| dc.description.abstract | Background: The morbidity and mortality rate of SCD is of a global concern particularly in developing countries. Therefore screening for sickle cell and genetic counseling before child bearing may be helpful in the prevention of the condition. It provides genetic related reproductive risk information especially in resource limited countries where other available preventive methods may not be readily available or ethically/legally allowed.
However, the awareness and acceptability of sickle cell screening among youth is not well documented in Uganda and Soroti district in particular. It is therefore important to determine awareness, acceptability as well as factors influencing sickle cell screening among youth. This is particularly so for the youth since they constitute the majority of intending couples hence those that will produce genes that will make up the gene pool for future generations.
Objective: To assess the awareness and acceptability as well describe the factors influencing sickle cell screening among youth attending the OPD at SRRH in Eastern Uganda.
Methods: This was a cross-sectional study carried out in SRRH. A sample size of 384 participants was estimated to be recruited into the study using the consecutive sampling method. Data was collected for a month using pre-tested questionnaires. Data was entered into EpiData3.1 computer software and exported to STATA 10.0 for analysis. Frequencies and percentages were determined, univariate, bivariate, multivariate and logistic regression was done.
Results: A total of 378 respondents participated in the study. The awareness of sickle cell screening was low 151(43%) although awareness of sickle cell disease was high 348(92%) among the participants. The level of acceptability of sickle cell screening among the participants was high 338(97%). However the socio demographic factors did not have influence on awareness and acceptability of sickle cell screening except tribe that had an influence on awareness.
Conclusion: There was a low level of awareness of sickle cell screening although the level of acceptability of sickle cell screening was high amongst youth. Generally socio demographic factors did not have influence on awareness and acceptability except the tribe.
Recommendations:
Routine sickle cell screening need to be introduced at all health care levels to enable youth make well informed decisions concerning genetic consequences of SCD before child bearing.
CHAPTER ONE
1.0 Background
SCD is an autosomal recessive genetically transmitted hemoglobinopathy. In Africa, three forms exist namely; sickle cell anemia (HbSS), sickle cell hemoglobin C (HbSC) and sickle cell thalassemia (HbSThal).Children born to two parents with the sickle cell trait(SCT) gene have a 25% chance of having SCD and a 50% chance of having the SCT(1)
In African countries, the prevalence of sickle cell is variable with the highest prevalence of the SCT occurring between latitudes 15°north and 20°south. This is attributed to the selective advantage sickle cell trait carriers have due to their immunity to severe malaria (2)
The main pathology in SCD is the trapping of sickle shaped red cells in small blood vessels that manifests as pain and is the most distressing symptoms which may often warrant hospitalization of the clients.
Until recently, there has been no effective cure for SCD, increasing attention is being paid to stem cell and gene therapy intervention but it is unlikely that this will become standard management in resource limited countries like Uganda soon. Therefore the mainstay of management in the present situation is only supportive when in crisis(3).
The morbidity and mortality rates of hemoglobin disorders especially SCD is of a global concern particularly in developing countries since hemoglobin disorders account for about 3.4% of deaths globally and 6.4% in Africa alone among children less than 5 years of age (4)
It is estimated that approximately 7% of the world population are carriers of these disorders and 300,000–400,000 babies with severe forms of these disorders are born each year with 83% sickle cell disorders and 17% thalassemia(5)
It is imperative to promote preventive efforts against SCD since it is a genetic disorder with no cure. Genetic counseling for couples intending to have children is a highly recommended approach. However, for this approach to succeed, the potential parents should be aware of the disease.
A study done in West Africa reported low awareness on sickle cell and this might explain the continued propagation of the condition. This may as well be the reason why SCD prevention has remained a challenge even 100 years after it was first described in the western medical literature by James B. Herrick since over 9 million carriers continue to become pregnant annually (6)
Other approaches like, post-natal diagnosis and selective abortion still remain a challenge. It is difficult to know who and what you are aborting, meaning that preconception genetic testing and strategic reproductive choices are basics that are more consistent with ethical principles and good conscience | en_US |
