels, S. (2016). My study findings, however, suggest that among this study group of young college age Nigerian immigrants, there are other factors which may explain the lower than expected level of adaptation and implementation of knowledge about sickle cell disease. According to the Institute of Medicine. (2001), health beliefs may be greatly influenced by other factors such as culture, socioeconomic status, and previous experiences. Findings from my study show that this population of Nigerian immigrants are young, without children, and generally have limited life experiences. This might explain the tendency to value a potentially stable long-term relationship over the risk of having children with sickle cell disease. Additionally, according to Tachere & Umunna (2017), recent advances in therapies for the management of sickle cell could lead to decreases in the global sickle cell mortality rate. Perhaps, an awareness of these advances could lessen the appreciation of the risk and burden of having children with sickle cell disease among this population.
Limitations of the Study
Findings from this study are not generalizable to the population of Nigerian immigrants in the United States. No cause and effect relationships could be assessed from this study because I used a cross sectional study design. Moreover, it was difficult to ascertain whether the participants were completely truthful in their responses to the survey questions. Also, it was impossible to rule out external influences from nonparticipants during the completion of the online survey. Nonetheless, these data consistently support each of the study findings and are similar to other studies conducted on this topic. The participants in this study were young college age Nigerian men and women, a group which represents only 0.7% of the total immigrant population in the United States (Grieco et. al., 2012)). Another study limitation was that, in the original data collection plan, I proposed a sample size of 134. However, I terminated the data collection with a sample of 107 due to time constraints and low enrollment uptake.
Recommendations
This is the first study to my knowledge, to assess the knowledge and awareness of sickle cell disease and premarital genetic screening in this growing immigrant population in the United States. The findings of this study are important because Nigeria is one of three countries that have the highest sickle cell incidence (Piel et. al., 2013). Even though African immigrants represent a small but growing proportion of the U.S. immigrant population, nearly 20% of African immigrants are from Nigeria (Reed, Andrzejewski, &
Strumbos, 2010).
The findings from this study provide an important basis for further studies into sickle cell disease incidence, the contribution of immigrants in the United States to, and potential factors that may elicit behavioral change. Studies among larger and more diverse immigrant populations, especially those with high sickle cell incidence, could provide useful information about changes in sickle cell incidence. Researchers of such studies could assess sociocultural factors that enable immigrant populations to adapt and implement knowledge from premarital genetic screening. Such knowledge may inform the creation of effective public health strategies for increasing the level of adaptation and implementation of knowledge about sickle cell disease and premarital genetic screening.
Implications
The findings from this study indicate the need for public health community education strategies that promote knowledge and increased awareness of sickle cell disease and genetic screening. This is important especially among minority and immigrant populations because of their growing share of the U.S population. The findings of this study also highlight at least two areas of potential effects for positive social change among individuals and families, affected by sickle cell disease.
First, a strong desire for having biological children even in the presence of a high risk of having a child with the disease (Gallo et. al. 2010) might indicate a lack of
knowledge of the emotional, financial and social burden sickle cell disease exerts on individuals and families. Secondly, the tendency to value a potentially stable long-term relationship over the risk of having children with sickle cell disease underestimates the potential toll sickle cell disease could place on a romantic relationship. This calls for the
adoption of preconception care, a term defined by the WHO (2013) as “a set of interventions and/or programmes that aims to identify and enable informed decision-making to modify biomedical, behavioral, and psychosocial risks to parental health and the health of their future child, through counseling, prevention and management,
emphasizing those factors that must be acted on before conception or early in pregnancy to have maximal affect and/or choice.”
However, with the recent FDA approval of a drug that reduces the severe complications of the disease, the growing promise of bone marrow transplantation and gene therapy, having a child with sickle cell disease within a stable long-term relationship might be an informed choice after genetic screening. The findings of this study indicate the need for public health education about sickle cell disease and genetic screening. Such public health education initiatives need to be strategically adapted for minority
populations and could also be included in school curricular.
Conclusion
The effect of the growth of the immigrant population in the United States on the sickle cell incidence might be seriously underestimated. In order to continue to reduce the burden of sickle cell disease on healthcare delivery in the United States, public health education programs that address the adaptation and implementation of knowledge about sickle cell disease are needed. The successes of the Dor Yeshorim program, a premarital screening program for Tay-Sachs disease among the Jewish community and the Cyprus premarital screening for thalassemia major could be adapted to sickle cell disease in the United States. Premarital screening for Tay-Sachs disease prevented the births of 90
percent of possibly affected children among over a million people who were screened, and an 80 percent reduction in thalassemia major births (Verma & Puri 2015). An
effective adaptation of similar public health initiatives might provide the foundation for a sustainable reduction in sickle cell incidence and mortality in the United States.
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