i SCHOOL OF PUBLIC HEALTH COLLEGE OF HEALTH SCIENCES UNIVERSITY OF GHANA KNOWLEDGE, PERCEPTION AND PRACTICES OF YOUNG ADULTS IN TEMA TOWARDS SICKLE CELL DISEASE. BY ADWOA AYEWA AYIMADU (10938700) THIS DISSERTATION IS SUBMITTED TO THE UNIVERSITY OF GHANA, LEGON IN PARTIAL FULFILMENT OF THE REQUIREMENTS FOR THE AWARD OF MASTER OF PUBLIC HEALTH (MPH) DEGREE. JANUARY, 2023 University of Ghana http://ugspace.ug.edu.gh ii DECLARATION I, ADWOA AYEWA AYIMADU hereby declare that apart from specific references made to other people’s work which have been duly acknowledged, this dissertation is my own independent work undertaken under the supervision of Dr. PRUDENCE TETTEY. I also declare that no part of this thesis has been submitted for the award of any degree in this University or any University or Institution elsewhere. … …… ……28/04/23….…. ADWOA AYEWA AYIMADU DATE Student .. … ….…28/04/23…… Dr. PRUDENCE TETTEY DATE Academic Supervisor University of Ghana http://ugspace.ug.edu.gh iii DEDICATION This thesis is dedicated to my uncle, Mr. Jonathan Amankwah for sponsoring my master’s degree in Public Health. University of Ghana http://ugspace.ug.edu.gh iv ACKNOWLEDGEMENTS I would like to express my foremost and immense gratitude to God for how far He has brought me. Putting together this thesis has not been by my human strength but by His grace and mercies and I am so thankful for His goodness and faithfulness toward me. To my supervisor, Dr Prudence Tettey, who patiently guided me into doing an excellent work, I would like to say a big thank you. God richly bless you Dr Tettey. I would also like to thank the lecturers and staff of the School of Public Health, especially those in the Department of Biological, Environmental, and Occupational Health Sciences for their help and encouragements throughout my MPH journey. I would also like to say a big thank you to my parents, Mr and Mrs Ayimadu Amankwah and siblings, Mrs Akosua Otiwaa Ampofo and Mr Kwabena Nuamah Ayimadu for their prayers and support throughout this journey. A special thanks goes to my friends who stood by me through difficult times and encouraged me with their support into finishing strong. I appreciate you all so much. My final acknowledgement goes to my course mates who in their own special ways, have contributed to my success story. God bless you all immensely. University of Ghana http://ugspace.ug.edu.gh v ABSTRACT Background: Globally, about 25 million people live with sickle cell disease. In sub-Saharan Africa, there are 240,000 children affected by the disease and 50% - 80% of them die before the age of 5. Out of the total number of babies born each year in Ghana, 15,000 (2%) are born with sickle cell disease. Sickle cell disease (SCD) is an inherited blood disorder that affects red blood cells. Unlike normal red blood cells, which have an average life span of about 120 days, are smooth, round, flexible, and can easily move through blood vessels, sickle-shaped red blood cells are stiff and sticky and live up to about 10 to 20 days. Due to the increased rates of morbidity and mortality associated with the disease, The UN has declared SCD as a global public health concern hence the need to decrease the number of infants born annually with sickle cell disease in Ghana through advocacy and increased education of the general public especially young people who are of childbearing age. Aim of Study: The aim of this study was to determine the knowledge, perception, and practices of young adults in Tema toward sickle cell disease. Methodology: This study was carried out using a quantitative research approach, with a cross-sectional survey of young adults in Tema. The study population for this research comprised 400 young adults between the ages of 18 to 40. The data collection tool which was a structured questionnaire was divided into 5 sections; socio-demographic characteristics and prevalence of sickle cell disease among young adults in Tema, their knowledge, perception attitude and practices towards sickle cell disease. Scores between 0 and 0.5 were considered as poor knowledge, attitude, perception, and practices, while scores between 0.6 and 1 were considered as good knowledge, attitude, perception, and practices. All of the "Yes" responses were the appropriate answers to the questions posed, which were scored as either 1 for "Yes" responses or 0 for "No/I don't know" responses. The data collected were stored in excel and University of Ghana http://ugspace.ug.edu.gh vi analyzed using logistic regression models with the STATA software and presented in frequency tables, graphs and summary statistics. Results: Findings show that there was a 9% prevalence rate of SCD among young adults in Tema, 73.5% of respondents had good SCD knowledge, 86.8% and 60.7% had poor attitude and poor perceptions respectively and an overall good practice toward the disease. There was a significant association between educational level of participants and knowledge of SCD. Conclusion: In conclusion, there should be effective education on SCD to improve the knowledge, attitudes, perceptions and particularly, practices toward SCD to help reduce its prevalence in Ghana. University of Ghana http://ugspace.ug.edu.gh vii TABLE OF CONTENTS DECLARATION ....................................................................................................................... ii DEDICATION .......................................................................................................................... iii ACKNOWLEDGEMENTS..................................................................................................... iv ABSTRACT ............................................................................................................................... v TABLE OF CONTENTS........................................................................................................ vii LIST OF ABBREVIATIONS .................................................................................................. x LIST OF TABLES ................................................................................................................... xi LIST OF FIGURES ................................................................................................................ xii CHAPTER 1 .......................................................................................................................................... 1 INTRODUCTION ................................................................................................................. 1 1.1 Background ........................................................................................................................... 1 1.2 Problem Statement ................................................................................................................ 2 1.3 Justification of Study ............................................................................................................ 3 1.4 Research Questions ........................................................................................................... 4 1.5 Objectives ............................................................................................................................... 4 1.5.1 General Objectives ........................................................................................................ 4 1.5.2 Specific Objectives ........................................................................................................ 4 1.6 Conceptual Framework showing Factors affecting the Knowledge, Perception and Practices of Young Adults toward Sickle Cell Disease .................................................................. 6 CHAPTER 2 .......................................................................................................................................... 8 LITERATURE REVIEW..................................................................................................... 8 2.1 INTRODUCTION ................................................................................................................. 8 2.2 Prevalence of Sickle Cell Disease ......................................................................................... 8 2.3 Knowledge of Sickle Cell Disease ...................................................................................... 10 2.3.1 Causes of SCD ............................................................................................................. 10 2.3.2 Symptoms of SCD ....................................................................................................... 11 2.3.3 Diagnosis of SCD ......................................................................................................... 11 2.3.4 Morbidities associated with SCD ............................................................................... 12 2.3.5 Management of SCD ................................................................................................... 13 2.4 Perception and Attitude toward SCD ............................................................................... 14 2.5 Practices towards SCD ....................................................................................................... 16 2.6 Association between SCD status and Socio-demographic factors .................................. 17 CHAPTER 3 ........................................................................................................................................ 18 METHODOLOGY ............................................................................................................. 18 3.1 INTRODUCTION ............................................................................................................... 18 3.2 Study Design ........................................................................................................................ 18 University of Ghana http://ugspace.ug.edu.gh viii 3.3 Study Area ........................................................................................................................... 19 3.4 Study Population ................................................................................................................. 20 3.4.1 Inclusion Criteria ........................................................................................................ 20 3.4.2 Exclusion Criteria ....................................................................................................... 20 3.5 Variables .............................................................................................................................. 21 3.6 Sample Size Calculation ..................................................................................................... 21 3.7 Sampling method ...................................................................................................................... 22 3.8 Data Collection .......................................................................................................................... 22 3.9 Data Collection Tool ........................................................................................................... 22 3.10 Data Analysis ....................................................................................................................... 23 3.11 Quality Control Measures .................................................................................................. 23 3.12 Ethical Considerations ........................................................................................................ 24 3.12.1 Inform consent .................................................................................................................... 24 3.12.2 Voluntary participation ...................................................................................................... 24 3.12.3 Confidentiality and privacy................................................................................................ 24 3.12.4 Data storage and use ........................................................................................................... 25 3.13 Dissemination of Results Plan ............................................................................................ 25 3.14 Cost /compensation ............................................................................................................. 25 3.15 Conflict of interest ............................................................................................................... 25 CHAPTER 4 ........................................................................................................................................ 26 RESULTS ............................................................................................................................ 26 4.1 INTRODUCTION ............................................................................................................... 26 4.2 Socio-demographic characteristics of participants .......................................................... 26 4.3 Prevalence of SCD ............................................................................................................... 28 4.4 Sources of Information about Sickle Cell Disease ............................................................ 29 4.5 Knowledge of Sickle Cell Disease ...................................................................................... 30 4.6 Attitude towards Sickle Cell Disease ................................................................................. 31 4.7 Perception about Sickle Cell Disease ................................................................................. 33 4.8 Practices towards Sickle Cell Disease ................................................................................ 34 4.9 Bivariate association between overall knowledge of Sickle Cell Disease and Socio- demographic characteristics .......................................................................................................... 35 4.10 Multiple logistic regression analysis of the association between socio-demographic factors and knowledge of Sickle Cell Disease ............................................................................... 37 4.11 Bivariate association between overall attitude towards Sickle Cell Disease and Socio- demographic characteristics .......................................................................................................... 38 4.12 Multiple logistic regression analysis of the association between socio-demographic factors associated with attitude towards Sickle Cell Disease ...................................................... 39 4.13 Bivariate association between overall perception about SCD and Socio-demographic characteristics .................................................................................................................................. 40 University of Ghana http://ugspace.ug.edu.gh ix 4.14 Multiple logistic regression analysis of the association between socio-demographic factors and perception about SCD ................................................................................................ 41 4.15 Bivariate association between Sickle Cell Disease status of participants and Socio- demographic factors ....................................................................................................................... 42 4.16 Multiple logistic regression analysis of the association between socio-demographic factors and Sickle Cell Disease status of participants .................................................................. 43 CHAPTER 5 ........................................................................................................................................ 45 DISCUSSION ...................................................................................................................... 45 5.1 INTRODUCTION ............................................................................................................... 45 5.2 Prevalence of Sickle Cell Disease ....................................................................................... 45 5.3 Knowledge of Sickle Cell Disease ...................................................................................... 46 5.4 Attitude towards Sickle Cell Disease ................................................................................. 47 5.5 Perception about Sickle Cell Disease ................................................................................. 48 5.6 Practices towards Sickle Cell Disease ................................................................................ 50 5.7 Socio-demographic characteristics associated with knowledge, attitude and perception towards SCD .................................................................................................................................... 51 5.8 Socio-demographic factors associated with Sickle Cell Disease status of participants . 52 CHAPTER 6 ........................................................................................................................................ 53 CONCLUSION AND RECOMMENDATIONS .............................................................. 53 6.1 INTRODUCTION ............................................................................................................... 53 6.2 Conclusion ........................................................................................................................... 53 6.3 Limitation ............................................................................................................................ 53 6.4 Recommendations ............................................................................................................... 54 6.4.1 Institutional ................................................................................................................. 54 6.4.2 Research ....................................................................................................................... 54 REFERENCES ........................................................................................................................ 55 APPENDICES ......................................................................................................................... 67 Appendix a: participant’s consent form ........................................................................... 67 appendix b: PARTICIPANT’S INFORMATION SHEET ............................................. 70 APPENDIX C: QUESTIONNAIRE .................................................................................. 71 APPENDIX D: ETHICAL CLEARANCE ....................................................................... 74 University of Ghana http://ugspace.ug.edu.gh x LIST OF ABBREVIATIONS GHS – Ghana Health Service PGD – Preimplantation Genetic Diagnosis PGT – Preimplantation Genetic Testing PND – Prenatal (Genetic) Diagnosis SCD – Sickle Cell Disease UN – United Nations WHO – World Health Organisation University of Ghana http://ugspace.ug.edu.gh xi LIST OF TABLES Table 4.1 Socio-demographic characteristics of participants .................................................. 27 Table 4.2 Sources of information about SCD .......................................................................... 29 Table 4.3 Knowledge of SCD .................................................................................................. 30 Table 4.4 Knowledge of Signs/ Symptoms of SCD ................................................................ 31 Table 4.5 Attitude towards Sickle Cell Disease....................................................................... 32 Table 4.6 Perception about Sickle Cell Disease ...................................................................... 33 Table 4.7 Practices towards SCD ............................................................................................. 34 Table 4.8 Bivariate association between overall knowledge of SCD and Socio-demographic characteristics ........................................................................................................................... 36 Table 4.9 Multiple logistic regression analysis of the association between socio-demographic factors and knowledge of Sickle Cell Disease ......................................................................... 37 Table 4.10 Bivariate association between overall attitude towards SCD and Socio- demographic characteristics ..................................................................................................... 38 Table 4.11 Multiple logistic regression analysis of the association between socio- demographic factors and attitude towards Sickle Cell Disease ............................................... 39 Table 4.12 Bivariate association between overall perception about SCD and Socio- demographic characteristics ..................................................................................................... 40 Table 4.13 Multiple logistic regression analysis of the association between socio- demographic factors and perception about SCD ..................................................................... 42 Table 4.14 Bivariate association between Sickle Cell Disease status and Socio-demographic factors ....................................................................................................................................... 43 Table 4.15 Multiple logistic regression analysis of the association between socio- demographic factors and Sickle Cell Disease status of participants ........................................ 44 University of Ghana http://ugspace.ug.edu.gh xii LIST OF FIGURES Figure 1.1 Conceptual framework showing Factors affecting the Knowledge, Perception, and Practices of young adults toward Sickle Cell Disease. .............................................................. 6 Figure 3.1 A map of Tema Metropolis showing the communities where the study was carried out. ........................................................................................................................................... 19 Figure 4.1 Prevalence of Sickle Cell Disease among participants........................................... 28 Figure 4.2 Participants’ awareness of Sickle Cell Disease ...................................................... 28 Figure 4.3 Sickle Cell trait awareness of participants.............................................................. 29 Figure 4.4 Overall knowledge of Sickle Cell Disease of participants ..................................... 31 Figure 4.5 Overall Attitude of participants towards Sickle Cell Disease ................................ 32 Figure 4.6 Overall Perception of Participants about SCD ....................................................... 34 Figure 4.7 Influencing factor of participants’ decision to test for SCD................................... 35 University of Ghana http://ugspace.ug.edu.gh xiii University of Ghana http://ugspace.ug.edu.gh 14 University of Ghana http://ugspace.ug.edu.gh 1 CHAPTER 1 INTRODUCTION 1.1 Background Sickle cell disease is an inherited blood disorder that affects hemoglobin, an oxygen-carrying protein in red blood cells (Sedrak & Kondamudi, 2021). Unlike normal red blood cells which are smooth, round, flexible with an average life span of about 120 days and can easily move through blood vessels, sickle-shaped red blood cells are stiff and sticky and live up to about 10 to 20 days (Shiel, 2021). Because of their nature, they are not able to move freely through blood vessels thereby blocking the flow of blood and oxygen from getting to all parts of the body (CDC, 2022). This action causes affected persons to experience mild to severe pain as well as other health complications like avascular necrosis, stroke, pulmonary hypertension, kidney failure, acute chest syndrome, priapism, and organ damage, among others (Tanabe et al, 2019). Sickle cell disease is the most common inherited genetic disease in the world and it is most prevalent in Africa. It is caused by inheriting two abnormal hemoglobins, which include hemoglobin S (HbS) and one other which may be hemoglobin C, D, E, or O from each parent (Asare et al, 2018). These abnormal hemoglobins are structural variants arising from a mutation in the hemoglobin beta (HBB) gene (Chakravorty & Williams, 2014). One can have the sickle cell trait by inheriting one abnormal hemoglobin from one parent and normal hemoglobin A (HbA) from the other parent. People with the trait may in rare cases, also experience mild to severe forms of pain crises and complications and can pass on the trait to their children. There is a 1 out of 2 chance (50%) that a child will inherit the sickle cell trait and a 25% (1 out of 4) chance of inheriting the disease if both parents have the trait (CDC, 2022). Globally, about 20 to 25 million people are living with the disease and in sub-Saharan Africa, 240,000 children are born every year with it and 50 - 80% of these children die before age 5 (Mulumba & Wilson, 2015). Fifteen thousand (15,000) babies, which is 2% of children born each year in Ghana are University of Ghana http://ugspace.ug.edu.gh 2 born with the disease (Sims et al, 2021). Sickle cell disease has therefore been recognized as a global public health concern by the United Nations due to the increased rates of morbidity and mortality associated with it (Mulumba & Wilson, 2015). With the introduction of various interventions like newborn screening (although restricted), genetic diagnosis, use of antibiotics particularly penicillin to treat and avoid infections (Mulumba & Wilson, 2015), there has been a tremendous improvement in the quality of life and life expectancy of people living with sickle cell disease over the past few years (Alghamdi et al, 2018). However, to further decrease morbidity and mortality rates with its associated complications and the psychosocial and economic burden that comes with it (Lubeck et al, 2019), more awareness through advocacy and education needs to be created to sensitize the general public, especially young adults (20-35 years) with the right knowledge on the disease (Aygun & Odame, 2012). 1.2 Problem Statement Sickle cell disease (SCD) does not only affect individuals living with the disease but also caregivers and the nation as a whole (Buser et al., 2021). There is a recognized economic burden on the healthcare system, direct and indirect costs on caregivers and sickle cell patients coupled with excruciating pain episodes as a result of the disease (Holford et al., 2021). People living with SCD are often stigmatized and discriminated against by other individuals who for lack of knowledge, assume that the disease is either a curse or punishment for sins committed by families of affected persons. This results in decreased social activities and increased psychological traumas which affect the quality of life of persons with the disease. Sickle cell disease also affects the productivity of patients due to repeated pain crises which in the long run, affects the overall productivity of the nation (Holford et al., 2021). University of Ghana http://ugspace.ug.edu.gh 3 There is a need to decrease the number of infants born annually with sickle cell disease in Ghana through advocacy and increased education of the general public especially young people who are of childbearing age (Boadu & Addoah, 2018). 1.3 Justification of Study Tema is a big urban city in the Greater Accra Region of Ghana which houses a population of about 196,224 people. In 2013, Tema was ranked the 11th most populous settlement in Ghana (Ghana Statistical Service, 2021). Although a few studies have been conducted on sickle cell disease among inhabitants of Tema in the past (Ephraim et al., 2015; Ephraim et al., 2016; Nimako, 2012), this study is however, the first to consider the topic of knowledge, perception, and practices of SCD among young adults in Tema. Also, all research conducted on the stated topic over the last few years in Ghana have only covered students in the second cycle and tertiary institutions but not communities (Boadu & Addoah, 2018; Djan & Mensah, 2020). The study population which comprises young adults between the ages of 18 to 40 is said to be the age at which most people consider the possibility of dating, marrying, or having children. Being well-informed about sickle cell disease is a key component in its prevention since it enables people between the ages of 18 to 40 to make smart decisions regarding marriage and having children. Therefore, assessing the knowledge of unmarried individuals about sickle cell disease can aid in creating pertinent public health initiatives to raise awareness and knowledge of the problem (Adigwe, 2022). University of Ghana http://ugspace.ug.edu.gh 4 1.4 Research Questions 1. How prevalent is SCD among young adults in Tema? 2. What is the knowledge level of young adults in Tema concerning sickle cell disease? 3. What is the attitude of young adults in Tema towards sickle cell disease and people living with it? 4. What perception do young adults in Tema have of SCD and people living with SCD? 5. What practices regarding SCD do young adults in Tema carry out? 6. What is the association between the socio-demographic characteristics of participants and knowledge, perception, attitude, and practices of young adults in Tema)? 7. What is the association between SCD status and the socio-demographic characteristics of participants? 1.5 Objectives 1.5.1 General Objectives The general objective was to determine the knowledge, perception, and practices of young adults in Tema toward sickle cell disease. 1.5.2 Specific Objectives The specific objectives of the study were to: 1. determine the prevalence of SCD among young adults in Tema. 2. assess the knowledge level of young adults in Tema regarding sickle cell disease. 3. assess the attitude of young adults in Tema towards sickle cell disease and people living with it. University of Ghana http://ugspace.ug.edu.gh 5 4. assess the perception young adults in Tema have of SCD and people living with the disease. 5. assess the practices of young adults in Tema regarding sickle cell disease. 6. measure the association between the socio-demographic characteristics of participants and knowledge, perception, attitude of young adults in Tema. 7. measure the association between SCD status and the Socio-demographic characteristics of participants. University of Ghana http://ugspace.ug.edu.gh 6 1.6 Conceptual Framework showing Factors affecting the Knowledge, Perception and Practices of Young Adults toward Sickle Cell Disease The conceptual framework in figure 1.1 assesses the factors that can affect the knowledge, perception, and practices of young adults toward sickle cell disease. Figure 1.1 Conceptual framework showing Factors affecting the Knowledge, Perception, and Practices of young adults toward Sickle Cell Disease. University of Ghana http://ugspace.ug.edu.gh 7 Socio-demographic factors like age, gender, marital status, religion, ethnicity, educational level, occupation and whether or not one has children can influence an individual’s level of knowledge on sickle cell disease i.e. whether the individual knows how the disease is inherited, what causes the disease, how to prevent the disease, among others (Boadu & Addoah, 2018). The knowledge level of the disease can also influence a person’s perception positively or negatively. A person can have a right or wrong attitude toward an SCD patient based on either the knowledge obtained or the lack of it. This can determine whether a person living with SCD will be discriminated against, or stigmatized by other individuals, based on a belief or disbelief in misconceptions about sickle cell disease which will affect the overall quality of life of people living with the disease (Buser et al., 2021). Again, one’s level of knowledge can affect the practices of an individual toward sickle cell disease. If people have the right knowledge of SCD before marriage, they will ensure that they know their genotype or sickling status and that of their soon-to-be spouses by engaging in pre-marital screening (Edwin et al., 2011). In the case where the right knowledge is obtained after marriage, people can also engage in pre-natal diagnosis when it comes to childbirth if the genotypes are incompatible and also early diagnosis in the situation where the couple has had a child already. These practices, whether they are done or not, can either contribute to the increase or decrease in prevalence of sickle cell disease and its related morbidity and mortality (Edwin, Edwin & Etwire, 2011). University of Ghana http://ugspace.ug.edu.gh 8 CHAPTER 2 LITERATURE REVIEW 2.1 Introduction This chapter provides a detailed analysis of sickle cell disease, its prevalence globally, in Africa, and Ghana, as well as knowledge, perception, and practices of young adults in Tema towards SCD. Recent and existing literature on these topics were critically scrutinized to complete this chapter and to find answers to the research questions while fulfilling the purpose of this study. The first section talks about the prevalence of SCD globally, in Africa and in Ghana, section two talks about the knowledge of SCD and highlights on the causes, symptoms, diagnosis, morbidities associated with the disease and its management. Section three discusses the perception of sickle cell disease with reference to studies carried out in some parts of Africa and in Ghana. Section four deals with the practices toward SCD and the last section talks about the association between SCD status and the socio-demographic factors considered in this study. 2.2 Prevalence of Sickle Cell Disease Sickle cell disease is the most common inherited hematological disease and affects about 300,000 babies every year in the world. Although there is a high prevalence of the disease in sub-Saharan Africa, South Asia, the Middle East, and the Mediterranean region (David et al., 2018), SCD is most prevalent in sub-Saharan Africa, where public health initiatives to reduce mortality and morbidity are not always available. Close to 90% of the total global population of SCD comes from Nigeria, India, and the Democratic Republic of Congo (DeBaun & Galadanci, 2022). SCD has been identified as a global public health issue by the World Health Organization and the United Nations. In Ghana, there is an approximation of 15,000 babies which is 2% of babies born annually, diagnosed with SCD (Asare et al, 2018). Out of these 15,000 babies born, it is estimated that 7000 to 12,000 of them die as the disease is unknown to their parents (Ohene- Frempong, 2018). Developed nations like the United States have however seen tremendous University of Ghana http://ugspace.ug.edu.gh 9 improvements in their mortality rates for children living with SCD due to interventions like neonatal screening programs, preventive and management therapies, and other comprehensive treatment programs like bone marrow transplant and hydroxyurea therapy (Mulumba & Wilson, 2015). Many of these therapies can assist SCD patients in Africa and Ghana in the same ways. Homozygous SCD, indicated by the presence of two copies of globin S mutation is the most prevalent subtype of SCD in the world and codes for sickle cell hemoglobin (Hb S). Sickle cell anemia, Hb SS, SS disease, and sickle cell disease-SS are names used to describe homozygous SCD (Piel et al., 2010) although sickle cell disease and sickle cell anemia (Hb SS) are not the same, as sickle cell anemia is a form of SCD. In low-altitude equatorial parts of Africa, SS is most frequent, followed by SC as the second SCD subtype frequently found in Africa. People of West African descent almost exclusively carry the "C" allele, which is most prevalent in Burkina Faso and northern Ghana (Grosse et al., 2011). Another form or subtype of SCD is beta thalassemia (Sβ+-thalassemia) which is very rare in most parts of sub-Saharan Africa (Modell & Darlison, 2008). About 60,000 of the babies born globally with sickle cell disease each year have beta thalassemia with 1500 of them coming from Africa (Fattoum, 2009). The incidence rate of SCD in a population is determined by the proportion of carriers present in that population (Weatherall & Clegg, 2001). According to Anie et al. in 2010, the proportion of healthy carriers i.e. people living with sickle cell trait ranges between 10% to 40% across Equatorial Africa and declines to about 1% to 2% in Northern Africa and below one percent in Southern Africa (Anie et al., 2010). In West African countries like Ghana and Nigeria, carriers are 15% to 30% more frequent than they are in countries like Uganda and Tanzania in Eastern Africa (World Health Organisation, 2006). As carriers tend to be protected against malaria- related mortality and hence have increased survival and consequently continuous transmission University of Ghana http://ugspace.ug.edu.gh 10 of the HbS gene, it is believed that this distribution in Ghana and Nigeria reflects present or historical exposure to plasmodium malaria infection (Anie et al., 2010). 2.3 Knowledge of Sickle Cell Disease 2.3.1 Causes of SCD Sickle hemoglobin (HbS) is an abnormal form of adult hemoglobin that results from a mutation in the HBB gene and is passed down through an autosomal recessive Mendelian gene (Piel et al, 2013). Unlike normal hemoglobin-containing red blood cells which are round in shape, smooth, and flexible, red blood cells with sickle hemoglobin are very stiff and sticky in nature and take the form of a crescent moon or sickle when they run out of oxygen thereby obstructing blood arteries and causing pain as a result (John Hopkins medicine, 2022). The disease is passed on when one inherits two sickle cell genes, one from each parent. If a person inherits just one gene from a parent, that person is known as a carrier or someone with the sickle cell trait (SCT) and has a 1 in 4 chance of giving birth to a child with the disease if he or she has that child with another carrier (Mulumba & Wilson, 2015). In a study conducted in 2018 in Ghana by Boadu and Addoah, almost all 350 respondents who took part in the study were aware of the disease with 48% of them believing that the disease was obtained by inheriting the SCD genes from both parents. It was also established by the authors through the responses gathered that a high level of education was significantly associated with higher knowledge levels of SCD (Aboagye & Aboagye, 2019). A similar study by Orish et al., 2014 with the title “Evaluating the knowledge of sickle cell disease and hemoglobin electrophoretic patterns among people living in Sekondi-Takoradi Metropolis, Ghana” indicated that males, married couples especially those with children, and older individuals were more likely to have good knowledge on SCD as compared to females, singles and younger individuals. With the general knowledge levels of individuals toward SCD, studies by Uche et al, (2017) and Boadu & Addoah, (2018) reported an overall fair knowledge and a poor knowledge of students toward SCD respectively. University of Ghana http://ugspace.ug.edu.gh 11 2.3.2 Symptoms of SCD Symptoms of SCD include anemia which occurs as a result of the short-lived nature of sickle- shaped cells which causes a shortage of red blood cells in the body and leads to exhaustion, dizziness, and shortness of breath. Another symptom that can be fatal is acute chest syndrome. It arises mainly when sickle cells stick together and block the flow of oxygen to the lungs (Rees et al., 2010). Due to the shorter lifespan of sickle cells than typical red blood cells, they degenerate faster than the liver can remove them from the body. These disintegrated cells produce bilirubin, which accumulates in the body and gives these broken-down cells their yellow hue and causes jaundice. The most prevalent clinical symptom of this illness, however, is pain, which causes excruciating misery. SCD produces serious lifetime morbidity that necessitates frequent, extended hospital stays (Isah et al., 2016). Other symptoms include priapism, splenic sequestration, etc. (Chakravorty & Williams, 2015). In a study on the knowledge and home management strategies among caregivers in Northern Ghana, caregivers noted fever, difficulty in breathing, pain, swelling of the limbs, jaundiced eyes, and yellowish urine as some of the symptoms of SCD (Ajinkpang et al., 2022). 2.3.3 Diagnosis of SCD Sickle cell disease can be diagnosed with the aid of clinical laboratory tests. Both biochemical and molecular tests are run on blood samples for the detection of hemoglobin S, and diagnosis of SCD or SCT (Wajcman & Moradkhani, 2011). The full blood cell count, Hb electrophoresis, and high-performance liquid chromatography, regarded as the best for SCD diagnosis are the most commonly used biochemical and molecular tests (Fonseca et al., 2015). Newborn screening (NBS) is a successful, early diagnosis approach for enabling the start of penicillin prophylaxis, which guards against invasive, life-threatening pneumococcal infections (Rankine-Mullings & Owusu-Ofori, 2021). Additionally, NBS offers access to University of Ghana http://ugspace.ug.edu.gh 12 evidence-based clinical care, prompt enrollment of newborns in comprehensive care clinics, and effective healthcare education and counseling for families (Kato et al., 2018). Late diagnosis, which is more prevalent in sub-Saharan Africa (SSA), where the burden of SCD is the largest, results in severe morbidity and extremely high childhood mortality rates of up to 50–90% (Wastnedge et al., 2018). There continues to be potential for early SCD detection as part of a thorough, all-encompassing strategy, commencing with diagnosis and complication prevention in the newborn period and extending across the lifespan to prevent premature death. 2.3.4 Morbidities associated with SCD SCD is a chronic disease with several complications associated with it. These complications include musculoskeletal disorders, stroke, pulmonary hypertension, septicemia, and chronic pain. These complications frequently coexist, reducing the quality of life of patients and, if left untreated, increasing the risk of death (Mulumba & Wilson, 2015) with Stroke being the most critical complication due to vascular occlusion. In developed countries, people living with SCD have a 250-fold increased chance of having a stroke compared to people without the condition. An example is the United States where 24% of people who have SCD suffer a stroke at 45 years of age (Kolapo & Vento, 2011). Again, in the United States, about 30% of SCD patients suffer from pulmonary hypertension caused by chronic hemolysis which kills most patients after 3 years of diagnosis (Battersby et al., 2010). In a study conducted by Balogun et al. in 2010, out of 318 children with SCD in Nigeria, most of them who were below the age of 10 experienced multiple musculoskeletal disorders with 7.2% of them having avascular necrosis with femoral head, 63.3% with osteomyelitis and 95% of them having septic arthritis. Of those between the ages of 11 and 20, 5% had septic arthritis, 30.6% had osteomyelitis and 46.4% had avascular necrosis of the femoral head (Balogun et al., 2010). University of Ghana http://ugspace.ug.edu.gh 13 According to research found in articles published between 2005 and 2010, bacterial infections that induce septicemia are a major cause of morbidity and mortality for children with SCD in Africa, especially those under the age of two (Battersby et al., 2010; Booth et al., 2010, Williams et al., 2009). 2.3.5 Management of SCD The past 20-50 years have seen tremendous improvements in the management of SCD globally, in Africa, and Ghana (Campbell et al., 2022). The average life expectancy which was 14 years in the 1970s, is now 47 years (Lubeck et al., 2019; Campbell et al., 2022) as a result of the improvements in management practices. These practices have included drinking lots of water, the use of pain medication, intravenous infusions, folic acid, blood transfusions, and antibiotics (John Hopkins Medicine, 2022). Since the 1980s, novel approaches to sickle cell disease treatment have also included the implementation of penicillin prophylaxis for sickle cell children, the establishment of newborn screening programs, and the use of transcranial Doppler screening for the detection of cerebral vasculopathy and stroke prevention (Gardner, 2018). In the 1980s, hydroxyurea, the only medication that was found to effectively lower the frequency of unpleasant episodes was introduced into clinical practice for adults. It was designed as a cancer-fighting medication and has been used in the management of cancers like leukemia and ovarian cancer (McGann & Ware, 2015). In 1984, hydroxyurea was tested in sickle cell disease and was found to increase the hemoglobin level of sickle cell patients and their fetal hemoglobin (HbF), reduce their pain episodes by 50% as well as lower blood transfusion rates in adults by 50% (Agrawal et al., 2014). With increasing evidence of hydroxyurea's safety and efficacy in both adults and 50% of children, its use is increasing in both high- and low-income countries, but it remains underutilized (Piel et al., 2017). In November 2019, the government of Ghana partnered with Novartis, a Swiss-American multinational pharmaceutical company to improve and speed up treatment for SCD patients University of Ghana http://ugspace.ug.edu.gh 14 with the use of hydroxyurea (Novartis, 2019). On World Sickle Cell Day (June 19th) in 2021, Ghana’s government announced the provision of hydroxyurea for SCD patients through the National Health Insurance Scheme (Ohene-Frempong et al., 2022). The management of SCD includes disease prevention as a key component. One of the ways to prevent SCD is through premarital screening. Premarital screening, which forms a part of genetic counseling is a series of tests that are conducted for engaged couples in order to rule out any genetic or infectious ailments that might be passed to their offspring or each other throughout their marriage and also for them to have the right information to influence decision making where health is concerned (Rahman et al., 2014). In Ile-Ife (Nigeria), a study by Abioye-Kuteyi et al. (2009) found that one-fourth of married and soon-to-marry respondents were unaware of their partner's sickling status. According to one-third to two-thirds of the study participants, they would keep dating their partner regardless of the outcome of any premarital screening. Another study was conducted by Memish and Saeedi (2011) in Saudi Arabia on the effect of premarital and genetic counseling on SCD and B-thalassaemia throughout a six-year period (2004 to 2009) and at the end of the period, the results showed a reduction in the number of marriages that were at risk for producing SCD and B-thalassaemia offspring which meant that there will be less genetic diseases in the country in the coming years. Additionally, it was deduced that premarital screening has a greater advantage over newborn screening since it is a method for primary prevention (Memish & Saeedi, 2011). 2.4 Perception and Attitude toward SCD Being well-informed about sickle cell disease is a key component in its prevention and in treating people with the disease better. Although a study conducted in Nigeria among unmarried people indicated a high level of awareness of the disease, the majority of respondents lacked sufficient information about the illness (Adigwe, 2022). A study in Jos revealed that University of Ghana http://ugspace.ug.edu.gh 15 one-fourth of 137 students sampled mistakenly thought that sickle cell disease was brought on by evil spirits (Olakunle et al. 2013). Among the Igbo communities in Nigeria, the disease is believed to be the outcome of evil reincarnation (Anie, 2010). Another study in the Republic of Benin highlighted that the majority of the survey participants were aware that sickle cell disease is a blood disorder. However, there were some misconceptions, as a sizable portion incorrectly associated bacterial and viral infections with the condition. Other myths debunked by the study and other studies include the claims that sickle cell illness is contagious and that more than 80% of those who have it die before the age of 20 (Zounon et al., 2012; Lanzkron et al., 2013). The prevalence of these beliefs was higher among people who knew they had SCD or carried the gene than among people who did not. Again in Benin, people think that the illness is brought on by an evil spirit nibbling on their child's bones and seeking the assistance of a traditional healer for a cure (Rahimy et al., 2012). In Ghana, a qualitative study was conducted on caregivers to find out their perception of the disease. Results from this study showed that majority of the caregivers either didn't know the source of the ailment or believed that it was brought on by stomach worms that rendered individuals weak, in line with local superstitions and beliefs (Ajinkpang et al., 2022). Tusuubira et al. (2018) noted a generally negative perception displayed by participants in a study they conducted on SCD. In a similar research conducted by Boadu & Addoah (2018), most of the participants had a positive attitude toward SCD where 52.9% of the participants worried strongly about people with SCD. Other researches by Uche et al, (2017), Ameade et al, (2015) and Olatona et al, (2012) also reported that more than half of the participants were unwilling to continue relationships that would put them at risk of having children with SCD. University of Ghana http://ugspace.ug.edu.gh 16 2.5 Practices towards SCD Newborn screening is a low-cost intervention that decreases the rates of morbidity and mortality associated with sickle cell disease through early detection. In sub-Saharan Africa, there are no universal screening programs, and only a few hospitals and organizations are capable of carrying out screening for newborns despite the fact that the disease burden is high (Segbefia et al, 2021). In Africa, seven countries—Ghana, Kenya, Liberia, Nigeria, Uganda, Tanzania, and Zambia—participating institutions will receive standard-of-care screening and early intervention therapies made possible by a partnership between Novartis and ASH's Consortium on Newborn Screening in Africa (CONSA). CONSA conducts clinical follow-ups for infants with SCD and screens 10,000–16,000 newborns annually in each nation (Novartis, 2022). Preimplantation genetic diagnosis (PGD) identifies defective embryos early in the prenatal genetic diagnosis process so that only genetically healthy embryos are used for implantation (Parikh et al., 2018). Preimplantation genetic diagnosis (PGD) is now a viable option for couples who want to avoid pregnancy termination but are concerned about passing a known genetic disorder to their unborn child. Prenatal genetic diagnosis (PND) is not always acceptable due to moral and religious considerations; therefore, PGD may be a suitable substitute and can also be an effective method to increase the success rate of in vitro fertilization (Keshvar et al., 2022). In a study conducted on parents with SCD to find out their knowledge and awareness of PGD, only 16 (24%) of the 67 parents who responded to the survey had heard of preimplantation genetic testing (PGT) for SCD, 65 out of 67 parents (97%) said it was crucial or extremely crucial for parents of children with SCD to be aware of PGT and 29 out of 32 parents who are considering having more kids (91%) mentioned they would personally use PGT if it was covered by insurance (Attia et al., 2020). University of Ghana http://ugspace.ug.edu.gh 17 A more practical way which has been found to be more effective in decreasing the incidence of SCD than newborn screening and PGD (Memish & Saeedi, 2011) is by avoiding marriages or childbirth with partners whose genotypes puts one at risk of having SCD children. A research by Uche et al. (2017) reported that 79% of participants decided against marrying their partners if they were going to be put at risk of having SCD babies. Likewise, another study conducted by Olatona et al. (2012) on the effects of health education on knowledge and attitude toward SCD found a significant decrease in the proportion of participants who had agreed to marry their partners if they were both carriers and be childless after they had gained more insight on the disease. 2.6 Association between SCD status and Socio-demographic factors The clinical course and fate of SCD are strongly predicted by the sociodemographic characteristics of those who have the condition (Nwabuko et al., 2022). In evaluating the knowledge of sickle cell disease and hemoglobin electrophoretic pattern among people living in Sekondi-Takoradi Metropolis, Ghana by Orish et al, age, education, and marital status were associated with a better awareness of sickle cell disease status and genotype in this study. Older participants, as well as those who had tertiary education and married participants who had children of their own, knew their SCD status. The study also established that people's knowledge of SCD had a significant impact on them knowing their SCD status (Orish et al., 2014). Ameade et al, 2015 also found a significant association between gender and knowledge of SCD status. In the study, more females were aware of their SCD status than males which was linked to the fact that women who visited antenatal clinics during their pregnancies were tested for SCD and given information about it, which may have also had an impact on their knowledge of the condition. University of Ghana http://ugspace.ug.edu.gh 18 CHAPTER 3 METHODOLOGY 3.1 Introduction This chapter gives a detailed description of the methods used in successfully carrying out this study. Section one provides information on the study design used, section two describes the study area, section three talks about the study population, with its inclusion and exclusion criteria. The fourth section highlights the dependent and independent variables used in this study. Section five gives an overview of the sample size used and how it was calculated for the study and section six discusses the sampling technique used. Sections seven, eight and nine highlights how data were collected, the tools used in collection and where and how the pilot study for this research was conducted. Section ten entails information regarding the data analysis for this study, section eleven talks about quality control measures, section twelve about inform consent and section thirteen about voluntary participation. Section fourteen talks about confidentiality/privacy, section fifteen discusses Data storage and use and section sixteen talks about the plan for dissemination of results. The last sections, which are sections seventeen, eighteen and nineteen talks about ethical considerations, cost/compensations and conflict of interest respectively. 3.2 Study Design A descriptive cross-sectional study with a quantitative approach was adopted in this study to seek information on knowledge, perception, and practices regarding sickle cell disease among young adults living in Tema. This study design was used because it will help in analyzing information about a population at a specific time. This study is a social/behavioral research. University of Ghana http://ugspace.ug.edu.gh 19 3.3 Study Area Figure 3.1 A map of Tema Metropolis showing the communities where the study was carried out. Source: https://www.ghanadistricts.com/Home/LinkDataDistrict/5243 Tema is a city located in the Greater Accra region and the southeastern part of Ghana. It is located 25 kilometers east of Ghana’s capital, Accra. It is the capital of the Tema Metropolitan District and has a total population of about 196, 224 people with 96,846 males and 99,378 females based on 2021 statistics (Ghana Statistical Service, 2021). In 2013, Tema was ranked the eleventh most populous city in Ghana. It covers an area of 50.90𝑘𝑚2 with a population density of about 3,855/𝑘𝑚2 and has 25 communities. It is one of the major industrial hubs and it also houses the largest port in Ghana hence the nickname, “the harbor city”. Tema was built on a small fishing site where a local calabash plant named “Tor” was cultivated (Jackson & Oppong, 2014). It was initially named “Torman” after University of Ghana http://ugspace.ug.edu.gh https://www.ghanadistricts.com/Home/LinkDataDistrict/5243 20 which the name Tema was adopted. The city was commissioned by Osagyefo Dr. Kwame Nkrumah in 1961 by Ghana’s first president and expanded quickly after the harbor was built. Major industries in Tema include Ghana Textile Print (GTP), Tema Oil Refinery (TOR), Valco Aluminium Company (VALCO), Pioneer food company, Nestle Ghana Ltd, etc. Tema has a polyclinic and a general hospital among other health facilities. There are also several primary, junior and secondary schools as well as a few university campuses (Tema Metropolitan Assembly, 2021). Tema metropolitan forms part of the metropolis and municipal districts in the Greater Accra Region and shares boundaries with other municipal districts like Ledzokuku-Krowor, Ashaiman, Kpone Katamanso, and Adenta (Jackson & Oppong, 2014). 3.4 Study Population The population for this study consisted of young adults aged 18-40 years who were either local indigenes of Tema or had migrated to the city as a result of school, work, etc. The total number of young adults aged 18 to 40 years according to the 2021 population census is about 80,000 (City Population, 2021). 3.4.1 Inclusion Criteria All males and females who were 18 to 40 years old and live, school, or work in Tema and gave consent to participate in the study. 3.4.2 Exclusion Criteria All males and females who school, work, or reside in Tema but do not fall within the ages of 18 to 40 and all those who were unwilling to take part in the study even though they fell within the age bracket were excluded. University of Ghana http://ugspace.ug.edu.gh 21 3.5 Variables Dependent variables – Knowledge, attitude, perception, practices, and sickle cell disease. Independent variables – Socio-demographic factors like gender, age, marital status, religion, and cultural/ ethnic beliefs. 3.6 Sample Size Calculation A sample size is a fraction of a given population that serves as a representation of the entire populace, selected to partake in a study (Andrade, 2020). The sample size for this study was determined based on the Yamane, 1967 criterion (Umar & Wachiko, 2021): n= N 1+N(𝑒)2 Where: n = completed sample size needed N = size of the young adult population in Tema e = the level of precision. Therefore n= 80000 1+80000(0.05)2 n= 80000 201 n= 398.0099 = 399 = 400 Therefore, a sample of 400 people were selected as participants for the study. University of Ghana http://ugspace.ug.edu.gh 22 3.7 Sampling method A homogenous purposive sampling technique which is a non-probability quantitative sampling method was adopted in this study. This method was employed to find 16 volunteers each in the 25 communities in Tema who were 18 to 40 years and were willing and comfortable to participate in the study. 400 out of the 80,000 young adult population in Tema were sampled from churches, schools, marketplaces, hospitals, households, etc. in the various communities to take part in this study. 3.8 Data Collection A structured questionnaire was used as a means to gather data from young adults in Tema who fell within the inclusion criteria. The questionnaire was designed with clear response instructions and made easy to answer. The structured questionnaire was pre-tested in Ashaiman, a municipal district that shares boundaries with Tema to ensure the questions’ appropriateness, directions, and arrangement, as well as the content's comprehensiveness, technological feasibility, and clarity. The questionnaire required participants to anonymously complete questions related to their socio-demographics, knowledge, perception, attitude, and practices on Sickle cell disease. Participants were educated on the concept of the research and the potential benefits to the individuals and the metropolis as a whole if the study is successful. All participants’ consent was sought before issuing questionnaires for them to fill out. 3.9 Data Collection Tool The data collection instrument used for this study was a structured questionnaire. Previously published open-access studies with similar titles and objectives/ research questions served as a guide in constructing the data collection instrument which was used for this study and all adopted questions were duly cited. The structured questionnaire was divided into 5 sections. University of Ghana http://ugspace.ug.edu.gh 23 The first section examined the socio-demographic characteristics (sex, age, marital status, religion, occupation, etc) of young adults in Tema and also examined the prevalence of sickle cell disease among them. Section two examined the knowledge young adults in Tema have regarding SCD, section three looked at the perception of the study population toward SCD, the fourth section examined their attitude and the last section examined practices towards sickle cell disease. Scores between 0 and 0.5 were considered as poor knowledge, attitude, perception, and practices, while scores between 0.6 and 1 were considered as good knowledge, attitude, perception, and practices. All of the "Yes" responses were the appropriate answers to the questions posed, which were scored as either 1 for "Yes" responses or 0 for "No/I don't know" responses. The questionnaire can be found in appendix C. 3.10 Data Analysis The data obtained was analyzed for discussion using STATA-IC version 16.1 statistical software. Descriptive statistics on the independent variables (socio-demographic characteristics of participants) were presented in frequency tables, graphs, and summary statistics. The prevalence of SCD among young adults in Tema was calculated using proportions. Also, Logistic regression analysis was used to compute associations between the socio-demographic characteristics of participants and the knowledge of SCD, perception, attitude, and practices among young adults in Tema. The association between SCD status and socio-demographic characteristics of participants was also analysed using logistic regression. 3.11 Quality Control Measures The data collection tool which is the questionnaire was pretested in the Ashaiman community to ensure the quality of the data. This helped in the determination of how clear the questions University of Ghana http://ugspace.ug.edu.gh 24 were to the participants and also helped in identifying inconsistencies that arose during the collection of data. Data was checked for errors after every data collection session. Two research assistants were recruited and trained to assist in the data collection process as well. 3.12 Ethical Considerations Approval for this study was sought from the Institutional Review Board of the Noguchi Memorial Institute for Medical Research. All participants received a detailed explanation that included the purpose of the study and its methods. Written informed consent was taken from each participant. The study conserved participants’ privacy and maintained the confidentiality of the data. Permission was also sought from the authorities of selected schools, health facilities and churches before sampling of participants and administering of questionnaires. 3.12.1 Inform consent Prior to the collection of data, informed consent was sought from each participant. All participants were expected to select the Yes box to confirm consent before filling out both the e-questionnaires and hard copies. 3.12.2 Voluntary participation Participants were informed about their option to withdraw from the study even after providing their initial consent. Participants were also in33formed that their withdrawal from the study had no negative consequences. 3.12.3 Confidentiality and privacy Confidentiality and privacy was assured to the participants. All data gathered were made anonymous. Both the identity of the research participants and the confidentiality of the research data were guaranteed. University of Ghana http://ugspace.ug.edu.gh 25 3.12.4 Data storage and use Responses to online surveys were automatically saved in the Google Forms response folder. With the help of the two research assistants recruited, data from the in-person surveys on the other hand, were entered into the google forms response folder generated. The data was saved in Excel and stored on the laptop with a password only the researcher had access to and transferred to STATA version 16 for analysis. 3.13 Dissemination of Results Plan Findings from this study will be published as an article and also disseminated to the Ghana Health Service, Tema General Hospital, Ghana Institute of Clinical Genetics at the Korle Bu Teaching Hospital, and the University of Ghana, School of Public Health. 3.14 Cost /compensation This study was self-funded and there were no compensations or payments to participants. 3.15 Conflict of interest There were no potential conflicts of interest in the study. University of Ghana http://ugspace.ug.edu.gh 26 CHAPTER 4 RESULTS 4.1 Introduction This chapter presents the results according to the objectives of the research conducted on the knowledge, perception and practices of young adults in Tema toward sickle cell disease. The findings on the prevalence of SCD, awareness of sickle cell trait and disease, sources of information about SCD, knowledge of SCD, attitude toward SCD, perception and practices toward SCD as well as the association between socio-demographic characteristics and SCD status and knowledge of SCD have been represented in graphs and tables to give a clear overview of what this study sought to achieve. 4.2 Socio-demographic characteristics of participants Females were the majority of participants (56%) in the study. With participants’ ages ranging from 18 to 40 years, most of them were found to be within the 21 – 30 age group with the mean age being 27 years (standard deviation (SD) ±6). The majority of the participants were single (77%), and a greater percentage of them were Christians as well (78.8%). A higher proportion was of the Akan ethnicity (49.3%), followed by those belonging to the Ga ethnic group (18.5%). The majority of participants had also attained tertiary education (71%) and most of them were employed (80.5%). The majority of the participants (77.3%) had no biological children as shown in Table 4.1 below. University of Ghana http://ugspace.ug.edu.gh 27 Table 0.1 Socio-demographic characteristics of participants Variable Frequency Percentage (%) Gender Male 176 44 Female 224 56 Age (in years) Below 21 55 13.75 21 – 30 242 60.5 31 – 40 103 25.75 Marital status Single 308 77 Married 92 23 Religion Christian 315 78.75 Muslim 64 16 Other 21 5.25 Ethnicity Akan 197 49.25 Ewe 54 13.5 Ga 74 18.5 Mole- Dagbon 33 8.25 Other 42 10.5 Educational level No formal education 27 6.75 JHS 14 3.5 SHS 75 18.75 Tertiary 284 71 Occupation Employed 322 80.5 Unemployed 78 19.5 Biological child Has biological children 91 22.75 Has no biological children 309 77.25 Total 400 100 University of Ghana http://ugspace.ug.edu.gh 28 4.3 Prevalence of SCD As shown in Figure 4.1 below, the prevalence of Sickle Cell Disease among participants was 9%. Figure 0.1 Prevalence of Sickle Cell Disease among participants 4.3 Awareness of Sickle Cell Disease and Sickle Cell Trait Majority of the participants (94.8%) had heard of SCD and hence were aware of the disease as shown in figure 4.2 below. Figure 0.2 Participants’ awareness of Sickle Cell Disease. University of Ghana http://ugspace.ug.edu.gh 29 As shown in figure 4.3, a higher proportion of the participants (69.8%) indicated that they have heard of Sickle Cell trait. Figure 0.3 Sickle Cell trait awareness of participants 4.4 Sources of Information about Sickle Cell Disease Health professionals serve as source of information of SCD for half of the participants (50%), followed by internet (44.8%) and then friends/family (39.5%) as shown in Table 4.2. Table 0.2 Sources of information about SCD Variable Frequency Percentage (%)ψ Source of information about SCD TV/radio 114 28.5 Internet 179 44.8 Friends/family 158 39.5 Health professionals 200 50.0 Other 82 20.5 ψ Multiple responses, percentages represent percentage of cases University of Ghana http://ugspace.ug.edu.gh 30 4.5 Knowledge of Sickle Cell Disease Majority of the participants (72.5%) correctly indicated the cause of SCD as being genetically inherited. In addition, majority (75.5%) correctly indicated the use of blood test as a way of diagnosing SCD, while most (69.5%) correctly indicated that, SCD is preventable. 73.8% of the participants correctly indicated genetic counselling/pre-marital screening as a way of prevention. 134 participants (33.5%) correctly predicted that, there will be no chance of having healthy children by parents who both have SCD as shown in table 4.3 below. Table 0.3 Knowledge of SCD Variable Frequency Percentage (%) Cause of SCD Acquired 45 11.25 Family curse 7 1.75 Spiritual attack 6 1.5 Genetically inherited 290 72.5 Don't know 52 13 How SCD is diagnosed Blood test 302 75.5 Urine test 18 4.5 Don't know 80 20 Preventability of SCD Preventable 278 69.5 Not preventable 40 10 Don't know 82 20.5 Way of SCD prevention Genetic counselling/Pre-marital screening 295 73.75 Abortion 15 3.75 Don't know 90 22.5 Chance of having healthy baby with SCD parents 100% 37 9.25 50% 27 6.75 25% 84 21 No chance 134 33.5 Don't know 118 29.5 Total 400 100 University of Ghana http://ugspace.ug.edu.gh 31 Frequent sickness was known to majority of the participants (77.3%) as a sign/symptom of Sickle Cell Disease, followed by skinny body (28.0%) as shown in table 4.4 below. Table 0.4 Knowledge of Signs/ Symptoms of SCD Variable Frequency Percentage (%)ψ Signs/ Symptoms of SCD Skinny body 112 28.0 Frequent sickness 309 77.3 Yellow eyes 109 27.3 Don’t know 56 14.0 ψ Multiple responses, percentages represent percentage of cases Majority of the participants (73.5%) had good knowledge of SCD as shown in figure 4.4 below. Figure 0.4 Overall knowledge of Sickle Cell Disease of participants 4.6 Attitude towards Sickle Cell Disease About half of the participants (50.2%) agreed that, there should be a feeling of sympathy for people with SCD, while few of the participants (37.8%) disagreed saying that, people should worry less about those living with SCD since they may die soon. Exactly half of the participants (50%) agreed that, a relationship should be ended if partner’s genotype will risk having a child University of Ghana http://ugspace.ug.edu.gh 32 with Sickle Cell Disease. Very few of the participants (6.5%) agreed that, they would choose not to have a child than to have a baby with SCD as shown in table 4.5 below. Table 0.5 Attitude towards Sickle Cell Disease Variable Frequency Percentage (%) Feel sympathetic for people with SCD Agree 201 50.25 Disagree 199 49.75 Worry less about people with SCD since they may die soon Agree 249 62.25 Disagree 151 37.75 End relationship if partner's genotype risks having SCD child Agree 200 50 Disagree 200 50 Choose not to have a child than have SCD baby Agree 26 6.5 Disagree 374 93.5 Total 400 100 Overall, majority of participants (86.3%) have poor attitude towards SCD as shown in figure 4.5 below. Figure 0.5 Overall Attitude of participants towards Sickle Cell Disease University of Ghana http://ugspace.ug.edu.gh 33 4.7 Perception about Sickle Cell Disease A higher proportion of participants (56.3%) agreed that, a person with SCD can work, while 52.5% also agreed that, a person with SCD can school. Most participants (54%) agreed that, a person with SCD can live a normal life, while few (23.3%) disagreed that, a person with SCD cannot live long. Less than half of the participants (47.8%) disagreed that, people with SCD are disabled, while also only 42% disagreed that, people with SCD are abnormal. About one- third of the participants (30.8%) disagreed that, people with SCD are not to be treated as normal people as shown in table 4.6 below. Table 0.6 Perception about Sickle Cell Disease Variable Frequency Percentage (%) One with SCD can work Agree 225 56.25 Disagree 175 43.75 One with SCD can school Agree 210 52.5 Disagree 190 47.5 One with SCD can live normal life Agree 216 54 Disagree 184 46 One with SCD cannot live long Agree 307 76.75 Disagree 93 23.25 People living with SCD are disabled Agree 209 52.25 Disagree 191 47.75 People living with SCD are abnormal Agree 232 58 Disagree 168 42 SCD patients are not to be treated as normal people Agree 277 69.25 Disagree 123 30.75 Total 400 100 University of Ghana http://ugspace.ug.edu.gh 34 Overall, majority of participants (60.7%) had poor perception about SCD as shown in figure 4.6. Figure 0.6 Overall Perception of Participants about SCD 4.8 Practices towards Sickle Cell Disease A higher proportion of participants (54.5%) had tested for SCD. Majority of participants (76%) indicated that, knowledge of partners’ genotype influenced or will influence their decision to marry said partner. Majority (72.8%) were not willing to continue a relationship if it poses a risk of having SCD baby as shown in Table 4.7. Table 0.7 Practices towards SCD Variables Frequency Percentage (%) Ever tested for SCD Ever tested 218 54.5 Never tested 182 45.5 Knowledge of partner's genotype influence marriage decision Knowledge influenced/will influence decision 304 76 Knowledge didn't/wont influence decision 96 24 Willing to continue relationship despite risk of having SCD baby Willing 109 27.25 Not willing 291 72.75 Total 400 100 University of Ghana http://ugspace.ug.edu.gh 35 Figure 4.7 below shows that, of those who have ever tested for SCD, 28.4% were influenced by health issues, followed by curiosity (27.5%). Figure 0.7 Factors influencing participants’ decision to test for SCD 4.9 Bivariate association between overall knowledge of Sickle Cell Disease and Socio-demographic characteristics There was significant difference between participants who had poor knowledge and those who had good knowledge of SCD based on age (χ2= 18.10, p<0.0001), religion (χ2= 36.51, p<0.0001), ethnicity (χ2= 32.72, p<0.0001), educational level (χ2= 82.83, p<0.0001) and occupation (χ2= 4.39, p=0.036). There was however, no significant difference among participants based on gender (χ2= 0.01, p=0.935), marital status (χ2= 0.50, p=0.481) and whether or not parent has biological child (χ2= 0.33, p=0.568) as indicated below in Table 4.8. University of Ghana http://ugspace.ug.edu.gh 36 Table 0.8 Bivariate association between overall knowledge of SCD and Socio- demographic characteristics Level of knowledge of SCD Variable Poor knowledge Good knowledge Total χ2 p-value N (%) N (%) N (%) Gender 0.01 0.935 Male 47 (44.3) 129 (43.9) 176 (44) Female 59 (55.7) 165 56.1) 224 (56) Age (in years) 18.10 <0.0001* Below 21 8 (7.5) 47 (16) 55 (14) 21 – 30 55 (51.9) 187 (63.6) 242 (61) 31 – 40 43 (40.6) 60 (20.4) 103 (26) Marital status 0.50 0.481 Single 79 (74.5) 229 (77.9) 308 (77) Married 27 (25.5) 65 (22.1) 92 (23) Religion 36.51 <0.0001* Christian 62 (58.5) 253 (86.1) 315 (79) Muslim 35 (33) 29 (9.9) 64 (16) Other 9 (8.5) 12 (4.1) 21 (5.3) Ethnicity Akan 34 (32.1) 163 (55.4) 197 (49) 32.72 <0.0001* Ewe 18 (17) 36 (12.2) 54 (14) Ga 18 (17) 56 (19) 74 (19) Mole-Dagbon 20 (18.9) 13 (4.4) 33 (8.3) Other 16 (15.1) 26 (8.8) 42 (11) Educational Level 82.83 <0.0001* No formal education 8 (7.5) 19 (6.5) 27 (6.8) JHS 11 (10.4) 3 (1) 14 (3.5) SHS 45 (42.5) 30 (10.2) 75 (19) Tertiary 42 (39.6) 242 (82.3) 284 (71) Occupation 4.39 0.036* Employed 78 (73.6) 244 (83) 322 (81) Unemployed 28 (26.4) 50 (17) 78 (20) Biological child 0.33 0.568 Has biological children 22 (20.8) 69 (23.5) 91 (23) Has no biological children 84 (79.2) 225 (76.5) 309 (77) *Statistical significance, p<0.05 University of Ghana http://ugspace.ug.edu.gh 37 4.10 Multiple logistic regression analysis of the association between socio-demographic factors and knowledge of Sickle Cell Disease Table 4.9 shows multiple logistic regression analysis of the association between socio- demographic factors (gender, age, religion, ethnicity, educational level, and occupation) and knowledge of SCD. From the crude analysis, age, religion, ethnicity, educational level, and occupation were significantly associated with overall knowledge of SCD. However, after adjusting for gender, age, religion, ethnicity and occupation, participants who had acquired tertiary education were 3.35 times more likely to have good knowledge about SCD compared with those who had no formal education [AOR=3.35, CI= (1.32- 8.50), p value=0.011)]. Table 0.9 Multiple logistic regression analysis of the association between socio- demographic factors and knowledge of Sickle Cell Disease Variable OR (95% CI) p-value AOR (95% CI) p-value Gender 0.935 Male reference reference Female 1.02 (0.65-1.59) 0.87 (0.51-1.49) 0.615 Age (in years): <0.001* Below 21 reference reference 21 - 30 0.58 (0.26-1.30) 0.73 (0.28- 1.93) 0.525 31 - 40 0.23 (0.10-0.55) 0.38 (0.13-1.14) 0.083 Religion <0.0001* Christian reference reference Muslim 0.20 (0.12-0.36) 0.52(0.23-1.19) 0.121 Other 0.32 (0.13-0.81) 0.92 (0.31-2.76) 0.879 Ethnicity <0.0001* Akan reference reference Ewe 0.42 (0.21-0.82) 0.63 (0.28-1.42) 0.265 Ga 0.65 (0.34-1.24) 0.83 (0.38-1.85) 0.655 Mole-Dagbon 0.14 (0.06-0.30) 0.50 (0.16-1.55) 0.230 Other 0.34 (0.16-070) 0.74 (0.29-1.91) 0.539 Educational level <0.0001* No formal education reference reference JHS 0.11 (0.03-0.53) 0.25 (0.05-1.22) 0.087 SHS 0.28 (0.11-0.72) 0.44 (0.16- 1.20) 0.109 Tertiary 2.43 (1.00-5.90) 3.35 (1.32- 8.50) 0.011* Occupation 0.038* Employed reference reference Unemployed 0.57 (0.34-0.97) 0.62 (0.32-1.18) 0.147 *Statistical significance, p<0.05, OR=Crude Odds Ratio, AOR=Adjusted Odds Ratio University of Ghana http://ugspace.ug.edu.gh 38 4.11 Bivariate association between overall attitude towards Sickle Cell Disease and Socio-demographic characteristics From the results (Table 4.10), there was no significant difference between participants who had poor attitude and those who had good attitude towards SCD based on sociodemographic characteristics such as; gender (χ2= 0.28, p=0.599), age (χ2= 2.43, p=0.297), marital status (χ2= 0.66, p=0.417), religion (χ2=0.51, p=0.775), ethnicity (χ2= 1.27, p=0.867), educational level (χ2=1.25, p=0.74) occupation (χ2= 0.07, p=0.79), and whether or not parent has biological child (χ2= 0.27, p=0.606). Table 0.10 Bivariate association between overall attitude towards SCD and Socio- demographic characteristics Attitude towards SCD Variable Poor attitude Good attitude Total χ2 p-value N (%) N (%) N (%) Gender 0.28 0.599 Male 150 (43.5) 26 (47.3) 176 (44) Female 195 (56.5) 29 (52.7) 224 (56) Age (in years) 2.43 0.297 Below 21 51 (14.8) 4 (7.3) 55 (13.8) 21 – 30 205 (59.4) 37 (67.3) 242 (60.5) 31 – 40 89 (25.8) 14 (25.5) 103 (25.8) Marital status 0.66 0.417 Single 268 (77.7) 40 (72.7) 308 (77) Married 77 (22.3) 15 (27.3) 92 (23) Religion 0.51 0.775 Christian 272 (78.8) 43 (78.2) 315 (78.8) Muslim 54 (15.7) 10 (18.2) 64 (16) Other 19 (5.5) 2 (3.6) 21 (5.3) Ethnicity 1.27 0.867 Akan 172 (49.9) 25 (45.5) 197 (49.3) Ewe 47 (13.6) 7 (12.7) 54 (13.5) Ga 64 (18.6) 10 (18.2) 74 (18.5) Mole-Dagbon 28 (8.1) 5 (9.1) 33 (8.3) Other 34 (9.9) 8 (14.5) 42 (10.5) Educational level 1.25 0.74 No formal education 22 (6.4) 5 (9.1) 27 (6.8) University of Ghana http://ugspace.ug.edu.gh 39 JHS 13 (3.8) 1 (1.8) 14 (3.5) SHS 66 (19.1) 9 (16.4) 75 (18.8) Tertiary 244 (70.7) 40 (72.7) 284 (71) Occupation 0.07 0.79 Employed 277 (80.3) 45 (81.8) 322 (80.5) Unemployed 68 (19.7) 10 (18.2) 78 (19.5) Biological child 0.27 0.606 Has biological children 77 (22.3) 14 (25.5) 91 (22.8) Has no biological children 268 (77.7) 41 (74.5) 309 (77.3) *Statistical significance, p<0.05 4.12 Multiple logistic regression analysis of the association between socio-demographic factors associated with attitude towards Sickle Cell Disease Table 4.11 shows multiple logistic regression analysis of the association between socio- demographic factors (Gender, age, marital status, religion, ethnicity, educational level, occupation and biological child) and attitude towards SCD. From both the crude and adjusted analysis there was no significant association between overall attitude towards SCD and sociodemographic factors (i.e., Gender, age, marital status, religion, ethnicity, educational level, occupation and biological child). Table 0.11 Multiple logistic regression analysis of the association between socio- demographic factors and attitude towards Sickle Cell Disease Variable OR (95% CI) p-value AOR (95% CI) p-value Gender 0.599 Male reference reference Female 0.85(0.48-1.52) 0.92(0.51- 1.66) 0.782 Age (in years): 0.312 Below 21 reference reference 21 - 30 2.30(0.78-6.75) 2.10(0.67- 6.58) 0.204 31 - 40 2.01(0.63-6.42) 1.71(0.46-6.44) 0.425 Marital status 0.419 Single reference reference Married 1.31(0.68- 2.49) 1.31(.44- 3.93) 0.630 Religion 0.7777 Christian reference reference Muslim 1.17(0.55-2.47) 0.98(0.36-2.72) 0.984 Other 0.67 (0.14-2.96) 0.55 (0.11-2.80) 0.474 Ethnicity 0.870 University of Ghana http://ugspace.ug.edu.gh 40 Akan reference reference Ewe 1.02(0.42-2.52) 0.91(0.35-2.39) 0.862 Ga 1.08(0.49-2.36) 0.97(0.41-2.30) 0.950 Mole-Dagbon 1.23(0.43-3.48) 1.35(0.34-5.38) 0.668 Other 1.62(0.67-3.89) 1.74(0.61-4.96) 0.296 Educational level 0.748 No formal education reference reference JHS 0.33(0.04-3.22) 0.34(0.03-3.45) 0.359 SHS 0.6(0.18-1.98) 0.64(0.18-2.26) 0.487 Tertiary 0.72(0.25-2.01) 0.81(0.27-2.38) 0.707 Occupation 0.791 Employed reference reference Unemployed 0.91(0.43-1.89) 1.00(0.44-2.24) 0.996 Biological child 0.607 Has biological children reference reference Has no biological children 1.19(0.62-2.29) 0.97(0.32- 2.93) 0.963 OR=Crude Odds Ratio, AOR=Adjusted Odds Ratio 4.13 Bivariate association between overall perception about SCD and Socio-demographic characteristics Results in Table 4.12 shows that, there was significant difference between participants who had poor perception and those who had good perception about SCD based on marital status (χ2= 7.02, p=0.008) and whether or not parent had biological child (χ2= 6.31, p=0.012). There was however, no significant difference between participants who had poor perception and those who had good perception about SCD based on gender (χ2= 0.04, p=0.849), age (χ2= 1.15, p=0.562), religion (χ2=2.49, p=0.289), ethnicity (χ2= 1.01, p=0.908), educational level (χ2=4.11, p=0.25) and occupation (χ2=0.38, p=0.538). Table 0.12 Bivariate association between overall perception about SCD and Socio- demographic characteristics Perception about SCD Variable Poor perception Good perception Total χ2 p-value N (%) N (%) N (%) Gender 0.04 0.849 Male 106 (43.6) 70 (44.6) 176 (44) Female 137 (56.4) 87 (55.4) 224 (56) University of Ghana http://ugspace.ug.edu.gh 41 Age (in years) 1.15 0.562 Below 21 34 (14) 21 (13.4) 55 (13.8) 21 – 30 151 (62.1) 91 (58) 242 (60.5) 31 – 40 58 (23.9) 45 (28.7) 103 (25.8) Marital status 7.02 0.008* Single 198 (81.5) 110 (70.1) 308 (77) Married 45 (18.5) 47 (29.9) 92 (23) Religion 2.49 0.289 Christian 188 (77.4) 127 (80.9) 315 (78.8) Muslim 44 (18.1) 20 (12.7) 64 (16) Other 11 (4.5) 10 (6.4) 21 (5.3) Ethnicity 1.01 0.908 Akan 119 (49) 78 (49.7) 197 (49.3) Ewe 32 (13.2) 22 (14) 54 (13.5) Ga 43 (17.7) 31 (19.7) 74 (18.5) Mole-Dagbon 21 (8.6) 12 (7.6) 33 (8.3) Other 28 (11.5) 14 (8.9) 42 (10.5) Educational level 4.11 0.25 No formal education 15 (6.2) 12 (7.6) 27 (6.8) JHS 12 (4.9) 2 (1.3) 14 (3.5) SHS 44 (18.1) 31 (19.7) 75 (18.8) Tertiary 172 (70.8) 112 (71.3) 284 (71) Occupation 0.38 0.538 Employed 198 (81.5) 124 (79) 322 (80.5) Unemployed 45 (18.5) 33 (21) 78 (19.5) Biological child 6.31 0.012* Has biological children 45 (18.5) 46 (29.3) 91 (22.8) Has no biological children 198 (81.5) 111 (70.7) 309 (77.3) 4.14 Multiple logistic regression analysis of the association between socio-demographic factors and perception about SCD Results in Table 4.13 shows multiple logistic regression analysis of socio-demographic factors (marital status, biological children, gender, age and educational level) and perception about SCD. The analysis showed that, there was no significant association between marital status, biological child, gender, age and educational level and overall perception of participants about SCD. University of Ghana http://ugspace.ug.edu.gh 42 Table 0.13 Multiple logistic regression analysis of the association between socio- demographic factors and perception about SCD Variable OR (95% CI) p-value AOR (95% CI) p-value Marital status < 0.009* Single reference reference Married 1.88(1.17- 3.01) 1.59 (0.75- 3.37) 0.230 Biological children 0.013* Has biological children reference reference Has no biological children 0.55(0.34-0.88) 1.28(0.61-2.69) 0.521 Gender 0.850 Male reference reference Female 0.96(0.64-1.44) 0.98(0.65-1.49) 0.941 Age (in years) 0.563 Below 21 reference reference 21 – 30 0.98(0.53-1.78) 0.86(0.47-1.60) 0.645 31 – 40 1.26(0.64-2.45) 1.08(0.53- 2.19) 0.825 Educational level 0.311 No formal education reference reference JHS 0.21(0.04-1.12) 0.20(0.04-1.09) 0.062 SHS 0.88(0.36-2.14) 0.92(0.37-2.28) 0.853 Tertiary 0.81(0.37-1.80) 0.92(0.41-2.11) 0.861 *Statistical significance, p<0.05, OR=Crude Odds Ratio, AOR=Adjusted Odds Ratio 4.15 Bivariate association between Sickle Cell Disease status of participants and Socio-demographic factors Results in Table 4.14 shows that, there was a significant difference between participants who had Sickle Cell Disease and those who had no Sickle Cell Disease based on ethnicity (p=0.010), educational level (p=0.013) and whether or not parent had a biological child (χ2= 8.06, p=0.005). There was however, no significant difference among participants based on gender (χ2= 1.00, p=0.318), age (χ2= 4.07, p=0.131), marital status (χ2= 0.51, p=0.475), religion (p=0.204) and occupation (χ2= 0.79, p=0.373). University of Ghana http://ugspace.ug.edu.gh 43 Table 0.14 Bivariate association between Sickle Cell Disease status and Socio- demographic factors Sickle Cell Disease Variable SCD No SCD Total χ2 p-value N (%) N (%) N (%) Gender 1.00 0.318 Male 13 (36.1) 163 (44.8) 176 (44) Female 23 (63.9) 201 (55.2) 224 (56) Age (in years) 4.07 0.131 Below 21 1 (2.8) 54 (14.8) 55 (13.8) 21 – 30 24 (66.7) 218 (59.9) 242 (60.5) 31 – 40 11 (30.6) 92 (25.3) 103 (25.8) Marital status 0.51 0.475 Single 26 (72.2) 282 (77.5) 308 (77) Married 10 (27.8) 82 (22.5) 92 (23) Religion 0.204a Christian 26 (72.2) 289 (79.4) 315 (78.8) Muslim 6 (16.7) 58 (15.9) 64 (16) Other 4 (11.1) 17 (4.7) 21 (5.3) Ethnicity 0.010a* Akan 11 (30.6) 186 (51.1) 197 (49.3) Ewe 4 (11.1) 50 (13.7) 54 (13.5) Ga 7 (19.4) 67 (18.4) 74 (18.5) Mole-Dagbon 4 (11.1) 29 (8) 33 (8.3) Other 10 (27.8) 32 (8.8) 42 (10.5) Educational level 0.013a* No formal education 3 (8.3) 24 (6.6) 27 (6.8) JHS 5 (13.9) 9 (2.5) 14 (3.5) SHS 7 (19.4) 68 (18.7) 75 (18.8) Tertiary 21 (58.3) 263 (72.3) 284 (71) Occupation 0.79 0.373 Employed 31 (86.1) 291 (79.9) 322 (80.5) Unemployed 5 (13.9) 73 (20.1) 78 (19.5) Biological child 8.06 0.005* Has no biological children 21 (58.3) 288 (79.1) 309 (77.3) Has biological children 15 (41.7) 76 (20.9) 91 (22.8) *Statistical significance, p<0.05; aFisher’s exact test (expected cell count<5) 4.16 Multiple logistic regression analysis of the association between socio-demographic factors and Sickle Cell Disease status of participants Results in Table 4.15 shows multiple logistic regression analysis of the association between socio-demographic factors (ethnicity, educational level, biological children, gender and age) University of Ghana http://ugspace.ug.edu.gh 44 and Sickle Cell Disease status of participants. From the adjusted analysis, ethnicity and biological children were significantly associated with Sickle Cell Disease status of participants. After adjusting for educational level, biological children, gender and age, participants who belonged to other ethnic groups (other than the four listed), were 5.58 times more likely to have SCD compared to those who belonged to Akan ethnicity [AOR=5.58, CI= (1.90- 16.30), p value=0.002)]. Also, after adjusting for ethnicity, educational level, gender and age, participants who had biological children were 2.99 times more likely to have SCD compared to those who had no biological children [AOR=2.99, CI= (1.35-6.59), p value=0.007)]. Table 0.15 Multiple logistic regression analysis of the association between socio- demographic factors and Sickle Cell Disease status of participants Variable OR (95% CI) p-value AOR (95% CI) p-value Ethnicity 0.012* Akan reference reference Ewe 1.35 (0.41- 4.43) 0.92(0.26-3.24) 0.895 Ga 1.77 (0.66-4.74) 1.54(0.54-4.39) 0.419 Mole-Dagbon 2.33 (0.70-7.82) 1.74(0.44-6.86) 0.431 Other 5.28 (2.07-13.46) 5.58(1.90- 16.30) 0.002* Educational level 0.015* No formal education reference reference JHS 4.44(0.88-22.54) 5.42(0.86-34.26) 0.072 SHS 0.82(0.20- 3.44) 0.79(0.17-3.74) 0.771 Tertiary 0.63(0.18- 2.30) 0 .80(0.20-3.15) 0.745 Biological children 0.006* Has no biological children reference reference Has biological children 2.71(1