KNOWLEDGE ATTITUDE AND PRACTICE OF SICKLE CELL CRISES PREVENTION AMONG DIAGNOSED PATIENTS

ABSTRACT

The study focused on knowledge, attitude and practice of sickle cell crises prevention among diagnosed patients. A descriptive cross-sectional study design was used. With 384 patients of University of Uyo Teaching Hospital (UTTH) participating in the study. Semi-structured questionnaire was employed to collect data from participants on demographic characteristics, general knowledge of SCD, beliefs, and attitudes of patients at the university towards SCD. Findings revealed that majority of the patients were aware of SCD although they have poor comprehensive knowledge about the pattern of inheritance, Majority of the respondents demonstrated positive attitude towards SCD and had the belief that it is an inherited disease acquired from parents, but not a punishment from God or disease of bad luck, and close to one third are ready to end their relationship if they found out their genotypes could predispose them to have children with SCD. Generally, there was a poor understanding of SCD pattern of inheritance with the majority of the patients not knowing they might be SCD carriers themselves.

CHAPTER ONE: INTRODUCTION

1.1 Background

Sickle cell disease (SCD) is a set of inherited haemoglobin diseases marked by the presence of defective sickle-hemoglobin in erythrocytes (Johnson, 2016). This hereditary illness is caused by an error in the production of the B-globin chain of the haemoglobin molecule, which occurs when a polar amino acid, glutamic acid, is replaced by a non-polar amino acid, Valin, in the chromosome (Ribeil et al., 2017). On deoxygenation, sickle haemoglobin undergoes a conformational change that promotes intracellular polymerization, leading to distortion of the normal biconcave erythrocyte disc into the distinctive and pathological crescent shape (WHO 2016). Hemolytic anaemia is the outcome.

One of the biggest health challenges to the human race is sickle cell disorder (WHO, 2008). It is a genetic disorder transmitted from parents to their offsprings. The disorder is associated with many challenges resulting from frequent hospitalization of the affected individual. Despite major advances in our understanding of the molecular pathology, pathophysiology, and causes of the inheritable disorders, thousands of infants and children are dying through lack of appropriate preventive measures such as lack of premarital sickle cell screening by intending couples to know their genotype before marriage (Akowe, 2010).

According to World Health Organization (WHO, 2008), sickle cell disorder contributes to 5% of under five deaths on the African continent; more than 9% of such deaths occur in West Africa and up to 16% of under-five deaths in individual West African countries. Akinyanju, (2009), states that about one hundred and fifty thousand children are born each year with sickle cell diseases and about 2-3% of Nigerians live with the disease while 25-30% of Nigerians carry the gene that can give rise to sickle cell disease (SCD) . It is estimated that by the year 2025, a total number of 50,000 children born in Nigeria will be affected with sickle cell disorder, and this poses a great concern , (George, 2011). In order to prevent this disorder, sickle cell screening and testing have been recommended for couples before marriage (Akinyanju, 2009)

Knowledge about premarital sickle cell screening can be gained through information from educational programmes. This in turn establishes a health awareness program in order to explain the benefits of premarital sickle cell screening to the public and increase their awareness on the serious consequences of sickle cell disorder. Knowledge gained about premarital sickle cell screening will help to prevent SCD and the prevention will depend on the attitude of couples towards the screening. Attitude according to encyclopedia dictionary is a set way of thinking or feeling typically reflected in a person’s behaviour. It is the totality of those states that lead to a point towards some particular activity of the organism, (Ferguson, 2010). Attitude on sickle cell screening can be a dynamic element in human behaviour, and it can be positive or negative. People who have positive attitude about the benefits associated with premarital sickle cell screening may like to adhere on screening, according to Lockock and Joe (2009), may affect their adherence on sickle cell screening.

Adherence on sickle cell screening is an act of sticking to behaviour, or the process of engaging in an activity for the purpose of mastering or improving on it. People may agree to comply on sickle cell screening when they see that the behaviour will yield positive results, like reducing the risk of having children with sickle cell disease. On the other hand, individuals may fail to adhere to sickle cell screening due to reasons such as fear of stigma, emotional or financial consequences and or reliability of the test result. (Lockock & Joe, 2009). Premarital screening helps to educate people about inherited disorders. Although, WHO has repeatedly recommended several measures for the prevention of genetic diseases including sickle cell diseases through health education and improvement of community knowledge and attitude towards the control of this hereditary genetic diseases (WHO, in Awatif, 2006), adherence on sickle cell screening is still very low (Al kindi, Salha & Al kendi, 2012).

There is need to encourage the frequent  practice of  sickle cell screening. Prevention of sickle cell disorder and risk minimization through screening and carrier identification remains the only realistic approach to reduce the impact of the disease especially in an adult population. Tertiary institutions have large concentration of adult population and they form important sub groups of the population since they are at a relatively high level of education and in the manageable age group.

1.2 Problem statement

Around 400,000 children with SCD are born every year around the world, with 300,000 of them having sickle cell anaemia (WHO, 2017). The region with the greatest burden is Sub-Saharan Africa, which accounts for more than 75 percent of all sickle cell disease cases and is anticipated to increase by 2050. (WHO, 2016). In Africa, sickle cell disease is a leading cause of death among children under the age of five, slowing progress toward the UN’s Sustainable Development Goal (SDG) of Good Health and Well-Being, which includes reducing childhood mortality (UN, 2017).

SCD is a serious haemoglobin disorder that the World Health Organization has recently designated as a global health issue (WHO, 2017). Despite the fact that SCD has become a global health issue, in Nigeria, the condition is treated and managed rather than prevented. Akinyanju (2009), stated that Nigeria has the highest population of people living with sickle cell diseases with about 150,000 births annually. Similar statement made by WHO (2008), shows that of the 100,000 individuals born annually worldwide, 14,306 have sickle cell trait, while 474 have sickle cell diseases. Al- kindi, Salha & Al kendi, (2012), stated that despite current advances in diagnosis and the increasing campaigns through mass media and health professionals all are supposed to increase people’s knowledge about premarital sickle cell counseling and screening with a view to causing a drop in high risk marriages. In spite of these efforts, sickle cell diseases are still very common in our society. In addition, non adherence on sickle cell screening before marriage can lead to birth of a child with the disorder, separation and divorce among parents, frequent going in and out of the hospital, and infant mortality and morbidity.

1.3: Research questions

1. What is the knowledge regarding sickle cell disease among diagnosed patients in Nigeria?
2. Which beliefs regarding sickle cell disease do diagnosed patients have?
3. What is the attitude towards sickle cell disease among diagnosed patients, ?

1.4 Study objective

1. To describe knowledge of sickle cell disease among diagnosed patients in Nigeria
2. To describe the beliefs among diagnosed patients regarding sickle cell disease
3. To describe the attitude of patients towards sickle cell disease among patients in Nigeria.

1.5 Significance of the study

The study will help to provide information to the Government and health care providers on the level of knowledge, attitude and adherence to sickle cell screening, and some of the reasons that hinders them from adhering on sickle cell screening despite the benefits associated with it.

The information provided will serve as tools to healthcare providers in identifyings areas of need, If findings shows low level of knowledge, appropriate measures will be devised to strengthen their enlightenment  campaign in other to health educate them on the importance of the screening. Government will through the information institute policies guiding couples on premarital screening before marriage. However if findings shows high level of knowledge, it will benefit the family and community health wise because, adult student can be able to make wise selections before marriage. The high level of knowledge will help to change their negative attitude to positive attitude and increase their level of adherence. Increase in their level of adherence will reduce high risk marriages, birth of a child with sickle cell disorder, under five mortality and morbidity, divorce and frequent going in and out of the hospital. Information gathered will help to reduce the stigma and fear attached on screening thus enhance adherence of couples to screening before marriage.

Findings from this study will be useful to health educators, counselors and policy makers as it will provide the relationship between knowledge, attitude and adherence on sickle cell screening, such information will be used as a guide in health education campaigns and programs. Furthermore, the findings will also serve as a point of reference for future studies.

1.6 Study scope

The study is confined to  adult patients (males and females, both married and unmarried) at UTTH. The study also covered variables like knowledge, attitude and how they relate to adherence on sickle cell screening.

1.7 Limitation of Study

The only problem the researcher had in getting information from the respondents on sickle cell  was the unwillingness of the respondents to give information about their health status. The might affect the information provided by the respondents but the researchers however was able to get good information as regard the research topic by making the respondents feel safe with whatever information they provided to the researcher.

1.8 Definition Of Terms

Sickle cell: A group of disorders that cause red blood cells to become misshapen and break down

Antigen: a toxin or other foreign substance which induces an immune response in the body, especially the production of antibodies

Genetic counseling: Communication process between health care provider and client that emphasizes and provides accurate and up-to-date information about a genetic disorder in a sensitive and supportive, non-directive manner (SCDAA, 2005).

Hemoglobin: Chemical substance (an iron containing protein) of the red blood cell, which carries oxygen to the tissues, and gives the cell its red color (SCDAA, 2005).

Hemoglobin A (HbA): Hemoglobin is composed of two alpha globins and two beta globins, normally produced by children and adults (Jones, 2008, p. 119).

Hemoglobin C trait (AC): Inheritance of one gene for the usual hemoglobin (A) and one gene for hemoglobin (C). A person who has the hemoglobin C Trait (AC) is a carrier of the hemoglobin C gene, and is not affected by the gene (SCDAA, 2005).

Hemoglobin C disease: A person has both HbS and HbC and is often referred to as “HbSC.” Hemoglobin C causes red blood cells to develop. Having just some hemoglobin C and normal hemoglobin, a person will not have any symptoms of anemia. However, if the sickle hemoglobin S is combined with the target cell, some mild to moderate anemia may occur (UMMC, 2010).

Hemoglobin E disease: Similar to sickle cell-C disease except that an element has been replaced in the hemoglobin molecule under certain conditions, such as exhaustion, hypoxia, severe infection, and/or iron deficiency

Sickle cell trait: A person carrying the defective gene, HbS, but also has some normal hemoglobin HbA. Persons with the sickle cell trait are usually without symptoms of the disease, but mild anemia may occur under intense, stressful conditions, exhaustion, hypoxia (low oxygen), and/or severe infection. The sickling of the defective hemoglobin may occur and result in some complications associated with sickle cell disease, KNOWLEDGE ATTITUDE AND PRACTICE OF SICKLE CELL CRISES PREVENTION AMONG DIAGNOSED PATIENTS

Get the Complete Project FOR MORE RESEARCH PROJECT TOPICS AND MATERIALS, CLICK HERE